Improving support and planning ahead for older people with learning disabilities and family carers: a mixed-methods study

Learning disabilities and ‘behaviours that challenge others’

We start this report with a note about terminology. Language and definitions of ‘learning disability’ have remained ‘remarkably unstable’ over time, and who is defined as belonging to this group changes ‘due to cultural and social ideas around what constitutes mental faculty’. 18 A static, medicalised model focusing on deficit remains dominant:

A significantly reduced ability to understand new or complex information and to learn and apply new skills (impaired intelligence). This results in a reduced ability to cope independently (impaired social functioning), and begins before adulthood, with a lasting effect on development.

World Health Organization19

The impact of being labelled as having a learning disability can be considerable, as the term remains associated with stigma and shame,20 demonstrated by the speed at which medical terminology translates into lay terms of abuse. 21 While the term ‘intellectual disabilities’ is widely used internationally, evidence suggests that in the UK it generates scepticism and a sense of stepping back in time. 22 Here we use the term learning disabilities and PWLD as a shortened version for pragmatic reasons.

The term ‘challenging behaviours’ is also contested, and we use ‘BTCO’ to acknowledge the inherently relational and socially constructed nature of this concept. 23,24 ‘BTCO’ are a product of environmental factors including responses of support workers and family members, the quality of the material environment and commissioning processes, how well a service is organised and led, and earlier events in someone’s life which may have been traumatic. 23,25 Mansell23 acknowledges that behaviours may be a way to self-soothe or communicate that may remain even with excellent support. The question then becomes in what contexts and by whom are these behaviours considered to be ‘challenging’, and how can support staff, services, families and wider society adapt to this while keeping the person (and others) safe?

While policy and guidance across the UK over 30 years have stressed the socially constructed nature of ‘BTCO’, the term continues to be used to label people,23 enhance the legitimacy of a service, justify service practices or empower management decisions. 26 It can further disrupt the health care that people receive, as symptoms of pain or serious illness can be attributed to ‘BTCO’, leading to misdiagnosis and premature death. 27,28 In this report, we engage with this concept critically to ensure that we do not legitimise or justify certain practices of labelling people in ways that take attention away from the distress they might be experiencing and shift it onto procedures of managing this distress, as opposed to addressing its causes. A large-scale longitudinal Irish study with a nationally representative sample of PWLD aged > 40 years found that > 50% of older PWLD display what the authors describe as ‘problem behaviours’, and these are associated with a psychiatric diagnosis and high rates of psychotropic medication. 29 Concerns have been raised about potentially inappropriate prescribing in older PWLD that can be related to the label of ‘BTCO’. 29

Finally, our research focuses on PWLD aged ≥ 40 years in line with the above evidence that people may experience early onset of long-term conditions such as neurological, cardiovascular, respiratory and gastrointestinal disorders.

Resistance to future planning

We know that parents of PWLD are dissatisfied with statutory and private services and have concerns about the future caring responsibilities of their non-disabled adult children and their own ageing,30,31 although primary research on older family carers of PWLD is sparse in the UK. A body of policies and programmes in the UK, including Valuing People, Valuing People Now and Transforming Care, aimed to enable PWLD to lead independent supported lives. However, family carers remain committed to maintaining long-term care in the family home without support or confidence in existing services. In England in 2021–2, 36% of adults with learning disabilities aged 18–64 years getting long-term social care (47,835 people) were living with their families. 32 There is no equivalent information for PWLD aged ≥ 65 years. The government’s recent Building the Right Support Action Plan33 says very little about supporting people as they grow older.

Six studies were identified in one review34 that found themes of fear for the future, lack of trust in services, lack of proactive support to manage crises and transitions, and declining personal support networks in a period when they are most needed. A systematic review of qualitative studies focusing on the future planning of older family carers found three key themes; reservations about available services, mutual dependency and a sense of helplessness, and that parents were making plans or at least had some idea about what they would like to happen in the future. 35 The authors argue for clarity around who is responsible for starting conversations around the future and what the provider or local authority (LA) are doing, given that parents take responsibility for initiating and facilitating plans. The planning, if it is happening, is not being done early enough or with sufficient clarity. The review also found that the responsibilities of caring for and supporting PWLD do not necessarily end when the person moves from the family home. Gorfin and McGlaughlin36 talked with PWLD and found that participants were aware of the need to think about the future; however, the difficult prospect of leaving behind mutually caring relationships obstructed this.

Comprehensive National Institute for Health and Care Excellence (NICE) guidelines for supporting PWLD as they grow older exist, without consideration of ‘BTCO’, which has its own NICE guidance. 37,38 Recommendations include a multiagency plan to be in place and reviewed annually or as need arises and for health planning. The NICE review for the ‘BTCO’ guideline (to March 2017) includes seven studies that do not include older people. A qualitative synthesis of carer experience with services for this group found concerns about times of crisis and availability of suitable services in later life39 and asking for help from the local community can be particularly difficult for carers from ethnic minorities. 40

The little research that exists focuses on points of contact with health services as people get older, not about how health and social care services could work to support decisions about living arrangements and health services towards end of life (EOL). Studies of carer experience of palliative care, cancer and dementia41 found concerns about how to access palliative care services and how to communicate the prognosis and treatments required to families and to older PWLD with deteriorating health. Social care staff in palliative care settings with people with Down syndrome and dementia experienced dissonance between their enabling role supporting autonomy and their subsequent role of monitoring deteriorating health and diminishing skills. 42 Discrepant views can further exist between PWLD, their families and practitioners on EOLC. 43 In summary, the evidence base points to little focus on PWLD growing older.

Project rationale

We know little about the ageing of PWLD and ‘BTCO’, or how family carers manage their caring role as they themselves age. How can forward planning be introduced in an acceptable and reassuring way to older PWLD and family carers? How can health, social care and EOLC services effectively support carers and older PWLD including where active family involvement is absent? How can commissioners be innovative in developing a service infrastructure that better meets the needs of this group? This study explored the support and health needs of older PWLD and family carers to identify ways of easing the move to different homes and support services through planning ahead and reducing the distress and so-called ‘BTCO’.

Research questions

What are the information, health and social care support needs of family carers and older PWLD with ‘BTCO’ that enable effective forward planning around supported living and EOLC for older carers?

What are the characteristics of exemplars of good practice in services and support interventions in the UK for older PWLD (and their carers) towards EOL and how are they delivered?

Aim

The aim is to improve support for family carers and older PWLD (aged ≥ 40 years) with ‘BTCO’ by producing effective and workable recommendations and resources including EOLC planning for carers.

Objectives

1. To develop an understanding of existing evidence about the health (physical, mental and social) needs, service interventions and resources for family carers and older PWLD with a focus on those labelled with ‘BTCO’ who are moving to greater supported care, including EOLC [work package (WP) 1].

2. To identify exemplars of good practice in services and support interventions in the UK for older PWLD, and their family and professional carers, towards the EOL (WP2).

3. To explore how older PWLD and their carers can be better supported in later life by researching the commissioning and delivery of exemplar services using ethnographic case studies (WP3).

4. To co-produce decision aid tools to support future planning and EOLC discussions for carers and future planning for older PWLD and evaluate their initial use (WP4).

5. To co-produce actionable recommendations for commissioners and providers, resources and decision aids for carers and PWLD, and online training materials about care in later life for social workers and professional carers (WP5).

Review research questions

What are the health and social care needs, experiences, service interventions and resources of and for older PWLD and ‘BTCO’ as they move to different care contexts in the UK? (RR1)

What are the health and social care needs, experiences, service interventions and resources of and for family carers of older PWLD and ‘BTCO’ as they move to different care contexts in the UK? (RR2)

What enables the best co-ordination of care for older PWLD with ‘BTCO’ living in the community? (RR3)

Rapid scoping reviews: rationale

Systematic rapid scoping reviews were used because our review questions were inclusive and exploratory in nature, designed to capture evidence pertaining to multiple aspects of the health and social care needs and experiences of and service interventions and resources for older PWLD and family carers. Scoping reviews allow evidence drawn from diverse sources, which is typically heterogeneous in nature, to be systematically synthesised. 49 RRs are a streamlined and/or accelerated version of systematic reviews50 and are an increasingly accepted approach to evidence generation. 51,52

The reviews were reported according to the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) Checklist53 (see Report Supplementary Materials 1–4). We drew on relevant expert guidance. We used the SelecTing Approaches for Rapid Reviews (STARR)54 decision tool to help make broad decisions concerning the overall review process. Regarding specific methods, we drew on guidance from the Oxford Centre for Evidence Based Medicine52 and the World Health Organization. 55

Throughout the review process we consulted with the wider project team, the Professional Advisory Group and Public Advisory Group to ensure that the review remained relevant and useful. 51,52 The groups contributed ideas, discussed ongoing findings, and helped to ensure that the analysis was clear and relevant.

Eligibility criteria

We were interested in the nature and findings of evidence that could be used to draw conclusions about our topics of interest. Published and unpublished (grey) literature, including research articles, reports and policy and practice guidance, were included; discussion papers, position papers, expert opinion pieces, editorials and study protocols were excluded. Within the published research we included primary (using quantitative, qualitative and mixed methods) and secondary (e.g. review) level evidence. For pragmatic reasons, for RR1 and RR2 we included only literature written in English and related to the UK context. This was extended for RR3 to cover international literature written in English to increase the likelihood of retrieving relevant material. RR1 and RR2 included evidence from 2001 onwards, to coincide with the publication of the Valuing People White Paper,56 which included an explicit focus on the needs of older PWLD and people with ‘BTCO’. For RR3, we removed the date restrictions to increase the likelihood of returning relevant hits.

Table 1 sets out the focus of RR1, RR2 and RR3, using the Population, Concepts and Context framework. 57

Definitions

We defined older PWLD as aged ≥ 40 years, as described in Chapter 1. We adopted a broad and inclusive approach to ‘family carers’ but were particularly interested in the experiences of parents and siblings in alignment with the empirical WPs.

A wide-ranging definition of ‘care contexts’ was used, encompassing service model [independent supported living (ISL), nursing home or family home]; provider type (NHS/LA, private provider, third-sector organisation, family); relationships (family members, paid carers, personal assistants); place (the geographical location of care); and commissioning and funding arrangements such as personal budgets. We focused our search strategy on ‘challenging behaviour’, ‘ageing’ and ‘learning disability’ rather than specific conditions (e.g. dementia) and/or specific forms of behaviour (e.g. self-injury, violence) after an initial trial returned a vast number of returns unmanageable for a rapid scoping review (an initial scan also indicated that many returned items had no relevance to our research question). While we refer to ‘BTCO in our reporting for WP1 in line with the wider report (see discussion in Chapter 1), our search strategy included terms commonly used in the academic and grey literature, for example, ‘challenging behaviour’ and ‘behaviours of concern’. These are nebulous terms and definitions vary according to context, but they are broadly understood to be a form of communication and may refer to aggression, self-injury, stereotypic behaviour, withdrawal, and disruptive or destructive behaviour. 58

Information sources and search strategy

Database selection, search strategies and searches were undertaken with the support of a subject specialist librarian. Given the short timescale and consequent need to achieve a balance between sensitivity and specificity, we focused on priority information sources such as CINAHL (Cumulative Index to Nursing and Allied Health Literature), PsycInfo, SICEN and Scopus. For RR1 (conducted in 2020–1) we used CINAHL, Healthcare Management Information Consortium (HMIC), NHS Evidence, Scopus, Turning Evidence Into Practice (TRIP), Web of Science (WoS), Google (first five pages) and Google Scholar (first five pages); and then MEDLINE, CINAHL, PsycInfo, SCIE (Social Care Institute for Excellence), and Social Policy and Practice for the additional searches for EOLC in 2022. For RR2 (conducted in 2020–1), we used CINAHL, HMIC, NHS Evidence, TRIP, WoS, Google (first five pages), Google Scholar (first five pages), the Carer Research Knowledge Exchange Network (CAREN) and SCIE. For RR3 (conducted in 2022) we used MEDLINE, PsycInfo, CINAHL, SCIE and Social Policy and Practice.

