Identifying the factors affecting the implementation of strategies to promote a safer environment for patients with learning disabilities in NHS hospitals: a mixed-methods study

Definition

The term ‘learning disability’ covers a wide spectrum of impairments. In the White Paper Valuing People, the Department of Health6 states that learning disability means the presence of:

• a significantly reduced ability to understand new or complex information and to learn new skills [impaired intelligence; intelligence quotient (IQ) below 70], with

• a reduced ability to cope independently (impaired social functioning).

These impairments start before adulthood, with a lasting effect on development.

The White Paper points out that presence of a low IQ is not in itself a sufficient reason for deciding that an individual should be provided with additional health and social care support. An assessment of social functioning and skills should also be taken into account. Many people with learning disabilities also have physical and/or sensory impairments.

The definition covers adults with autism who also have learning disabilities. It does not include:

• those with a higher-level autistic spectrum disorder, who may be of average or even above average intelligence – such as some people with Asperger syndrome

• all people with ‘learning difficulties’, which is more broadly defined in education legislation

• people whose impaired intelligence and/or impairments in social functioning (even if they are lifelong) have been acquired during adulthood, for example those with dementias or brain injuries.

Prevalence

There are no definitive figures for the prevalence of learning disabilities. The presence of learning disabilities is not recorded in the decennial census of the UK population, and no government department collects comprehensive information on the presence of learning disabilities in the population. The Department of Health6 estimated that around 2.5% of the population in England have learning disabilities, most of whom (85%) have mild learning disabilities. Emerson and Hatton7 suggest that 3% of children and 2% of adults have learning disabilities. The number of people with learning disabilities is set to rise by 1% per year. 6 It is estimated that, between 2011 and 2030, there will be a 14% increase in the number of people with learning disabilities aged ≥ 50 years using social care services, and a 164% increase of those aged ≥ 80 years. 8

Access to health care

Most people with learning disabilities have greater health-care needs than the general population. Common health problems include respiratory and cardiovascular diseases, mental illness, epilepsy, physical and sensory disability, being underweight, obesity, oral health problems and cancer. 14,18 People with learning disabilities experience more admissions to hospital than the general population. 19

Valuing People Now,20 which sets out the government policy and a 3-year strategy for people with learning disabilities, specifies the objective that all people with learning disabilities should get the health care and support they need to live healthy lives.

The Disability Rights Commission,17 established by an Act of Parliament to stop discrimination and promote equality of opportunity for disabled people, carried out a formal investigation into the health inequalities experienced by people with learning disabilities. Focusing on primary care, the Commission found that there were several reasons for health inequalities, of which social deprivation was only one. People with learning disabilities were less likely to access health promotion or screening programmes. They also experienced ‘diagnostic overshadowing’, that is reports and symptoms of physical ill health were viewed as being inherent in the person’s learning disability and so not investigated or treated. 14 Primary care services often remained inaccessible and unresponsive to people with learning disabilities, as they had not put into place effective adjustments (including policies and procedures) to change this.

In a progress report, the UK government – in recognition of the finding by the Disability Rights Commission that people with learning disabilities often receive a poorer quality of service from the NHS – pledged that it would use progress in relation to this particularly vulnerable group as a way of testing whether its approach to tackling health inequalities was working. 21

Premature deaths

The Department of Health22 quotes figures drawn from Hollins et al.,23 estimating that people with learning disabilities are 55 times more likely to die prematurely than the population as a whole if they are < 50 years of age; for those > 50 years of age, the figure is 58 times more likely. Hollins et al. also found that the majority of deaths were due to respiratory disease, which accounts for only 15–17% of deaths in the general population.

Hoghton et al. 24 assert that:

. . . health inequalities are the result of the interaction of several factors including increased rates of exposure to common ‘social determinants’ of poorer health (e.g., poverty, social exclusion), experience of overt discrimination and barriers people with learning disabilities face in accessing health care.

p. 5. Reproduced with permission from Hoghton M, Turner S, Hall I. Improving the Health and Wellbeing of People with Learning Disabilities: An Evidence-Based Commissioning Guide for Clinical Commissioning Groups (CCGs). London: IHAL, Royal College of General Practitioners and Royal College of Psychiatrists; 2012

Issues around premature or avoidable death were highlighted poignantly in Mencap’s Death by Indifference report,1 detailing the case histories of six people with learning disabilities who died in hospitals from avoidable conditions. In the report investigating these deaths, the Health Service Ombudsman for England2 highlighted distressing failures in the quality of health and social care and found that patients with learning disabilities were treated less favourably than others, resulting in prolonged suffering and inappropriate care. When relatives complained, they were left drained and demoralised, and with a feeling of hopelessness. One of the cases investigated was that of Martin Ryan, aged 43 years, who had severe learning disabilities and no speech. Martin died after he went without food for 26 days while in hospital following a stroke; by the time staff realised what was happening, his condition had deteriorated and his life could not be saved. The Ombudsman concluded that:

. . . had service failure not occurred it is likely the patient’s death could have been avoided.

HC 203 I-VIII, p. 142

The Ombudsman recommended that all NHS care organisations in England should:

. . . review urgently the effectiveness of the systems they have in place to enable them to understand and plan to meet the full range of needs of people with learning disabilities in their areas.

HC 203 I-VIII, p. 12. 2 We acknowledge The National Archives as custodian of this document

A 3-year confidential inquiry into premature deaths of people with learning disabilities (CIPOLD), investigating the deaths of 247 people with learning disabilities within five primary care trusts (PCTs) in England, reported its findings during the final month of this study. 3 It found that people with learning disabilities died, on average, 16 years sooner than people in the general population. Twenty-two per cent of people with learning disabilities in CIPOLD were < 50 years of age when they died, compared with 9% of the general population. Forty-two per cent of the deaths were considered to be premature. The most common reasons for this were delays or problems with diagnosis or treatment, and problems with identifying needs and providing appropriate care in response to changing needs. A similar proportion of deaths in a control group of 58 adults without learning disabilities were premature, but these were largely due to lifestyle factors such as smoking or alcohol, rather than poor-quality health care.

The independent inquiry into access to health care for people with learning disabilities (2008)

The evidence from Mencap’s Death by Indifference report1 and other inquiries led to an independent inquiry into access to health care for people with learning disabilities, set up by the Department of Health. Its report, Healthcare for All, was published in 2008. 4 The inquiry found that the cases highlighted in the Death by Indifference report1 were by no means isolated. There was:

. . . convincing evidence that people with learning disabilities have higher levels of unmet need and receive less effective treatment, despite the fact that the Disability Discrimination Act and Mental Capacity Act set out a clear legal framework for the delivery of equal treatment . . . witnesses described some appalling examples of discrimination, abuse and neglect across the range of health services.

p. 7. 4 Reproduced with permission from Michael J. Healthcare for All: Report of the Independent Inquiry into Access to Healthcare for People with Learning Disabilities. London: Aldridge Press; 2008

Several reasons for such evidence of unsafe and unlawful treatment were highlighted, including cross-organisational, organisational and individual influences. The report concluded that:

. . . the evidence . . . suggests very clearly that high levels of health care need are not currently being met and that there are risks inherent in the care system. People with learning disabilities appear to receive less effective care than they are entitled to receive. There is evidence of a significant level of avoidable suffering and a high likelihood that there are deaths occurring which could be avoided.

p. 53. 4 Reproduced with permission from Michael J. Healthcare for All: Report of the Independent Inquiry into Access to Healthcare for People with Learning Disabilities. London: Aldridge Press; 2008

The report sets out 10 clear recommendations for service planners, providers and practitioners to improve this unacceptable situation.

Healthcare for All recommendations

Four out of the 10 recommendations fall within the responsibility of acute care service providers and are the focus of this study:

All healthcare organisations including the Department of Health should ensure that they collect the data and information necessary to allow people with learning disabilities to be identified by the health service and their pathways of care tracked.

Recommendation 2, p. 114

All trust boards should demonstrate that they have effective systems in place to deliver effective, ‘reasonably adjusted’ health services for those people who happen to have a learning disability. This ‘adjustment’ should include arrangements to provide advocacy for all those who need it, and arrangements to secure effective representation on PALS [Patient Advice and Liaison Service] from all client groups including people with learning disabilities.

Recommendation 10, p. 114

Family and other carers should be involved as a matter of course as partners in the provision of treatment and care, unless good reason is given, and trust boards should ensure that reasonable adjustments are made to enable them to do this effectively. This will include the provision of information, but may also involve practical support and service co-ordination.

Recommendation 3, p. 114

Section 242 of the National Health Service Act 2006 requires NHS bodies to involve and consult patients and the public in the planning and development of services, and in decisions affecting the operation of services. All trust boards should ensure that the views and interests of patients with learning disabilities and their carers are included.

Recommendation 9, p. 11. 4 The above quotations are reproduced with permission from Michael J. Healthcare for All: Report of the Independent Inquiry into Access to Healthcare for People with Learning Disabilities. London: Aldridge Press; 2008

Starting points for this study

This study was undertaken in response to a call from the then National Institute for Health Research (NIHR) Service Delivery and Organisation (SDO) programme, now the NIHR Health Services and Delivery Research (HS&DR) programme to investigate the factors affecting patient safety in health-care organisations. The starting points for the study were the above four Healthcare for All4 recommendations, as well as three particular patient safety issues for people with learning disabilities: medication errors, preventable deterioration and misdiagnosis.

Section 1: Introduction

Chapter 1 provides the background and rationale for the study, the national context, a definition of ‘learning disability’ and an overview of the structure of the report.

Chapter 2 sets out the study aims and theoretical framework.

Chapter 3 provides a description of the study methods, the participants and the research team. It also sets out the major challenges encountered in carrying out the research.

Section 2: Literature review

Chapter 4 provides an updated literature review, conducted during the course of the study, with a focus on the specific lines of inquiry in the study and in the light of national developments during the study period. This gives an important context for the study results.

Section 3: Results

Chapters 5–8 report on the findings in relation to the four recommendations of Healthcare for All,4 as follows:

• Chapter 5 explores ways of identifying patients with learning disabilities in NHS hospitals and tracking their pathways of care.

• Chapter 6 looks at providing reasonably adjusted hospital services.

• Chapter 7 discusses the involvement of carers as partners in care.

• Chapter 8 examines how patients and carers may be involved in service planning and development.

Chapters 5–8 each include an empirical subframework of the cross-organisational, organisational and individual factors that affect the safety of patients with learning disabilities in NHS hospitals.

Chapter 9 reports on the findings in relation to the learning disability liaison nurse (LDLN) role in NHS hospitals.

Chapter 10 reports on the findings in relation to specific patient safety issues faced by patients with learning disabilities.

Chapter 11 reports on the results of stage III of the study, which focused on the extent to which the study findings are generalisable to other vulnerable patient groups. This includes a brief review of the literature.

Section 4: Conclusions

Chapter 12 summarises the main findings and explores some of the main themes. It integrates the results and empirical subframeworks, resulting in an empirical framework of factors that promote or hinder a safer environment for patients with learning disabilities in NHS hospitals.

Chapter 13 discusses the implications of the study results for health-care services.

Chapter 14 provides recommendations for further research.

Knowledge gaps

As has been described (see Chapter 1), there have been a range of initiatives and examples of good practice with regards to implementing the changes recommended in Healthcare for All4 in order to promote the safety of patients with learning disabilities in NHS hospitals. However, it has been reported that such good practice examples are patchy. The extent to which these initiatives are effective in promoting safer care, and the factors that promote effective long-term change, are poorly understood. In particular, it is not clear:

• which particular organisational and management structures contribute to the safer care of patients with learning disabilities

• how effective ‘change agents’ (such as LDLNs) are in promoting safer care for people with learning disabilities in NHS hospitals

• how patients with learning disabilities and their relatives can be effectively engaged in improving safety in hospitals

• which contributions to patient safety can be effected within individual NHS acute hospitals, and which require a wider approach (for example through regulatory bodies).

