Six lives: the provision of public services to people with learning disabilities Part one: overview and summary investigation reports HC 203-I Six lives: the provision of public services to people with learning disabilities Part one: overview and summary investigation reports Second report Session 2008-2009 Presented to Parliament pursuant to Section 14(4) of the Health Service Commissioners Act 1993 Ordered by The House of Commons to be printed on 23 March 2009 HC 203-I London: The Stationery Office £64.15 Not to be sold separately Part one: overview and summary investigation reports 1 © Crown Copyright 2009 The text in this document (excluding the Royal Arms and other departmental or agency logos) may be reproduced free of charge in any format or medium providing it is reproduced accurately and not used in a misleading context. The material must be acknowledged as Crown copyright and the title of the document specified. Where we have identified any third party copyright material you will need to obtain permission from the copyright holders concerned. For any other use of this material please write to Office of Public Sector Information, Information Policy Team, Kew, Richmond, Surrey TW9 4DU or e-mail: Foreword I am laying this report before Parliament under Parts 2 to 7 are the full reports of the six section 14(4) of the Health Service Commissioners investigations. Act 1993 (as amended). Part 8 is an easy read version of Part 1. The report relates to six investigations which I have conducted as Health Service Ombudsman Note: Unusually, the summary reports and the full for England, three of them jointly with the investigation reports are not fully anonymised. This Local Government Ombudsman, Jerry White, is because some of the names of the complainants in accordance with the powers conferred on us are already in the public domain as a result of by amendments to our legislation due to The Mencap’s earlier report; and because Mencap Regulatory Reform (Collaboration etc. between have confirmed that the families are content to Ombudsmen) Order 2007. be named in the published reports. We have taken into account the public interest and the interest of The complaints were made by Mencap on behalf of the complainants and the other people affected by the families of six people with learning disabilities, our reports and consider that it is necessary in that all of whom died between 2003 and 2005 while in context to include the names of the complainants. NHS or local authority care. Our findings The complaints were made following Mencap’s report, Death by indifference, published in Our investigation reports illustrate some significant March 2007, which led to the setting up of the and distressing failures in service across both Independent Inquiry into Access to Healthcare for health and social care, leading to situations in People with Learning Disabilities by Sir Jonathan which people with learning disabilities experienced Michael MB BS FRCP (Lond) FKC, commissioned by prolonged suffering and inappropriate care. the then Secretary of State for Health. The Inquiry’s report, Healthcare for All, was published in July 2008. Our investigations found maladministration, service failure and unremedied injustice in relation to a The complaints were made against a total of 20 number, but not all, of the NHS bodies and local public bodies. They all concerned the quality of councils involved. In some cases we concluded care which was provided and the majority of them that there had been maladministration and service also included concerns about the way in which failure for disability related reasons. We also found subsequent complaints about the quality of that in some cases that the public bodies concerned care had been handled at local level, and by the had failed to live up to human rights principles, Healthcare Commission. especially those of dignity and equality. The report is in eight Parts (or volumes). Our findings contrast markedly with the first Principle of the recently published NHS Part 1 provides an overview of the work we have Constitution for England and Wales, which says undertaken, identifies the themes and issues that ‘The NHS provides a comprehensive service, arising from our work, and makes some general available to all irrespective of gender, race, recommendations to address those issues. Part 1 disability, age, sexual orientation, religion or belief. also contains a summary of each of the individual It has a duty to each and every individual it serves investigation reports. and must respect their human rights’. Part one: overview and summary investigation reports 3 A similar contrast is evident for social care. Together with my Local Government Ombudsman Independence, Well-being and Choice, published colleague, I am also committed to ensuring that by the Department of Health in March 2005, set the learning from complaints is fed back to those out a vision for adult social care and established responsible for the design and delivery of public a standard for social care which was endorsed by services so that they can use that feedback to the white paper Our Health, Our Care, Our Say improve those services for the future. There in January 2006. It says that ‘[Social care services] is much to learn from the findings of these should treat people with respect and dignity and investigations, and much to improve. I hope that all support them in overcoming barriers to inclusion… NHS bodies and local authorities, together with the They should focus on positive outcomes and relevant regulators and the Department of Health, well-being and work proactively to include the will respond positively to the recommendations in most disadvantaged groups’. this report and demonstrate a willingness to learn from it, and that this might provide some small consolation to the families and carers of those The wider context who died. This report is timely in a number of respects. On 19 January 2009 the Department of Health published Valuing People Now: a new three-year strategy for people with learning disabilities, which reaffirms the commitment to the principles of equality, dignity, rights and inclusion set out in Valuing People: A New Strategy for Learning Ann Abraham Disability for the 21st Century, published by the Parliamentary and Health Service Ombudsman Department of Health in 2001. The strategy places strong emphasis on leadership at all levels through March 2009 the public sector from central government, through regions, to health and local authorities. On 1 April 2009 a new regulator, the Care Quality Commission, comes into being and from April 2010 a new registration system will come into effect for all health and social care providers. Finally, this report is laid before Parliament at a time of imminent change in the complaint handling landscape for both health and social care which will take effect from 1 April 2009. I welcome those changes and the opportunity to remind public bodies of the value of dealing with complaints promptly and effectively and, where complaints are justified, offering appropriate remedies. 