In addition, we used the expertise of the project research team and advisory groups and hand-searched the reference lists of included documents.

For electronic databases, we generated search terms (words and phrases, including synonyms and terminology variations). These terms were combined using the Boolean operators ‘and/or’ and appropriate truncation and phrase symbols to form initial search strategies, which we piloted against selected key databases. Based on this exercise, we confirmed our final search strategies to be used for each of the databases. The same keywords as for the main search were used to search grey literature (see Report Supplementary Material 7).

Selection of sources of evidence

Electronic search data sets were imported into Microsoft Excel (Microsoft Corporation, Redmond, WA, USA) and duplicate records were removed prior to screening. For RR1 and RR2, two reviewers independently screened all returned titles and abstracts (where available) against the inclusion criteria. Three reviewers independently screened all returned titles and abstracts for the extended RR1 search on EOLC. For RR3, three reviewers independently screened a selection of 50 returned titles and abstracts and met to discuss decisions and agree criteria for inclusion. All three researchers screened the remaining articles and titles.

Any discrepancies or queries were discussed between the reviewers and, if necessary, with the wider review team.

Full-text copies of potentially relevant articles and reports were obtained. For each review, one researcher independently reviewed full texts, with other members of the team reading a selection. Articles or other sources of evidence excluded based on full-text review were recorded, alongside the reasons for exclusion. Where evidence was not immediately available, we attempted to source it using various means, such as contacting authors. If the evidence did not become available within a 1-month period, it was recorded as missing.

Data extraction

A data extraction form was developed and piloted on three sources of evidence selected to ensure variation in focus and content, and a final version was used to extract data from included evidence. One reviewer led data extraction for each review, and completed forms were shared among the review team to be checked for gaps and inconsistencies.

Critical appraisal of individual sources of evidence

The conduct of critical (quality) appraisal in scoping and RRs is considered optional. 50,55,57 For scoping reviews, the central issue is inclusion of many types of evidence,57 some of which are not amenable to quality appraisal. For RRs the central issues are lack of or limited availability of information on which to base quality assessment decisions55 and time available to complete the review, including in respect of chasing up missing information. 51 Given the variety of included evidence and the project management plan, we took a pragmatic decision not to undertake critical appraisal. However, we considered how included papers framed the concept ‘BTCO’ and the extent to which the research took a critical stance towards this concept. We were alert to papers that presented a medicalised perspective on ‘BTCO’ and considered how this may have impacted on the findings presented.

Synthesis of findings

Alongside primary and secondary empirical research findings, evidence included non-research case studies, and resources providing information and guidance relevant to older (aged ≥ 40 years) PWLD and ‘BTCO’, and family carers. Such diversity necessitated a flexible approach to bringing together the evidence in its entirety. Key characteristics of included evidence were summarised in a table of characteristics for each review (see Appendix 1). Using these tables, we identified patterns and trends in the volume, focus and content of included evidence as the basis of our discussion.

The findings were integrated using a narrative approach. 59,60 An iterative process of reviewing the entirety of the research evidence allowed us to identify patterns in what the evidence was suggesting, however derived and expressed, which we captured in a series of themes and subthemes. The process was led by two researchers per review, with the sustained involvement of review team members from an early stage, and from advisory groups once an initial thematic draft had been developed.

Our aim was to interpret, rather than describe, the original (author-generated) findings to generate new conceptual understandings, set out as analytical themes. Deductively, we took the focus of the review as our point of entry into the data. Inductively, we followed the three-stage process outlined in Table 2.

Rapid review 1: health and social care needs of older (aged ≥ 40 years) people with learning disabilities and ‘behaviours that challenge others’ moving to different contexts of care

This review was based on collaborative working with key stakeholders, using systematic methods of data searching, extraction and analysis. It explored what is known about the health and social care needs, experiences, service interventions and resources of and for this population as they transition to different care contexts in the UK.

In the original search in 2020–1, database searches yielded 261 returns, of which 223 were excluded based on initial screening using titles/abstracts. The remaining 38 were read in full, 32 were excluded and 6 were identified for inclusion. A total of 37 returns were identified from the reference lists of database-included articles, all of which were read in full. Of these, one article was included. A total of 40 additional items of evidence were identified by the research team, Professional Advisory Group and Public Advisory Group. Of these, two were included. Therefore, a total of nine items of evidence were included in our review conducted in 2021–2. The extended RR1 search conducted in 2022 on EOLC yielded 355 database returns, of which 346 were excluded based on initial title/abstract screening. The remaining nine papers were excluded after full reading. There was no additional evidence for RR1. Our analysis generated four main themes – transition over the long term: laying the necessary foundations; avoiding the need for unwanted/inappropriate transition; at the point of transition: making it work; and an absence of target resources – which we briefly summarise here:

1. ‘Transition over the long term: laying the necessary foundations’ addresses factors that work for and against moving home successfully over the long term, captured in three subthemes: ‘opening up choice’, ‘promoting independence’ and ‘making choice a reality’. Future planning involves proactive planning for circumstances in which PWLD are no longer able to remain in their home, which is typically the family home. 61 Evidence showed limited planning by ageing family carers and PWLD, albeit for various reasons. Professional involvement in supporting a ‘whole family’ approach to future planning is advocated by Forrester-Jones62 and Slevin et al.,61 with the latter stressing the need for planning to start before problems associated with ageing manifest. Commissioners have a responsibility to proactively plan for the delivery of appropriate housing and support. This requires detailed knowledge of the needs of the people involved locally, and how these are likely to change over time, premised on robust databases of ageing family carers and older PWLD. 61

2. ‘Avoiding the need for unwanted/inappropriate transition’ addressed factors to help maintain residence and prevent crisis moves in three subthemes: ‘optimising health and social care’, ‘the importance of staff training’ and ‘specialist community teams for people with “BTCO”’. The need to avoid delays in the completion of needs assessment went far beyond the 4–6 weeks specified in the Care Act 2014. Given the relationship between mental and physical health issues and ‘BTCO’, a proactive approach to the effective health care of older PWLD and ‘BTCO’ is particularly needed. Slevin et al. 61 highlight the evidence for annual health checks as a useful preventative strategy, as they can reveal ongoing or changing health needs. That older PWLD have been shown to underuse health services further underscores the need for proactive engagement. 61 Linked to this is the criticality of bespoke staff training, focused on what people need as they age63 and the benefits of community specialist teams who have the breadth of skills and professional knowledge to meet the complex health and care needs of this group. 61

3. ‘At the point of transition: making it work’ deals with factors that promote the potential for successful transition in two subthemes: ‘specialist support in making transition happen’ and ‘front-line staff skills and attitudes’. Leaning and Adderly64 identify the benefits of specialist involvement at the point of transition, including community nurses, social services colleagues, psychiatrists and ‘challenging needs specialists’. They also emphasise the need for professionals and family to resist and challenge ‘problem-saturated narratives’ that focus excessively on behavioural concerns, and instead promote alternative narratives that are informed by the person’s capabilities and what makes them happy. The role of creative, compassionate and consistent staff and senior managers is also critical. 65

4. ‘An absence of targeted resources’ deals with the limited information and guidance currently available to PWLD as they grow older.

Rapid review 2: health and social care needs and interventions for family carers of older (aged ≥ 40 years) people with learning disabilities and ‘behaviours that challenge others’ moving to different contexts of care

This rapid scoping review of published and unpublished literature explored what is known about the health and social care needs, experiences, service interventions and resources of and for these carers in the context of the transition of their adult family member to different care contexts in the UK.

Database searches yielded 157 returns, of which 110 were excluded based on initial titles/abstract screening. Of the remaining 47 read in full, 45 were excluded and 2 were included. A total of 35 returns were identified from the reference lists of included articles, all of which were read in full. Of these, one article was included. A total of 40 additional items of evidence were identified by the research team alongside our Professional and Public Advisory Groups, all of which were read in full. Of these, four were included. Therefore, a total of seven items of evidence were included in our review. Details of the seven included items are in Appendix 1. RR2 identified four key themes: support for ageing family carers of PWLD and ‘BTCO’; challenges facing carers when considering planning ahead; availability of suitable housing and support; and limited availability of information and guidance:

1. Support for ageing family carers of PWLD and ‘BTCO’. The review highlighted a lack of accessible advice, information and support. Black and McKendrick66 found that 29 out of 36 participants in Northern Ireland reported not knowing what help was available from services. Significantly, 28 out of 36 reported a lack of regular contact with their social worker, meaning that they did not have consistent access to an important source of information. Slevin et al. 61 discuss a range of interventions that can act ‘as a form of prevention, maintenance and also crisis management’, including planning, support groups, support co-ordination, direct services and sibling support, which can provide information, emotional and practical support.

2. Challenges facing carers when considering planning ahead. Forrester-Jones,62 Slevin et al. 61 and Black and McKendrick66 note a tendency for carers to avoid thinking about the future. Forrester-Jones62 found that family carers can be reluctant to relinquish their caring role, which can be a source of profound satisfaction and purpose, within a context of mutual caring and interdependence that develops over time. Using a ‘whole family’ approach to address issues around future planning that are acceptable to carers is strongly advocated. 61,62,66 The potential role of siblings as future main caregivers needs consideration and sensitivity;61,62,66 for example, siblings may not want to or be able to assume a caregiving role. 62,66 The revisiting of plans is recommended so changes in family circumstances and needs can be considered, and plans amended accordingly. 61,62

3. Availability of suitable housing and support. RR2 highlighted the burden on carers of struggling to find appropriate accommodation for their relative. Even when families are ready and prepared for the move the process can be protracted, complex, debilitating and frequently futile. 67 On average, PWLD had been on a housing waiting list for 2–3 years, with two families (out of nine) waiting over 5 years. A key obstacle to progress was communication with social services and housing staff, and meetings were held with no follow-up action. This lack of action was often associated with constant changes in personnel, and the fact that no one professional appeared to take responsibility. Participants described growing distrust of social services and housing department staff, and disillusionment with the system in general.

4. As with RR1, our final theme addressed the limited information and guidance available to aid PWLD to navigate moving from the family home. We found no targeted resources to guide PWLD, family carers or professionals (either front-line or planners/commissioners) in planning ahead.

Rapid review 3: the co-ordination of care for older people with learning disabilities with ‘behaviours that challenge others’ living in the community

Database searches yielded 1449 returns, of which 1391 were excluded based on initial screening using titles/abstracts. The remaining 58 were read in full; 49 were excluded and nine were identified for inclusion. Manual reference list and forward citation searching were undertaken for these 9 papers. Based on initial screening, 6 papers from the reference lists and 108 from the forward citation searching were excluded. The remaining 12 papers were read in full. However, none met the inclusion criteria and all were excluded. Therefore, nine items of evidence were included in our review. See Appendix 1 for details about the nine included items.

Rapid review 3: findings are presented at individual, service and commissioner levels

1. At an individual level, the review emphasises the importance of professionals, PWLD and family members developing positive relationships. This involves effective communication and a sharing of knowledge. 68–73 It also requires the co-ordination of specialised, bespoke and person-centred planning and a focus on pre-empting and responding to ‘health-related loss’, such as a deterioration in mobility. 70 This may involve the recruitment and training of specialist staff teams, with relevant input from both clinical and social care staff. 69,71 The benefits of a family-centred approach to the delivery of primary care to older PWLD was also identified, with the caveat that professionals should ensure that the views of family members are balanced against the wishes and preferences of PWLD. 73

2. At a service level, proactive collaboration between different agencies is critical. 68–70,72–75 This involves bringing together professional expertise within learning disability (e.g. via community learning disability teams), mental health and gerontology services as needed, alongside housing agencies. However, when professionals work with other agencies, there may be knowledge gaps around learning disabilities, particularly for those who do not frequently work with PWLD. 72,74 Training and resources are suggested for professionals who do not regularly work with older PWLD, including experiential training alongside PWLD.

