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.
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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