Overview report

Introduction
Role of the Ombudsman
Relevant policy and good practice guidance
Treating people as individuals
Doing the basics well - an issue of leadership
Complaint handling
Remedy
Conclusions and recommendations

Introduction

In March 2007 Mencap published a report, Death by indifference, which set out case studies relating to six people with learning disabilities. Mencap believe that they died unnecessarily as a result of receiving worse healthcare than people without learning disabilities. Following that publication, Sir Jonathan Michael MB BS FRCP (Lond) FKC, was invited by the then Secretary of State for Health to chair an Independent Inquiry into Access to Healthcare for People with Learning Disabilities. Sir Jonathan’s report, Healthcare for All, published in July 2008, found significant gaps between the law, policy and the delivery of effective services for people with learning disabilities. He made ten recommendations designed to strengthen the systems for assuring the quality of health services at all levels.

Following the publication of Death by indifference, Mencap, on behalf of the six families involved, asked the Health Service and Local Government Ombudsmen to investigate complaints about all six cases, three of which span both health and social care. Summaries of each of the investigation reports are included at the end of this Overview and the full reports of each individual investigation are published as Parts 2 to 7 of the report.

The investigation reports illustrate some significant and distressing failures in service across both health and social care. This is despite extensive policy and guidance published over a number of years concerning the quality and nature of services which should be available to everyone, including people with learning disabilities. It is also despite the expressed commitment of professionals to meeting the needs of individuals. They show the devastating impact of organisational behaviour which does not and apparently cannot adapt to individual needs, or even consistently follow procedures designed to maintain a basic quality of service for everyone. They identify a lack of leadership and a failure to understand the law in relation to disability discrimination and human rights. This led to situations in which people with learning disabilities were treated less favourably than others, resulting in prolonged suffering and inappropriate care.

Taken together, the investigation reports demonstrate an urgent imperative for organisational and cultural change coupled with individual leadership and commitment. Central government and professional organisations have set out clear expectations in policy and guidance for many years. However, our investigations have found clear evidence of instances in which implementation of these basic requirements was at best patchy and at worst entirely lacking. It seems to us unlikely that these are isolated cases and that they are likely to be indicative of a wider problem. In this situation, the overarching questions arising from our work are to ask what action is required, and by whom should it be done, to ensure that, no matter what their situation, everyone receives the care and support they need in a timely and effective way.

We have investigated six cases in which people with learning disabilities have died. In describing them as ‘cases’ we are using a shorthand expression to represent information about them, their families and all their personal circumstances. The use of the term is not intended in any way to diminish their individuality and relationships or the grief and distress of their families at their loss.

The issues range from a complaint about the care provided in a single hospital to complaints about service failures which involve the whole system of health and social care, including the ability of organisations to respond appropriately to complaints. A total of 20 organisations were involved, including 3 councils and 16 NHS bodies. Complaints about the Healthcare Commission’s handling of complaints were made in 5 of the 6 cases.

We did not uphold all of the complaints and it should be noted that complaints were not upheld against many of the public bodies involved. In particular, none of the complaints against GPs were upheld. We did see some examples of good practice.

This does not mean we have always been uncritical of the public bodies concerned. There were a number of examples where health professionals in particular could have been more proactive, acted on the advice and information that was given to them by the families or care staff who knew the person best, or adjusted their practice to better meet the needs of the individuals concerned.

The brief illustrative examples given in this Overview highlight the issues but are no substitute for a thorough reading of each of the investigation reports. Our reports look at the experiences of:

• Mark Cannon aged 30, a smiling and mischievous young man with a fine sense of humour. He enjoyed activities, social events and outings with his family but also liked just lazing around and relaxing. He had a particularly close relationship with his sister.
• Warren Cox aged 30, a happy and contented young man, who was usually quiet but had a great sense of humour and love for everyone. His parents, with whom he lived, described him as very fit.
• Emma Kemp aged 26, described by her mother as a ‘party animal’ who was caring, friendly and sociable and liked dancing, bowling, television and computers. She was lively and active and could understand people who used simple direct language.
• Edward Hughes aged 61, who was a quiet, private man who spent much of his life in care. He had been settled in a care home for some time, where he enjoyed the ordinary routines of daily living.
• Martin Ryan aged 43, described by his family as a charming, strong and energetic man who took time to get to know people but lived happily in his care home.
• Tom Wakefield aged 20, a sociable young man who liked music – particularly Robbie Williams, Blue and Jools Holland. He also enjoyed barbecues and football matches.