Implementing the recommendations requires changes in both the organisation of systems and services, and staff practice. The examination of these issues at organisational, group and individual level is essential in order to understand how change may be facilitated with regard to learning disability practice. Without a clear understanding of these issues, improved safety for patients with learning disabilities in hospitals is likely to remain haphazard.

The purpose of this study was not to perform an audit of NHS acute trusts in relation to their performance against targets or the implementation of policies and systems to improve safe care of patients with learning disabilities. Rather, its purpose was to understand the processes of implementation and the factors that influence the effectiveness of the measures.

Healthcare for All4 concludes:

The evidence shows a significant gap between policy, the law and the delivery of effective health services for people with learning disabilities.

p. 53. Reproduced with permission from Michael J. Healthcare for All: Report of the Independent Inquiry into Access to Healthcare for People with Learning Disabilities. London: Aldridge Press; 2008

There is a lack of knowledge about how to translate hospital policy and guidelines into effective practice and improved services. This study was set up to address that knowledge gap. It aimed to understand the extent to which evidence of good practice in promoting safety for patients with learning disabilities is driven by (a) policy and its communication downwards through the health service organisation and/or (b) bottom-up initiatives originating from new patient/practitioner partnerships, innovative teams and charismatic leaders.

Defining cross-organisational, organisational and individual influences

In the context of this study, cross-organisational influences are those that affect the care of patients with learning disabilities across multiple NHS acute hospitals. This may include influences from primary care, secondary care and social care settings. They are imposed by the external policy context, by the structure and delivery of the NHS as a national organisation or by the interface between different health-care organisations and structures. They encompass decisions made at a regional or national level. Cross-organisational influences on patient safety issues cannot be addressed by NHS acute hospital trusts in isolation.

Organisational influences comprise the policies and systems adopted by individual NHS acute trusts which ultimately affect the resources available and local working conditions. It is at the level of organisational influences that NHS acute hospital trusts have a unique power to address patient safety issues within their organisations.

Individual influences are related to the way in which individual staff and staff teams can affect the care and safety of patients with learning disabilities. They are reflected, for example, in ward culture and staff attitudes. Individual influences also comprise factors inherent in the population profile of patients with learning disabilities and their carers, over which NHS hospitals will have little control.

Aims

The primary aim was to describe the cross-organisational, organisational and individual factors in NHS hospitals that promote or compromise a safe environment for patients who have learning disabilities.

The secondary aim was to develop guidance for NHS acute trusts about the implementation of successful and effective measures for promoting a safer patient environment.

Research questions

1. What systems and structural changes have been put in place in NHS acute hospitals to prevent adverse outcomes for patients with learning disabilities, in particular with regards to specific safety issues (medication errors, misdiagnosis and preventable deterioration), and to recommendations 2, 3, 9 and 10 of Healthcare for All?

2. How successful have these measures been in promoting safe practice? In particular:

   1. What cross-organisational, organisational and individual factors have been barriers and enablers in implementing the Healthcare for All recommendations for patients with learning disabilities in a sample of six NHS hospitals?

   2. What are the examples of effective, replicable good practice at these six sites?

3. To what extent can the findings and learning from question (2) be generalised to other vulnerable patient groups?

With regards to the third question, the study aimed to identify which factors affecting patient safety are likely to be unique to the presence of learning disability, and which are due to general vulnerability and communication problems. This will enable the identification of findings that are transferable to other vulnerable patient groups.

Selection of hospital sites

A purposive sample of six hospital sites was selected for the study. (The original research proposal and initial recruitment involved five study sites. Soon after the start of the study, site D was withdrawn and site F recruited. Site D was later re-included in the study, making a total of six sites.) A brief profile is shown in Table 2. Selection was made according to the following three criteria, which were likely to impact on the implementation of the strategies under investigation:

• A range of urban/rural and sociodemographic environments were represented, and a range of hospital sizes (the number of staff per hospital was between 3000 and 6000; number of beds was between 450 and 900).

• Hospitals selected had shown active engagement with issues around safety for patients with learning disabilities, based on the hospital’s record since 2008 in prioritising the safety of patients with learning disabilities. The selected study sites had a range of recent or more long-standing implementation plans for the recommendations in Healthcare for All. 4

• Contrasting examples were sought of the use of a LDLN service. Three hospitals employed a LDLN; two hospitals worked closely with LDLNs based in primary care who had an explicit remit to provide a LDLN service at that hospital; and one hospital did not have a LDLN service. As terminologies and job titles for this role varied across study sites, for the sake of uniformity and anonymity the term LDLN is used throughout this report, and the gender of the LDLN has been assigned female in all quotes and descriptions.

Participants

A wide range of staff, patients and carers participated formally in the study through surveys, telephone and face-to-face interviews, participant observation and expert panel discussions (n = 1249 after exclusions). An overview of these participants is given in Table 3, and full details are given in Appendix 3. Sampling methods for each participant group are described under the relevant sections below (see Data collection). In addition, the researchers kept field notes of conversations and observations at the hospital sites, adding further informal participants.

During the course of the study the researchers also spoke to staff, patients and carers involved in hospital trusts throughout England that were not part of the study. Whilst these are not specifically reported here, the insights gained from such ‘shadow hospital trusts’ informed the final analysis.

Stage I

Stage I took place from August to September 2011. The aim of this stage was to map the systems and structural changes that had been put into place at the six hospital sites, with regards to research question 1. A questionnaire was developed and sent by e-mail to the collaborators at each site, who either filled it in themselves or nominated someone else within the trust who was well placed to answer the questions (n = 11). This was followed up by a telephone interview to clarify and complete the answers with some informants (n = 6).

Documents relating to all relevant policies, procedures and systems were examined. This included any systems for flagging or identifying patients with learning disabilities; any patient-held information documents currently being used at the trust; relevant carer policies; systems or arrangements in place to provide reasonable adjustments (specifically, whether trusts provided accessible information and met individual communication needs); and any specific arrangements in place to allow family and carers to make a complaint. Documents relating to particular patient safety issues including medication errors, preventable deterioration and misdiagnosis were also examined.

Stage II

Stage II was related to research question 2 and took place from October 2011 to September 2012. This stage formed the main part of the study and was concerned with examining the effectiveness of the measures identified in stage I. The wide range of methods, sampling strategies and data collection tools are set out below.

Stage III

Stage III was related to research question 3, and took place from November to December 2012. It was hypothesised that the factors associated with success and failures in dealing with patients with learning disabilities are likely to be similar for any vulnerable group with ‘non-standard needs’. A small number of questions on the differences and similarities in dealing with other vulnerable patient groups were part of the interview schedules in stage II.

At the end of stage II, the emerging findings were summarised in a discussion document alongside an emerging empirical framework.

Stage III consisted of synthesis of the emerging study findings with existing literature, which was searched for congruence with these findings in relation to other specific vulnerable patient groups, in particular patients with dementia and patients with mental health problems.

Qualitative analysis

All qualitative data (including face-to-face interviews, telephone interviews, ethnographic data from tracer patients and data from open-ended questionnaire questions) were collated and analysed together in order to aid data synthesis. All qualitative data were entered into NVivo 9 (QSR International, Southport, UK), a computer software programme for managing qualitative analysis. 32 The initial common analytical coding framework was based on the research framework (see Table 1). Data analysis took place throughout the data collection period and involved coding subsamples of the data and weekly discussions with the core research team about emerging findings and possible new analytical codes. Members of the wider research team (research advisors) joined these discussions approximately once a month. Data sets that did not fit into the framework, or were difficult to synthesise, were used to generate new themes and refine the coding framework throughout the data collection period. Themes emerging from all three levels of inquiry (organisational, staff, and people with learning disabilities/carers) were compared and accommodated within the framework, ensuring that any commonalities or differences (for example, between different stakeholder groups, wards or hospital sites) were highlighted in the analysis. Meetings were held with specific stakeholder representatives on the research advisory board to discuss emerging findings in relation to relevant topics. This included meetings with Vanessa Gordon (Associate Director of Patient Safety, NHS Commissioning Board), the family carers on the research advisory board (for the purpose of involving carers) and the coresearchers and advisors with learning disabilities. The emerging findings were also discussed with experts outside the research team and research advisory board, including Sir Jonathan Michael (chairperson of the independent inquiry and author of Healthcare for All4). A final analytical framework was agreed by the research team in the final month of stage II.

Quantitative analysis

The quantitative data in this study consisted of semi-structured questionnaires with carers and with clinical staff. Data were analysed using Statistical Product and Service Solutions (SPSS) Statistics 19 (SPSS, Inc., Chicago, IL, USA). Descriptive statistics have been used as follows: continuous data have been described with mean, standard deviation, minimum and maximum values, and categorical data with frequencies and percentages. The online staff questionnaire survey had some missing data as a result of people dropping out of the survey prior to completion. Where these data are presented, only the sample of people known not to have dropped out up to that specific question is included as the denominator in calculating the descriptive statistics.

Data synthesis

The number of qualitative and quantitative data generated by the study was extremely large. During the stage of data synthesis, the research team looked for congruence and incongruence between qualitative and quantitative findings. In particular, the team looked for instances of incongruence between policy and practice. Special attention was paid to specific examples of both good and poor practice in relation to the safety of patients with learning disabilities, and the identification of the specific cross-organisational, organisational and individual factors that had a bearing on these examples. This resulted in a final empirical framework of factors that affect the promotion of a safer environment for patients with learning disabilities.

It must be noted that in this report many examples of good and poor practice are highlighted. This does not reflect the quantitative incidence of such examples (which this study did not aim to elicit), but rather, it reflects the study focus of aiming to understand how and why good or poor practice occurs.

Ethical approvals

The study was approved by the National Research Ethics Services (NRES). Three substantial amendments were submitted to NRES during the course of the study, to include the sixth study site and to reflect altered sampling strategies. All were approved (Research Ethics Committee reference 11/LO/0428). Local research approval was obtained at each participating trust.

Ethical issues

Equality legislation and reasonable adjustments

It is a legal requirement for public services to ensure that their services are accessible to people with disabilities. The Disability Discrimination Act44 came into force in 1995 and sets out the legal duties of service providers to make adjustments. Subsequent Acts have reinforced this legal requirement. 45,46

Where a provider of services has a practice, policy or procedure which makes it impossible or unreasonably difficult for disabled persons to make use of a service which he provides, or is prepared to provide, to other members of the public, it is his duty to take such steps as it is reasonable, in all the circumstances of the case, for him to have to take in order for him to change that practice, policy or procedures so that it no longer has that effect.

Part III, section 2144

Having due regard for equality means removing or minimising disadvantages suffered by people because of their protected characteristics, and taking steps to meet the needs of people from protected groups where these are different from the needs of other people. 47 There are three requirements that apply in situations where a disabled person would otherwise be placed at a substantial disadvantage compared with people who are not disabled:48

• Changing the way things are done, where the disabled person is put at a substantial disadvantage by a provision, criterion or practice of the service provider (including written or unwritten rules). Reasonable adjustments could include changing or adapting the rules, or providing staff training. Barriers can include poor staff attitudes or a lack of knowledge and skills.

• Altering physical obstacles or designs that put disabled people using a service at substantial disadvantage. The organisation must take reasonable steps to remove the feature, alter it, provide a reasonable means of avoiding it, or provide a reasonable alternative method of making the service available to disabled people. Physical features include steps and stairways, but also floor coverings, furniture, signs and toilet/washing facilities.

• Providing extra aids and services like providing extra equipment or additional service (in law, these are called auxiliary aids). Examples include provision of accessible information, access to an interpreter, or offering a home visit when clients would usually come to the service premises.

