Valuing People Now for people with learning disabilities

The question we always return to when discussing Mencap’s Death by Indifference report is this: how did it happen? How did six people receive such poor treatment from the NHS that they died? The Human Rights and Disability Discrimination Acts leave no doubt about how people with a learning disability should be treated, and they make the actions of individual staff in these six tragic events inconceivable.

The guidance is now stronger than ever. The Department of Health’s Valuing People Now strategy has incorporated the lessons of Death by Indifference and Sir Jonathan Michael’s subsequent independent inquiry.

The legislation and policy were always strong, but now they are even stronger and more specific. The challenge is for every member of staff in health and social care to follow the legislation and guidance, and to take responsibility for ensuring that every patient with a learning disability receives the care they have a right to.

Failings in services

The six cases are well reported and the failings in services well documented:

• Martin Ryan was not given aspirin and was not fed for 26 days after his stroke.

• Emma Kemp received no cancer treatment.

• Mark Cannon went eight hours without painkillers despite breaking his femur.

•  Ted Hughes died after a minor operation.

• Tom Wakefield received no treatment and suffered long-term pain despite a consultant recommending further investigation.

• Warren Cox died when his appendix perforated. The family had raised concerns but were told he had a virus.

The investigations by health service ombudsman Ann Abraham uncovered significant failures in health and social care services. The investigations showed the devastating impact of organisational behaviour that does not respond to individual needs or even consistently follow procedures to maintain a basic quality of care for everyone.

The powerful Six Lives report, published by Abraham and the local government ombudsman, reinforces the urgent need for systemic change in the NHS for people with learning disabilities. It supports Sir Jonathan’s Healthcare for All report, and bolsters what has been said about the failure to understand the law in relation to disability discrimination and human rights. It supports Mencap’s view, and the findings of the independent inquiry, that the six deaths described in Death by Indifference were not isolated cases and were likely to be part of a wider problem.

Three recommendations

Sir Jonathan’s report made three recommendations aimed at “changing underlying attitudes on a lasting basis”. NHS and social care have been told to urgently address how they plan and commission services to meet the needs of people with learning disabilities, and particularly people with profound and multiple learning disabilities. They are required to report back in 12 months.

The Care Quality Commission and the NHS foundation trust regulator Monitor are to make sure that their inspection systems will allow them to assess whether health and social care organisations are meeting the needs of people with learning disabilities.

Although Mencap believes that the ombudsmen’s reports are a significant contribution towards the systemic change we have been campaigning for, we also think they have not gone far enough to reinforce the legal obligation of NHS staff to act within disability and human rights legislation. In particular, we are concerned that they have not fully understood the legal requirement to make reasonable adjustments and nor have they properly interpreted the guidance on best-interest decision-making.

In the report, the ombudsmen failed to find a single health or social care professional responsible for their actions. There was a catalogue of failures by individuals, yet not one was named and not one referred by the ombudsmen to their professional board. For example, despite the catalogue of service failures that led to Martin Ryan starving to death in an NHS ward, not one of the professionals, who must have walked by his bed each day and seen him deteriorating in front of them, has been held to account.

Unless professionals are held to account for their actions, health professionals may believe they can get away with treating people with a learning disability in this way. Mencap is also considering, with the families, referring some of the individual health professionals involved to the relevant professional bodies.

Equal value

The Human Rights Act and the Disability Discrimination Act are useful mechanisms for ensuring that health and social care practitioners fulfil their duty to patients with a learning disability. On their own, they are not enough. Services will only be fair when every single person who works in the health and social care system places the same value on people with a learning disability as they do on other patients.

We want every person working in the NHS, from ward nurses to strategic health authority chief executives, to treat this issue as a priority. This means ensuring that all the recommendations from the health ombudsman’s reports and from Sir Jonathan’s independent inquiry are fully implemented and make sure that people with a learning disability receive the care and treatment they have a human right to.

This is Mencap’s challenge, and we will keep fighting until we have succeeded.

Mark Goldring will be speaking at Community Care’s Valuing People Now conference on 18 May. More information below


Find out the latest on policy and practice at our Valuing People Now conference on 18 May in London. The conference is brought to you by Community Care, the Learning Disability Coalition and Community Care Inform.

This article is published in the 9 April issue of Community Care under the heading End healthcare’s disability apartheid

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