All of these people died between 2003 and 2005, in circumstances which Mencap alleged amounted to institutional discrimination. We have undertaken detailed separate investigations into what happened to each one of them. This Overview draws out overarching themes and lessons and makes general recommendations, in addition to the specific recommendations arising from the individual investigations.

We have not upheld all the complaints, but the very nature of our thorough and impartial investigations serves only to heighten the sense of outrage at the treatment received by most of the people involved.

In one case we concluded that the death of the person concerned occurred as a consequence of the service failure and maladministration identified. In another case the Health Service Ombudsman concluded that it was likely the death of the person could have been avoided, had the care and treatment provided not fallen so far below the relevant standard. In two cases, although we upheld complaints of service failure and maladministration, we could not conclude that the person’s death was avoidable. Mencap have asked us to say that, whether the death could have been avoided or not, this should not detract from the unacceptable standard of care and treatment that was experienced in those cases. We agree and have no difficulty in doing so.

In four of the six cases we upheld the complaint that the person concerned was treated less favourably, in some aspects of their care and treatment, and in the services of some of the bodies about which complaints were made, for reasons related to their learning disabilities. We also found in four of the six cases that the public bodies concerned had failed to live up to human rights principles, especially those of dignity and equality.

We believe these outcomes are a shocking indictment of services which profess to value individuals and to personalise services according to individual need.

Role of the Ombudsmen

The Health Service Ombudsman is empowered to carry out independent investigations into complaints made by, or on behalf of, people who have suffered injustice or hardship because of poor treatment or service provided by the NHS. The Local Government Ombudsman has a similar remit in respect of services provided by councils, which include social care. We usually investigate only after the complaint has already been reviewed by the relevant public body and, currently in the case of complaints about NHS bodies, by the Healthcare Commission as well. Our investigations include consideration of the way in which complaints about services have been handled during earlier stages of the process, and the reasonableness of decisions and actions taken in the light of the law and of good practice in existence at the time of the actions concerned.

Both Ombudsmen look thoroughly at all the circumstances surrounding a complaint and try to resolve it in a way which is fair to all concerned. Where the complaint is justified we look to the public bodies involved to provide an appropriate and proportionate remedy for the injustice or hardship suffered by complainants.

Our approach uses the following Principles of Good Administration:

• Getting it right
• Being customer focused
• Being open and accountable
• Acting fairly and proportionately
• Putting things right
• Seeking continuous improvement.

These Principles, and the outcomes which they provide, are of great relevance to the cases under consideration and are reflected in the individual reports for each person. Above all we have been concerned, in recognising that we cannot in these situations put things right, to secure positive remedies for the families concerned, when we have upheld complaints.

In 2007 a Regulatory Reform Order amended our legislation to give new powers to the Ombudsmen to work together more effectively in investigating and reporting on complaints which cross our respective jurisdictions. These new powers have been relevant in three of the six cases we have investigated. It has enabled us to produce joint investigation reports in those three cases and this joint Overview.

Relevant policy and good practice guidance

Each of the individual investigation reports sets out in detail the relevant legal, policy and administrative framework for the NHS, for social care services commissioned or provided by councils in the three reports where this is relevant, and for arrangements for co-operation between the two. The individual reports also describe the relevant standards and guidance, including professional standards, which were in existence between 2003 and 2005, at the time when these deaths occurred.

Of particular relevance to all of these cases is the guidance issued by the Chief Inspector of Social Services in 2001 concerning the provision and planning of services for people with learning disabilities.