Whether an adjustment is ‘reasonable’ depends on a range of factors, including whether it can actually be done, the cost, and the organisation’s resources and size. The guidance documents from the Equality and Human Rights Commission point out that ‘just because something is difficult does not mean it cannot also be reasonable’ (The copyright and all other intellectual property rights in the material to be reproduced are owned by, or licensed to, the Commission for Equality and Human Rights, known as the Equality and Human Rights Commission (‘the EHRC’). Reproduced with permission from Equality and Human Rights Commission. Your Rights to Equality from Health and Social Care Services. Equality Act 2010 Guidance of Your Rights, Volume 5 of 9. Manchester: Equality and Human Rights Commission; 2010, p.44.). 48 If an adjustment is costly, the organisation’s resources must be looked at across the whole organisation, not just the branch, section or ward that provides the particular service.

The legal requirement is for services to put reasonable adjustments in place even if they do not have any disabled clients at the time. In other words, organisations should not wait until disabled people try to use their service; rather, they should be proactive and anticipate the need for adjustments.

Reasonable adjustments for people with learning disabilities in NHS hospitals

Healthcare for All4 noted that, despite examples of good practice across the country, the lack of knowledge and information means that timely, appropriate and reasonable adjustments as defined by the disability legislation are not easy to make, even when services are keen to adapt their approach for people with learning disabilities.

Mencap’s Getting it Right charter (2010)49 listed nine pledges, all of which amount to reasonable adjustments, and several of which echo the Healthcare for All4 recommendations:

1. make sure hospital passports are available and being used

2. make sure that all staff understand and apply the principles of mental capacity laws

3. appoint a learning disability liaison nurse in hospital(s)

4. make sure every person with a learning disability can have an annual health check

5. provide ongoing learning disability awareness training for all staff

6. listen to, respect and involve family carers

7. provide practical support and information to families and carers

8. provide information that is accessible to people with a learning disability

9. display the Getting it right principles for everyone to see.

Reproduced with permission from Mencap. Getting it Right When Treating People with a Learning Disability. London: Mencap; 2010

Several of the study sites were among the first health-care trusts that signed up to this charter.

Following the Health Service Ombudsman report in 2009,2 the Department of Health published a progress report. 50 Having gathered evidence from a wide range of sources, the report stated that there were many good practice examples, but this was often dependent on individual staff and teams rather than embedded within organisational structures. Reasonable adjustments were less commonly mentioned in relation to acute care (compared with primary care). One frequently sighted adjustment was the provision of easy read information. The conclusion was that reasonable adjustments can hugely improve patients’ experiences and outcomes, and failure to make adjustments can have far-reaching negative consequences for patients; but there is a need for further work to ensure that reasonable adjustments are made within health-care settings.

The Chief Executive of the NHS, Sir David Nicholson, wrote to all Chief Executives of NHS trusts and NHS foundation trusts in England in 2008 and in 2010 (twice), reminding them of their legal obligation to make reasonable adjustments for people with learning disabilities, and to ensure that their staff are following the law in this respect. 51

A practical guide commissioned by the Department of Health presents a range of examples of NHS trusts that have made reasonable adjustments. 52 IHAL, set up by the Department of Health, has gathered data on the types and extent of reasonable adjustments made by NHS trusts. In its report,53 it summarises Giraud-Saunders’s comprehensive guidance,52 which:

. . .  gives a very good sense of the wide range of systemic changes that are required for an NHS service to run a truly effective service for people with learning disabilities, including:

1. Information for people with learning disabilities

2. Working in partnership with families

3. Capacity, consent and advocacy

4. Service delivery (including making an appointment, initial attendance, receiving a service, discharge and follow-up)

5. Gathering, monitoring and reporting information about access and effectiveness of the health service by people with learning disabilities

6. Patient and public involvement

7. Employment of people with learning disabilities.

p. 12. 53 Reproduced with permission from Hatton C, Roberts H, Baines S. Reasonable Adjustments for People with Learning Disabilities in England: A National Survey of NHS Trusts. IHAL report 2011-03. London: IHAL; 2011

Improving Health and Lives reported findings collected from 119 trusts who responded to its survey, including 61 acute trusts (36% of all acute NHS trusts in England). The most commonly reported reasonable adjustment was the provision of accessible information, although the authors comment that it was not clear whether this information was specifically designed or comprehensible for people with learning disabilities, nor whether it was routinely available. Similarly, accessible information for carers was reported, but robust evidence for this was lacking. Other areas of reported reasonable adjustments included policies concerning mental capacity, staff training, having trust patients with learning disabilities who make use of an Independent Mental Capacity Advocate (IMCA), using patient-held information documents and health action plans. The authors found that:

. . .  the most common solution for trusts concerning face-to-face contact with patients with learning disabilities and carers was to rely on staff with specialist learning disability training, skills or roles to act as liaison between the person with learning disabilities, the carer, the various parts of the trust and other learning disabilities services involved in the support of the individual.

p. 8. 53 Reproduced with permission from Hatton C, Roberts H, Baines S. Reasonable Adjustments for People with Learning Disabilities in England: A National Survey of NHS Trusts. IHAL report 2011-03. London: IHAL; 2011

Improving Health and Lives has now set up a public online database where NHS trusts can upload and share their good practice examples of making reasonable adjustments for people with learning disabilities. 54

Definition of ‘carer’

Carers Trust55 defines a carer as:

. . . someone of any age who provides unpaid support to family or friends who could not manage without this help. This could be caring for a relative, partner or friend who is ill, frail, disabled or has mental health or substance misuse problems.

Reproduced with permission from Carers Trust. What is a carer? 2012. URL: www.carers.org/what-carer

Family carers of people with learning disabilities are unique among carers. Many have decades of caring experience and of negotiating the health, education and social care systems through infancy, childhood and adulthood. 55

Many people with learning disabilities rely on the support of paid care staff in their daily lives, including support staff working in the residential care, independent living arrangements and sheltered accommodation settings. Such care staff often provide support for people with learning disabilities when they attend hospital as inpatients or outpatients. Their expertise and knowledge of the person with learning disabilities may vary; whereas many may be highly experienced and trained, others are not. Paid carers range from experienced home managers who have known the person for many years to unskilled workers who do not know much about the person they support.

The Healthcare for All4 recommendation applies to these paid carers as well as unpaid family carers. For the purpose of this study and this report, a ‘carer’ is defined as any care giver who provides paid or unpaid support to someone with learning disabilities during their hospital episode, including both family carers and paid carers. There are overlaps but also distinctive differences in carer-related issues with regards to these two groups of carers, and where relevant, this report will differentiate ‘family carers’ (who provide unpaid help and support and have a relationship with the person with learning disabilities built on interaction and shared experiences) and ‘paid carers’ who are, by definition, paid to provide formal care. 56

Evidence on carer involvement from Healthcare for All

The independent inquiry gathered evidence from 79 family carers. The largest categories for comments were the importance of listening to carers (mentioned by 58% of carers), the need for staff education and training (55%) and the problem of communication (52%). In particular, they reported on the following issues:

• poor staff attitudes, including ignorance, fear and unwarranted assumptions about the patient’s quality of life

• difficulties in communicating effectively with carers

• inconsistencies in the quality of information sharing with regards to the health and needs of the patient

• carers’ needs not being taken into account

• difficulties in accessing health services

• difficulties in negotiating transition (for example, between child and adult services).

The roles and experiences of carers in hospitals

There are a number of studies focused on the roles and experiences of, and the problems faced by, carers of adults with learning disabilities while they are in hospital.

Carers report support roles that include providing direct support with personal care and mealtime assistance; providing communication support; providing emotional support and reassurance; providing information about the patient to hospital staff; and advocating for the patient’s needs. 56,57

Problems reported by carers of people with learning disabilities in hospital include ill-defined role boundaries, whereby hospital staff and carers (especially paid carers) are uncertain about what carers can and will do; not being supported to take a break from caring; and lack of recognition for carers’ expertise and advocacy role. 56,58 Several studies found that the family’s expert knowledge was rarely solicited by hospital staff,59 and that this had led to compromised safety or increased suffering and pain. 60

Other authors reported that carers felt they needed to be constantly present and vigilant, fearing that in their absence the patient’s needs, including basic care needs such as eating, drinking and toileting, would not be met and the patient could be harmed; this fear was often based on past experience. 57,59,61,62

Allen63 used ethnographic data from a study in a UK hospital to describe the different degrees to which family carers were involved with patient care. Her study was not focused on carers of people with learning disabilities, but the descriptions have relevance. Family members could act as ‘visitors’, ‘workers’ (undertaking care-giving tasks and being of help to the ward staff) or ‘expert carers’. Allen found that relatives and friends who adopted a worker role remained subordinate members of the nursing team. On the other hand, expert carers focused more on the needs of the patient, rather than the nurses. Allen noted that this presented a challenge to the ward nurses’ ability to control their work and their claims to expertise. As such, expert carers’ actions:

. . . could lead them to disrupt fundamental features of the social organisation of ward work . . . Thus, whilst other family members could be integrated into the ward caring division of labour with relative ease, the integration of expert carers was infinitely more problematic.

p.15563

Allen also noted that carers were reluctant to make a complaint about perceived poor standards of care, fearing a negative effect on their relationships with hospital staff.

Researching patient safety

Patient safety is concerned with any issue (separate to the natural progression of the patient’s illness or injury) experienced during a patient’s health care which could or did cause harm. 74 Examples include acquisition of a hospital-acquired infection, receiving the wrong medication or the wrong dose, or falling while under the care of the service provider. Studies conducted within health-care services in the developed world demonstrate that approximately 1 in 10 patients encounter harm as a result of the health care they receive. 75,76 It is estimated that around 50% of patient safety issues are preventable. 75 While this figure is well known and often quoted within the patient safety arena, it remains alarming and captivates audiences because of the widespread and often unfailing perception that ‘hospitals make people better’. However, all patients are at risk of being unintentionally and avoidably harmed during the process of their health care due to the impossibility of eradicating human error. 77

Reason78 highlights two approaches to understanding and ameliorating human error. The ‘person approach’ essentially blames the ‘aberrant mental processes’ of health-care professionals working at the ‘sharp end’ when an error is made (p. 768). 78 For example, if the wrong drug was administered to a patient, the health-care professional who gave the drug would be blamed and it would be assumed that their cognition was at fault. Conversely, the ‘system approach’ recognises that mental processes are flawed and seeks to adapt the error-producing conditions that are ever-present within the environment (known as latent conditions) rather than changing the individuals within the system. For example, if the wrong drug was administered to a patient, it would be important to look at all of the factors in the environment that may have contributed to this, such as the labelling on the medication, the physical location in which the medication was stored, the clarity of the method used to prescribe the medication, the level of training and working pattern of the health-care professional who administered the medication, etc. Changing the ‘systems’ that surround an error reduces the likelihood that another health-care professional will make the same error in the future. This approach acknowledges that there are often a number of different ‘contributory factors’, spanning cross-organisational, organisational and individual levels, which lead to adverse outcomes. Thus, there is a consensus within the patient safety arena that systems and underlying contributory factors can be studied and changed to make patient care safer.

