135. The treatment of adults with learning disabilities by health and social care services has been in the spotlight recently, but for all the wrong reasons. In Chapter 2, we referred to a number of reports by organisations including the inspectorates, the Disability Rights Commission and Mencap. All of these concluded that the treatment of adults with learning disabilities by health and social services had been woefully inadequate. In the twelve months preceding our inquiry, no less than five key reports were published detailing abusive, neglectful or discriminatory practice in health and residential care settings. In the light of these reports there has been, and continues to be, considerable focus on investigating and improving practice. This includes the investigation of the six deaths highlighted in Mencap's Report Death by Indifference, by the Health Ombudsman; the recently completed Healthcare Commission Audit; and the ongoing independent inquiry instigated by the Department of Health.[202]

136. Although we have heard of examples of good practice[203] during the course of this inquiry, we have received a considerable volume of evidence which demonstrates that adults with learning disabilities continue to have difficulties accessing good quality healthcare where they are treated as individuals, with respect for their dignity and human rights. We are concerned, but not surprised, that the evidence we received shows that people with learning disabilities face similar problems in healthcare as older people,[204] including:

• Malnutrition and dehydration (Articles 2, 3 and 8 ECHR):[205]

Two middle managers have been trying for over 8 years to get a "dysphagia" service (eating and drinking) for people with high support needs…This group of people have problems with swallowing and so the position they sit in and their nutrition intake as well as thickness of food/fluids, have to be taught to medical professionals providing care for them. In this PCT (as I am sure is the case in other PCTs as well) this service is only provided if the person is an inpatient in acute services[206]

• Abusive and degrading treatment (Articles 2, 3 and 8 ECHR):[207]

B, a young man with Down's syndrome and Autistic Spectrum Disorder was locked in a day centre minibus overnight in a garage. There is a real possibility that his incarceration was part of a sexual assault. One week later, four male members of staff at his day centre broke his foot whilst trying physically to force him onto a mini-bus.[208]

• Neglect or carelessness by health and social care services (Articles 2, 3 and 8 ECHR):[209]

Her relatives visited after the operation and found Susie lying on her back, eyes open but not saying a word. Usually, she was talkative and lively, and worried, they went to ask the Sister why she couldn't talk. The Sister glanced at the notes and commented 'well, she can't talk can she, if she has a learning disability?' Susie was re-examined and found to have had a minor stroke.[210]

• Lack of privacy in health and social care settings (Article 8 ECHR):[211]

I clean my room, when I get home they've done it all again. Why should I do it if they want to do it again? I have a street door key but I can't lock my room door.[212]

• Lack of dignity in respect of personal care needs (Article 8 ECHR):[213]

They want me to bath twice a day, the water is often cold.[214]

• Inappropriate use of restraint and/or medication (Article 8 ECHR):[215]

We have also worked with many people with a learning disability who are being inappropriately restrained through mechanical and chemical and physical restraints. Despite guidance which sets out procedures and best practice for the decision making and use of restraint we have found a worrying amount of extremely poor practice in this area. We have also found that a restraint is often used as a way of managing low staffing levels and as a first response rather than as a carefully assessed last resort.[216]

Diana, who has a visual impairment and scoliosis, kept colliding with people and furniture and falling, resulting in injuries. The staffing levels at her home were not sufficient to support her when walking round her home so she was strapped into her wheelchair.[217]

K a middle-aged woman with Down's syndrome threw a cup at a wall in her care home on the first anniversary of her mother's death. […] Instead of trying to find out why she had thrown a cup, the woman was prescribed anti-psychotic medication.[218]

• Problems with communication, particularly where patients have complex or profound learning disabilities (Article 8 ECHR):[219]

Staff on the ward may not understand the communication system used by a learning disabled patient (which could be verbal, a recognised sign language such as Makaton or sounds, signs and gestures idiosyncratic to the patient). They may misinterpret or even ignore what the learning disabled patient is trying to communicate.[220]

• Negative, patronising and infantilising attitudes towards people with learning disabilities (Article 8 ECHR):[221]

Manny suffered from arthritis in his hands and was in constant pain. His GP refused to prescribe medication on the grounds that "he wouldn't understand" because he has Downs Syndrome.[222]

• Discriminatory treatment of adults with learning disabilities in access to mainstream services on grounds related to their disability (Articles 2, 3, 8 and 14 EHCR):[223]

