This week’s BBC Panorama programme What Have The Drugs Done To Dad? has caused more questions than it answered for me, in some ways, and it’s left me with a feeling that we really could do better, if we cared.
The programme began with the statistic that 180,000 people with dementia are being given – as a matter of routine – powerful anti-psychotic drugs which in the majority of cases harm them and may be shortening their lives. It was described as the scandalous abuse of some of the most vulnerable people in our society.
I must add a qualification here: some people are content that their relative with dementia is being prescribed anti-psychotics, both in residential care and in their own home. It is not my purpose to deny them the right for that to be seen as appropriate in their own circumstances. But the programme’s purpose was to look at the inappropriate over-medication of people in care, and the over-prescribing of anti-psychotic meds that were never designed or legally licensed for dementia.
Paul Burstow, Minister for Care Services, used the words ‘shocking’, and ‘unacceptable’, stating that these drugs kill people, cutting their lives short once they have already reduced the quality of their lives. I have no reason to doubt Professor Sube Banerjee’s assertion that the drugs are being used much too often and much too freely. If their use is beneficial in only one-fifth of cases, it’s serious cause for concern.
I have no personal family experience of the use of such powerful anti-psychotics for people with dementia, but I do have personal family experience of powerful drugs being prescribed for my own relative with dementia, and with a few other physical problems that were causing pain and distress.
Like Cheryl Byrne and Glynne Thompson who appeared in the Panorama programme, I too noticed a dramatic decline in the general well-being of my relative – even though I had no idea then what had been prescribed. Within a matter of weeks, all conversation stopped; there was a huge change in awareness and sociability; posture went from upright to stooped; the ability to engage with anything at all was non-existent; agitation; insomnia; disinhibited behaviour; and the remains of what once was a definite joie de vivre went right out of the window.
My request, in the mental health assessment unit, to be allowed to know which medications my own relative was being given, was met with verbal abuse by the deputy in charge of the ward. No matter how much I explained that I was shocked to see such a huge decline in such a very short space of time, the brick wall of refusal came my way. She refused to give me any information at all, even though I was listed as one of only two close relatives still alive and caring about a very vulnerable elderly person with dementia.
It was only after the death of my relative that I discovered – when I obtained a copy of the medical records – that a doctor had written into those notes “this is a massive amount of NSAIDs and anti-depressants for a frail elderly person”. They had prescribed an opioid drug to control the pain and the patient. Then, the anti-depressant was introduced to someone who had no history of depression at all – it was prescribed as a way of controlling the manifestation of ever increasing physical pain, discomfort and distress. It made it easier for the staff in the mental health unit to manage – they could then manage to huddle round and watch TV, rather than needing to interact with their patients.
Neither the opioid drug nor the anti-depressant controlled the pain. Did they control the patient sufficiently in the best interests of the nursing/care staff? Did they contribute to a sudden death?
After watching Panorama, I looked around for more information about the use of anti-psychotics to control, to quieten, to make manageable those vulnerable elderly people with dementia and living in care homes. What did I find? This from the Alzheimer’s Society dated 3 December 2007, which was when Panorama last looked at the abuse of elderly people in residential care homes by over-medicating them.
Neil Hunt, then Chief Executive of the Alzheimer’s Society, said:
“Today is D-Day for dangerous drug prescribing. Sedating a person with dementia should be a last resort but too often doctors are turning to the medicine cabinet without considering the alternatives. Today Panorama is shining a light on the widespread drug abuse of people with dementia, which has been hidden away for too long. The first parliamentary inquiry into the practice is also an important step to uncovering the true scale of the problem, and we look forward to its findings.
Over 100,000 people are being prescribed these drug treatments that leave people with dementia in a zombie like state, robbed of their quality of life. Research shows that anti-psychotics have minimal benefit and drastically increase the risk of death and stroke. It is absurd that we are wasting millions of pounds prescribing these drugs when this money would be much better spent training health professionals in dementia care.
Dementia isn’t only about memory loss; more than half of all people with dementia experience behavioural symptoms as part of their condition.”
But I can’t find a statement from the Alzheimer’s Society commenting on this more recent Panorama programme.
Three years on from 2007, when the Alzheimer’s Society called for an end to the widespread drug abuse of people with dementia after the 2007 BBC Panorama programme, we are now promised that within another year, by November 2011, the use of anti-psychotics prescribed to people with dementia will be reduced by two thirds.
Why should it take so long? How many more people will have died before action is taken?
And finally, for anyone with an interest in the shocking statistics of medication abuse of vulnerable elderly people in need of care, click here for a read of this document from 31 March 2008, which also bears the name of Paul Burstow, then in Opposition and MP for Sutton and Cheam:
Keep Taking the Medicine 4 The scandal of the inappropriate medication of older people in care
Had it appeared just one day later, it would have appeared on 1 April.
No excuse for lack of action is acceptable, said Paul Burstow in Opposition. He’s been arguing his point since 2001, and probably before that. He was lonely in the House of Commons then – nobody listened to him, championing in debate the cause of vulnerable elderly people. Now that he’s in Government and Minister for Care Services, he says that he stands by that statement, it is now his mantra, and he nodded when told that he would be held to account in the future.
Please widen the scope of your concern, Mr Burstow. Look at the abusive over-medication of elderly people, especially those with dementia and in care, in its entirety. In fact, widen the scope of your concern to the abuse of elderly people with dementia in care. Full stop!
Nobody listens to us either, so you should know how we feel.
Let’s hope that you are not Home Alone now, and that people listen and act.