Patient safety issues for people with learning disabilities

Although we do not know the incidence of adverse events experienced by patients with learning disabilities in NHS acute hospitals, a small number of reports have outlined the types of patient safety issues faced and have begun to describe contributory factors which underlie these issues. In 2004 the National Patient Safety Agency (NPSA) studied ‘patient safety priorities’ for people with learning disabilities. They concluded that ‘people with learning disabilities may be more at risk of things going wrong than the general population, leading to varying degrees of harm being caused whilst in general hospitals’ (p. 11, reproduced with permission from National Patient Safety Agency. Understanding the Patient Safety Issues for People with Learning Disabilities. London: National Patient Safety Agency; 2004). 79

Specific patient safety issues have been described surrounding: misdiagnosis or diagnostic overshadowing;1,3,4,34,79,80 inadequate treatment of pain;3,34,79 delayed diagnosis or treatment;3,6,34,80 inappropriate ‘do not attempt resuscitation’ (DNAR) orders;3,34 medication errors or omissions;3,81 over-reliance on psychotropic drugs to manage behaviour that is perceived to be challenging;6,80 inappropriate use of control and restraint;79,80 recognition of swallowing difficulties;82 lack of nutrition;1 pressure ulcers;18,83 and inconsistent personal care. 34,80

Within this literature, factors cited as contributing to safety issues comprise barriers to accessing NHS services and lack of reasonable adjustments to facilitate access;3,80 miscommunication of pain or symptoms;1,3,34 patients’ lack of understanding of their medical condition and medical interventions;79,80 patient non-compliance with treatment;3 a shortage of accessible information;79 inappropriate procedures for gaining patient consent, a lack of staff understanding of the Mental Capacity Act and flawed best interests decisions;1,3,34 reliance on carers to provide nursing care;34,79 poor communication between carers and hospital staff;1,34 poor record-keeping of patient observations (e.g. food and fluid intake) and patient preferences;3 failure to follow clear care pathways;3 lack of continuity of care within hospital and lack of after-care post discharge;3 a deficiency of hospital staff knowledge and skills to enable recognition of the specific needs of patients with learning disabilities;1,34,79 a lack of value placed on the lives of people with learning disabilities;1,34 insufficient advocacy;3 and an inaccessible complaints procedure within the NHS which compromises learning from previous adverse events. 1

At the outset of the research, an initial scoping review had suggested that preventable deterioration and, in particular, medication errors and misdiagnosis (due to problems with communication and comprehension), were particularly pertinent issues faced by patients with learning disabilities. 25,81 These safety issues were therefore incorporated within the initial theoretical framework and formed specific lines of enquiry during data collection. Additional patient safety issues and underlying contributory factors emerged during the course of the research and were subsequently integrated into the strategy for ongoing data collection and analysis.

Incident reporting

The information in this section was provided by Vanessa Gordon (Associate Director of Patient Safety for Learning Disabilities, NHS Commissioning Board, 2012, personal communication) and Noreen Gul [Analyst, National Reporting and Learning System (NRLS), 2012, personal communication].

The NRLS was established in late 2003 as a voluntary scheme for the reporting of patient safety incidents and focuses primarily on learning from these incidents in the NHS. The NRLS, therefore, does not provide the definitive number of patient safety incidents occurring in the NHS. In April 2010, it became mandatory for NHS organisations to report all patient safety incidents which result in severe harm or death to the NRLS. Over 99% of incidents in the NRLS are taken from local risk management systems.

The national picture of patient safety incidents in England and Wales is published quarterly by the NRLS. For the period April 2011 to March 2012, 1,250,206 patient safety incidents were reported as occurring in England, with 24,686 incidents (2%) reported in the care setting ‘learning disability’. The most common incident type reported from learning disability care settings was disruptive/aggressive behaviour (28%) followed by ‘patient accident’ (26%). 84

Identification of people with learning disabilities in acute care by means of incident reporting is particularly problematic as fields relating to any patient disability are poorly populated, and information contained within the free text description of an incident may not mention a patient’s disability or may be ambiguous. Phrases within an incident description, such as ‘a patient with complex needs’ or ‘a vulnerable patient’, can also mask a person with learning disabilities.

The reporting of incident types versus outcomes may be confusing to reporters and may result in the patient’s behaviour being recorded rather than a more appropriate incident type. The general taxonomies of reporting systems may also hinder appropriate reporting of patient safety incidents for specific types of patients, including those with learning disabilities. To reduce the burden on the NHS, the NRLS uses information from the individual organisation’s risk management system. If information regarding patient safety incidents and people with learning disabilities is not reported locally, it will not be collected nationally by the NRLS. Currently, the issue of identification of people with learning disabilities within reporting systems is a major barrier to analysis and to an understanding of patient safety for this group.

Policies, procedures and systems

How effectively could study sites identify, flag and track patients with learning disabilities?

The collaborators were asked to provide the research team with the following data: numbers of patients with learning disabilities using the health-care service during the 12 months of stage II; which wards the patients were admitted to; lengths of stay; and numbers of readmissions within 7 days of discharge.

None of the hospital sites could provide the research team with comprehensive information. Three trusts could not provide any usable data. Two of these provided numbers obtained from clinical coding, which does not constitute identification of the patient during their hospital contact and is unreliable because of the high risk of miscoding. 43

Electronic systems, where used, were far from comprehensive or reliable, and there was evidence of patients with known learning disabilities not being identified in this way. At one trust, an intensive audit of inpatients with learning disabilities (which involved checking electronic flags as well as daily ward rounds to try and ‘find’ patients with learning disabilities) revealed only three such patients in three weeks.

We have a flagging system for identifying people with a learning disability . . . that can only be put on when a patient comes in. We recently did an audit and found that . . . we couldn’t find anyone within the trust with a flag on their computer records when there WERE people with learning disabilities.

P61, matron

The most comprehensive records came from the hospital-based LDLNs, who could give concrete numbers of patients with learning disabilities referred to their service and demonstrated that they were able to both flag and track patients with learning disabilities through their own recording systems. However, all LDLNs observed that their systems were limited by a reliance on hospital staff to refer patients to them, and by the fact that most patients with learning disabilities come into hospital without a notification of their learning disabilities. They particularly noted their inadequacy in identifying or flagging outpatients.

Lack of effective systems

The lack of effective systems for identifying people with learning disabilities stretches across and beyond organisations. The most significant barrier is the fact that the vast majority of people with learning disabilities (79%) have never been identified as such within any health or social care service system, and will therefore remain invisible within the hospital unless a system is implemented for screening and identifying this patient population. 43 Such screening systems are currently lacking, although LDLNs reported that they do occasionally get asked to assess patients with suspected learning disability. However, most unidentified patients will have mild to moderate learning disabilities, which are less likely to be suspected by staff.

Hospitals were further limited by a cross-organisational lack of integrated patient records. Over half of the respondents to the staff questionnaire (51.7%, 417 out of 815) said that they find out that a patient has learning disabilities from a medical referral letter; this rises to 78.4% (109 out of 139) for medical staff. Yet interview data and free-text questionnaire data showed that relevant information about learning disabilities is often not passed on by GPs. As a result, the hospital was not always aware of known learning disability, even for planned admissions or outpatient appointments.

Frequently when booking appointments, we are not informed that patients have learning disabilities and doctors will request [magnetic resonance imaging] scans which when the patient arrives to have, it is immediately clearly completely inadequate for such a patient to be able to cope with the scan requested and therefore has to be abandoned . . . Were it to be made known to the imaging staff that the patient had learning disabilities, allowances could have been made before the time of the appointment to cater for them.

P300, radiographer

Within some organisations, there was a lack of adequate electronic flagging systems, although those organisations were in the process of implementing such systems. Senior hospital managers noted the difficulties of correctly identifying the presence of learning disability. This raised questions about who could or should put the flags on. It was also frequently observed by managers at all trusts that the presence of a flag for learning disability is no guarantee that staff know what the implications of this are, causing them to doubt the benefit of such flags.

The lack of effective flagging systems made it difficult for LDLNs to ensure patients with learning disabilities received adequate support.

The only database is the one I keep and that’s relying on hospital staff informing me that the patient comes in. So I can’t go into a computer today and see how many learning disability patients are on these premises. I was at outpatients this morning and that’s only because the patient phoned me and told me they were coming and that they would like me to attend their clinic with them that I was there. Otherwise I wouldn’t know where any of my patients are.

P1272, LDLN

The lack of integrated flagging systems was not entirely cross-organisational. In one trust, patients with learning disabilities were flagged in A&E but this flag did not follow them through the hospital.

Lack of staff knowledge

As most patients with learning disabilities have never been identified as such,8 and many people with known learning disabilities who enter the health-care system are not flagged, whether or not they are identified as vulnerable patients in need of reasonable adjustments will depend on the ability of hospital staff to identify the presence of learning disabilities. There is strong evidence in this study that hospital staff lack the knowledge and skill to do so.

During the staff interviews, some staff demonstrated good understanding of what learning disabilities were, but this was not universal. Some staff gave examples of patients with dementia or dyslexia when asked about patients with learning disabilities. Even some senior nurses and consultants were not clear about what groups of patients fall within the definition. Most doctors and nurses admitted that they would find it extremely difficult to know whether or not a patient had mild learning disabilities, and they were therefore reluctant to consider undertaking the task of identifying learning disability.

Whereas with dementia [my colleagues] and I are very used to going along and making a new diagnosis, we would be feeling very, very uncomfortable on how to make a diagnosis of learning disability in someone who just passes through our system for the three weeks in their entire life.

P1249, consultant physician

I wouldn’t feel confident in actually saying that person has, and that person hasn’t.

P52, ward manager

Staff reluctance

Although senior managers understood the need for flagging in principle, there was a strong feeling of reluctance to flag patients with learning disabilities which pervaded all levels within the organisation, from the most senior hospital managers to junior ward staff. There were three main reasons for this, as follows.

Barriers to tracking patient care pathways

Although LDLNs in particular were good at tracking the hospital care pathways of patients with learning disabilities, there was a lack of organisational systems to ensure that all known patients with learning disabilities had their pathways tracked and their care co-ordinated. There was no effective cover for LDLN absence, for example (see also Chapter 9). In the absence of effective flagging systems and a general lack of staff understanding that flagging or tracking pathways might be important, it seemed that senior nurses who had been allocated responsibility for overseeing the care of patients with learning disabilities (such as matrons) were much less likely to be reliably informed about the presence of such patients within the hospital and to be able to track their hospital pathways.

Carers

Carers showed overwhelming support for the principle that patients with learning disabilities should be identified and flagged by the hospital. They recognised the need for adjusted health-care services and felt strongly that recording and noting information about learning disability was an important first step.

I think it should be on a computer system. Or maybe a note on her notes. I understand that some people might not want to be labelled in that way, but if there is some sort of note on the system, that could lead staff to having a quiet word with the family to find out more. I don’t think anyone would mind that.

P89, family carer

Patients

All study participants with learning disabilities who expressed their opinion on this issue were supportive of flagging the presence of learning disability within the hospital. It must be noted, however, that all people with learning disabilities interviewed for this study were self-selected. They had taken an active step to contact the research team or attend an open day. They therefore clearly identified themselves as having learning disabilities, and were probably less likely to oppose the notion of having their learning disability identified and flagged.

I think staff should be made aware of it so that they know and then they know how to deal with it.

P114, person with learning disabilities

Hospital structures, systems and policies

Funding and resource allocation

Many reasonable adjustments require resources and therefore cost an organisation in terms of time and money. The amount of resource allocated to enable reasonable adjustments to be made depends upon a complex function of a number of factors. This may include the demographic make-up of the patient population to be served, the characteristics and expertise of staff working within the trust, the financial position of the trust, and the allocation of resources by the hospital’s management.

At present, NHS acute trusts do not receive additional funds for providing services to patients who have learning disabilities under the national PbR system.

There’s no additional funding. We’re putting in additional resources to make the reasonable adjustments but actually we’re not seeing any support in financial terms for that.

P1274, matron

In cases where relatively expensive reasonable adjustments are required, such as provision of a one-to-one nurse or care assistant, or indeed creation of a LDLN service, hospitals were required to allocate funds from within their existing budget. Over a quarter of respondents to the staff questionnaire (28%, 258 out of 914) agreed or strongly agreed with the statement ‘We do not really have the time or resources to cope with patients with learning disabilities properly’. However, when interviewed, some ward sisters did not question the need for extra resources and were willing to allocate the necessary resources if required.