The GP refused to refer Andy to a neurologist for further investigations to clarify the diagnosis on the basis that any further investigations might cause Andy distress and that it was unlikely that any treatment would be offered due to his learning disability and associated behavioural issues, which would make it difficult for him to tolerate any surgery.[224]

• Fear and difficulties in making complaints (Article 8 ECHR):[225]

Someone made a complaint about the manager, I got the blame. They excluded me and said things like 'go into your room and eat your breakfast' [226]

137. For many people with learning disabilities, but especially those with more profound or complex needs, challenging behaviour, or communication difficulties, problems accessing appropriate treatment in health care can be exacerbated by the lack of personal support available to them if they are admitted to hospital. Witnesses have told us that confusion over responsibility for continued funding (i.e. whether responsibility lies with the hospital and the PCT or with the local authority), can lead to a person in hospital being denied the support they require in order to meet their needs: for example, understanding basic elements of their treatment; participating in decisions relating to their care; being able to eat and drink without medical complications (where an individual has particular dietary or feeding needs with which they need assistance); or the ability to communicate levels of pain and discomfort to medical staff.[227] Families continue to report that:

[H]ealth professionals ignore their expertise and …unreasonable expectations are placed on them to provide personal care for disabled relatives who are admitted to hospital.[228]

138. We are extremely concerned that adults with learning disabilities undergo degrading experiences in health and residential care settings, which closely mirror the experiences of older people, on which we reported in August 2007. This implies that poor treatment and neglect of some of the most vulnerable people in our society, at the times when they are ill, in need of care and support, and most dependent on others to secure their most basic and fundamental rights, is endemic. Treatment involving abuse, neglect or carelessness of the kind uncovered by the Healthcare Commission and the Commission for Social Care Inspection in Cornwall and Sutton and Merton and by Mencap in Death by Indifference involves serious and severe human rights breaches. The task of securing the dignity and self-respect of this vulnerable group, which is central to the fulfilment of their human rights, is the responsibility of us all. The creation of a more positive human rights culture in service provision is vital to securing respect for adults with learning disability in need of health and social care services.

Abuse, neglect and careless treatment of adults with learning disabilities

139. The Department of Health was "shocked and saddened" to learn of the deaths of the six individuals in Death by Indifference, particularly in light of the disturbing events in Cornwall and at Sutton and Merton.[230] In addition to the announcement of the independent inquiry into healthcare for people with learning disabilities, the Department of Health told us that progress on this issue would be made when Valuing People was updated, in Valuing People Now.[231] The Department explained that further protection would be provided through the reform of the existing vetting and barring procedures for work with vulnerable adults, provided in the Safeguarding Vulnerable Groups Act 2006, and through the introduction of independent mental capacity advocates under the Mental Capacity Act 2005. The Department told us that its framework project with the British Institute of Human Rights, Human Rights in Healthcare - A Framework for Local Action, would "assist frontline organisations to ensure that rights are made a reality."[232]

140. Our witnesses agreed that a number of changes would help ensure that human rights are made a reality. These included empowering people with learning disabilities through promoting greater access to independent advocacy and information about rights; and by providing more training in learning disability, in human rights and in disability equality for professionals and others who work with adults with learning disabilities, with more involvement of people with learning disabilities in the delivery of such training. Witnesses told us that "a firm commitment was needed from government to embed the principles of the [Human Rights] Act in all aspects of public policy" and to promote "better public understanding of the intention behind the Act and its application to public services" (Healthcare Commission).[233]

141. The Cheshire and Wirral Partnership NHS Trust Learning Disabilities Division told us that "further guidance for PCTs" is required "around the rights of people with learning disabilities". It called for investment in compulsory basic training, education and support for those working in primary and secondary care on "learning disabilities, human rights and consent to treatment".[234]

142. We made a series of recommendations on how to meet these concerns, in our Report on the Human Rights of Older People in Healthcare. In the light of the evidence that human rights problems extend beyond older people to a broad range of vulnerable people, we are extremely concerned that the Department of Health has offered few concrete commitments in its response to our previous recommendations on the implementation of a human rights based approach in the NHS.[235]

143. We propose specific recommendations on the Human Rights in Healthcare project, the role of the National Minimum Standards for health and social care; the health and social care inspectorates (and the new merged health and social care regulator, the Care Quality Commission), health inequalities, and access to specialist, primary and acute services, below.