4 Six lives: the provision of public services to people with learning disabilities Contents Overview summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Overview report . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15 Introduction. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15 Role of the Ombudsmen . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17 Relevant policy and good practice guidance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18 Treating people as individuals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .20 Doing the basics well – an issue of leadership . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .24 Complaint handling . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .28 Remedy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .29 Conclusion and recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .30 Summary investigation reports . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33 Summary report of a joint investigation by the Health Service Ombudsman and the Local Government Ombudsman of a complaint made by Mencap on behalf of Mr Allan Cannon and Mrs Anne Handley in relation to their late son, Mr Mark Cannon. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35 Summary report of an investigation by the Health Service Ombudsman of a complaint made by Mencap on behalf of Mr and Mrs Cox in relation to their late son, Mr Warren Cox. . . . . . . . . . . . . . . . . . . 41 Summary report of an investigation by the Health Service Ombudsman of a complaint made by Mencap on behalf of Mrs Jane Kemp in relation to her late daughter, Miss Emma Kemp. . . . . . . . . . . . . .45 Summary report of a joint investigation by the Health Service Ombudsman and the Local Government Ombudsman of a complaint made by Mencap on behalf of Mrs Iris Keohane in relation to her late brother, Mr Edward Hughes. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .50 Summary report of an investigation by the Health Service Ombudsman of a complaint made by Mencap on behalf of Mrs Vera Ryan in relation to her late son, Mr Martin Ryan. . . . . . . . . . . . . . . . . . . . . .56 Summary report of a joint investigation by the Health Service Ombudsman and the Local Government Ombudsman of a complaint made by Mencap on behalf of Mr and Mrs Wakefield in relation to their late son, Mr Tom Wakefield. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .62 Part one: overview and summary investigation reports 5 6 Six lives: the provision of public services to people with learning disabilities Overview summary Introduction Our reports look at the experiences of: In March 2007 Mencap published a report, Death • Mark Cannon by indifference, which set out case studies relating • Warren Cox to six people with learning disabilities. Mencap • Emma Kemp believe that they died unnecessarily as a result of • Edward Hughes receiving worse healthcare than people without • Martin Ryan learning disabilities. • Tom Wakefield On behalf of the families involved, Mencap All of these people died between 2003 and 2005, in asked the Health Service and Local Government circumstances which Mencap alleged amounted to Ombudsmen to investigate complaints about all institutional discrimination. six cases, three of which span both health and social care. Summaries of each of the investigation We did not uphold all of the complaints and it reports follow this Overview and the full reports should be noted that complaints were not upheld of each individual investigation are published as against many of the public bodies involved. In Parts 2 to 7 of this report. particular, none of the complaints against GPs were upheld. We did see some examples of good The investigation reports illustrate some significant practice. and distressing failures in service across both health and social care. They show the devastating impact This does not mean we have always been uncritical of organisational behaviour which does not adapt of the public bodies concerned. There were a to individual needs, or even consistently follow number of examples where health professionals in procedures designed to maintain a basic quality particular could have been more proactive, acted of service for everyone. They identify a lack of on the advice and information that was given to leadership and a failure to understand the law in them by the families or care staff who knew the relation to disability discrimination and human person best, or adjusted their practice to better rights. This led to situations in which people with meet the needs of the individuals concerned. learning disabilities were treated less favourably than others, resulting in prolonged suffering and In one case we concluded that the death of the inappropriate care. person concerned occurred as a consequence of the service failure and maladministration identified. The issues range from a complaint about the In another case the Health Service Ombudsman care provided in a single hospital to complaints concluded that it was likely the death of the about service failures which involve the whole person could have been avoided, had the care system of health and social care, including the and treatment provided not fallen so far below ability of organisations to respond appropriately the relevant standard. In two cases, although to complaints. A total of 20 organisations were we upheld complaints of service failure and involved, including 3 councils and 16 NHS bodies. maladministration, we could not conclude that the Complaints about the Healthcare Commission’s person’s death was avoidable. Mencap have asked handling of complaints were made in 