Published on 6 Dec 2012

Fair care – or death by indifference?

In 2007, Mencap released its report Death by Indifference, which revealed that people with learning disabilities were suffering and even dying because the laws meant to protect them were being ignored by NHS staff.

They highlighted six people who had been treated appallingly.  It was a shocking report.

That prompted the independent Michael report the following year, which said the NHS was failing to ensure equal access to care to people with learning disabilities.

The following year the health ombudsman upheld the Mencap report, saying that NHS involvement had led to prolonged suffering in the six lives highlighted by the charity.

Then there was Winterbourne and the treatment of people with learning disabilities in what should have been safe environment.  Eleven members of staff were sentenced and a subsequent report revealed a culture of cruelty.

So, it is reasonable to wonder if people with learning disabilities will ever be treated fairly, humanely and equally with others in society?  The health minister, Norman Lamb, who has taken over this portfolio, is adamant that this culture has to change and that this is simply unacceptable.

But even he, in an interview with Channel 4 News, admits that it is hard to change a culture, especially in an institution as vast as the NHS.  It will not, he says, be a case of waving a magic wand.

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And in our film next week, we will be highlighting the death of Nicki Rawlinson, aged 26, at Barnet General Hospital in North London, in February.  Her mother Sue told us of the fight she had over several months to persuade the hospital that something was wrong with her daughter.  When she died she was barely three stone.  Mencap is helping Sue with her case against the hospital and allege discrimination against a person with a learning disability, failure to act in line with the Mental Capacity Act and poor care.

The hospital said in a statement: “On this occasion it is clear that we did not meet the needs of this patient and we would like to apologise unreservedly.”

But Mencap can show that over the past decade 85 people with learning disabilities appear to have suffered and died while in the care of the NHS.  Figures shown to Channel 4 News also reveal that of the 25 accepted for further investigation by the health ombudsman, 20 have been totally or partially upheld.

And these are likely to be an underreporting.  Not all grieving relatives seek the help of Mencap and not all even pursue the case further.  They are just left with the feeling that their loved one’s death could have been prevented but for better care.

The 85 cases show overwhelmingly that the complaints centre around poor communication, lack of basic care and delays in treatment.  That is not to mention failure to recognise pain.

Following the Michael report, the Government set up the confidential inquiry into the premature deaths of people with a learning disability.  We have learned that an interim report has found a rate of 56 per cent unexpected deaths in people with learning disabilities.

These are figures that need further investigation and the full report will be out in March, but it is a worrying halfway result.

There are, of course, hospitals where exemplary systems have been introduced.  St George’s Hopital in south London, has a consultant learning disability nurse, who liaises with all patients and their families and carers when they come into the hospital, often spending hours explaining what is happening to them, what their treatment is, and equally explaining to staff what the patient’s particular needs are.

The patients themselves are given patient passports, which record in detail their history, including their abilities to communicate. There is also a patient liaison panel so those with learning disabilities can have their voice heard.

Other hospitals have similar systems set up but, again, it is patchy. And in some cases, as in Barnet, even having a learning disability nurse did not have the effect intended.

What’s more, a recent survey by the Royal College of Nursing found cuts in the number of these specialist nurses.

On Monday, the Government will release its findings on Winterbourne.  All the signs are that they are taking this issue seriously.  But as Norman Lamb has highlighted, it is going to need a culture change.

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Read more: Mencap volunteer Lloyd Page writes about his experiences

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9 reader comments

  1. Michelle says:

    I have recently began my training as a learning disabilities nurse and social worker. I went on my first placement last week on a surgical ward in a hospital and I got asked time and time again why do I want to be a LD nurse. this article will come under one of the many reasons why. I think it is disgusting in this day and age that vulnerable people are still being treated as lesser beings and for some paying for it with their lives. I was told while at the hospital that they don’t know how to “deal”with people with a learning disability firstly they are a person not a disability and should be afforded the same rights as everyone else.

  2. Chris says:

    Thank heavens for people like Michelle who are entering the social care service as a nurse. There are many good people caring for people who live with disability, they are an inspiration. However, there are also cold, uncaring workers for whom it is just a job and who are indifferent to the needs of vulnerable people who are obliged to put their trust in their carers….they have no choice but to do so. If these people have no family members to monitor their care – they are at the mercy of the daily mood of these unsuitable staff – all carers need strong, perceptive management who are in a position to sack such staff and to ensure they no longer work in the service…ever.

