Paul Burstow MP writes: Let’s end this silent scandal

1,800 people with dementia are dying every year having been prescribed anti-psychotic drugs, and I am determined to end this silent scandal.

For more than a decade I have been campaigning to reduce the number of people whose lives are cut short thanks to the routine long-term prescribing of drugs by GPs. These drugs have sedative effects which makes it easier to ‘manage’ dementia patients. But they are effectively a chemical cosh which have side effects and can have devastating consequences.

Last year, as minister for care services, I set an ambitious target to reduce the number of patients routinely given anti-psychotic drugs by two-thirds by the end of this month (November). We won’t see how close we are to meeting that target until next summer, but the initial signs are not encouraging. As a result I am looking at the further steps needed to make sure that anti-psychotics are always the last resort for people with dementia.

So if we are a long way off hitting the target then I will take whatever steps are necessary to make sure far fewer anti-psychotics are prescribed in the first place.

I want to ensure that prescribers are complying with provisions of the Mental Capacity Act. For people with dementia the Mental Capacity Act’s main use has been to allow healthcare professionals or family members to admit someone who needs treatment to a care home or hospital when it meets their best interests.

The Mental Capacity Act also requires anybody prescribing antipsychotic to someone who lacks capacity to have regard to their best interests. When this happens it has to be clear that the person in question cannot make a decision about care for themselves – and so it’s crucial we establish these legal safeguards are being applied before someone is treated without their consent.

In the meantime work by the Dementia Action Alliance that I launched in June should start to have an impact. By next March the 180,000 people with dementia who are receiving anti-psychotics should have had a clinical review.

And why does this matter? I recently heard the story of a man with dementia who was a resident in a home in Medway. He’d been prescribed anti-psychotics for many years. Following a review by a pharmacist working at Medway primary care trust, he was taken off them.

A couple of weeks later, the care home phoned the pharmacist to tell her that, that morning, the gentleman had looked at himself in the mirror and announced that he was looking scruffy and needed a shave. It was the first time he’d shaved himself for years.

Dementia is one of the biggest and most heart-breaking challenges we face, so in our General Election Manifesto the Liberal Democrats pledged to prioritise dementia research.

In Coalition government we have already announced that the National Institute for Health Research will provide an extra £18 million of funding over five years from next April. This money will be used to establish new biomedical research units focused on world-class translational research in dementia.

We also revealed that the Medical Research Council would increase its funding on research on neurodegeneration from £34 million to £37.5 million per annum.

In short I am determined to uphold our promise to improve the care received by dementia patients across the country and boost research too. In doing so we can champion some of the most vulnerable in our society.

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5 Comments

  • As a researcher working in the field of neurodegeneration I would like to point out that this statement

    Dementia is one of the biggest and most heart-breaking challenges we face, so in our General Election manifesto the Liberal Democrats pledged to prioritise dementia research.

    In Coalition government we have already announced that the National Institute for Health Research will provide an extra £18 million of funding over five years from next April. This money will be used to establish new biomedical research units focused on world-class research.

    We also revealed that the Medical Research Council would increase its funding on research on neurodegeneration from £34 million to £37.5 million per annum.

    is profoundly misleading. There is a real term decline in research funding under Coaltion policy.

    As an aside, I did this post earlier this year which provides links to the evidence base on the costs of dementia and how much people are prepared to pay.
    http://gimpyblog.posterous.com/ignoring-the-burden-of-dementia

  • Ruth Bright 3rd Nov '11 - 4:05pm

    I don’t doubt Paul’s consistent commitment to this Cinderella area of social care but the problem is that under funding and under staffing are part of the picture that make the over-use of medication inevitable.

    I have worked on a 24 resident dementia unit providing activity therapy/ one-to-one reminiscence work. I was only hit once by a resident, but the for the (four) staff providing hands-on care it was a regular occurrence. If used very carefully these drugs can be useful for the rarer cases where people are suffering from frightening hallucinations.

    This is a bit like Gordon Brown’s ordering a deep clean of all hospital wards – it might sound good and it might score political points but the clinical situation is far more complex

  • Diane Smith 3rd Nov '11 - 5:39pm

    There are times when these drugs are necessary. My father was admitted to a specialist (and secure) residential unit when after a number of years of decline at home he had started hitting my mother. He continued to be violent and abusive over the coming months, assaulting care staff. We, the family, begged the care home to give my father back some dignity by reducing his aggression, even if this meant effectively ‘coshing’ him. They reluctantly complied with our wishes, but we no longer had to fear what we would hear on our next visit. We were lucky in that he died (of other long term problems) only 6 months after going in to the home.

  • “For more than a decade I have been campaigning to reduce the number of people whose lives are cut short thanks to the routine long-term prescribing of drugs by GPs.”

    What is the implication here? That the use of anti-psychotics decreases the life expectancy of people with dementia? Or is “cut short” being used in a metaphorical sense?

  • Ruth Bright 5th Nov '11 - 10:57am

    I know it’s rare to receive ministerial answers on LDV but I wonder if Paul Burstow could clarify the statistics here.

    As Diane has posted so vividly and bravely there is a role for these drugs.

    1,800 people might die every year having been prescribed anti-psychotics but sadly many of these people will have been at the end of their lives anyway, it does not mean that that the drugs caused many of those deaths. In fact the drugs may well have given individuals respite from fear and hallucinations in their dying days. I have witnessed people experiencing these hallucinations and it is desperately difficult to comfort them.

    Most people with dementia don’t get hallucinations and most should not be given anti-psychotics. But there are about 100,000 people with Lewy Body Dementia (a dementia where hallucinations are a big problem) in the UK and I understand that about half of them can benefit from drugs like Seroquel without significant side-effects. I wonder how useful an emotive term like “chemical cosh” really is in this context and I wonder how many of the 1,800 deaths Paul Burstow is talking about were people with Lewy body dementia.

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