HSC 2001/016 and LAC (2001) 23: Valuing People: A New Strategy for Learning Disability for the 21st Century: implementation

This document required councils and primary care trusts to have in place by April 2002 a quality framework to improve service quality amongst all agencies with particular attention to people with complex needs. Its intention was that ‘All public services will treat people with learning disabilities as individuals, with respect for their dignity’. Funding was provided that year to help healthcare providers develop appropriate skills, especially in primary and secondary care. Objectives included:

• ‘2.2 All public services will treat people with learning disabilities as individuals with respect for their dignity and challenge discrimination on all grounds including disability.
• 4.4 Making sure that all agencies work in partnership with carers, recognising that carers themselves have needs which must be met.
• 5.2 Enabling mainstream NHS services, with support from specialist learning disability staff, to meet the general and specialist health needs of people with learning disabilities.
• 5.16 Carers should be treated as full partners by all agencies involved.’ Other documents set out the requirement to assess an individual’s health and social care needs and to draw up plans to meet those needs, to focus on the fundamentals of good nursing care, to benchmark practice in this area, to establish principles of good practice in discharging people from hospital, and to involve individuals and their families at every stage in the planning of care.
  
  In addition to this, both the General Medical Council and the Nursing and Midwifery Council set out professional standards on how doctors and nurses should approach their work. Of particular relevance to most of our investigations are:
• Paragraphs 5 and 36 of the General Medical Council’s Good Medical Practice 2001, which say: 5. ‘The investigation and treatment you provide or arrange must be based on your clinical judgement of patients’ needs and the likely effectiveness of treatment. You must not allow your views about a patient’s lifestyle, culture, beliefs, race, colour, gender, sexuality, disability, age or social or economic status to prejudice the treatment you give. 36. Healthcare is increasingly provided by multi-disciplinary teams. Working in a team does not change your personal accountability for your professional conduct and the care you provide.’ And:
  
• The Nursing and Midwifery Council’s Code of Professional Conduct, published in April 2002, which says:
  • 1 ‘You are personally accountable for your practice. This means that you are answerable for your actions and omissions regardless of advice or directions from another professional.
  • 2.4 You must promote the interests of patients and clients. This includes helping individuals and groups gain access to health and social care, information and support relevant to their needs.
  • 4.1 The team includes the patient or client, the patient or client’s family, informal carers and health and social care professionals in the NHS, voluntary and independent sectors.
  • 4.2 You are expected to work co-operatively within teams … You must communicate effectively and share your knowledge, skills and expertise with other members of the team as required for the benefit of patients and clients.’

None of the above is intended solely for specialists in working with people with learning disabilities. Instead, it sets standards for the quality of services to be provided for everyone. The statements are fundamental to the values of the professions and should underlie the behaviour and actions of individuals at all times. One of the most distressing features of our investigations has been the evidence in some cases that these fundamental principles were not being consistently upheld to the extreme detriment of the individuals concerned.

Treating people as individuals

The Disability Discrimination Act 1995 makes it unlawful for service providers to treat disabled people less favourably than other people for a reason relating to their disability, unless such treatment is justified. It is also unlawful for service providers to fail to make reasonable adjustments for people with disabilities, where the existence of a physical barrier, practice, policy or procedure makes it impossible or unreasonably difficult for a person with a disability to use the service provided, unless such a failure is justified.

Equality for people with disabilities does not mean treating them in the same way as everyone else. Sometimes alternative methods of making services available to them have to be found in order to achieve equality in the outcomes for them. The focus is on those outcomes.

In many of the organisations whose actions we investigated it did not appear that this level of understanding of the need to make reasonable adjustments had become embedded, even at the most senior levels, despite the legislation and the extensive guidance available. Our investigations uncovered a lack of understanding of how to make reasonable adjustments in practice, which suggests there may be a need for further training on the practical implementation of the Disability Discrimination Act 1995.

Valuing People explained that the Government’s intention was that:

‘all public services will treat people with learning disabilities as individuals with respect for their dignity.’

The objective was to:

‘enable people with learning disabilities to access health [and social care] services designed around individual needs, with fast and convenient care delivered to a consistently high standard, and with additional support where necessary.’

The Human Rights Act 1998 came into force in England in October 2000. It was intended to give further effect to the rights and freedoms already guaranteed to UK citizens by the European Convention on Human Rights. It requires public authorities to act in a way which is compatible with the Convention.