  3. Philip Edwards says:


    Your article demonstrates that indifference in this country runs culture-deep.

    And by “culture” I mean our entire socioeconomic system. For decades now the propaganda message from our neocon rulers has been that the only thing that matters is profit and greed, and that profit or surplus equals efficiency. It is evil nonsense of course – all it equals is more money in THEIR pockets.

    Hence salami slicing of the NHS into privatised elements-for-profit and the creation of NHS trusts on the basis of neocon profiteering. True vocational care doesn’t enter into it. This means the culprits know the price of everything and the social value of nothing. Inevitably this feeds through to those who have to ACTUALLY deliver. When the care system inevitably breaks down it then becomes easy to blame the NHS system and imply (if not directly say) that Gekkoised health is better. In other words, you let it rot and then pick up the pieces.

    As for Norman Lamb, he is part of the tories and the neocon system, as are New Labour and the LibDems. None of them are friends of the NHS. All of them have learned how to mouth platitudes while eviscerating a much-loved and wanted institution. They are liars, every last one of them.

    Small wonder we get this kind of account. People don’t matter, profits and numbers do. And it will get worse until we re-establish our National Health System along the lines of its original intention. Once it goes, we’ll have privatised ambulance crews searching casualties for credit cards and citizens being bankrupted to pay hospital bills. That’s the overall aim. Ignore it at the peril of your children and grandchildren.

  4. Capricorn says:

    @Philip Edwards – well said.
    The entire establishment is based on conning the Vote Bank so they can sit on the Seats of Power (Govt. or Opposition). Health care is based on flip of the coin targets which is rarely met, but numbers cooked up on paper to please themselves and their political masters.

    Does anyone really think the relevant hospital where the poor nurse took the prank call really “supported her”.
    When the Health Care Service Providers are treated shabbily by the “Aristocrats” what does the Nation expect?

  5. Philip Edwards says:


    If you are tempted to think I exaggerate the intentions of neocon politicians toward the NHS – take a look at the attendance of MPs in this afternoon’s debate on funding of the NHS. It speaks for itself.

    And it is that wilful ignorance they depend on to continue their drive toward privatisation.

    1. Lesley says:

      I qualified as an LD Nurse in 1975 and this argument was ongoing then. Why do people always say to me LD is not a nursing profession when evidence decree’s that many many people do not know how to deal with clients with LD. This is a very complex profession so cut us some slack and utilise us, as, we do know what we are doing.


  6. Leila says:

    I would like to point out that people with a learning disability have the same rights as other more able people. The problem lies with other professionals who do not understand how do deal with a person with a learning disability I also like Michelle was asked time and time again why I had become a learning disability nurse. I felt I was looked down upon and I was not a real nurse. Believe me we are highly trained to take in the needs and communication of vulnerable people. The sad point I am trying to make is that people with a learning disability are sometimes looked after by others with a veneer of training while nurses have a three year in depth training behind them. We need more Learning Disability Nurses if we are to understand and support people with a learning disability

  7. Sam says:

    I agree with Michelle’s comment that in this day and age it is disgusting that people with a learning disability are treated as lesser human beings. I work within social care and time and time again I hear about issues and poor experiences of people with a learning disability when they go into hospital and again many nurses/hospital staff not knowing how to support a person with a learning disability. What is required is better education for nurses and hospital staff regarding individuals who have a learning disability and other associated conditions, better partnership working and increased funding when a person is admitted to hospital – for those individuals who do not receive 1:1 funding, it is very difficult to provide staffing to support the person and hospital staff, although we have many dedicated staff who will do so without pay to ensure that the needs of the person are clearly communicated to the nurses and so the individual themselves has someone with them who they are familiar with through what is usually a frightening experience; but we should not have to rely on the good will of staff and this should be a recognised need and funding available – small price to pay when we are talking about someones life!

  8. Jacqui Higgins says:

    Death by disability is becoming more frequent as people with learning and behavioural difficulties face difficult fight in hospital wards and a and e department I would go as far as too say someone will need re-educate in a positive manner the NHL, please let this happen soon. There are parents too scared to send their children and young people into hospital .

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