3. At a commissioning level, the review identified that provision for older PWLD was frequently fragmented, leading to critical opportunities for diagnosis and referrals (e.g. for mental health support) being missed. The importance of local strategic frameworks to support planning and resourcing for this group of people as they age was highlighted. This was described as a needs-led service system that ‘has capacity to take account of current and future age-related needs’. 70 There was some consensus that the system should be developed from the bottom up in response to the needs of local people. 68,70–72,76 How well funded and well planned service provision is locally or regionally impacts the potential for success at the individual and service levels. This includes the provision of multidisciplinary outpatient healthcare practices that provide co-ordinated physical and mental healthcare services for PWLD. 76

Service models focus

Services are defined in this research as those that support people to live in the community. This includes services that support people to live in their family home, housing with a tenancy and with types of paid support, Shared Lives (also known in Northern Ireland as adult placement) where the PWLD lives in a registered care provider’s own home as a family member,37 and residential care homes (with or without nursing care).

Service support includes domiciliary care, personal assistance funded by personal budgets, respite care, support with activities including employment, day-centre-based activities, supported living personal and social care, and a range of health, personal and social care provided in care homes. Individualised care provision can be shared via a team across a group of people living together or provided to one person. Health services are generally provided by generic primary care, specialist learning disability community health teams, and generic secondary and tertiary care services, supported by specialist learning disability liaison nurses. EOLC services provided to the general adult population are also accessed by PWLD. Support services that enable people to be discharged from assessment and treatment units and other inpatient settings are in scope where they are provided in the community and commissioned and/or provided by mainstream health and social care services.

Criteria of exemplar services

The Professional Advisory Group considered and suggested standards in use by commissioners and providers. Some recommendations of standards related specifically to services for older PWLD and ‘BTCO’, but none were felt to be sufficient in themselves to be criteria of excellence for the purposes of this research, particularly as they addressed different needs, such as EOLC, dementia care and the needs of people leaving inpatient care. Therefore, the approach to defining excellence was developed through the data collection activity with a range of stakeholders.

Selected published standards and guidance, including the grey literature of WP1, with input from the Professional Advisory Group and views of key stakeholders, were analysed. We used a combination of predetermined and emerging categories to extract data supporting one or more of the criteria of excellence (see Criteria of excellence). The first step was a desk-based exercise of examining standards and descriptions of services derived from the literature and consultation. The second step involved using data from mapping interviews and a survey about participants’ relationships to services or those they had experienced, managed or were involved with commissioning.

Rapid analysis was used as described by Taylor et al. 88 for use with interviews and the survey comments using a combination of predetermined and exploratory themes. This was relevant for a subset of 30 participants in the mapping exercise interviews or who completed a survey equivalent (see Report Supplementary Material 5). Comments from interviewees and survey participants related to the general criteria of excellence that emerged from the desktop review were recorded into predetermined categories, and new themes were generated. Quality assurance of the coding was undertaken by a research associate, and differences were resolved by discussion. There were several new criteria describing participants’ relationships to services.

The third step involved both advisory groups commenting on the drafts and suggesting ways to refine the criteria.

Mapping

A mapping approach was adapted from three NIHR service mapping studies. 89–91 The aim was to identify services and whether they met the criteria of excellence while operating in the service models described by participants and the characteristics of older PWLD and ‘BTCO’ for whom these services were provided.

Recruitment of participants to identify services and/or for interview

The mapping approach used multiple routes to identify commissioning and provision of exemplar services and then to find out key information about the service from interviews, an online survey, websites and other documentary sources. Recruitment involved two parallel approaches:

• NHS and social care commissioners: The initial plan was to use the approach adopted in the evaluation of Building the Right Support. 80 This evaluation used a survey of Transforming Care Partnership (TCP) members to identify case studies at TCP level and a snowballing approach to generate evaluation responses. 92,93 In this scoping exercise, we anticipated identifying, using a cascade approach, one or two key strategic-level participants who could identify relevant exemplar services if these existed in their area. We also anticipated that as the NHS was undergoing significant structural changes there was likely to be geographic variation in the strategic oversight of services over the period of study of 2020–1. Furthermore, TCPs are concerned with a small subset of PWLD with specialised service needs. We approached NHS England (NHSE) Learning Disability and Autism programme leads at regional and integrated care system levels via the Clinical Director for Learning Disability at NHSE. At this level, we sought exemplars and contacts with the Clinical Commissioning Groups (CCGs), LAs and NHS Mental Health partnership trusts. The NHSE Head of Nursing for End-of-Life Care also shared the invitation with her networks and senior clinical leads.

• Third-sector providers and bodies representing the public: These organisations were contacted via commissioners and NHS providers, contacts from an article in Care Management Matters,94 a press release, the project website (http://wels.open.ac.uk/research/growing-older-planning-ahead) and social media presence (@OlderAhead and #OlderAhead), a subsample of the 386 ‘outstanding rated’ services that included adults or the elderly and PWLD on the Care Quality Commission (CQC) database, an online survey promoted via social media, a web chat with the ‘Our partners — Learning Disability Nurses’ forum, a clinical senate meeting in NHSE Southern region, and a webinar of Shared Lives providers.

Data generation

Data were generated by e-mail or telephone contact with social care professionals who gave information about services and information about others who could inform the study by identifying services and commenting on the criteria of excellence. Those willing to give information directly were offered either a semistructured interview conducted by telephone or online call or an online survey (see Report Supplementary Material 5).

Data analysis

A template was produced (see Report Supplementary Material 8) for summarising data collected from interview transcriptions and the open text survey. Notes were taken when the conversations were primarily referring the researcher to a primary source. This included data on the characteristics of people who use services, and the services themselves as well as the scope of commissioner responsibilities. Further sections were used to record key documents, web content, quotations and reflections relating to both the criteria of excellence (i.e. how they would apply across services) and specific exemplary practices or case examples of personal experiences of the services. These data were used to develop criteria of excellence described above. The interview and survey data were coded to identify descriptions of specific services. Interviews were conducted with up to four managers and commissioners per service to complete the template.

The final templates and supporting summaries of interviews together with a shortlist of exemplars were presented for consideration by both advisory groups and research team. Preparatory work with the research team and advisory groups was conducted virtually (due to pandemic restrictions) to gain views on the emerging criteria of excellence and how these should be applied to derive the shortlist of services from the mapping exercise. Quality assurance of the mapping exercise results was undertaken by the WP3 team considering the service models by reviewing all the data compiled on each service. The Professional Advisory Group considered the finalised criteria of excellence and consideration of the outcome of the mapping work. The Public Advisory Group and Study Steering Committee (SSC) considered the final shortlist of case sites.

Criteria of excellence

The criteria of excellence in services were derived from four sources: NICE, CQC standards, NHSE and related third-sector body standards. Sources of the standards are summarised in Appendix 2 and the initial criteria are described in this section, with emerging themes summarised in Table 3. The research literature included in the initial scope of WP1 was examined to draw out sources of published evidence for the emergent criteria. Additional evidence from the mapping interviews in support of the criteria is presented in Appendix 3.

Findings of the mapping exercise

The CQC’s database of registered services was searched with the assistance of a CQC analyst in August 2020. This involved the following steps:

1. Categories were selected to focus on the types of services relevant to PWLD and ‘BCTO’ living in the community, aged ≥ 40 years, as no categories are specific to services for this group. These were (1) inspection category – residential social care, community-based adult services; (2) directorate inspection category (adult social) and (3) primary inspection category – residential social care or community-based adult social care services.

2. To narrow the search, it was necessary to specify categories of ‘adult’ (18–64 and ‘65 and over’) and include learning disability in its regulated categories. As services are registered for multiple groups, such as learning disability and physical disability and dementia, the search was expected to show services that did not necessarily currently support PWLD. Some 386 provider locations in England were rated ‘outstanding’ using these selection criteria.

3. Initial sifting of services with potentially relevant registration (B – regulated activity; C – service type; and D – service use user band), resulted in 330 registered locations with outstanding ratings. See Report Supplementary Material 6 for codes.

4. Services were removed that were clearly outside the remit, such as diagnostic screening and community healthcare services (n = 19).

5. Hand-searching the websites and/or title of the provider was carried out to remove ineligible services, such as those specialising in autism alone (n = 6), and one that had recently lost its outstanding rating (n = 1).

6. Providers were contacted that appeared most often (such as franchises) to verify that they included eligible service users and read their CQC report. If the identified provider was not contactable, contact was attempted with head office. This process removed many services that were not contactable or did not currently have eligible service users. The result was a list of four providers involving 74 registered services, and several Shared Lives schemes.

7. Finally, this data set was used to discuss how the criteria of excellence were met according to the views of providers and commissioners of these services.

Who should be included?

Learning disability services are not organised around age criteria. Services specifically commissioned for PWLD and ‘BTCO’ include autistic people and younger people. Two groups emerged whose services are commissioned differently. Group A are older people who may have greater physical and mental health needs than their peers. This is a large group, with several hundred people in each CCG or LA area, and many may not be known to services.

Group B comprises people who have in their recent past been or are about to be discharged from long-term inpatient care. This is the ‘Transforming Care’ group and is much smaller. NHSE figures (personal communication between NHSE and Wallace, 2021) suggested 15 CCGs with up to 5 people aged ≥ 40 years discharged from April 2016 to September 2020 with a continuous length of stay of ≥ 5 years at discharge, and a further 9 CCGs with up to 10 people and 2 CCGs with up to 15 people discharged in the same period.

Which services should be included?

The four broad models of living were identified:

1. People living with their families, possibly with LA-funded day activities and/or personal budgets and domiciliary services.

2. Supported living via home ownership, tenancy and/or shared equity arrangement for accommodation and support provided in a personalised care package.

3. Shared Lives provision with paid care provided by an approved family in their home. This can be for a family break, a step towards independent living or long-term living.

4. Residential accommodation with or without or nursing care.

Shortlisting case studies for work package 3

Data were drawn together to assess providers against the criteria of excellence. A longlist of 15 providers was presented to both Professional and Public Advisory Groups for discussion. Following discussion within the team, eight providers were selected for the ethnographic research in WP3 across the four models and both groups A and B. One of the initial eight providers was replaced when it became clear that the innovative housing model offered was separate from the housing support. Our focus on England limited the identification of exemplars of good practice to England rather than covering all of the UK, which meant that the research did not benefit from the experiences of and differences in health and social care delivery across the four countries.

Sampling and recruitment

Eight case study sites demonstrating exemplars of one of four models of provision were approached and invited to take part in the study (Table 5 details the case studies, visits, interviews and timescales for each site). WP2 identified two core groups of older PWLD, those who have greater physical and mental health needs than their peers and those who have recently been, or are about to be, discharged from long-term institutional care – our sample did not include anyone from the latter group. We did, however, include participants who would be characterised as having severe learning disabilities. We included an additional case study site (NCH_2) identified during proposal development as an exemplar in the development of a new provision for older PWLD and complex needs in an inner-city area. The delay in the development of the site led us to treat it as distinct from the other case studies.

Access to each case study was negotiated at provider level and then with local managers and support workers. Relevant introductions from contacts developed during WP2 were made and meetings arranged with the provider chief executive offices (CEOs) and, subsequently, other staff members to build relationships and identify potential participants. It was important that staff fully understood the point of the research and what participation would involve. It also allowed the team to find out more about the support offered. Discussions included thinking about the best ways to recruit and engage with participants and to include people who lack capacity via gaining consent by proxy from family members.

Provider DOP_1 asked to delay participation due to staff changeovers and joined the fieldwork 3 months later. Provider ISL_3 was unable to continue to commit the resources to participate because of staff sickness. It withdrew from the study, rejoining 7 months later. This resulted in fewer PWLD participants from this provider (n = 3). One provider declined to take part as the CEO felt that the organisation was not able, in pandemic conditions, to provide excellent support. A replacement provider was selected from the shortlist.