HUMAN RIGHTS IN HEALTHCARE: A HUMAN RIGHTS BASED APPROACH

144. The Committee heard from Mersey Care NHS Trust, one of the NHS organisations taking part in the Human Rights in Healthcare project. This project specifically focuses on in-patient services for people with learning disabilities. Mersey Care explained that they:

have tried to implement human rights since April 2001 across the whole Trust, not just in learning disabilities, because we think that it is a set of values and principles that are quite a powerful lever for change. We have taken the view that service users and carers across the whole of our Trust, including people with learning disabilities have the right to be involved in decisions that affect them, and that is absolutely everything that we do, so that for example, we involve service users and carers across the whole Trust in appointing our staff, giving people the right to say about the people who come into our homes and their lives, and that includes people with learning disabilities.[236]

145. During the pilot, Mersey Care has focused on the development of a questionnaire for people with learning disabilities using in-patient services. This collects the experiences of service users to assess the extent to which their human rights have been respected and protected. They hope that lessons from this project can be applied to Trust strategy and decision making. During 2007, the Trust's Board committed themselves to the development of a "comprehensive human rights strategy". We asked BIHR and Mersey Care to explain how the project would make a difference for people with learning disabilities. Ms Anne Lofthouse, Lead Officer for Service User and Carer Involvement in Learning Disabilities, Mersey Care NHS Trust, told us that the Trust would be using their initial work to develop an action plan. This would be integrated into all of their work with people with learning disabilities.[237] She explained that the Trust would use the principles of fairness, respect, equality, dignity and autonomy ("the FREDA principles") in its work. Ms Sonya Sceats, Policy Officer at BIHR, explained:

I think FREDA is a very nice concept, in a way. It is an attempt to translate into core principles what the Human Rights Act was always designed to achieve but it is the statutory force behind those principles which give service providers, for example, the confidence that assert for example that if someone is not being treated with respect …[238]

It is a very important lever …[239]

146. We are impressed with the commitment of Mersey Care in developing a human rights based approach to their work. This is the kind of institutional respect for human rights for which we have been calling. However, the way in which these pilots are presented implies that embedding human rights is regarded as an exercise in best practice rather than a requirement under the HRA. While we agree that the HRA is an important 'lever for change', care must be taken when using such descriptions to ensure that the legal obligations of the Human Rights Act are not undermined or misunderstood.

147. We asked Mersey Care to tell us how they thought the good practice, developed from the Human Rights in Healthcare project, might be spread more widely. Ms Lindsey Dyer, Director, Service Users and Carers of Mersey Care NHS Trust, called for the rights-based approach Mersey Care is piloting to be mainstreamed within the NHS, preferably as part of a new 'constitution' for the NHS.[240] We welcome confirmation by the Department of Health that an independent evaluator has been appointed for its Human Rights in Healthcare project.[241] It is disappointing that the report of the independent evaluator will not be available until Autumn 2008, which will be almost eight years after the HRA was introduced. Nonetheless, we recommend that the findings of the evaluation are published and disseminated widely within the Department of Health (including to Strategic Health Authorities, PCTs and providers of health and social services) and across Government.

148. Despite our view that the Human Rights in Healthcare project has potential, we are concerned that the Department of Health may see this exercise as a panacea that will lead to a positive culture of respect for dignity and human rights in service provision. In our view, this is only one of a range of initiatives that is needed in order to achieve this aim. We recommend that the Department of Health should use the sixtieth anniversary of the NHS to gain maximum exposure for its positive commitment to ensure that "Human rights are at the centre of the values of the health and social care system in this country".[242] We consider that the adoption of a clear strategy on human rights in policy making by the Department of Health would set a positive example on the type of culture change which will be necessary to ensure that human rights are really at the heart of service delivery.