We are never told we can’t get the resource because the money isn’t available . . . We absorb it within the costs, of the good budget management of a ward.

P1282, ward sister

In times of austerity, though, it is easy to surmise that scarcity of resources may impact negatively upon the ability of NHS acute trusts to provide reasonably adjusted services. Senior managers at one study site, which did not have a LDLN service, recognised the benefits of such a service but, as they had only been able to identify a very small number of patients with learning disabilities using the hospital, found it difficult to justify spending scarce financial resources on a LDLN.

Management support

Staff understanding and attitudes

Under- and postgraduate training

The provision of staff training around learning disability is an important reasonable adjustment; the need for this was highlighted in Healthcare for All. 4 It is clear from the examples, and it has been highlighted by the Equality and Human Rights Commission,48 that poor staff attitudes or a lack of knowledge and skills are a barrier to implementing reasonable adjustments, particularly if they involve a change to organisational systems and structures. This includes training on capacity issues.

All LDLNs in this study said that providing staff training was part of their remit, although some questioned how realistic it was to provide training for a very large number of staff across the hospital trust.

The staff questionnaire included questions on the training or guidance staff had received to help them care for patients with learning disabilities. Figure 7 summarises the results. It shows that significant numbers of staff had never received any such training, including over a third of all medical and dental staff and over half of all HCAs.

FIGURE 7.

‘Have you had any training to prepare you to care for patients with learning disabilities?’ Responses to staff survey question 8 (n = 875).

Sources of bias

It must be borne in mind that the sampling strategy is a source of selection bias. As the principal method for questionnaire distribution was through the LDLN (particularly in the three hospitals with an on-site LDLN), it is probable that respondents were more likely to be carers who had received input from the LDLN. It is likely that this had a positive impact on their hospital experience (see Chapter 9).

Furthermore, there is the strong possibility of response bias, as those carers who hold particularly strong views on the care received (whether positive or negative) may be more likely to respond.

These limitations in the sampling strategy mean that the extent to which positive and negative carer experiences are representative of all carers cannot be determined. However, it does not negate the analysis of contributing factors to (in)effective carer involvement.

Carer perspectives

The full results of the carer questionnaire, including all free text comments, are listed in Appendix 5. Figure 9 gives an overview of the answers to questions 4–20, related to the hospital experience, ranked in order of the level of respondent agreement (highest first). It shows that a high proportion of carer respondents (85%, 75 out of 88) stated that staff were welcoming and supportive of them as the person’s carer.

FIGURE 9.

Carer feedback on the hospital experience, in response to carer survey questions 4–20 (n = 88). The data do not total 100%, taking into account missing data (respondents who did not answer the question).

Carer respondents were asked ‘Overall, how satisfied are you with the standard of medical care provided to the patient by this hospital?’ and could give a rating between 1 and 10, where 1 was ‘not at all satisfied’ and 10 was ‘extremely satisfied’. The mean score was 7.3 (n = 84). Asked how satisfied they were with the ‘experience’ for the patient, the mean score was 7.0 (n = 83).

Carers were invited to provide ‘any other relevant comments’ in a free text box; 59 respondents did so. These comments were a mixture of positive and negative (summarised in Table 7), with some respondents describing both positive and negative experiences. Such ‘mixed’ comments were a result of opposing experiences on different wards, or differences in attitudes among staff, or one negative aspect of an overall good hospital experience.

The issues raised in the questionnaire were further explored in the carer interviews. This confirmed that positive practice was present at each study site, but was not uniform within hospital sites or even within wards. For example, the following comments were made by two respondents from the same hospital:

I would like to thank hospital staff and especially [LDLN] for offering all support and recognition to carers from [residential care setting]. We had unlimited amount of time for stay with the patient, access to hospital staff and free parking permission during all period. Staff was friendly, professional and attentive, gave explanation when was asked and took their time with the patient to ensure she understands what they were doing.

P49, paid carer

Nurses/doctors need to listen to carers when they express concerns. We were not taken seriously on a number of occasions, leading to serious consequences for the person we support.

P97, paid carer

Staff perspectives

The staff survey (Appendix 4) contained a number of statements about involving carers; respondents were asked to rate their level of agreement with these statements. The responses to carer-related questions are summarised in Figure 10, ordered by level of agreement (highest first). This shows an overwhelming level of support among staff for carer involvement. One respondent commented in the free text box:

You can’t care for those patients or any patient without involvement of family and carers.

P94, Director of Nursing

FIGURE 10.

Staff views on carer involvement, in response to carer-related questions in the staff survey. Questions 10.5 and 10.7: n = 914; questions 11.1 to 11.11: n = 875.

The interviews with clinical staff confirmed and expanded on the results of the staff questionnaire. Most nurses stated that they welcomed carers and that carers were offered practical support, in particular food and drink, unlimited visiting hours and facilities to stay with the patient. However, carer involvement was not always without problems or tensions. The positive and negative experiences of carer involvement from the perspectives of hospital staff are summarised in Table 8.

Carer roles

Carers and staff described a range of tasks and roles that can be summarised as follows:

1. reassuring the patient

2. preventing ward disturbance

3. giving basic (nursing) care

4. providing communication support

5. contributing expert knowledge

6. participating in decision making

7. keeping the patient safe.

Carers as ‘visitors’, ‘workers’ or ‘experts’

In analysing the tensions between carers and staff with regards to carer involvement, considering whether carers are seen as ‘visitors’, ‘workers’ or ‘experts’ as described by Allen63 (see Chapter 4, The roles and experiences of carers in hospitals) provides a useful framework. There is a certain degree of overlap between these three roles.

Role expectations

Hospital staff often made erroneous assumptions about the paid carer role. Not all nurses and HCAs were aware of the fact that some paid carers provided social care rather than support with basic physical care tasks. If carers provided intensive support at home, assisting the person with learning disabilities with all tasks of daily living such as feeding, washing and toileting – sometimes including skilled tasks such as the administration of percutaneous endoscopic gastrostomy (PEG) tube feeding – they often continued to perform these basic nursing care tasks when the patient was in hospital. In other cases, carers might simply be there because the patient could not navigate the hospital pathway alone; they would not expect to be involved in basic nursing care tasks.

This could lead to compromised safety if ward nurses assumed that paid carers were health workers like themselves, and left caring tasks to paid carers who could be ill-equipped (or even forbidden by their managers) to perform them. The following quotes, taken from different study sites, exemplify these tensions.

[The hospital staff] expected us to do things that we shouldn’t really be doing. They asked us to help with toileting, but we are not here to do that. We never help our clients with toileting . . . [The nurses] asked our support workers to go in for some quite intimate procedures, like helping with a groin wound: ‘Could you just come in and hold this or push this?’ Now that could be really awkward . . . It blurs the boundaries of your relationship with the client. You have to think about going back with the client into their house, and it would feel really awkward if you have done something so intimate with them . . . Personal care is just not our job. Our job is to get clients to appointments, things like that. So we give our staff quite clear boundaries about what they shouldn’t be doing. But our staff are made to feel uncomfortable on the ward if they are asked to assist and they say no.

P161, paid carer

If they’re a live-in carer or full-time carer of that patient then they should be fully involved in caring . . . here in hospital as well . . . I don’t think it’s any use to me or the patient for them just to be sat there . . . Why would you just need somebody to sit there in a chair, you know, not being involved in feeding?

P42, senior staff nurse

Ward staff further noted with frustration that the nature of paid carer support could vary even for the same patient, with some carers providing significant help with basic nursing care whereas others ‘just sit there’.

Paid carers as non-experts

Not all paid carers knew the patient well. Some were new or short-term agency staff who could not provide even the most basic information about the patient (including the patient’s name), which was difficult and frustrating for hospital staff.

Accountability

The issues of accountability and supervision of paid carers in hospital were not clarified. Ultimate responsibility for the care of a patient who is on acute trust premises lies with that trust. This is of relevance where ward staff leave basic nursing care to carers, or where paid carers perform their usual care tasks when their client is in hospital.

Protocols for shared care

Many of the tensions between carers and staff arose simply because there was no clarity about mutual roles, in particular:

• whether carers were experts or non-experts (or not carers at all, but simply a visitor)

• to what degree carers would contribute to the ‘worker’ aspect of caring.

Carer involvement was most effective where there was good communication between the carer and the ward staff, and where ward staff were clear and explicit about responsibilities and roles, accommodated the contributions from carers and actively sought their expertise. Several trusts had become aware of the need to develop protocols for shared care, whereby the role of family carers (not limited to carers of people with learning disabilities) is made explicit and their contribution discussed. However, this was being trialled after the data collection period for this study.

We now have as part of our carers policy, a kind of negotiation that we have with the carers that says, ‘Okay, Joe’s in here, you normally do all of these things, while he’s in hospital what of those do you want to carry on doing, what of those do you want us to take up?’ I think we have a real responsibility around that and then we need to make sure we’ve documented that and we reflect on how that changes.

P65, Director of Nursing

Practical support for carers

In order to fulfil the role of ‘worker’, carers needed carer-related reasonable adjustments: facilities for carers that included food and drink, a bed and a parking space. The carers’ role became extremely difficult to fulfil if these were not given, either because they were not offered or because they were not available.

Most staff in this study understood this need. In some situations, carers reported that they were left by ward staff to carry out basic nursing care tasks, but were not afforded the same facilities as the nursing staff. This was particularly pertinent when carers were not given any relief from caring and were expected to stay with the patient for many hours without a break.

After the data collection period ended, two trusts initiated carer support programmes, whereby carers were given a ‘passport’ or ‘badge’ to indicate their status as carer.

A staff culture where carers are welcomed as a matter of course

The existence of carer policies, and senior hospital management support for these policies, did not necessarily translate into a culture of support for carers throughout the trust. There was a sense among both carers and staff that the ward manager had a pivotal role and a strong influence on ward culture. Ward managers could be role models in welcoming carers and demonstrating flexibility in the provision of reasonable adjustments.

Some nurses and parents highlighted the positive culture on children’s wards, where there is a much more ready recognition and acceptance of the role of the carer. Similar acceptance and support for carers was reported by carers in relation to intensive care wards. Conversely, example G in Table 9 exemplifies a ward culture where carer involvement is not welcomed. This team of paid carers not only offered support with basic nursing care, but also provided crucial knowledge about how such care provision could best be managed for this particular patient; both were received with hostility by the doctors and nurses.

Funding for paid carers

Many people with learning disabilities who are in hospital need a higher level of support than the average patient on the ward. This is particularly obvious for patients who receive social care support in the community setting. Difficulties arose from the lack of integration between health and social care provision.

There were local variations in the way in which these patients’ support needs were funded (if at all) when they were in hospital, and the rules about this were unclear. Hospitals tried to allocate extra staff to the ward when needed and when possible. Some hospitals paid for a member of the patient’s usual community care staff team to be with the patient while in hospital. There were also examples where the patient’s usual paid carers felt they were expected to provide continued support when their client was in hospital, but the social care payments did not always allow for this. Issues of responsibility and accountability were not always clear when hospitals paid for members of community care staff teams to provide part of the care while the patient was in hospital.

A. High expertise/low involvement in care tasks

• Family carers who cannot be present with the patient in hospital.

• Family carers who are with the patient in hospital but need breaks from active caring.

• Paid carers who are highly involved in supporting the patient in the community but are unable to provide active care support in hospital.

B. High expertise/high involvement in care tasks

• Family carers who provide intensive support to the patient at home and continue to do so in hospital.

• Family carers of patients who have a degree of independence at home but need increased carer support in order to cope in hospital.

• Paid carers who know the patient well, provide care in the community and provide the patient with care and support in hospital.

C. Low expertise/low involvement in care tasks (non-carers)

• Visitors.

• The researchers from this study.