For formal interviews, a framework was produced to sample diversity including age, gender, ethnicity, family context and length of time living or working in the provision. In practice, we were limited to a sample defined by the people living and working at each of the sites, which were a mix of rural, small town, and urban, and our sample was White British. Ages ranged between 40 and 70 years.

Developing co-research training materials and delivering co-researcher training

It was important to involve PWLD and family carers in a form of ‘co-operative experiential inquiry’,112 conducting the research with rather than on PWLD. 113 We co-designed training resources to facilitate the involvement of PWLD and family carers as ethnographers and to support academic researchers to facilitate co-research. We were mindful that people had key skills of observation and listening and wanted to draw these out without imposing constraints on conventional means of research. 114

This work was supported by engagement funding from the NIHR School for Primary Care Research and is reported in Mikulak et al. 115 We recruited a small team comprising academics (n = 3), a Public Involvement co-ordinator and family carer, PWLD (n = 2), and two further family carers. The resources, developed through online workshops and an ethnographic exercise, are publicly available at www.mmu.ac.uk/research/research-centres/hpac/projects/growing-older-planning-ahead.

Ethics

Informed consent was sought from all participants who were deemed to have capacity to consent. Participants with learning disabilities were given Easy Read information sheets about the study and Easy Read consent forms. They were encouraged to complete these with the researcher and a trusted person such as a family member or support team member. The researchers went through the consent form with the participants (and, where appropriate, with their trusted person) and made sure participants had a chance to ask questions and understood their right to withdraw consent at any point, before the consent form was signed on two copies by the participants and the researcher. Participants retained one copy of the consent form. Consent for participants who were deemed to not have capacity was sought through a consultee. In all cases when this process was used, the consultee was a parent of the participant, had an intimate knowledge of and regular contact with the participant and deemed the person’s participation to be in their best interest.

Data generation

The move of co-principal investigator Ryan to Manchester Metropolitan University in May 2021 necessitated an ethics amendment and subsequent delay in starting the fieldwork. In the interim, the time was used to engage with the sites online. We learnt that considerable input and encouragement of support staff, which included making clear the point and importance of the research, was necessary to ensure engagement, particularly given staff shortages and other constraints.

Longitudinal observations, interviews and documentary analysis were used to understand how people were supported in their everyday lives, how they negotiated ageing, and how ‘BTCO’ were understood and ameliorated. In total, researchers spent between 12 and 25 days, including some weekends and evenings, at sites within the four models of care. Co-researchers were present at around 30% of the visits. While originally structured to take place an average of 2 days a week, the geographical location of the sites, and COVID-19-related disruption, meant that visits were organised flexibly, working around last-minute changes to plans caused by illness or staff absences. The number of visits was balanced against their duration (fewer visits meant the visits were longer).

Detailed field notes were kept that included a description of the setting, interactions between people, objects and the environment, emotions, impressions and reflections. Interviews with PWLD, their family members, support workers, provider managers and commissioners were conducted for each site allowing us to develop our understanding of the conditions necessary to provide excellent support (Table 6). An interview schedule was used (see Report Supplementary Material 9), although the process was flexible, allowing participants to introduce issues they felt were important. Interviews, at a participant’s home or online/by telephone, lasted 20 minutes to 2 hours, were recorded with permission and were transcribed verbatim.

Independent supported living

Based on WP2 (see Chapter 3), three providers offering ISL services were selected: a social enterprise provider in the north of England (ISL_1); a large, not-for-profit national organisation (ISL_2); and a small, limited company provider operating in the south (ISL_3). An add-on site (ISL_4), a not-for-profit charity, was identified that provided exemplary care and support for older PWLD in a deprived area of northern England. Support ranged from 24 hours of one-to-one support with two-to-one support for going out, to a few hours of one-to-one support per week. In-person ethnographic visits lasted 2–6 hours and revolved around participants’ timetables, with researcher(s) taking part in activities or shadowing (arts and crafts, drama, walks in town/city and in nature, shopping, outings for coffee, going to the cinema, picnics and drives, going to a day centre) and spending time in participants’ homes. Most visits took place on weekdays, including evenings; however, a minimum of one weekend visit was included for each provider. Online meetings took place between in-person visits, during weekdays, and lasted between 15 and 30 minutes.

Day centres

One provider (DOP_1), a charity operating community hubs in the Midlands, was included. Participants were recruited from two hubs with older PWLD. Of the six participants (three from each hub), four lived alone (one person paid for a few hours of support and one person had a few hours of support from the provider), one lived with their parents and one person lived next door to their sister.

In-person visits lasted 3–7 hours during hub opening hours (9 a.m.–4 p.m.), with researcher(s) taking part in and/or shadowing activities (arts, crafts, cooking, board games, computer games, chair yoga) and shadowing participants on outings. The hubs closed at weekends.

Shared Lives

Shared Lives is a model in which people with a wide range of support needs, including PWLD, autistic people, young care leavers and people with dementia, live in their local community with families. Two exemplary schemes were selected from WP2: one based in a northern city (SL_1) and one in the south-west (SL_2). Participants used respite Shared Lives or lived full time with families, and visits included spending time at the Shared Lives home or going out with the Shared Lives carer and participants.

Nursing care home

Nursing and Residential Care Home_1 is a nursing care home in a large market town in northern England. The service provides support to 4 households of 6 PWLD and additional nursing care needs (24 people in total).

Ethnographic observations focused on three participants. Visits to the site lasted approximately 3–4 hours, including mornings, afternoons, evenings and weekends. The stories of two men who had died in the nursing care home before the research took place were included in interviews with their relatives and the staff team.

The co-research team

We recruited and trained a team of co-researchers, PWLD (n = 8) and family carers (n = 1) using the co-designed training resource discussed above. The aim was for 50% of the visits to sites to be with a co-researcher other than the two nursing home sites. In practice, this was not possible, due to individual preferences of participants, inaccessibility of certain sites, and availability of co-researchers.

Observations from co-researchers were documented in various ways. The team’s preference where possible was for the researcher and co-researcher to go somewhere quiet to talk about the day and the researcher to take notes. This was not always possible and a debrief was sometimes held online, or by telephone, later in the day, or the following day. Three informal online meetings were held with the co-research team, which generated additional observations about the sites.

Co-researchers brought their knowledge and expertise to the research. For example, one researcher drew on her experiences as a wheelchair user to comment on the lives and home of two participants who used wheelchairs. Others were able to reflect on their experiences as quality checkers for the CQC. Co-researchers local to the site area also brought expert knowledge of local places, venues and self-advocacy.

Policy documentary review

Relevant policy documents were requested from each site. These focused on how the organisations support PWLD and ‘BTCO’ as well as on the design and delivery of support around growing older and EOLC. ‘BTCO’-related documents included those explicitly focused on ‘BTCO’ and those relating to reducing restrictive practice and physical interventions, and mental capacity. For sites without EOLC documents, documents relating to health and well-being were reviewed. See Report Supplementary Material 10 for included documents.

Data analysis

Data analysis was conducted alongside fieldwork, with researchers comprehensively familiarising themselves with the observation notes, interview transcripts and policy documents. These data sets were entered into NVivo (QSR International, Warrington, UK) and thematically analysed. The research team open-coded data, meeting to discuss developing coding frameworks. Coding categories were flexible, and an iterative approach to this first stage of analysis incorporated alternating between transcripts, notes, codes and categories as new codes was identified. A more conceptual analysis involved selecting particularly rich and relevant categories, reading and re-reading the data, generating themes, making links, identifying patterns and thinking about the data in a less linear and descriptive way. Meaning, action and process were used as an interpretive analytic lens to understand how participants understand and make sense of their lives, their actions and their interactions. Our aim was to capture the micro-detail of how participants live their lives and engage with other people at home and in the community.

The policy documents were also analysed using NVivo. In addition to the content, we reviewed their intended audience and authorship, references to research and external standards, accessibility of language, and the process of reviewing and updating them. Existing policies were aimed predominantly at staff. The documents were up to date, with frequent revisions and version history stated.

We did not plan to involve co-researchers in data analysis because of the quantity of textual data involved. 116 However, insights generated during fieldwork led us to revise this. Two analysis workshops were held with two co-researchers and a support worker, which involved close audio examination of data extracts where participants talked about ‘BTCO’ (Mikulak et al., in preparation).

Nursing Care Home 2: the commissioning and development of a new inner-city service

Nursing Care Home 2 (NCH_2) was identified during the original proposal design development; however, the opening of this service was delayed. Following discussions with the project team and Advisory Groups, we agreed to continue to research NCH_2 to generate insights into the process of planning a new service specifically for this group. In addition, NCH_2 enabled us to consider the potential benefits and challenges involved in commissioning an inner-city service for older PWLD and ‘BTCO’, in the light of key policy drivers to keep people within their local communities. 23,80,102,117,118

Homely homes

Access to the outdoors

It is important to be able to enjoy the outdoors, by, for example, having a garden where people can grow plants and food, display their art, and relax. Across the four models there were various examples of participants enjoying being outside. ISL_4 has a small, enclosed garden where people are encouraged and supported to grow plants and vegetables. G (SL_2) lives on a smallholding with geese, chickens, ducks, pigs, sheep and goats; he loves working on it and spends most of his time outside. The nursing home bungalows have gardens with plants in big pots, garden ornaments, bird feeders and several places to sit:

R [SL carer] suggested that C take us up to the chickens when she feeds them. The garden was amazing. It was full of lots of different plants and trees around the edges and in the middle there was a big lawn. At the very top of the garden there were lots of chickens and 3 running ducks … I followed C to the chicken pen, together they let the three ducks out into the main garden to go for a run, they set the water going and placed the hose into an inflatable paddling pool so that the ducks could have a splash around in that.

SL_2, ethnography notes 30 April 2022

Z shows me around the garden. The space is beautiful, sunny and there are more sculptures than last time. They are all full of character and just fun … Cups of tea still in hand we walk to a small sitting area in the far corner of the garden. C, who is at the sink in the kitchen opens the window and says ‘you can bring the chairs here, Z’. Z and I carry a chair each and put them next to one that is already by the house, in a half circle facing the garden, and the sculptures.

ISL_2, ethnography notes 26 March 2022

Accessibility of location and transport links

Location is important for accessibility and access to public transport. Being able to walk or get around the neighbourhood and access local amenities meant that participants were not reliant on support staff driving and were less likely to become isolated:

It is a beautiful, warm, sunny day and the town where C lives is lovely, so we (researcher and participant) are going to go for a stroll and have coffee out. As I approach the flats where C live, I can see him and T [support worker] waiting at the gate … ‘Hello!’ ‘Hello! Hi, C, hi, T!’ … Then T says ‘right, C is all set, he has some money to treat you to a coffee. He knows where he wants to go … There is a café in a garden centre, C likes it there’.

ISL_2, ethnography notes 23 March 2022

The day activity hubs (DOP_1) were distinct in terms of their location and physical layout, which impacted how welcoming, integrated and convivial they felt. The first hub, located in the town centre, was closely linked to the local community, with easy access to leisure, shopping and food venues. People could access it by public transport (S), on foot (N) or by mobility scooter (J). This contributed to a vibrant atmosphere and constant flow of people, visitors and family members. Although not open to the public, the hub felt welcoming, where people could come in to have a chat and a cup of tea. The main large, open-space room was conducive to social interaction and banter, facilitated by friendly, approachable and caring staff. The managers’ office, located next to the reception, staffed mainly by people who use the hub, was open to all and the door was rarely closed. Additional rooms (new, spacious kitchen, a large meeting room) provided space for activities. There was a sense of community, togetherness and familiarity between the people who use the hub and work there.

The second hub, located in a business park, did not share the same characteristics, and people using it were shuttled in and out by staff. This meant that shortages of staff could result in cancelled activities/outings. Its physical layout across two buildings, with a myriad of small rooms, was also less conducive to socialising; however, the large, bright kitchen functioned as a meeting space, where people and staff interacted organically, outside the assigned rooms and groups.