THE ROLE OF THE HEALTH AND SOCIAL CARE INSPECTORATES

149. The Healthcare Commission told us that it believed that the Human Rights Act has the potential to provide "a cohesive framework for improving the care of people with learning disabilities" and that "the adoption of a human rights based approach would drive significant improvements in care and in the relationships people with learning disabilities have with service providers".[243] Both the Healthcare Commission and the Commission for Social Care Inspection ("CSCI") have told us that the National Minimum Standards for health and social care are key to the protection of the rights of adults with learning disabilities. CSCI told us that: "despite being HRA compliant, the National Minimum Standards do not always capture what matters to most people".[244] The Healthcare Commission told us that one way of promoting a human rights based approach to healthcare, would be to provide more explicit links between the National Minimum Standards for health and social care and the Convention rights protected by the Human Rights Act.[245]

150. We welcome the positive commitment by the Healthcare Commission and CSCI to a human rights based approach to regulation and inspection. We also welcome the commitment of the Healthcare Commission and CSCI to work together to implement the conclusions of the recent Healthcare Commission Audit.[246] We recommend that the Healthcare Commission and CSCI use this process to promote a positive approach to human rights and to the National Minimum Standards by hospitals and care homes.

151. The Health and Social Care Bill proposes to merge the regulatory and inspection systems for health and social care. The Care Quality Commission will assume the responsibilities currently held by the Healthcare Commission and CSCI in 2009. The Government proposes to merge the National Minimum Standards for health and social care, in registration requirements for registered providers of health and social care. It proposes that "human rights will be an important feature in the requirements, and we expect that they will also feature prominently in the regulator's criteria". We will consider these proposals as part of our scrutiny of the Health and Social Care Bill.

ACCESS TO SPECIALIST, PRIMARY AND ACUTE HEALTHCARE SERVICES

152. The findings of the Healthcare Commission Audit describe continuing poor quality service provision and inadequate service commissioning. The Commission concluded, after its widespread audit, that it could not "be sure that the rights of people with learning difficulties are always upheld".[248] The Audit's conclusions confirm the evidence that we have received: throughout the NHS, there are widespread failings in respect of services for adults with learning disabilities. We welcome the early Government commitment in Valuing People Now to use the forthcoming NHS Operating Framework to require Strategic Health Authorities, PCTs and Trusts to deliver action plans to address the shortcomings identified by the Healthcare Commission's audit of learning disability services.[249]

153. The DRC Formal Inquiry Panel on Health Inequalities for people with mental health problems and learning disabilities, reconvened in September 2007 to consider progress on their original recommendations in Equal Treatment: Closing the Gap (which we considered briefly in Chapter 2) and to update their recommendations for further action. Equal Treatment: Closing the Gap - One Year On, concluded that very little action had been taken to implement the Panel's original recommendations. The Formal Inquiry Panel stressed that a clear lead needs to come from the Department of Health on the implementation of the Disability Discrimination Act and the Disability Equality Duty (and that the Government of the Welsh Assembly should play a similar role in Wales):

In a health service that relies increasingly on action by local bodies and in which the Department of Health provides a policy and oversight role, it is all the more important that the Department uses its influence to the fullest. That is particularly so given that so many of the organisations to whom we have directed recommendations appear to have taken no notice of them at all.[250]

154. The Chair of the Panel said:

The term institutional discrimination does not seem too strong to describe what is happening in some quarters.[251]

155. The Department of Health told us that it acknowledged the "barriers described in the investigation" and that it considered the DRC inquiry to be "a major contribution to the thinking around the issues [which] highlights the scale of the problem".[252] In September 2007, the National Task Force on Learning Disabilities concluded that the Government's response to the DRC Inquiry was inadequate and did not give enough detail on how it intended to address the issues raised by that report.[253] The Minister told us that he was planning to take a number of steps to meet the DRC recommendations, but that:

It is really about the Department of Health and the NHS consequently, taking the needs of people with learning disabilities seriously and giving them higher status in the future and, whether you are a GP or a senior manager, knowing that people with learning disabilities require a specific and distinct response and they have the same rights in terms of access to mainstream healthcare as any other citizen, and in terms of provision of specialist services this notion that we have got to move away from the medical model, other than in circumstances where people have an illness or a health condition.[254]

156. We welcome the frank acknowledgement by the Minister for Care Services that more needs to be done to ensure that adults with learning disabilities can access health services on an equal basis. We consider that practical steps must be taken to meet the recommendations of the DRC Formal Inquiry, not only by the Department of Health, but by other public bodies, including Strategic Health Authorities, PCTs, and local authorities. We are disappointed that progress on implementing the recommendations by the DRC Formal Inquiry has been slow. We welcome the commitment in Valuing People Now that work will continue until "nationally led responses to the DRC recommendations are in place". We urge the Department of Health to provide visible national leadership on the recommendations of the DRC Formal Inquiry, by taking steps to assess progress on each recommendation and to provide a detailed strategy and timetable for implementation. We support the recommendation of the DRC Formal Inquiry, that this should take place with much greater urgency. We recommend that the Equality and Human Rights Commission continue the work of the DRC on this issue and monitor progress closely over the next year, with a view to taking enforcement action if no progress is made.