Of particular relevance to the delivery by a public authority of health and social care for people with disabilities are the following rights contained in the Convention:

Article 2: The right to life.

Article 3: The prohibition of torture or inhuman or degrading treatment.

Article 14: The prohibition of discrimination.

When the UK Government introduced the Human Rights Act 1998, it said that its intention was to do more than require government and public authorities to comply with the European Convention on Human Rights. It wanted instead to create a new ‘human rights culture’ among public authorities and among the public at large.

A key component of that human rights culture is the observance of the core human rights principles of fairness, respect, equality, dignity and autonomy for all.

Despite the fact that ten years have elapsed since the introduction of the Human Rights Act 1998, our investigation of these complaints demonstrates that an underlying culture which values human rights was not in place in the experience of most of these people. The lack of respect for these principles spread across many organisations. The absence of understanding of individual needs, empathy for the situation in which individuals were placed, and a basic concern for them as people, led to prolonged suffering and inappropriate care. This happened in a context within which professionals pride themselves on caring for others.

In the investigations which we have undertaken we have found several examples of very poor service which have resulted in shocking outcomes for the people concerned. Sir Jonathan Michael’s report, Healthcare for All, highlights the important effect of professional misperceptions, in which illness is overlooked and its symptoms attributed to the disability of the person concerned, despite information from carers to the contrary. We have found evidence of this in some of our investigations. On one occasion it appeared that some professionals were seeking to move someone, whose needs they found difficult to address, out of their service with no regard for the interests of the person concerned.

We were shocked that such events should have occurred and that on these occasions, and possibly on a much wider basis, the policy intentions of government set out in the Human Rights Act 1998, the Disability Discrimination Act 1995 and in Valuing People were frustrated and appear not to have been understood. Or, if understood, they were not regarded as important enough to be put into practice. Taken together, they set out an inspirational culture which underlies everyday practice and places a value on the life of every human being.

While we are concerned here with the experience of a number of people with learning disabilities, we are well aware that there may be other vulnerable groups who are similarly affected and who would equally benefit from a change in culture. Such a change will come about only through strong leadership at all levels in the Department of Health, the NHS and local government. We make recommendations to the organisations concerned designed to focus on the understanding and practical implementation of values stated and restated, over several years, and to the regulators of those bodies to ensure that this time lessons are genuinely learnt and change occurs.

Table 1: Overview of upheld complaints

Doing the basics well – an issue of leadership

The individual investigation reports for each of the people concerned set out the standards of practice to be observed across a range of everyday functions in health and social care. Such guidance is issued on a regular basis and covers matters such as communication, record keeping, partnership working, working with carers, transition and discharge planning, and the use of advocates among others. Some might say there are too many good practice documents to enable them to be assimilated, but they set out a broad and consistent approach which should be familiar to all professionals across health and social care, not just to those who specialise in working with people with disabilities. In fact, the standards in place for normal professional practice across all areas will, if observed consistently, offer many of the safeguards essential to ensuring that the needs of people who are vulnerable for any reason are addressed, and appropriate adjustments made for their care.

Again, on many occasions in the lives of these people, basic policy, standards and guidance were not observed, adjustments were not made, and services were not co-ordinated. There did not appear to be any understanding of the impact that this failure in service was having, nor any empathy for the suffering caused. Above all, what was evident was a lack of leadership. In some situations it appeared that no one had a real grasp of what was happening. No one took responsibility for sorting out organisational difficulties, which were impacting adversely upon standards of care. No one took a proactive approach in owning and resolving problems by making reasonable adjustments and seeking urgent solutions. It is this aspect of the quality of the service they experienced that Mencap described as ‘indifference’, and it is unacceptable.

The poor practice which was evident in many situations across these investigations covered a wide range of day-to-day care and administration and did not always amount to service failure or maladministration. In this Overview we highlight some of the most prominent issues which had significant impacts on the care given to individuals, but this short section is by no means a definitive list of examples. We commend the full investigation reports to readers wishing to gain an understanding of the various complex factors which led to failure to offer good care to very vulnerable individuals. It is this complexity across widely varying situations which itself requires strong leadership to maintain a focus on the experience of and outcomes for people with learning disabilities, particularly when they are unable to communicate their own needs.