Use of day centres

The Shared Lives sites also involved the use of day centres, which is an integral part of the scheme. This generates contradiction when living an ordinary life is fractured with segregated day activities. This was discussed in an interview with a commissioner:

And I keep thinking and going back to that Adult Family Placement – those days when it was Adult Family Placement – because I think things changed from then when it moved to Shared Lives. And there’s a focus around having to have the day provision element. I think it loses that sense of being part of the family, when you start looking at the fact that somebody needs to have a day provision or respite.

SL_1

Researchers spent time at a day centre associated with SL_1 and found that people of different ages spent a long time indoors, doing activities that might not be of much interest to them:

The Group, including H, were very engaged with the activity about Christmas words. We are now moving on to seated yoga and people seem to be less interested in this. They have been in the same place for quite some time now and I get the impression that there is a shared feeling of restlessness. Some people from the group are stood or wandering around the room, and this increases over the next 30 minutes.

SL_1, ethnography notes 30 November 2021

The importance of who you live with

For some participants, related to the sense of security that comes with having a home that feels permanent is living alone (or with a partner). This allows people to have control over their private lives in ways that PWLD have historically been denied, and in some settings continue to be denied. This view was reflected by some ISL providers who framed the right to live alone as a question of social justice. One commissioner, for example, said that people should be entitled to have their own front door, with support, while the ISL_3 CEO stated:

When you do really good planning with people, the right thing was for people to have their own home, the same as you and I. So that was the first principle, was people having their own home.

ISL_3, emphasis added

The value of having one’s own home was echoed in conversations with participants and their families. For example, one mother described how her son had always wanted his own house and two cats. We found that people tended to be grouped together in supported living settings, creating situations where they lack agency and security. When people live in groups of four or five, their private lives are intertwined with that of their housemates, who may be strangers, in ways that reproduce models of institutional care. This can be of particular concern for older PWLD, who can find house sharing busy, noisy and detrimental to their well-being. Lack of privacy and conflict with housemates were additional sources of stress:

When I get to (participant’s) room I ask if I should close the door and she (participant) says ‘yeah, close it’. With the door closed, the room feels much cosier and calmer. The door is a two-part situation, with stops at the bottom on both sides. I doubt C can close and open it herself … The house is noisy … I then remember C moved to this house recently so I ask her about that … ‘Remind me why you wanted to leave the last place?’ ‘It was because of M, he was always making noises, was loud. Was getting on my nerves’, C says. ‘And is it better here?’ I ask. ‘Not really’, C says.

ISL_1, ethnography notes 7 June 2022

Within the nursing home there was a question about the appropriateness of the collective setting for one participant. The history of abuse and institutionalisation some PWLD have experienced has led to conflict between residents:

The clinical nurse shared that staff query whether C’s current placement is suitable as they predominantly support people with profound disability and complex health needs, but also asked ‘where else would she go’? The residents who share the bungalow with C are vulnerable because they cannot get out of her way, which is why we try to manage her behaviours in the way we do.

NCH_1, interview with clinical lead nurse

Staff recruitment, matching, support and consistency

Our research found that the culture and practices around staff recruitment, matching and consistency are key for people leading good lives and dying well.

Activities, age and belonging in day activity centres

Despite the broad offering in DOP_1, there were no activities tailored specifically to older people, although some activities, such as chair yoga, allow people with reduced mobility and older people to take part. At times, the activities that older people took part in were a way to be together with others as opposed to being of real interest to the person:

P:But I only go [to the hub] one day a week now, and that’s on a Monday … Mainly for cooking … And doing reception. Because I’ve recently took at doing reception work, working on the reception. Letting people in and out. If the phone [intercom] goes off.

I:Yeah. So when you do the cooking, what kind of things do you do?

P:Lasagne. Anything really, anything easy … (..)

I:Do you ever cook these things back at home for yourself then?

P:No.

I:No?

P:I only do microwave stuff at home.

I:Right … So why do you do the cooking at [the hub] if you don’t use it at home then?

P:I don’t know, I just … just come down just to make myself, give myself something to do really.

DOP_1, interview with N, PWLD

This example suggests that the value of the activity is thus not so much in its content, or for teaching a skill, such as cooking, but in it being a way to fill the time, and bring people to the hub, where they get to socialise and receive support from the community that the hub holds, a point also acknowledged by F’s sister:

I don’t know if it’s to do with timings and people available and things like that, but obviously sometimes the weather’s not good for gardening so that’s fair enough, but some days when she should be doing say, computers, or something like that, it doesn’t seem to happen and she just seems to be doing a jigsaw or something like that. Which F’s very easy-going … so she’ll just go along with it, and I have said to her, you know, you can say you want to do something and I think she’s very happy to have company, so sometimes she’s not bothered that they’re not doing anything in particular.

DOP_1, interview with sister, emphasis added

The DOP_1 day activity hubs offered a sense of community and belonging for people, enabling people to stay in touch with their peers and develop new social connections. N and S have limited hours of support, but both come to one of the hubs weekly:

I think that tends to be sort of like, we would encourage people to join in an activity. But at the same time, we do also appreciate that that’s not always for them, and that they probably want just to come in, just to see people, socialise. Have a game of pool and have a cup of coffee. Have a chat with somebody. […] Or, you know, even myself, yeah, I’d come out of the office and have a game of pool with somebody and have a chat with somebody.

DOP_1, interview with hub manager

N comes in and comes over us. It turns out him and S know each other very well ‘12 years’, explains N. ‘Must be’, says S … N calls S ‘Pumpkin’. ‘Why Pumpkin?’ ‘I don’t know, it’s always been that. My wife called him Pumpkin, my brother called him that, we all call him that’ … ‘We are there for each other’, asserts N. He says S phones him up when he’s got a problem and they talk about it and try to help.

DOP_1, ethnography notes 16 November 2021

For people who received support in group settings, 1 : 3, for example, the group played an additional role of both support and knowledge bank about their members. Over the years, people developed strong bonds and a sense of belonging. This created an atmosphere where people looked out for and supported each other:

K does not communicate with words but points at things and makes sounds as M [support worker] guesses what K wants; the coffee is obvious, K always starts her day with that, the radio takes a bit more guesswork. K points and M asks ‘is it the window? Do you want it closed?’ K makes a sound that is a clear negative. ‘Is it the drawing, do you want that?’ Another no from K. ‘Is it the radio?’ MA [person in K’s group] suggests. K nods energetically and makes happy sounds. M puts the radio on and K smiles.

DOP_1, ethnography notes 11 May 2022

N says the card J sent him [after his mother died] meant a lot. J asks about N’s brother; he seems not to know he passed away this year too. N says he died. ‘Oh no! You’ve had a bad one this year’, says J. The two men keep talking and J says he was always asking about N, ‘I wanted to know you are okay’, he says and he looks concerned. ‘I’m all right’, says N.

DOP_1, ethnography notes 16 November 2021

Understanding and affection in Shared Lives

A core feature of the Shared Lives model involved the in-depth knowledge and understanding Shared Lives carers develop about the person or people they support and what appears to be genuine affection. Observation notes include examples of humour, ‘banter’ and thoughtfulness as participants were involved in family life, including celebrations and holidays:

They [Shared Lives carers] went on to say that if possible, everyone that is living with them will be living with them for as long as they wish to – which they assume will be forever. This was particularly in relation to G, as he is older than everyone, aged 75. There was what seemed like obvious love in their voices when they spoke. More than once [Shared Lives carers] referred to themselves, their children and the people that lived with them as an ‘extended family’ or a ‘family’.

SL_2, ethnography notes 23 October 2021

[Shared Lives carer shared that] W loves to celebrate things. When they went out to lunch today, as they do every Friday after shopping in town for themselves and for food, W raised her glass and said ‘here’s to summer’. It’s a really warm, lovely day today. S [Shared Lives carer] says they put the Christmas decorations up early every year because W is eager to start the celebrations. They make a big celebration of Valentine’s Day, Easter, Halloween, New Year’s Eve, birthdays etc.

SL_2, ethnography notes 29 April 2022

The intimate knowledge of people they support meant that Shared Lives carers could be responsive and adaptable. For example, plans for one visit were changed at the last minute from a restaurant meal to a trip to the bowling complex with less emphasis on eating, as one participant had recently had increased seizure activity and eating could be a trigger for this:

E […] said she has one person who stays that does not want to go out. She likes to go to the shop for snacks and watch films in the quiet room. E said that when this person started staying with her she felt like she was failing her in that they didn’t do anything – over time and through discussions with the person, other support staff and the person’s family, she has realised that her home is used as a time away from a busy environment and that this person likes to spend quiet time on their own in this way when they get the opportunity.

SL_1, ethnography notes 6 October 2021

The final aspect to thriving was the sense of belonging apparent through participants’ talk and actions, and observations of wider interactions within the community. Participants were involved with the extended family of their Shared Lives carer, including their children and grandparents. In this extract, the researcher talks about the relationship between the Shared Lives carer’s (Gl) parents and G:

GI’s parents shoot game. When Gl’s parents visit, her dad is really coming to see G and will head down to see him in the fields before seeing anyone else. They have a lot in common and are quite alike in their personalities as well. G will mention him often and will pick up little gifts for him such as a mug with a pheasant on when they were recently in a shop.

SL_2, ethnography notes 3 November 2021

One visit involved a trip to a charity shop where a staff member had put aside CDs for the participant. There were also examples of the blurring of formal support and hanging out:

A, who we will meet there is not staying at E’s today but she thought it would be nice if he was able to join us as all three men get along well and enjoy each other’s company. It will also be nice because this is like a Christmas celebration for the group, she explains.

SL_1, ethnography notes 8 December 2021

A further feature of the Shared Lives model was the planning ahead that was characteristic of the relationship between the PWLD and carer, or respite carer. During visits, researchers noted conversations about future holidays and activities, including a karaoke evening in the pub that was to happen during a future respite visit:

There are brochures on the table for coach trip holidays. A is flicking through one and Ronnie has one in front of him. A tells me that they are going on holiday together, motioning to R. ‘Yes’, R smiles. In the summer and to Scotland, A explains. E elaborates that they are thinking, Fort William, Loch Ness and Isle of Skye. E says that supporting two people to go on holiday this is not the norm, it is more often a one-to-one holiday or with the family of the SL carer.

SL_1, ethnography notes 19 January 2022

Lives shared with pets

An additional feature of Shared Lives, which was less pronounced in supported living, was that people shared their lives with pets. However, careful matching is also key here, as pets could present as a barrier to placement for some people:

Another excitable dog appears. G sits on the sofa, next to excited dog no.1. They are good friends and the dog licks G’s hand … G didn’t say much when we were in the house and when he had finished his tea, he petted the dog some more. He looked very relaxed. I spoke to G a couple of times, using the dog as a subject; he listened and either said ‘aye’ or ‘right’ – I wasn’t sure. The dog got down from the sofa and it seems that was all that was keeping G anchored to the house.

SL_2, ethnography notes 23 October 2021

W then asked S [Shared Lives carer] if [dog] was going to come [to a fair] too – [dog] was the long-haired Chihuahua who was paying particular attention to me and W at this point. S said no, [dog] wasn’t going to come because she would only bark at all of the dogs there if she did. W found this comment amusing and helped [dog] onto the sofa, looking at her lovingly.

SL_2, ethnography notes 29 April 2022

Even as something as simple as pets now can be very difficult. We’ve had a number of referrals that have come through that individuals don’t want to live in a household that’s got dogs. And you think, all of a sudden, you start looking at your carers that you’ve got vacancies in and you think, ‘My goodness. I haven’t got any that haven’t got dogs’.

SL_2, interview with Shared Lives co-ordinator

How much support? How much independence in independent supported living?

Supported living, in particular, appears to function as an umbrella term under which levels of independence and support vary significantly, producing mixed results for older PWLD, even within providers rated excellent. In addition to grouping people together in what resembles small-scale institutions rather than living in the community with support, we found examples of poor support, which could be grouped into two categories:

1. People’s lives subordinated to inflexible staff schedules and routines, and at the mercy of staff shortages (illustrated by people having to wait an unreasonably long time for activities, however simple; fun activities being interrupted or cut short due to staff shift changes).