D. Low expertise/high involvement in care tasks

• Paid carers who do not know the patient well but who accompany the patient in hospital, providing a range of support tasks including communication support.

• Extra care assistants provided by the hospital.

Ways of accessing patient and carer views

All hospitals endeavoured to access patient and carer views, but there was a wide range of different ways of doing this. Most of these were in the early stages of implementation (some user groups had only just been established at the time of the participant interviews), and hospitals were still experimenting with the most beneficial formats.

Senior management support

All senior hospital managers interviewed for the study were aware and supportive of the requirement to involve and consult patients and the public. Several Directors and Deputy Directors of Nursing were actively involved in attending local learning disability forums.

However, questions were raised about the best ways to access patient views. Some managers questioned the real contribution patients could make through patient representative bodies, and were concerned about the risk of including ‘token patients’ without any real influence.

Introduction of practical supportive measures

All groups had lobbied for and supported the introduction of practical measures to make hospitals more accessible for people with learning disabilities. These included:

• the introduction of patient-held information documents

• the production of easy-read hospital information leaflets and other easy-read materials

• the acquisition of beds/chairs to enable carers to stay with the patient overnight

• accessible toilets

• hospital signs.

Providing consultation

All groups acted as a ‘sounding board’ by providing expertise for hospitals that were implementing new learning disability-related measures. Where hospitals did not have their own user group of people with learning disabilities, hospital managers consulted community-based learning disability groups. This included the development of any easy-read materials or of particular learning disability care pathways.

Providing feedback on hospital services

Whereas ‘consultation’ was hospital-directed (i.e. hospital managers requested feedback on issues they themselves raised), some groups also provided their own feedback. Examples included one hospital where people with learning disabilities attended nurses’ meetings to raise issues of importance to them.

An innovative way of providing feedback was through ‘secret shopper’ testing of hospital services. The LDLNs at two hospitals described how they had organised and supported people with learning disabilities to do a walkabout in the hospital in order to test the service and highlight any potential difficulties. In one hospital, this had demonstrated clinical areas where staff were helpful and respectful, but also an area where attitudes could be improved.

Lobbying for a learning disability liaison nurse service

People with learning disabilities at several hospital sites mentioned the importance of the LDLN service and had lobbied hospital managers for implementation or expansion of this service.

Teaching staff

At several hospitals, people with learning disabilities from local groups or hospital forums were invited to share their experience with hospital staff, for example through presenting at a conference, teaching students or attending a meeting with ward staff. The LDLNs who had supported this and the staff who had experienced it invariably reported to the research team that such patient and carer involvement was inspirational and memorable.

Raising learning disability awareness

Several groups had been involved in raising the profile and visibility of people with learning disabilities through the production of flyers promoting the LDLN service or organising ‘learning disability awareness events’ within the hospital.

Enablers of effective inclusion of patient and carer views

Barriers to effective inclusion of patient and carer views

Clinical patient care

All LDLNs had a caseload of patients with learning disabilities. They provided support for patients, carers and staff throughout the patient’s hospital journey. Referrals came either through the hospital (referrals from hospital staff, or the LDLN actively looking for patients within the hospital) or through the community, by carers and patients contacting the LDLN directly or by community staff making referrals.

The role was often extremely complex and required significant skills in communication and negotiation. Key aspects of the LDLN role included:

• the provision of expertise around mental capacity assessments and individualised communication

• communicating and liaising with carers, ensuring that the carers’ voices were heard and their needs were met

• liaising with other services, in particular primary care services

• co-ordination of care, which included ensuring a wide range of reasonable adjustments were in place (see Chapter 6).

Without [LDLN input] there is no sort of yardstick or benchmark. You know, a phone call: ‘Have you done this? Have you done that?’ Even if it’s ‘yes, yes, yes, yes’, that’s fine – but if it’s ‘no, no, no, no’, then she can either help, give advice. If you go and trawl through the intranet and it takes you half an hour to find the policy, you’re not likely to do it. And if the patient comes in on their own or there’s a problem with the relatives, then it also becomes problematic and [LDLN] can sometimes intervene.

P50, ward staff nurse

Education and practice development

The delivery of education and training to all hospital staff was an essential element of the LDLN role, although this was not straightforward in practice. Part of the challenge was finding effective ways of training a vast workforce. One LDLN had worked out that if she wanted to reach all the hospital’s staff in a formal training session across the year, it would mean training well over 100 staff members per week.

There was concern, in particular among senior managers, that having a LDLN could de-skill the workforce by ‘taking over’ patient care. However, there was no evidence in the study that the hospital staff were de-skilled by input from the LDLN. On the contrary, LDLNs ‘role modelled’ good practice, including possibilities for reasonable adjustments, that were then more likely to be taken up by hospital staff when the LDLN was absent. Interviewer:P79, Deputy Director of Nursing:

How do you think [employing a LDLN] has panned out in terms of staff being more skilled or not skilled?

Definitely more skilled . . . They see the different techniques that they can use, they then start to use those skills so she doesn’t get phoned to ask, ‘What do I do?’ She may well then get a contact which says, ‘I’ve done this, is that fine?’ The next step is then actually she doesn’t get called at all and it’s incorporated within the generalist care of the patient. And that is the end point, that’s what you want to achieve.

Strategic organisational development

The LDLNs, where there was one in place, were often a driving force behind the development of all policies, guidelines and resources related to learning disability. Several senior strategic managers indicated that they relied on the LDLN to be on top of relevant legislation and national recommendations as well as potential problem areas, as they themselves did not always have good understanding of the issues around learning disabilities.

Championing

Learning disability liaison nurses were enthusiastic advocates and champions of the needs of people with learning disabilities within the trust; this increased the effectiveness of the role. Some carers noted a positive change in staff attitude and hospital culture and thought that the LDLN was an important part of this change.

I’ve noticed a great sea change, it’s more an attitude on the part of the staff . . . [In the past] we were pretty much left to deal with things ourselves, you know, carrying trays whilst pushing a wheelchair. But now people help. [LDLN] has done a lot of work and I have seen the difference. Dealing with the staff, receptionists, doctors, they are more understanding of [my daughter]’s needs, even high powered consultants address [my daughter] now.

P157, family carer

Effective championing and awareness meant there was a greater likelihood that hospital staff considered the specific needs of individual patients with learning disabilities.

If I see those words [learning disability] come up [on the handover sheet] I think, ‘We must make sure that we let [LDLN] know they’re here’ . . . It just sort of clocks in my mind a little bit more.

P23, ward manager

Learning disability expertise

The LDLNs’ high level of learning disability expertise was clearly recognised and valued by hospital staff. They mentioned the LDLN’s expertise with communication, knowledge of the Mental Capacity Act, help with assessing the patient (including assessments of capacity) and skill in liaising with families. Physicians noted that they found it difficult to do mental capacity assessments for patients with learning disabilities and to keep up to date with legislation, and depended on the LDLN’s expert help.

Hospital staff admitted that they themselves lacked the necessary expertise to provide a good standard of care for patients with learning disabilities, and therefore needed expert help.

Authority to change patient pathways

For patients and carers, the fact that the LDLN was able to affect and change the patient journey made a huge positive difference.

In the last admission we were blocked by a nurse at A&E, but within five minutes of a call to [LDLN] things went OK. When he came to A&E this time I phoned [LDLN] beforehand, and she and the GP told them he was coming and they were ready for him.

P11, family carer/parent

As has been shown in Chapter 6, the provision of reasonable adjustments can require complex changes to patient pathways involving trust-wide structures and systems. For the LDLN to be effective in her role, she needed to have an in-depth understanding of the organisation so that she could determine whether, and how, its structures and systems could be adapted to meet the patient’s needs. This included a consideration of the pressures and capacity on general hospital services as well as the needs of the patients. For this reason, senior managers and LDLNs at several trusts argued that it was important for LDLNs to be hospital based. There was indeed evidence within the study that the community-based LDLNs lacked the seniority and inherent authority within the hospital structures to be effective change agents. They also seemed much less well known by hospital staff, affecting the readiness of the hospital staff to make suggested changes to patient pathways. They were more dependent on the active backing of senior hospital management when giving specific advice around changes to individual patient pathways.

I have more freedom just to move within the hospital, so I can go into places like theatres . . . And it’s about knowing the people in the hospital and getting them to know and trust and respect what you say. I’ve got the back-up of the fact that we are all on the same team, whereas when I was a community nurse, outside . . . it sometimes felt like ‘you’re trying to drop us in it’.

P9, LDLN (hospital based)

Visibility, approachability and availability

Senior management support

Learning disability liaison nurses who had direct and easy access to the (Deputy) Director of Nursing and were strongly supported in their role felt empowered and were able to perform well. This could include support for clinical decisions and implementation of specific adjustments to patient care. It was also reflected in the ease with which LDLNs could carry out their responsibilities, and the presence or absence of organisational barriers. One LDLN said:

For a while I wasn’t even included in the training programme. I had to do it ad hoc. I had to book my own rooms, I had to manage my own bookings.

P48, LDLN

The line management structure and lines of accountability for the LDLN post were important, not only for the support of the individual post holder but also for the implicit value placed on the role within the trust if the LDLN reported directly to a senior manager such as the Director of Nursing.

I’ve had no clinical supervision. I could be doing anything, I could do whatever I like, I could be absolutely rubbish and no-one would know. There’s a lot of lip service from the management but there is no understanding of my role and no support. It’s not valued internally.

P2, LDLN

Hospitals with strong management support for the LDLN role were more likely to have adopted a wider range of measures to improve the care and safety of patients with learning disabilities. This in itself was more likely to make the LDLN role effective. Senior management support for the LDLN role did not always seem to be embedded, but rather depended on the enthusiasm of individual senior managers or on how ‘high profile’ the issue of patient safety for people with learning disabilities was perceived to be.

Examples of preventable deterioration

A number of examples of patient safety issues were recounted to the research team, some of which have already been described in this report. Further examples are given in Box 1.

Difficulties in establishing preventable deterioration

These examples, taken from all six study sites, demonstrate a wide variety of ways in which preventable deterioration may occur in different clinical settings within acute hospitals, and show that patients across the spectrum of learning disability have been affected. However, attributing failures in care to the existence of a patient’s learning disability is extremely complex and usually requires a full and detailed investigation and analysis, as is demonstrated by the reports of the Health Service Ombudsman2 and CIPOLD. 3 Therefore, although many of the examples in Box 1 appear to demonstrate clear-cut service failure resulting in harm, the extent to which these failures are directly caused by discrimination against patients who have learning disabilities or lack of reasonable adjustment to accommodate their needs is difficult to assert with full confidence. Similarly, it is often the case that the ‘preventability’ of deterioration is difficult to define as, even with the best medical and nursing care, deterioration is often a natural consequence. For instance, it may be difficult to assert that the harm described in example E was indeed preventable.

Staff perceptions of patient safety and preventable deterioration

Most of the tangible examples of patient safety issues that had resulted in harm (rather than general descriptions of what might constitute a patient safety issue) were provided by carers. There may be a number of reasons for this. One issue was the apparent conscious or unconscious desire of hospital staff to paint their trust in a positive light and to focus on demonstrating the steps they had taken to improve the safety of care provided for people with learning disabilities. This may have been to the detriment of openly talking about any potential gaps in safety of care or areas for improvement. For example, within the clinical staff questionnaire, participants were asked whether patients with learning disabilities had deteriorated unnecessarily within the past 3 years. Just 2.9% of respondents (24 out of 825) indicated ‘yes’ in response to this question (see Appendix 4).

It also became clear throughout the interviews that a significant minority of clinical and managerial hospital staff did not think that patients with learning disabilities were at increased risk.

I think it’s the same as the safety for the rest of our patients, I don’t think that they are in any further risk than the rest of the patients that we see here.

P26, staff nurse

Your special need isn’t really going to kill you.

