Part one: overview and summary investigation reports
Jump to
Relevant policy and good practice guidance
Treating people as individuals
Doing the basics well - an issue of leadership
Conclusion 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.
On behalf of the families involved, Mencap 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 follow this Overview and the full reports of each individual investigation are published as Parts 2 to 7 of this report.
The investigation reports illustrate some significant and distressing failures in service across both health and social care. They show the devastating impact of organisational behaviour which does not 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.
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.
Our reports look at the experiences of:
All of these people died between 2003 and 2005, in circumstances which Mencap alleged amounted to institutional discrimination.
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.
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.
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. 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. 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 is Valuing People: A New Strategy for Learning Disability for the 21st Century (Valuing People) issued in 2001, which requires public services to treat people with learning disabilities as individuals with respect for their dignity. Other general guidance, in particular the professional standards set out by the General Medical Council and the Nursing and Midwifery Council, stresses the importance of looking at the individual, of personal accountability, the interests of patients and the need for co-operative working.
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.
When the UK Government introduced the Human Rights Act 1998 it said that its intention was to create a new ‘human rights culture’. A key aspect of that culture is the observance of the core human rights principles of fairness, respect, equality, dignity and autonomy for all. Our investigation reports demonstrate that an underlying culture which values human rights was not in place in the experience of most of the people involved.
Doing the basics well – an issue of 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 these fields. These standards 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 to their care. On many occasions in the lives of the people concerned, basic policy, standards and guidance were not observed, adjustments were not made, and services were not co-ordinated. There was a lack of leadership and in some situations it appeared that no one had a real grasp of what was happening. The full investigation reports give details of the various complex factors which led to failure to offer good care to individuals in very vulnerable situations. It is this complexity which in itself requires strong leadership to maintain a focus on the experience of and outcomes for people with learning disabilities and, in all probability, many other people with complex needs. The areas of concern included: Communication Partnership working and co-ordination Relationships with families and carers Failure to follow routine procedures Quality of management Advocacy.
Complaint handling
Most of the complaints which we investigated 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.
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. These families should not have had to wait so long and fight so hard for the explanations and apologies to which they were entitled.
From 1 April 2009 changes introduced by the Health and Social Care Act 2008 will implement a single comprehensive complaints process across health and social care, focused on resolving complaints locally with a more personal and comprehensive approach. The Healthcare Commission will be removed 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 care organisations to review their systems and to put in place good arrangements for the future handling of complaints.
Remedy
The unremedied injustice which the Ombudsmen concluded had resulted from the maladministration and service failure identified include:
- An avoidable death and a death which was as likely to have been avoidable.
- Unnecessary distress and suffering for the aggrieved.
- Unnecessary distress and suffering for the families of the aggrieved, in particular about those failings which occurred for disability related reasons.
- Distress at unanswered questions of what difference would have been made if there had been no service failure or maladministration. Would the person concerned have lived longer? Could there have been some improved enjoyment in the last period of their life?
- Distress compounded by poor complaint handling leaving questions unanswered.
- Distress arising from a failure to live up to human rights principles.
The remedies which were provided by the councils and NHS bodies concerned, prior to the Ombudsmen’s investigations, included:
- Senior level personal apology and offer of meetings.
- Offer to involve family in planning services.
- Actions to address failings and to minimise risk of reoccurrence; action plan notified at Board level and to the regulator.
- Commitment to learn lessons from the investigations, and to work openly and collaboratively with local and central bodies.
- Identification of lessons learnt.
The further remedies recommended and secured by the Ombudsmen include:
- Further personal apologies and offers of meetings.
- Public apologies through the published investigation reports.
- Financial compensation for distress ranging from £5,000 to £40,000.
Conclusion and recommendations
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 report 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
Jerrry White
Local Government Ombudsman