2. Support is minimal, meaning that while people are kept physically safe, their lives are constrained, limited and characterised by abject boredom (this included spending entire days inside with the TV on; being put to bed for the night as early as 5 p.m. with the radio on). These findings are particularly troubling, given the good reputation of all the providers in our sample.

Relatedly, our research suggests that small providers with strong values, where management are connected to what is happening, are more able to offer consistently good support than larger organisations where good practice and excellent support can exist alongside examples of support that is less good, or outright poor. These issues can be exacerbated by big providers expanding and absorbing staff from other organisations.

There were further contradictions and inconsistencies in the findings. Some features designed to prepare people to live independently seemed to counter the values of the organisation, such as choice and being person centred. For example, regular rental inspections are arranged in ISL_4:

So we do it sort of above board so they’ll get a letter in their letterbox or handed to them seven days prior to the inspection and then we’ll let them know that we’ll come and inspect the flat in 7-day time. And they’re involved in that as well and then come the end of that if there is anything they’ll be set whatever actions they need to get done. And then we give them maybe another week or two weeks depending on what needs doing.

ISL_4, interview with manager

This provider also took an alternative approach to staff consistency in that each person had at least one key support worker who overlooked and co-ordinated the support provided. Key workers were changed every 6 months so that people did not get too dependent on one staff member. There was also some contradiction between perceptions of staffing levels at this site and the use of agency staff. There was criticism that working with agency staff put the staff members under additional pressure, as the time needed to update the new member of staff took away from support time. The use of agency staff was also raised by a family carer:

They try, I know they try to employ the same ones. But I find it very upsetting that somebody goes in and gives her very personal care and [she] doesn’t know their name.

ISL_4, interview with family member

Nursing Care Home 2 (NCH_2): reflections on the commissioning and development of a new inner-city service

The proposed service in many ways runs counter to examples of good practice observed in other sites and to the direction of travel as set out in wider policy (e.g. Building the Right Home,81 NHSE;81 CQC). Plans for NCH_2 evolved around the development of three key types of provision for the 10-bed household:

1. intermediate and therapeutic nursing care for people with complex needs to both treat and assess, for example, after a hospital discharge

2. respite care for people requiring more intensive clinical support

3. sheltered housing flats for people considering a longer-term move to residential care provision.

A co-design group included two family carers, a manager of a residential care home for autistic people, three LA representatives, three architects and two interior designers. Our analysis showed that a key dilemma facing this group was balancing the need to secure an in-demand site alongside the commissioning of 10 local beds specifically to support older PWLD against critiquing the model of care on offer (a large nursing care home). Learning disability best practice guidance emphasises the need to move away from institutional models. However, in practice this had to be offset against the potential benefits of remaining near family, friends and familiar places. The co-design group attended to this tension by considering how to best personalise the space, arguing that it had to be flexible and future-proofed while acknowledging the need to adopt a ‘try it out and learn’ approach. A key concern was how to create homeliness within an environment that needed to (1) support physical health needs and (2) meet the emotional and sensory needs of people with complex behaviours. We observed a lively discussion about the potential positioning of a ‘nurses’ station’ and active resistance to both the term and the concept from family members who felt that it overly medicalised someone’s home.

Nursing Care Home_2 offered useful insights into the challenges involved in growing capacity for local services for PWLD as they get older, while adhering to models of excellent care. We observed commissioners, LA representatives, family carers and design experts working collaboratively to address some of the resulting dilemmas, while acknowledging that they were working within the constraints of the site afforded to them. There was little engagement with PWLD about the evolving plans, although the project manager indicated that this was forthcoming. Critically, it became clear through our research that there is a significant gap in the current research and practice literature regarding best practice guidelines for the commissioning and design of housing for older PWLD with complex health needs.

Considering excellence

The premise of WP3 was to conduct an ethnographic study of providers identified as excellent from WP2. The criteria for judging excellence are outlined in Chapter 2 (see Table 3). Our analysis allowed us to identify the key factors, environmental, organisational and social, that shape excellent support, and we consider these below. Because of the variation across and within models, we suggest that lives that are visibly growing (in myriad ways) are a measure of excellence no matter what the model of support. Being supported to live on one’s own terms and to grow and expand relationships, interests and aspirations are defining aspects of excellence.

We also found evidence of static or constrained lives even when the provision was identified as excellent. This suggests a disconnect between those who commission services and what is happening on the ground. While the quality of provision may change in a short period of time due to staff shortages and other factors, our fieldwork and analysis revealed long-standing examples of poor practice, such as people being put to bed early and spending the day watching the television. There was also little consideration for supporting people to work and uneven support for people to have romantic and other social relationships.

Critical look at the factors that enable or impede excellence

Objective

The objective was to understand experiences, hopes and concerns about future planning, from the perspectives of older PWLD currently living at home with parent(s), and of their parents and their siblings.

Sample

Participants were recruited through family and carer organisations, including the Public Co-ordinator Vaid, and via social media. The sample comprised:

• nine PWLD living at home with their parent(s) (aged ≥ 40 years, mean age 46 years)

• eleven parents of a daughter/son aged ≥ 40 years who lived with them (mean age 73 years)

• nine siblings of a sister/brother aged ≥ 40 years who lived with their parent(s) (mean age 50 years)

• seven siblings of a sister/brother who had lived with their parent(s) until age ≥ 35 years but whose circumstances changed following parental death or otherwise (mean age 61 years).

Thirty-two participants were white/White British, three were black/Black British, and one was Asian/Asian British. Eleven participants were male and 25 were female.

Data generation

Semistructured interviews and focus groups took place January 2021–May 2022. Focus groups can help participants with learning disabilities feel supported to express their opinions and hear other similar experiences. 129,130 Participants were given the choice of an online interview or in-person focus group, which was conducted by a researcher and co-researcher.

Interviews and focus groups with PWLD took place over two or three meetings to ensure participants felt comfortable, and to enable meaningful participation. PWLD were given the option of having someone (not a family member) present to support them. Flexible methods included adapted versions of Books Beyond Words (wordless stories in picture format) and Talking Mats™ (a visual framework that helps people to understand and respond more effectively).

Data analysis

The team held debriefing sessions and the interviews and focus groups were recorded, transcribed verbatim, and analysed using Framework analysis. 131 This is a systematic way of organising the data by creating a matrix that summarises themes and participants. It is an adaptable and flexible method that has the advantage of allowing the engagement of people without qualitative experience, including co-researchers. Transcripts were read several times and key themes were identified. The research team discussed the themes using pictures and sticky notes with additional reflections in an analysis workshop. This workshop led to the development of four questions, presented in Figure 2. A coding framework was developed and applied to the transcripts. Themes, subthemes and interpretations were discussed within the team as the analysis developed. Comparisons were made across participants to identify different experiences, hopes and concerns, and to ensure that the analysis represented the data set. Pseudonyms are used throughout this chapter.

FIGURE 2.

Themes identified in WP4 stage 1 interviews and focus groups.

Stage 1 findings

Families were acutely aware of the importance of planning ahead. This was an urgent and crucial component of their own EOL planning. How this was addressed varied from actively looking for solutions to ignoring the issue. Participants had clear ideas about what they would like to happen in the future, but they were not sure what future options were, or had become convinced that suitable solutions were lacking.

The central concern was what matters for the PWLD to ensure that they have a good, happy life. ‘Having control and independence’ and ‘being valued’ were crucial to this. Participants raised questions about what the options were, when planning should happen, and who could help with planning.

Summary of stage 1 results

• Families were acutely aware of the need to plan ahead, and worried about the future.

• PWLD were aware that their situation would need to change in the future.

• Participants were concerned about the loss of independence and control, and of not being valued.

• Participants did not know how to find suitable future solutions.

• Participants felt that there was a lack of suitable options and a lack of support from social services.

• Participants did not know who to talk to, and most did not talk about the future with their family.

• Some participants actively sought solutions, while others did not engage in planning alternative living arrangements.

• This further reduced opportunities for PWLD to lead autonomous lives.

Objective

The objective was to co-design resources for supporting older PWLD who live in the parental home, and their families, to prepare for parental death and transitions in care.

Design and data collection

There is increasing recognition of the importance of involving patients and the public in research and service improvement through co-design and co-production methods. 132 Stage 2 used a modified version of experience-based co-design as described by the Point of Care Foundation. 128 This approach aims to make meaningful changes to services by centring service users and health and social care staff experiences, and collaborating with these stakeholders to develop solutions to the issues they raise. The adaptation version focused on the experiences of families and PWLD, who chose to invite staff views and input where relevant. Key areas of concern were identified through a process of workshops and working together to address them.

The process involved creating a ‘catalyst film’ using film extracts from the interviews from stage 1. This film included the following sections:

• When should we plan?

• What are the options?

• Can I keep my independence?

• Who will help us to make plans?

• Will it work?

• Who will support us in the future?

A co-design group was created and attended 12 online workshops to co-design resources to help older PWLD and their families plan ahead. Each session lasted 2 hours. This was followed by an in-person celebration event. Feedback on the sessions was collected after sessions 3 and 12 using Easy Read questionnaires (see Report Supplementary Material 13).

Sample

Participants were selected from the stage 1 participants. Eleven people consented to participate, of whom eight regularly attended meetings. A core group comprised four PWLD and four parents. Two sets of participants were from the same family (with both the PWLD and their parent taking part).

Data analysis

The co-design sessions were recorded, but the data were not formally analysed as this stage straddled service development and research. There was a continuous appraisal and feedback loop, with team discussions, during the development of the resources.

Results of stage 2

Reflections on the co-design process

Stage 2 output

A newly developed set of 102 ‘Planning Ahead’ cards (available in physical and digital formats; https://sway.office.com/5LjAwlV0OFsHjBAj) are designed to help families to prepare for meetings with social workers to discuss future plans (Figure 3). They are accompanied by a ‘Me and my plans’ booklet in which families can write down what they discuss and write a ‘to do’ list for future planning.

FIGURE 3.

Example ‘Planning Ahead’ card.

Cards are A5 size and include a picture, a label and prompts for discussions. There are seven categories of cards:

• things I like to do

• things I might need help with

• home: what is important?

• people in my life

• about me

• mum and dad getting ill or dying

• information cards.

Objective

The objective was to introduce and evaluate planning cards to support older PWLD and their families to prepare for parental loss and alternative living arrangements.

Design

Small-scale evaluation study and stakeholder feedback sessions.

Sample

The sample included eight families of PWLD (aged ≥ 35 years) who live at home with their parent(s). The cards were aimed primarily at family carers (parent, sibling or other close relative), but their relatives with learning disabilities were included as study participants if they were able (and wanted) to give informed consent. Seven parents, 1 sibling and 4 participants with learning disabilities were included (a total of 12 participants).

There were five relevant stakeholder groups, including the Public Advisory Group and the Greater Manchester Growing Older with Learning Disabilities (GM GOLD) group, and PWLD from 3 day centres who were interested in planning ahead.

Stage 1 participants who had not been part of the stage 2 co-design group were invited to take part in stage 3; gatekeepers from relevant organisations passed on study information to potential participants; and social media was used to publicise the study.

Data collection

Results of stage 3

Feedback on the cards from 12 family participants (7 parents, 1 sibling and 4 PWLD) and 5 stakeholder groups is presented below alongside an outline of actions taken as a result of this feedback. Family participants indicated that they used the cards one to three times over the 2-month period, sending the feedback questionnaires back at the end of this period. Those who provided feedback on individual cards did so for four to seven cards (all looked at cards from several different categories). Two families provided feedback on whole categories for two to four categories. Stakeholder groups gave general feedback about the cards as a set, with some comments about specific cards.

Summary of stage 3 outcome

• Families found the ‘Planning Ahead’ cards useful and fed back that the cards were well designed and covered relevant topics.