P54, ward manager

Lack of basic nursing care

Several carers and hospital staff described a lack of basic nursing care provided for patients with learning disabilities, or an over-reliance on carers to carry out nursing tasks (see Chapter 7). Concerns relating to basic nursing care were frequently raised around feeding and hydration, and pressure area care.

Misdiagnosis

Examples B and D in Box 1 illustrate diagnostic overshadowing leading to misdiagnosis. Participants with learning disability expertise suggested that this was a particular risk when hospital staff failed to engage carers or LDLNs who can provide background information and aid communication.

Difficulties in communicating with the patient about symptoms and medical history were described as being crucial in contributing to misdiagnosis or diagnostic overshadowing. Examples of misdiagnosis of patients with learning disabilities had led to varying outcomes, ranging from no known harm through to serious harm.

I once found it difficult to assess a young patient with learning difficulties who appeared agitated after a head injury. I had to rely on the information given to me by the mother which was not accurate. The patient was discharged and returned a few hours later with an inter-cranial bleed. This could have been prevented if I had been able to assess the patient better and more thoroughly.

P581, emergency care practitioner (free text on questionnaire)

However, it should be noted that a number of hospital staff did not feel that patients with learning disabilities were at increased risk of misdiagnosis in comparison with other patients. This finding could, in part, be due to the relative infrequency of misdiagnosis coupled with the relative infrequency of caring for patients with learning disabilities. This is perhaps reflected in the results of the clinical staff electronic questionnaire (see Appendix 4), where only 1.2% of staff (10 out of 825) indicated that, within the past 3 years, a patient with learning disabilities had been misdiagnosed within their clinical area.

It may be of interest to note here that the CIPOLD report3 stated that:

. . . a small number of problems with diagnosing a person’s illness were due to misdiagnosis (7%).

p. 58. Reproduced with permission from Heslop P, Blair P, Fleming P, Hoghton M, Marriott A, Russ L. Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD): Final Report. Bristol: Norah Fry Research Centre; 2013

These were mostly cases of cancer being misdiagnosed as another illness, or doctors not challenging a provisional diagnosis as symptoms developed.

Delayed investigations and treatment

Examples A, B, C, D, F and H in Box 1 all provide examples of compromised patient safety which resulted in harm to the patient as a result of delayed investigations and delayed treatment. Contributory factors underpinning these examples and others were wide-ranging. There could be difficulties in accessing hospital services (for example, non-attendance of outpatient appointments); failure to provide the reasonable adjustments needed to enable the patient to have the investigation or treatment (see Chapter 6); poor staff attitudes, including assumptions about quality of life (see Misuse of the Mental Capacity Act); and issues around the patient’s ability to give consent or the correct implementation of the Mental Capacity Act (see Misuse of the Mental Capacity Act).

Other examples in relation to delayed treatment included the timely recognition and treatment of pain, and problems with medication.

Non-treatment decisions and ‘do not attempt resuscitation’ orders

There were examples (including example A in Box 1) where carers felt that decisions about whether or not to provide active treatment for patients with learning disabilities were being inappropriately influenced by staff assumptions about quality of life or by staff members’ fear of treating patients whom they perceived to be challenging. In such examples, treatment was provided at the carers’ utmost insistence, and patients who may otherwise have died were able to return home.

[The doctor in A&E] took me to one side and he said, ‘What sort of quality of life is she going to have if we pull her through this?’ And I said, ‘She’ll have a fantastic quality of life, she’s got close family, she’s got excellent carers, she’s got lots of things to look forward to in her life’. And he said, ‘Well, it’ll be up to the ICU [intensive care unit] team whether or not they’ll treat her, you do realise that she isn’t going to survive if we don’t treat her?’

P128, family carer

If my staff had not supported [patient], he would either be in a coma or dead because they just wouldn’t have given him any medical intervention.

P184, paid carer

Similarly, in some cases nursing staff and carers felt that DNAR orders were inappropriately based on staff assumptions about the quality of life of patients with learning disabilities.

One thing, personally, which upsets me the most – I know they have learning disabilities and it’s not very severe sometimes – but they just put all of them when they come in, ‘Not For Resus’.

P57, ward manager

Misuse of the Mental Capacity Act

The study results revealed a number of problems that clinical staff working in acute hospitals have with understanding and correctly implementing the Mental Capacity Act. 30,31

Example F in Box 1 described incorrect use of the Mental Capacity Act. Other examples included patients being asked to sign a consent form (and obliging) without any explanation being given, despite staff having been told that the patient lacked literacy skills.

Furthermore, delays to investigation or treatment are often imposed while capacity is assessed or while a ‘best interest’ decision is being reached. One family carer described difficulties in trying to obtain a timely ‘best interest’ decision to enable her profoundly disabled son to have an urgent procedure to unblock his PEG feeding tube.

We literally ran round . . . What they should understand is that the PEG is his lifeline, the food, water, if that’s not working, he can’t swallow . . . and that’s where we run into trouble. People don’t always get it, they don’t understand that there’s urgency.

P123, family carer

Within the staff survey, 23.8% of clinical staff (196 out of 825) said that within the past 3 years certain tests or treatments were delayed because the patient was unable to give consent. Furthermore, 8.6% of clinical staff (71 out of 825) indicated that within the past 3 years certain tests or treatments were not given because the patient was unable to consent.

Many hospital staff appeared to misunderstand the Mental Capacity Act or lacked confidence in using it. Within the staff survey, staff were asked whether they felt confident in using the Mental Capacity Act; their responses can be found in Figure 13.

FIGURE 13.

‘Do you feel confident using the Mental Capacity Act?’ Responses to staff survey question 18 (n = 835).

This uncertainty was not restricted to junior staff; during interviews a number of senior clinical staff highlighted difficulties in correctly following the Mental Capacity Act, which may result in harm or even patient death.

[The patient] had cancer and needed surgery. I didn’t realise that he didn’t have the capacity to say ‘no’ to the operation. He didn’t want the operation, and I just thought that was that. But [LDLN] came along and asked him, ‘What do you think will happen if you don’t have the operation?’ and he really didn’t know. He didn’t have the capacity. So it became a best interest decision, and we decided to do the operation.

P1289, consultant physician

Aside from the delays inherent in organising best interest meetings, where used these were generally thought to be productive. However, it appeared that the correct use of best interests meetings was still not ‘the norm’ in some settings.

Incident reports at the study sites

Incident report data were provided by five of the six study sites. Staff at the site that did not provide this information stated that they were unable to identify which incident reports involved patients with learning disabilities.

Qualitative analysis demonstrated that a wide range of incidents involving patients with learning disabilities had been reported. These spanned inappropriate management of perceived challenging behaviour; physical abuse towards hospital staff (sometimes resulting in injury and sometimes not); incorrect use of the Mental Capacity Act; delays to diagnostic tests; delays to treatment; drug errors and omissions; pressure sores; feeding problems; poor tracheostomy care; falls, accidents and injuries; hospital-acquired infections; safeguarding alerts; patients absconding/discharging against medical advice; treatment in an inappropriate clinical area; and unavailability of equipment.

Rudimentary assessment of the number of each type of incident reported revealed that staff often report tangible, physical patient safety issues (such as falls, pressure sores or medication errors), for which there may be a particular drive in favour of reporting at an organisational level. While this research did not seek to quantify the types of patient safety issues that are reported, cross reference to the other sources of data collated during the study may imply that important issues such as problems with feeding or hydration, or delays to patient care may be less readily identified than patient safety issues that require reporting.

Difficulties with using incident reports to monitor patient safety

It is known that incident reports tend to be biased towards certain patient safety incidents and the study results appear to concur with this. For example, some hospitals are excellent at reporting falls, as the need to do so has been widely promoted. There are, however, a vast number of potential reasons why some incident types may be under-reported. Acts of omission are a particular concern.

The study findings suggest that hospital staff are often unclear as to what the safety issues faced by people with learning disabilities are (see also Staff perceptions of patient safety and preventable deterioration). It can be suggested that this may make it difficult for staff to conduct thorough and appropriate risk assessments and safeguard against potential adverse events.

A further major difficulty in using incident reports to assess safety risks was the lack of effective systems for identifying patients with learning disabilities (as described in Chapter 5) and, therefore, accurately identifying all incident reports that involved patients with learning disabilities. Furthermore, discussions held throughout the course of the project revealed that hospital staff often felt that the person’s learning disability was not relevant to the incident and therefore failed to indicate the learning disability on the incident report.

For these reasons, incident reports which are specifically flagged as involving a patient with a learning disability are likely to be a small subset of the incidents that actually take place, and are consequently a poor method for monitoring patient safety issues in this group of people.

Conducting the literature review

A vulnerable adult is someone who is ‘aged 18 or over, receives or may need community care services because of a disability, age or illness, and who is or may be unable to take care of themselves or protect themselves against significant harm or exploitation’. 105 Because of time constraints, this was not a comprehensive literature review, but rather an exploration of issues raised in this study, using web-based searches with a particular focus on relevant national policies and reports. Below is a brief summary.

Patient safety issues for other vulnerable patient groups

There is considerable evidence that vulnerable patients face health inequalities and safety risks in hospital, including a higher risk of medical error. Patient groups at increased risk include the elderly,85 patients with complex needs,106 patients with low socioeconomic status,107,108 patients with limited English proficiency or limited health literacy,109,110 minority populations and immigrant populations. 108

Patients with mental health problems have been reported to have poorer health and to die prematurely, caused in part by ‘diagnostic overshadowing’. 111 The term ‘treatment overshadowing’ has also been used in relation to this group. This includes an unwillingness to address possible barriers to appropriate care when making treatment decisions. 112

Dementia significantly increases the length of hospital admission113–115 and the risk of medical harm through the use of multiple medications. 116 Recent national reports and strategy documents117–119 have raised concerns regarding the quality of care received by people with dementia in acute hospitals. Carers of patients with dementia have reported how behavioural and psychological symptoms of dementia may worsen during hospital admission,117 although a systematic review found no studies on how hospital staff manage these symptoms and their impact on patients. 120

Identifying and flagging vulnerable patient groups

Literature on the subject of identifying and flagging vulnerabilities was found to centre mostly on identifying dementia. The CQC found that almost a third of hospital admissions involving people with dementia did not include a record of their dementia, despite the fact that it had been identified in the past, and called for better identification of dementia as well as comprehensive training for care staff. 121 It has been recommended that schemes are put in place to enable ward staff to identify patients with dementia,122 as in the case of the ‘butterfly scheme’. 123

However, as with people with learning disabilities, many people with dementia do not have a formal diagnosis. One study found that, in a cohort of 617 hospital patients aged > 70 years, 42.4% had dementia; less than half of these had been diagnosed before admission. 124 The routine screening for dementia proposed by the prime minister has not been universally welcomed by physicians, who fear it will not meet the criteria for screening and is not a good use of resources. 125

Providing reasonably adjusted health services

The national audit of dementia care in general hospitals,122 which involved 55 hospitals, found that there was a general lack of patient-centred care, with environments that were not dementia-friendly. Pockets of good practice were identified but there was no evidence of effective organisational systems for implementing person-centred care. The audit further found that carers were not systematically involved in patient care and discharge planning.

Specialist nursing roles

There has been recognition of the importance of training and appointing specialist nurses in order to ensure that the needs of particular vulnerable groups are met. In 1999, the National Service Framework for Mental Health stipulated that all A&E departments should have mental health liaison services to ensure appropriate and timely interventions for patients with mental health problems. This has since developed into a psychiatry liaison service in NHS hospitals that is much wider than just A&E departments. 126

Most recently (February 2013) the Francis Inquiry85 identified elderly patients as being particularly vulnerable in NHS hospitals and recommended that services consider introducing a registered older person’s nurse, in recognition of the special requirements needed to care for the elderly.