5 of us to say that, whether the death could have been the 6 cases. avoided or not, this should not detract from the Part one: overview and summary investigation reports 7 unacceptable standard of care and treatment that Relevant policy and good practice was experienced in those cases. We agree and have guidance no difficulty in doing so. Each of the individual investigation reports In four of the six cases we upheld the complaint sets out in detail the relevant legal, policy and that the person concerned was treated less administrative framework for the NHS, for social favourably, in some aspects of their care and care services commissioned or provided by councils treatment, and in the services of some of the in the three reports where this is relevant, and for bodies about which complaints were made, for arrangements for co-operation between the two. reasons related to their learning disabilities. We also The individual reports also describe the relevant found in four of the six cases that the public bodies standards and guidance, including professional concerned had failed to live up to human rights standards which were in existence between 2003 principles, especially those of dignity and equality. and 2005, at the time when these deaths occurred. Of particular relevance is Valuing People: A New Role of the Ombudsmen Strategy for Learning Disability for the 21st Century (Valuing People) issued in 2001, which The Health Service Ombudsman is empowered requires public services to treat people with to carry out independent investigations into learning disabilities as individuals with respect for complaints made by, or on behalf of, people who their dignity. Other general guidance, in particular have suffered injustice or hardship because of poor the professional standards set out by the General treatment or service provided by the NHS. The Medical Council and the Nursing and Midwifery Local Government Ombudsman has a similar remit Council, stresses the importance of looking at the in respect of services provided by councils, which individual, of personal accountability, the interests include social care. of patients and the need for co-operative working. Both Ombudsmen look thoroughly at all the One of the most distressing features of our circumstances surrounding a complaint and try to investigations has been the evidence in some cases resolve it in a way which is fair to all concerned. that these fundamental principles were not being Where the complaint is justified we look to the consistently upheld, to the extreme detriment of public bodies involved to provide an appropriate the individuals concerned. and proportionate remedy for the injustice or hardship suffered by complainants. Treating people as individuals In 2007 a Regulatory Reform Order amended our legislation to give new powers to the Ombudsmen to The Disability Discrimination Act 1995 makes it work together more effectively in investigating and unlawful for service providers to treat disabled reporting on complaints which cross our respective people less favourably than other people for jurisdictions. These new powers have been relevant a reason relating to their disability, unless such in three of the six cases we have investigated. It has treatment is justified. It is also unlawful for service enabled us to produce joint investigation reports in providers to fail to make reasonable adjustments those three cases and this joint Overview. for people with disabilities, where the existence 8 Six lives: the provision of public services to people with learning disabilities of a physical barrier, practice, policy or procedure these fields. These standards will, if observed makes it impossible or unreasonably difficult for a consistently, offer many of the safeguards essential person with a disability to use the service provided, to ensuring that the needs of people who are unless such a failure is justified. vulnerable for any reason are addressed, and appropriate adjustments made to their care. Equality for people with disabilities does not mean treating them in the same way as everyone else. On many occasions in the lives of the people Sometimes alternative methods of making services concerned, basic policy, standards and guidance available to them have to be found in order to were not observed, adjustments were not made, achieve equality in the outcomes for them. The and services were not co-ordinated. There was focus is on those outcomes. a lack of leadership and in some situations it appeared that no one had a real grasp of what was In many of the organisations whose actions we happening. investigated it did not appear that this level of understanding of the need to make reasonable The full investigation reports give details of the adjustments had become embedded, even at the various complex factors which led to failure to most senior levels, despite the legislation and the offer good care to individuals in very vulnerable extensive guidance available. Our investigations situations. It is this complexity which in itself uncovered a lack of understanding of how to requires strong leadership to maintain a focus on make reasonable adjustments in practice, which the experience of and outcomes for people with suggests there may be a need for further training learning disabilities and, in all probability, many on the practical implementation of the Disability other people with complex needs. Discrimination Act 1995. The areas of concern included: When the UK Government introduced the Human Rights Act 1998 it said that its intention was to • Communication create a new ‘human rights culture’. A key aspect of that culture is the observance of the core human • Partnership working and co-ordination rights principles of fairness, respect, equality, dignity and autonomy for all. Our investigation • Relationships with families and carers reports demonstrate that an underlying culture which values human rights was not in place in the • Failure to follow routine procedures experience of most of the people involved. • Quality of management Doing the basics well – an issue of • Advocacy. leadership Guidance on standards of practice across a range of health and social care functions is regularly issued and sets out a broad and consistent approach which should be familiar to all professionals in Part one: overview and summary investigation reports 9