• The cards have the potential to help families of PWLD begin to make plans for their future care/living situation. However, without professional support to put plans in place, families could end up feeling more concerned but unable to take actions to address these concerns.

• Feedback suggested that the cards could be used more widely than within families and that social care professionals could be involved.

• Changes to cards and accompanying information were made including an additional six ‘questions’ cards to make prompts more accessible.

• Cards will be made available to PWLD, families and professionals.

What people want and need

A key barrier to planning was not seeing viable alternative living situations that would allow people to live a life based on being valued and having control and independence. Moving out of the parental home should be an opportunity for increased autonomy and independence, but PWLD and their families were concerned that it could have the opposite effect without the support to continue choose what the person does, with whom, and when.

Similar to WP3 findings, participants wanted to live alone (or with someone else they chose); be near family and friends; be supported by people who know them well and care for them; live in a location that suits their lives; and have control over what they do and when. However, this felt out of reach for many families and in some cases led to parents not making plans. Although WP3 findings show that good support is possible, it also found poor practice even in apparently excellent providers, suggesting that parents’ fears are well founded.

The planning process

Once PWLD and their families decided to plan for future support, they needed information about what might be available and how to start the planning process. Many worried that they would be slotted into ‘voids’ rather than having support built around what they need. There were concerns, particularly from families of people with more profound learning disabilities, that institutional, residential care would be their only option, reflecting concerns raised in previous studies. 34 Families wanted information about alternative models of support, including examples from other PWLD who had moved and were living good, independent lives, supported by people who know them well.

Most participants found a lack of professional support to make plans. Conversations with social workers or other LA staff were seen as a hoop to be jumped through or a barrier to planning. Participants presented a picture of an overstretched system only able to respond to a crisis, reflecting WP1 findings of a lack of systemic approaches and support for planning for older age for PWLD and their families. The issue of reactive social services was highlighted in the 2012 government White Paper Caring for our Future: Reforming Care and Support,135 which called for people to have the information and support to make a choice between high-quality options. Our findings suggest that little has changed in the last decade.

‘Planning Ahead’ cards

Work package 4 originally proposed developing a ‘decision aid’ to use with social care professionals to plan ahead. Stage 1 showed that barriers extended beyond families needing help to make a defined set of decisions. Co-design participants wanted resources to give them confidence to tell social workers what they want and need. The ‘Planning Ahead’ cards were designed to help start conversations within families, highlight in detail what is important to the person and what they need, and help them to make the case to social workers and LAs about why these factors are important and should be supported. Initial testing of these cards suggested they have the potential to be a helpful first step for PWLD and their families wanting to make plans for changes to their living and support arrangements.

Where are the social workers?

Attendees discussed current pressures within social work including poor pay and conditions and how the role has become one of reactive practices largely focused on crisis management. The question of who is responsible for co-ordinating support and being the first point of contact for PWLD and their families was discussed. Should or do social workers have an elevated responsibility to oversee support for PWLD as they grow older?

Why are families still so concerned about the future of their children?

Attendees stressed that most families love and care, but are also scared to think ahead. Stories about abuses in social care settings and previous experiences with support services further erode trust that the system will support their relatives. Concern was raised that families will be prevented from being involved in the lives of their adult children in the future.

Why is good support still so rare?

A lack of money and resources, and the unequal distribution of these, was discussed, as were related staffing issues around pay, poor conditions and retention, poor service culture and lack of effective leadership. There is a lack of knowledge about what support is available and a lack of awareness of what good support looks like. Good practice examples need to be amplified and shared, and a focus on values-based recruitment is needed to change organisational culture.

There are further systemic barriers to employment and other opportunities for PWLD, and the lack of recognition that people are growing older means that changing support needs can be misinterpreted as somehow ‘going backwards’ or failing.

This question was challenged by some attendees, who attributed the lack of good support to individual staff members.

Who is responsible for older people with learning disabilities who do not have a family?

Answers included PWLD themselves, the state, and all of us, although the last position is ambiguous, and there was acknowledgement that while ideally society would be there to take responsibility, in practice the negative views that many people still hold about PWLD undermine this aspiration. Discussion touched on unsupportive families or families who lack trust in social care provision, the way in which older PWLD are framed negatively, and the interdependency that can develop between PWLD and family members as they grow older. The well-being and preventative strategies embedded within the Care Act were acknowledged as failing in practice.

Why is there so little focus on people ageing?

There was consensus there is a broad assumption that PWLD do not live to older age. Furthermore, the focus on independence as the goal can potentially skew views on people becoming dependent. This in turn can be seen as a failure of services, as opposed to being considered part of growing older.

How do you know that support is good or excellent?

The importance of ongoing feedback from people being supported and their families and evidence that feedback is acted on was seen as central, alongside observing interactions between PWLD and staff or asking if people are happy. The respectful use of language and connections and affection between people were flagged as important, together with evidence of person-centred solutions and the importance of supporting relationships and enabling PWLD to learn new skills. Evidence that people are supported to be part of their community is a further indicator of good support. Asking service managers was suggested, as this group have a good idea about what is happening on the ground. The point was made that you need to experience good support before you can recognise it.

What helps or could help people to find good or excellent examples of support?

Here answers included sharing knowledge about good support and being familiar with what is important to people. The use of paid quality checkers with lived experience to generate knowledge about good service provision was supported, and questions were again raised about people who may not have family advocates, for example, people in long-term institutionalised care.

Why did we find poor support when the services were judged to be excellent?

This was a fundamental question to our project, and feedback was wide-ranging. Attendees commented that there is a wider lack of aspiration around the lives of PWLD, which allows the drift of staff into doing little, particularly in early post-pandemic conditions when new staff might have thought limited activities were the norm. Commissioners and PWLD and their families may have different priorities. Attendees discussed the lack of knowledge that some commissioners have about services, while there was acknowledgement about the engaged commissioners who participated in WP3 and, indeed, some of those in attendance at the event. While the importance of spending time in services was again raised, commissioners responded that this is not practical given the number of services involved. The question of social worker involvement re-emerged, and it was suggested that commissioners (or social workers) could approach potential issues in a more collaborative way by asking ‘We have noticed that this is an issue; how can we support you?’.

Issues around resources for service commission and ensuring that staff match the person’s needs with consistency over time came up again. The paradoxical consequence of family members sometimes accepting poor support because they did not want to disrupt the person’s life with a potential move was linked to discussion about situations in which part of a service may not be good rather than the whole.

Who is and who should be responsible for making sure people have good lives?

In the second event this wider question again led to a lack of clarity or consensus. ‘All of us’ (including local councillors and members of Parliament), commissioners, social workers, ‘decision-makers’, PWLD themselves, and family members were suggested by some attendees. The point that ‘everyone’ can mean ‘no one’ in practice was made, as was concern that family carers should not be expected to take responsibility across their lifetime. The importance of good leadership, co-operation and a collective responsibility were again highlighted.

Key points identified across both events:

• a lack of attention to PWLD growing older

• a lack of resources for commissioning and provision

• reactive rather than proactive practices and a lack of sharing or recognising good practice

• a lack of resources to provide excellent services

• a shortage of information and knowledge about good services

• ambiguity around who is responsible for co-ordinating the support for people as they grow older

• the failure of the Care Act to improve the lives of PWLD

• high turnover and failure to match staff with needs and interests of PWLD

• a lack of trust in services on the part of family carers and PWLD.

Recommendations that raise awareness and improve access to information

• Accessible information should be provided about options and good support for PWLD, family members, commissioners, providers and staff. Provide opportunities for families/people to find out what their and their loved ones’ options are, what good support is available and give them an opportunity to visit places that offer excellent support. It is important that PWLD and family carers are aware of what good support looks and feels like. Sharing examples of good support among commissioners, providers and support is important.

• Produce better statistics about how many PWLD there are and what support they may need in the future. This is particularly crucial for families not known to LAs.

• Start conversations earlier about where people want to live in the future.

Recommendations that improve oversight and lesson learning across the sector

• Introduce peer learning and critical friends among providers and commissioners. Make good practice well known and have an open and supportive peer-learning set-up.

• Fund self-advocacy groups to support people in making choices locally.

• Regularly and proactively listen to people and their families.

Recommendations that improve individual support

• Match staff to people, encourage and sustain good relationships between the person and staff and avoid frequent changes of key workers.

• Change staff appraisal processes to become more celebratory and focus on the small things that make a difference.

Cascading session plans and materials

To reach a wider range of stakeholders and enable the involvement of self-advocacy groups in the co-production of recommendations, we created three 1-hour session plans for self-advocacy groups to engage with independently. Each session plan was produced in standard and Easy Read versions (see Appendix 5). The sessions focused on growing older well, making plans (including EOL plans) and how providers can work better. Each session included a short activity (a wordsearch or simple crossword in the standard version; a spot-the-difference colouring picture in the Easy Read version), a comic (standard version) or Easy Read information about the topic of the session based on our preliminary findings and a set of questions for the groups to consider and engage with (example questions: ‘Can you think of some things that help to make a home a caring place?’; ‘Do you have any ideas about what might help PWLD grow older well?’).

The session plans were shared with seven organisations that expressed interest via social media or team networks. We received feedback from a self-advocacy group based in the north. The feedback carried similar recommendations around relationship building and community belonging of PWLD, as well as around person-centred support. Additional issues around ageing were highlighted, such as those faced by PWLD who cannot rely on their family for support and advocacy. The sessions also offered additional recommendations around:

1. Healthy ageing, with focus on regular health checks, general practitioner (GP) appointments, and related follow-up measures. The need to increase awareness of health inequalities, healthy nutrition and physical activity was also identified.

2. Staff recruitment and values, where staff should be recruited based on being kind, encouraging and knowledgeable. Staff should also be able to take on difficult conversations and have capacity to build relationships with people they support.

3. Support choice, with ‘try before you buy’ schemes to ensure that people are not stuck with support that is not well matched to the person.

Supporting older people with learning disabilities and their families: a course for health and social care practitioners

This is a 6-hour module, comprising six ‘sessions’. The introduction outlines the course structure and approach, provides details about the underpinning research and sets out the core learning outcomes. It introduces the ‘Quilt of excellence’ and invites practitioners to reflect on their understanding and experience of the term ‘BTCO’ and what this might mean in the context of people getting older. The next four sessions are organised around individual case studies: ‘Becky’, a woman in her 40s, currently living with her parents and preparing to move; ‘Geoff’ a man in his seventies, who living with Shared Lives carers; ‘Robin’, a man with a history of being moved around services (often out of area), now settled in a Supported Living home in his local community; and ‘Susie’, a woman in her fifties with complex health needs, living in a residential care home with nursing provision. Students are invited to engage with extracts of empirical data relating to each person, reflecting on the implications for their own practice. For each case study, we sought additional consent from the person and/or their family members to include their material. The course concludes with a session synthesising the key learning points, an activity exploring how to use the WP4 ‘Planning Ahead’ cards and revisiting the ‘Quilt of excellence’ with an eye to broader systems-based issues.

Supporting an older family member with learning disabilities: a course for family carers

This 4-hour module comprises six sessions focused on providing family carers with practical advice to support planning ahead and to help build resilience. The introduction outlines the course structure and core learning outcomes. Throughout the course, learners are encouraged to keep a log of ‘top tips’ that they can return to (during the course and in the future) and adapt to their own circumstances.

Session 2 explores what is meant by planning ahead in the context of an older family member with learning disabilities, using case material from ‘Becky’ and her parents. Session 3 focuses on developing a plan and draws on the example of ‘Sam’ and his sibling ‘Mel’, reflecting on the experience of planning ahead in the context of Shared Lives provision. Session 4 supports learners to develop skills to advocate for an older family member (and for oneself) to successfully plan ahead. Session 5 explores how family carers can look after themselves and protect their health and well-being in the context of planning ahead and advocating in older age. The final session brings the learning together and introduces students to the ‘Planning Ahead’ cards and ‘Quilt of excellence’. Students are invited to reflect on their top tips list and decide on some next steps.