Identifying vulnerable patients within NHS hospitals

Reasonable adjustments

Involving carers

Protocols for shared care would be helpful for all patients who have carers. One hospital asked all patients on admission whether they relied on a carer or whether they had caring responsibilities themselves; this led to an assessment of the carers’ needs.

There was agreement that it would be helpful for all carers, not just carers of people with learning disabilities, to negotiate and agree the carer’s role and their support needs during the patient’s hospital stay, although some expert panel members felt that in some areas (such as ICUs), and for some patient groups, this was already being achieved. It was also recognised that any protocols or policies for shared care would have to allow for highly individual needs and focus on establishing the extent and boundaries of care.

Specialist nurses

Invisibility of patients with learning disabilities

The fact that most people with learning disabilities are unknown to any health and social care services, and the current lack of effective systems for communicating information about known learning disability between primary and secondary health-care services, constitute significant cross-organisational barriers. Organisational barriers include a lack of effective systems for flagging learning disability and a considerable lack of staff expertise and staff willingness to identify and flag learning disabilities, encompassing not just junior but also the most senior staff.

Lack of staff understanding

Many of the staff interviewees were dedicated to improving care for people with learning disabilities and wanted to do the very best for their patients. However, there was a widespread and persistent lack of understanding across all staff groups and all levels of seniority of the ways in which the support needs of people with learning disabilities might differ from those of the general population. There was also a lack of staff understanding of the fact that delays in, or omissions of, care and treatment are a particular safety risk for people with learning disabilities, and of the reasonable adjustments that may be needed to ensure that they do not happen. Staff lacked understanding and skill in applying the Mental Capacity Act correctly to patients with learning disabilities. There were indications from all stakeholders that staff apprehension about caring for a patient with learning disabilities can lead to omissions of care.

Lack of consistent and effective carer involvement

Staff did not always understand the essential role of carers and the importance of including carer expertise. Although the study found some excellent practice, where carers were supported in their caring role and their expertise was sought and utilised by staff, many of the examples of compromised patient care involved carers that were not listened to. Carers were appreciated for the help they could give with patient care, communication and patient reassurance, but their crucial knowledge of the patient was often disregarded. Patients were put at further risk by staff making assumptions about the input of carers; at worst, there were examples of hospital staff failing to provide basic care.

Lack of clear lines of responsibility and accountability

Those with specific responsibility for the safe and reasonably adjusted health care of people with learning disabilities within the hospital, and for co-ordinating their care, varied across study sites and included the LDLNs, the trust’s clinical lead for safeguarding vulnerable adults, and hospital matrons. Most of these (and the LDLNs in particular) had learning disability expertise and demonstrated passion and drive to improve patient care. Their roles included co-ordination of care and ensuring that the needs of individual patients were met. However, patients with learning disabilities were not reliably referred to them, partly because of a lack of effective flagging systems. Several of these roles were part-time.

The lines of accountability and responsibility were not clear. It was not clear exactly what responsibility or accountability LDLNs had for the care of patients with learning disability, and who carried accountability, awareness and expertise in their absence.

At ward or clinic level, there was a lack of clear allocation of responsibility and accountability for ensuring that patients with learning disabilities had their care and treatment needs met. Carers reported seeing different members of staff on each shift. Given the significant lack of staff knowledge and understanding of learning disability and associated vulnerabilities, this led to good practice being haphazard throughout the organisation.

Learning disability liaison nurse

The LDLN role was pivotal in a number of areas. Hospitals with a LDLN were best able to identify patients with learning disabilities within their services. LDLNs identified individual needs for reasonable adjustments and were able to ensure their implementation. They were able to co-ordinate care that could be highly complex. They provided staff training and, possibly more importantly, they were a role model for staff and an effective advocate within the hospital, raising awareness and championing the needs of people with learning disabilities.

The lack of staff understanding of learning disability issues and associated patient safety risks, together with the invisibility of patients with learning disabilities within the health-care system, made the presence of on-site learning disability expertise particularly important in reducing patient safety risks. On-site LDLNs were better than community-based LDLNs at raising staff awareness, gaining staff trust and increasing the numbers of patients with learning disabilities identified within the hospital.

However, this enabling role could easily be undermined by a lack of resources (including a lack of cover), lack of senior management support, lack of clarity about the role and a lack of authority to act. The enabling role of the LDLN needed to be embedded and backed up by the hospital structures.

The ward manager

Wards that received the highest praise from carers, with reports of consistently positive staff attitudes and consistent provision of reasonable adjustments, were those where the ward manager ran ‘a tight ship’. LDLNs could pinpoint which wards were ‘good’ and which were less so; this was mostly dependent on a ward manager who understood the issues around learning disability, supported junior ward staff and called for learning disability expertise where needed. Front-line staff were key to delivering a better service to people with learning disabilities and their carers; ward managers were critical in ensuring that care was delivered well.

Research recommendation 1

Further research is needed to answer the following questions:

1. What reasonable adjustments are needed most frequently within the hospital care pathways of people with learning disabilities?

2. What knowledge, systems and structures are needed within the hospital to ensure that these reasonable adjustments are routinely made?

3. What are the cost implications of reasonable adjustments, and how can this be translated into the PbR system?

Such research might take the form of a large-scale multiple case study in which the hospital pathways of a large number of patients with learning disabilities are reviewed in depth, identifying and quantifying the barriers they face as well as the reasonable adjustments they need. This could also include an investigation of the facilitators of and barriers to (non-)provision of these reasonable adjustments.

Research recommendation 2

Further research is needed to answer the following questions:

1. Who is best placed within acute NHS hospitals to take on overall responsibility and accountability for the care pathways of patients with learning disabilities, and what structures are needed to facilitate this?

2. How effective are ward managers in taking on day-to-day responsibility and accountability for the care of patients with learning disabilities?

3. How effective are ward managers in identifying patients with learning disabilities and their need for reasonable adjustments?

4. How effective are ward managers in ensuring that reasonable adjustments are consistently implemented, and in utilising specialist learning disability expertise?

5. What training and support do ward managers require in practice to enable them to achieve these goals?

Research recommendation 3

Further research is needed into practical and effective ways of flagging patients with learning disabilities in NHS hospitals, including the following questions:

1. What are the barriers to identifying and flagging people with learning disabilities within primary care, particularly GP practices, and to sharing this information consistently with NHS hospitals?

2. How can such barriers best be addressed across the NHS?

3. Within NHS hospitals, is it feasible to screen for learning disabilities? What expertise is necessary to do this effectively?

4. What are the views of patients with learning disabilities and their carers on identifying the presence of learning disability on NHS records?

Research recommendation 4

There is a need to investigate, implement and evaluate models or protocols for shared care. This could be a protocol whereby the possible need for family or paid carer involvement is identified for all patients on arrival, with the specific individual contributions of carers to be clarified, agreed, monitored and recorded. As this constitutes an investigation of a change intervention that must be embedded and effective within the hospital setting, action research methods would be appropriate.

Research recommendation 5

Further research is needed to investigate (a) what different LDLN service models are available across the UK, and the advantages and disadvantages of these models; (b) what the comparisons are between hospitals with and without a LDLN; (c) how learning disability expertise can best be shared and accessed throughout the organisation; (d) what the best practice models are in relation to authority and lines of accountability for the care of patients with learning disabilities; (e) whether the LDLN service should be standardised or local differences are important; and (f) what the cost–benefit implications are of a LDLN service.

Research recommendation 6

Further research is needed into effective delivery of reasonably adjusted NHS health-care services to patients with dementia and patients with mental health problems. This needs to include an investigation of effective ways of identifying these patients within the health-care system (similar to research recommendation 3), and an investigation of the particular types of reasonable adjustments needed for these groups, together with their cost implications (similar to research recommendation 1).

Q8.1 Are you given sufficient background information to enable you to care for patients with learning disabilities in the best way? (Clinical information)

Q8.2 Are you given sufficient background information to enable you to care for patients with learning disabilities in the best way? (Information on general needs such as communication needs)

Q8.3 Are you given sufficient background information to enable you to care for patients with learning disabilities in the best way? (Information about social circumstances)

Q8.4 Are you given sufficient background information to enable you to care for patients with learning disabilities in the best way? (Information on personal preferences such as particular likes and dislikes)

Q9b. If ‘yes’ to Q9 . . . How useful do you think this patient-held information is?

Q10.1 I often find it difficult to know whether or not a patient has learning disabilities

Q10.2 I sometimes find caring for a patient with learning disabilities challenging

Q10.3 We don’t really have the time or resources to cope with patients with learning disabilities properly

Q10.4 I sometimes find communicating with patients with learning disabilities difficult

Q10.5 Some of my colleagues see ‘involved families and carers’ as a bit of a nuisance

Q10.6 Some of my colleagues don’t really understand what the specific needs of a patient with learning disabilities are

Q10.7 If a patient with learning disabilities needs it, we let their carer stay with them as much as they like

Q10.8 If a patient with learning disabilities needs it, we are able to give them extra time

Q10.9 I know where to find easy-to-understand information for a patient with learning disabilities

Q10.10 I sometimes feel it is inappropriate for a patient with learning disabilities to be cared for in my clinical setting

Q11.1 It is standard practice in this clinical area to involve family and carers in care

Q11.2 Involving family and carers can help communication with patients with learning disabilities

Q11.3 Involving family and carers can help support patients with learning disabilities in their emotional needs

Q11.4 Involving family and carers is reassuring for patients with learning disabilities

Q11.5 Involving family and carers helps us to get things done as it is a practical support

Q11.6 Sometimes family and carers interfere with the care of individuals with learning disabilities

Q11.7 Supporting family and carers distracts attention away from patients with learning disabilities

Q11.8 Supporting and directing family and carers of patients with learning disabilities can be time consuming

Q11.9 Family and carers can pose a safety risk by not observing health and safety regulations

Q11.10 Family and carers know the needs of patients with learning disabilities best

Q11.11 Family and carers can provide individualised care that we could not

Q12.1 Provide facilities for carers to stay if they wish to

Q12.2 Accommodate visits out of visiting hours

Q12.3 Provide ‘easy-to-read’ information

Q12.4 Make special arrangements for health-care professionals to speak with carers

Q12.5 Involve carers in planning treatment

Q12.6 Involve carers in planning discharge

Q12.7 Provide extra time for appointments

Q12.8 Allow staff to have extra time to provide support that is required

Q12.9 Provide first or last appointments of the day

Q12.10 Provide special arrangements such as a quiet room

Q12.11 Provide access to advocacy

Q12.12 Provide access to an independent mental capacity advocate

If ‘yes’ or ‘maybe’ to Q13 . . .

Q13b. Was this abuse/neglect/discrimination reported?

[Exclusion criteria: non-clinical staff, last question completed < 13, answered ‘no’ or did not answer question 13]

The patient did not get sufficient food or drink

Communication with the patient was not as good as it should have been

Communication with the family or carers was inadequate

Certain tests or treatments were delayed because the patient was unable to give consent

Certain tests or treatments were not given because the patient was unable to give consent

It was not possible to complete a full assessment of the patient’s needs

It was not possible to obtain advice from a learning disability expert at the time this was needed

The patient was given the wrong medication, the wrong dose, or did not receive their medication

Staff avoided the patient because of unusual, different or challenging behaviour

The patient was misdiagnosed

The patient deteriorated unnecessarily

Yes, pre registration/qualification

Yes, post registration or through the workplace

No

Written guidance

Oral guidance

On-the-job guidance from a colleague

Q18b. If ‘yes’, ‘no’, or ‘not sure’ to question 18: Do you feel confident to use the Mental Capacity Act?

Q2a. Your age

Q3a. In which month and year did the person come to hospital for treatment on this occasion?

All admissions were between June 2011 and September 2012. A breakdown of admissions by month can be seen below (valid = 61; missing = 27)