• Communication – it is clear that professionals who were not specialists in learning disabilities were not always familiar with legislation and guidance, which had been in existence for some years, and did not have it at the forefront of their minds. This raises questions which were not part of our investigations about how information is disseminated within organisations and the training and support available to assist implementation. However, there is another highly relevant issue concerning the passing of information accurately between professionals, and between professionals and the family, and then acting upon it.

  Mr Ryan himself was unable to communicate his needs. There was evidence that various professionals, including the community team and the speech and language therapists, were very concerned about Mr Ryan and tried to raise their concerns, particularly about nutrition, with the medical and nursing teams. But they could not make themselves heard and nothing happened to help Mr Ryan. Nobody took any action to feed him.

• Partnership working and co-ordination – in some of the cases we have investigated there was clear evidence that professionals were not working together to make use of the skills and expertise of different disciplines in the interests of the individual. The example above concerning Mr Ryan demonstrates this in a multidisciplinary health team but, sadly, this was even more evident on occasions across the boundaries of health and social care. Guidance on transition planning for children moving into adult services, and in discharge planning for those leaving hospitals, is intended to ensure that the needs of individuals at a time of change and risk are fully assessed, resources are appropriately targeted and plans are in place to meet those needs, but in situations in which individuals were at greatest risk this co-ordination and planning was entirely absent. It was not clear that in these complex situations a designated professional had been appointed formally as co-ordinator to ensure effective planning and implementation.

  Tom Wakefield spent much of his early life in a residential school but at the age of 19, when he should have moved to suitable adult accommodation, no appropriate place had been found or commissioned for him. He remained at the school where his behaviour and health deteriorated. There was no proactive planning for Tom’s future needs between the Council and the Primary Care Trust and no formal co-ordinated transition plan.

• Relationships with families and carers – in 2001, as part of the supporting documents for Valuing People, the Department of Health published Family Matters, a report highlighting the perspective of family carers for people with learning disabilities. It acknowledges:
  ‘Families have an important and unique contribution to the discussion of the future direction of services for men and women with learning disabilities. They are the only people who will have a continuous relationship with the person with a learning disability from childhood to adulthood. This contribution needs to be acknowledged, valued, listened to and acted upon.’

However, they also state that: ‘in many services a culture has developed that sees families as a problem and difficult to work with … The reality is that services need to find constructive and positive ways to work with families in the best interest of people with learning disabilities’.

In some of the situations which we considered, the importance of listening to family members, recognising their particular knowledge of the person concerned, and often their ability to communicate and to understand responses, was not acknowledged. Families, and on occasions residential care workers, were not treated as part of the team. Valuable contributions, which only they were able to make, were lost. This led them to feel excluded and ignored and greatly added to their distress.

• Following routine procedures – there are many documents which set out standard good practice and processes, some of which we have quoted in this Overview, which would have improved the experience of and outcomes for these people, and are in fact designed to support the professional management of complex situations. However, it appeared in our investigations that it was in exactly these situations that standards and guidance were not followed, significantly increasing the risk to vulnerable individuals. We have already described the impact for Tom Wakefield of the lack of transition planning, and for Mr Hughes of the lack of a proper discharge plan.
• Quality of management is important in ensuring that routine good practice and established procedures happen on a regular and consistent basis, and in taking ownership and responsibility for the needs of individuals. Part of this management is an understanding of personal accountability in taking a proactive and sustained approach to addressing poor practice, and challenging inadequate systems. We found a few examples of people who had indeed tried to do this but who appeared either to give up easily in the face of an unresponsive system or resistance from others, or had no senior support for their efforts. We have already described how the attempts of the community team and speech and language therapists to raise their concerns about Mr Ryan were not heard.
• Advocacy – a final issue in identifying the basics which need to be done consistently well is notable for its absence in all of our investigations. The strategy set out in Valuing People in 2001 included investment of significant amounts of money in the following years to develop advocacy services to support people with learning disabilities. We have seen no evidence of the use or availability of independent advocates for any of the people involved in these six cases until the stage at which Mencap became involved. While parents and families undoubtedly advocated strongly on behalf of their family members, it is possible that independent advocates might have provided the people concerned and their families with additional support, or even have affected some of the outcomes. We have no way of knowing whether this is the case, but the use of independent advocates could have provided an additional safeguard for the rights of a very vulnerable group of people. We cannot speculate on the reasons why they did not have this opportunity.