The courses can be found here:

www.open.edu/openlearn/health-sports-psychology/supporting-older-people-learning-disabilities-and-their-families/content-section-overview?active-tab=description-tab www.open.edu/openlearn/health-sports-psychology/caring-older-family-member-learning-disabilities/content-section-overview?active-tab=description-tab

Full project outputs are listed in Appendix 4.

Co-applicant training

Training in the value and importance of being public contributors, ethical issues and how to participate with confidence in research was provided by an experienced public contributor. This training provided a short introduction to the research world and emphasised that the public bring an essential perspective.

Key members of the study team attended online Easy Read training. Aside from being enjoyable as an initial team event, this training set the tone for communications across the whole study team and the length of the project. It is an outcome that the public involvement lead is particularly proud of.

Co-researcher training

Co-researchers were trained through a bespoke course developed through a related NIHR School for Primary Care Research-funded grant (see Chapter 4).

To prepare for WP4 data collection, four video-conference training sessions on conducting online interviews and focus groups with PWLD were attended by three self-advocate team members and three PWLD who were graduates of a previous research training course.

Recruitment of staff

Co-applicants with learning disabilities were on the interview panel for project researchers. Public representation on these panels provided insights into candidates’ abilities to communicate with family carers and PWLD. Candidates were asked to consider how they would fully include family carers and PWLD in the study. This was vital when deciding who would be best placed to work on the project.

Work package 1: rapid literature reviews

The public involvement lead commented on draft protocols for the first two reviews. Given the paucity of published research, the authors considered combining the two reviews when writing up the findings. The Public Advisory Group advised the authors to keep these separate to make it easier to communicate the key messages.

Work package 2: service mapping

The WP2 mapping exercise was explained to the Public Advisory Group. Members found the work interesting but were keen to learn of the perspectives of PWLD and family carers in WP3, which they thought would show what was excellent provision.

Work packages 3 and 4: case study ethnography and end-of-life care qualitative studies

The Public Advisory Group and GM GOLD team provided the study team with insights to help with the fieldwork. This included:

• Advice on how people cope during difficult times, to help identify relevant issues for researchers, to inform the wording of interview questions and to explore how PWLD might deal with challenging times.

• Thoughts on what was important for the ethnography to look at such as work, holidays, activities, relationships, home décor, and belonging to self-advocacy groups.

• Discussion about what is important for researchers to consider when they go into people’s homes. This included the possibility of being told to leave at any point in the fieldwork.

• Discussion of issues around payment and practicalities of carrying out fieldwork.

• The use of one-page personal profiles for researchers to give to participants ahead of fieldwork.

• Ensuring participants had time to prepare and were given advance notice of what would be covered in interviews.

• Thinking about formats in addition to the Talking Mats communication tool used in WP4.

The public involvement lead suggested that participants with learning disabilities should be encouraged to be supported by an advocate or close family member and that participants should be ‘checked in’ with afterwards.

Team members attended GM GOLD meetings. Co-researchers discussed how they felt about travelling to some of the more distant study sites and what support they would need to do this. The meetings also gave academic researchers and co-researchers opportunities to get to know each other.

The Public Advisory Group was instrumental in retaining a case study site which temporarily withdrew from the project because of COVID-19 pressures. The group advised the team to work with the provider, offering extra support to make it easier for them to take part in the research. The study site was retained.

Recruitment in WP4 stage 1 was challenging due to the very specific inclusion criteria. The public involvement lead participated in a recruitment video and snowballed recruitment materials through a carers’ organisation. The Public Advisory Group also encouraged us to revise the inclusion criteria for participation, which resulted in a change to the protocol and ethics approval and enabled additional perspectives to be included in the research.

The group contributed ideas on the format and design of the WP4 ‘Planning Ahead’ cards across the process of development, printing and evaluation.

Work package 5: co-production of resources and training materials

Public contributors played a central role in the three stakeholder groups, chairing the first two events and contributing across all three events. Some members of the Public Advisory Panel and GM GOLD team attended.

Public Advisory Group members contributed to the development of the two OpenLearn courses, notably through involvement in the expert panel format that was used for both courses and agreeing overarching themes and learning outcomes for the two courses. Feedback was provided on Easy Read materials for the stakeholder events and cascaded session plans.

The training resources for doing ethnography were used in a February 2023 event with organisations that work with PWLD across the UK, reviewing how quality checks of health and social care services by PWLD and family carers are conducted.

Public engagement and dissemination

Public team members provided comments on the Easy Read briefing sheets, press release and the project plain language summary, and co-authored a Care Management Matters article. 94

Having co-researchers with learning disabilities led to several benefits for the research:

• Initiating and opening up conversations: one GM GOLD team member started talking with a participant about their experiences of using walking aids, a topic that the researcher would not have considered. Another team member started a conversation about video games that led to the participant being more engaged with the fieldwork.

• One co-researcher knew people at one of the sites. This was useful in helping to gain access and people’s trust; however, the co-researcher (and probably participants) found it strange at first to ask people questions about things they already knew.

• A WP4 participant asked the researcher with learning disabilities about his experiences of moving into a supported living setting, leading to a rich conversation.

Person with learning disabilities can be supported to age well

We found the conditions necessary to support people to live good lives as they grow older are not exceptional: being supported to live alone (or with a partner) in a home that is comfortable, adaptable, personalised, in a community, possibly with pets, a garden or access to outside space, with the support of people they like and who like them.

Achieving this involves knowing the person well, matching staff and having staff consistency, working with families, and proactively engaging with professionals and services that support people to age well, and having the requisite skills and knowledge to understand and recognise the physical and mental health, social and emotional changes associated with ageing. The relationships between PWLD, support workers, professionals and family members are key to living a good life, and this involves effective communication, time and a sharing of knowledge, the co-ordination of specialised, bespoke and person-centred planning and a focus on pre-empting and responding to ‘health-related loss’,70 including the involvement of primary care and, where required, the learning disability multidisciplinary team (MDT). The sharing of experiences of what works for each person with commissioners is key to planning for that person and informing future commissioning for others. Good practices such as EOLC planning, dementia assessment and management need to be embedded as routine.

An absence of engagement with, or recognition of, the ageing of people with learning disabilities

There is a lack of relevant expertise around how to commission, design and deliver services for this group well. There is an absence of specialist knowledge or even recognition about the needs of this group, including issues around good support (health and social care) and design. We found the LA was trying to find evidence or examples to help with designing the new service in NCH_2.

While there is growing research around good service design for older people, including people with dementia, a large gap remains for older PWLD, including those with additional needs. This lack of attention or consideration paid to the ageing of PWLD leads to a lack of opportunities for people to lead fulfilling and meaningful lives as they grow older. This absence is also reflected in the literature as our reviews demonstrate. In effect, active ageing8 is denied to this group.

Consistently low levels of ambition and aspiration

While we found that people living lives that continue to grow and expand is a measure of excellence, we also found evidence of static and constrained lives that were unnoticed or unremarked upon by social care staff. The low levels of ambition and aspiration ascribed to this group are underpinned by common assumptions. For example, existing research and our findings reflect a consistent assumption that family carers should be supported to provide care for as long as possible, individualising caring responsibilities while, at times, also failing to engage with the views, wishes and ambitions of PWLD. Related to this is the tendency for discussion around planning ahead to be tied to people who are already older.

The potential development of mutual caring interdependencies that obstruct or block future planning36 should be viewed as a concern rather than an explanation for the lack of future planning. There is an uncomfortable circularity here that runs counter to policy rhetoric around PWLD having independence, autonomy and control. The strengths of a Shared Lives model are ultimately undermined by this model mirroring the experiences of older family carers and PWLD who continue to live together. It therefore presents the same challenges of carers growing older and unable to continue to provide support. The use of day centres embedded within this model also runs counter to the notion of people living ordinary lives. While we found that well-designed day services can function as sites of belonging and community, we question whether the stated aims of a day service – that is a day opportunity – is really met. Although it seemed to meet the need to belong with peers, it did not support belonging to the wider community, and we question the actual opportunities on offer. We were left unsure whether they are places people go because it gives them something to do, and why are they do not offer access to wider community activities.

A lack of knowledge about what good support looks like is also part of this problem. Again, here the needs of the family carer can over-ride those of the PWLD, as people can remain living in a place that is not appropriate because the family carer thinks it is safe and familiar. This, in turn, may relate to the reported disillusionment and lack of trust family carers have in the ‘system’.

A lack of current and accessible information, resources, support and ambiguity around the responsibilities

There is a lack of up-to-date and accessible information about what support is available in local areas and more generally a lack of knowledge about support options and rights. Evidence underlines the importance of the role of social work in supporting people to move to a new home before ageing associated problems begin (and interdependency develops). However, the lack of social work involvement or even visibility is striking in our findings. There is, furthermore, a lack of clarity around who is responsible for co-ordinating the future planning for PWLD, meaning that family carers take this role by default, which can be burdensome. It also leaves older PWLD who do not have family unsupported. The stress and sense of panic that family carers feel was part of the rationale for this study and has been confirmed and explained by it.

The unhelpfulness of the label ‘behaviours that challenge others’

Our findings underline how the use of this label is problematic and can be used to legitimise and justify practices of poor support. Attention should always be paid to addressing causes of distress rather than labelling it. This is particularly pressing given the financial costs of managing ‘BTCO’ through bespoke training and programmes. WP3 findings demonstrate that when people are supported to live good lives, the label of ‘BTCO’ they might have acquired in the past becomes irrelevant. We therefore need to refocus our attention away from labelling people and behaviours and towards quality support and solutions that allow PWLD to thrive as they grow older.

Finding poor support in services identified as ‘excellent’

The fact that WP3 found examples of poor support within the carefully selected – through WP2 – exemplary services points to an issue in how excellence is identified and monitored. This has implications for how commissioners monitor the quality of services, how often they do so, what evidence they seek and from whom they seek it. WP2 commissioners cited a shortage of consistently good provision, so innovations such as the proactive approach by one large CCG and its LAs to invite their best and other new providers to work with them on a new commissioning framework are promising. How this delivers over future years will also require a more proactive approach to quality monitoring involving feedback from PWLDs, families, and health and social care agencies. Strategic oversight at integrated care system level as modelled from the Safe and Wellbeing Reviews of people in long-term inpatient care, including an NHS senior responsible officer for learning disability and autism, people with lived experience, provider collaborative representatives, and clinical and LA input, may be well positioned to both monitor provision and forecast so that provision can be commissioned enabling people to plan ahead with confidence.

Capacity-building

Opportunities for junior researchers in the team included an advisory role for an OU-employed lecturer in learning disability nursing to shadow project management meetings and contribute to outputs. Anderson has been provided with development opportunities including leadership courses and taking on increasing responsibility on the project. Anderson is now a co-principal investigator (alongside Tuffrey-Wijne) on an NIHR grant to improve EOLC planning for PWLD (NIHR202963). Keagan-Bull is a co-applicant and research assistant on the same project and research assistant on the Learning from Deaths Review (LeDeR) Project. Keagan-Bull’s work on the project has set the template for employing and working with researchers with learning disabilities at Kingston University. Other researchers have contacted the team for advice on doing the same in their institutions. Mikulak has been promoted to Senior Research Fellow and given a permanent contract at Manchester Metropolitan University.

Project resources and outputs

Appendix 4 includes a full list of the project resources and outputs, which include training materials to support researchers, PWLD and family carers to work together and undertake ethnographic research.

Details of the two OpenLearn courses will be shared with LA learning disability teams, learning disability regional nursing networks, university social work departments and family carer groups online.

The BASW resource for social workers will be published with a ‘Research Findings and Implications for Practice’ briefing on the BASW website along with a launch webinar. This resource will also be published on the Paradigm website and disseminated via the Gr8Support Movement to ensure that it reaches support workers.

The ‘Planning Ahead’ cards, project film and podcast will be shared via social media. The cards are being used in the National Lottery-funded Embolden 2 project.