157. We welcome the Department of Health announcement of the independent inquiry into the healthcare of people with learning disabilities. We also welcome the Government's commitment in Valuing People Now to consider seriously the recommendations of that inquiry on hospital and acute care. We welcome the Government's decision to highlight the duties of PCTs and general hospital trusts under the Disability Discrimination Act 1995 (as amended). This includes ensuring that their Disability Equality Schemes address those bodies ability and resources to meet the needs of people with learning disabilities.[255] We regret that such a reminder is necessary.

158. In the light of the evidence gathered in this report, we call on the independent inquiry to adopt a human rights based approach to its work. We trust that it will endorse our call for a positive approach to the implementation of the statutory duties in the Human Rights Act and the Disability Discrimination Act 1995 (as amended). We will follow the progress of this inquiry with interest.

203   e.g. Ev 177 (Mersey Care NHS Trust); Ev 72 (Cheshire and Wirral Partnership Trust); Ev 381. Back

204   Eighteenth Report of Session 2006-07, The Human Rights of Older People in Healthcare, HL Paper 156-I, HC 378-I, paras 11 - 57. Back

205   Ev 234. Back

206   Ibid. Back

207   Ev 138; 212, para 14; 226; See also, the conclusions of the Cornwall Healthcare Commission Report and the Joint Healthcare Commission and CSCI Report on Sutton and Merton. Back

208   Ev 227. Back

209   Ev 212, para 16; 227-28. Back

210   Ev 295, para 7 (iii); 304, part 1, (Leigh Day & Co Solicitors). Back

211   Ev 49, 51, 65, 213, para 16, Ev 381. Back

212   Ev 381. Back

213   Ev 213, para 16; Ev 227, Case Study 4; Ev 381. Back

214   Ev 381, page 2. Back

215   Ev 245, 338, paras 8-9. Back

216   Ev 338, para 9. Back

217   Ev 338, paras 8-9. Back

218   Ev 227, Case Study 7. Back

219   Ev 304. Back

220   Ev 304. Back

221   Ev 49, 327, para 1; Ev 339, para 12. Back

222   Ev 339, Case Study 8. Back

223   Ev 227, 213, 327, 339, paras 10-11; Ev 377, para 1. Back

224   Ev 339, Case Study 5. Back

225   Ev 381. Back

226   Ibid. Back

227   Ev 378. Back

228   Ev 214, para 25. Back

229   Ev 203. Back

230   Ev 97. Back

231   Ev 97. Back

232   Ev 98. Back

233   Ev 83, para 5.2. Back

234   Ev 78. Back

235   First Report of Session 2007-08 Government Response to the Committee's Eighteenth Report of Session 2006-07: the Human Rights of Older People in Healthcare HL Paper 5, HC 72. Back

236   Q 47. Back

237   Q 54. Back

238   Q 59. Back

239   Q 61. Back

240   Q 79. Back

241   Ev 405. Back

242   Ev 96. Back

243   Ev 188, para 5. Back

244   Ev 319, para 12. Back

245   Ev 182-83, para 5. Back

246   Ev 321, para 30. Back

247   Ev 140. Back

248   A Life Like No Other, Executive Summary, Page 5. Back

249   Valuing People Now, 7.2.13. Back

250   Equal Treatment: Closing the Gap - One Year on: Report of the Reconvened Formal Inquiry Panel of the DRCs Formal Investigation into the inequalities in physical health experienced by people with mental health problems and learning disabilities, September 2007, Preface. See also Executive Summary, Pages 6 - 9; Report, Page 17, Page 27. Back

251   Ibid, Preface. Back

252   Ev 97. Back

253   Could do better, The Task Force's report on how much has changed for people with learning disabilities, National Task Force on Learning Disabilities, Annual Report, 2006-07, 10 September 2007. Back

254   Q 162. Back

255   Valuing People Now, para 7.2.9. Back