We asked ourselves what would change the attitudes and culture which resulted, in these cases, in a failure to follow basic good practice. More guidance will not help since detailed and appropriate guidance has been in existence for many years. Reminders and refreshers for staff across all disciplines, perhaps coupled with the lessons learnt from these investigations, may be helpful, and the implementation of good management processes would also assist. Above all, changes in this area depend on strong leadership, at all levels in organisations, from people who recognise the hallmarks of good quality services in everyday practice and have a real empathy for and understanding of the situations of others – particularly those who cannot easily communicate, and are prepared to challenge consistently the acceptance of poor outcomes. The focus must always be on the best possible outcomes for individuals. Current standards in place for normal professional practice will, if observed, offer many of the safeguards essential to ensuring that the needs of people with learning disabilities are addressed. The investigation reports show that basic standards and guidance in a range of general services, such as care planning, nutrition and pain management, were often not observed and that this disproportionately disadvantaged and discriminated against the people concerned. There is nothing ‘specialist’ about this.

Complaint handling

Most of the complaints which we considered had been reviewed first by the NHS or council complaints systems. The families told us that their experiences of these systems had left them drained and demoralised and with a feeling of hopelessness.

They gave repeated examples of failures to understand their complaints, with little effort made to clarify matters with them, confused and fragmented systems, poor investigations with little rigorous testing of evidence, defensive explanations, a failure to address the heart of the complaint and a reluctance to offer apologies. Our investigations generally confirmed this picture.

Complaints against NHS bodies at the time of these events followed a second stage review process by the Healthcare Commission. The families who asked the Healthcare Commission to review their complaints said they had hoped that the Healthcare Commission’s review would give them the explanations they sought. In practice, they experienced many of the same problems of delay, lack of contact, poor specification of complaints and a lack of clarity about the process that they had experienced at the first stage of the process. Clinical advice was not always appropriately sourced, explanations were inadequate and the families remained unclear as to what had changed as a result of their complaints. Again, our investigations generally confirmed this picture.

For the most part the NHS bodies and the councils concerned, and the Healthcare Commission, have subsequently acknowledged and apologised for the failings in their complaint handling and have provided information on improvements they have made to their services and to their complaint handling arrangements. We have included this information in the individual investigation reports.

Nonetheless, it remains the case that poor complaint handling compounded the distress which resulted from the failures in service experienced by the families of those who died. Even in one case where the complaint of service failure was not upheld, poor complaint handling added to the distress of losing a much loved family member. In most cases, the distress to families could have been reduced by effective investigation and empathetic and timely responses to complaints. These families should not have had to wait so long and fight so hard for the explanations and apologies to which they were entitled.

The White Paper Our Health, Our Care, Our Say, published in January 2006, made a commitment to implement a single comprehensive complaints process across health and social care, focused on resolving complaints locally with a more personal and comprehensive approach.

From 1 April 2009 changes introduced by the Health and Social Care Act 2008 will remove the Healthcare Commission as the second tier complaint handler and the Ombudsmen will provide the second and final tier of the new system across health and adult social care. The changes in the system provide an excellent opportunity for health and social organisations to review their systems and to put in place good arrangements for the future handling of complaints.

Remedy

Our investigations found that in some of the cases there was unremedied injustice which we concluded had resulted from the maladministration and service failure we identified. Table 2 below gives an overview of the injustice we found.

Table 3 gives an overview of the remedies which were provided by the councils and NHS bodies concerned prior to our investigations.

The summary investigation reports which follow detail our findings in relation to the public bodies concerned and set out the remedies we have recommended and secured for the injustice we found. They include apologies and explanations to the families, financial compensation and extensive action plans to ensure that others do not experience similar injustice in future.

Conclusion and recommendations

Many of the issues highlighted by our investigations have been evidenced by previous inquiries, yet people with learning disabilities continue to live with them day by day. We do not extrapolate from these cases to suggest that all health and social care in respect of people with learning disabilities is poor. Nevertheless, the recurrent nature of the complaints across different agencies leads us to the view that understanding of the issues is at best patchy and at worst an indictment of our society.

In writing this Overview we have been motivated by the desire to bring positive change from the experiences of these people and their families, which could in itself provide some redress for all those concerned. We are not looking to ‘make this a priority for 2009’, but to change underlying attitudes and behaviour on a lasting basis. We do not underestimate the challenges involved.

We have made individual recommendations to address the specific unremedied injustice we have found in the cases where we have upheld the complaints (and for the most part these individual recommendations have been accepted by the public bodies concerned).
However, the findings of our investigations pose serious questions about how well equipped the NHS and councils are to plan for and provide services tailored to the needs of people with learning disabilities.

We have thought long and hard about what general recommendations we could properly and usefully make in the light of our investigation findings and the themes and issues we have identified in this Overview. We are Ombudsmen, not regulators and we do not seek to usurp their role. Nonetheless, we are committed to ensuring that the learning from complaints investigated by us is fed back to those responsible for the design and delivery of public services so that they can use that feedback to improve those services.

We see no point in repeating the detailed recommendations of Sir Jonathan Michael’s Independent Inquiry into Access to Healthcare for People with Learning Disabilities, Healthcare for All, although we do not disagree with those recommendations.

We welcome the simplified complaint handling arrangements for health and social care which are being introduced from 1 April 2009 and therefore make no specific recommendations for improvements in the complaint handling system.

We have not found any shortage of policy and good practice guidance on the planning and provision of health and social care services for people with learning disabilities; on making reasonable adjustments in order to comply with the requirements of the Disability Discrimination Act 1995; or on observing the core human rights principles of fairness, respect, equality, dignity and autonomy for all. We have noted the very recent publication by the Department of Health of Valuing People Now: a new three-year strategy for people with learning disabilities. So we make no recommendations for further guidance.

Nonetheless, we are still left with an underlying concern that similar failures to those identified in the investigations will occur again – and indeed may be occurring today in services provided or commissioned by NHS bodies and councils across the country. We believe it is legitimate, in the light of the very serious findings of our investigations, to ask all NHS bodies and councils with social services responsibilities to satisfy themselves that is not the case.

As we have said above, we have concluded that the findings of our investigations pose serious questions about how well equipped the NHS and councils are to plan for and provide services tailored to the needs of people with learning disabilities. This is not a question that we, as Ombudsmen with a very specific remit, can or should answer but it is, we suggest, a question which those responsible for commissioning and providing health and social care services should ask themselves; which those responsible for the regulation of health and social care services should ensure is addressed in their regulatory frameworks and performance monitoring regimes; and about which the Department of Health should properly be concerned. Our recommendations are therefore addressed to the leaders of those bodies.

We recommend:

First, that all NHS and social 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;
  
  and
  
  the capacity and capability of the services they provide and/or commission for their local populations to meet the additional and often complex needs of people with learning disabilities;
  and should report accordingly to those responsible for the governance of those organisations within 12 months of the publication of this report.

Secondly, that those responsible for the regulation of health and social care services (specifically the Care Quality Commission, Monitor and the Equality and Human Rights Commission) should satisfy themselves, individually and jointly, that the approach taken in their regulatory frameworks and performance monitoring regimes provides effective assurance that health and social care organisations are meeting their statutory and regulatory requirements in relation to the provision of services to people with learning disabilities; and that they should report accordingly to their respective Boards within 12 months of the publication of this report.

Thirdly, that the Department of Health should promote and support the implementation of these recommendations, monitor progress against them and publish a progress report within 18 months of the publication of this report.

Ann Abraham
Parliamentary and Health Service Ombudsman

Jerry White
Local Government Ombudsman

March 2009

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