Tag Archives: dementia

End of the chemical cosh long overdue

Finally. Here is a government announcement that is years overdue: the use of anti-psychotic drugs for people with dementia must be cut by two-thirds by November 2011.

After many years of campaigning by carers, patient groups and some in the medical profession, the government has finally taken action – something the previous administration should have done years ago.

Prescribing anti-psychotic drugs to people with dementia who have behavioural problems – also known as the ‘chemical cosh’ – has long been a scandal with health and social care. Newspapers have regularly carried stories on loved parents who have been turned into “zombies” by these drugs, usually administered against the family’s wishes.

What is more surprising to me is that evidence of the harmful effects that these drugs can have on people with dementia – including shortening their lifespan – has been available for some years, yet the practice continued unabated. The simple fact that they are not licensed for long-term use by people with dementia should give a clue here – if they had benefits for the majority of people, then surely there would be recommendations to prescribe them. Seems blindingly obvious, you would think.

While anti-psychotics do benefit a minority of dementia patients – hence why there is not a complete ban – they are often prescribed for their sedative effects on people with dementia with challenging behaviour.

This is where the biggest change needs to come; in the culture of dementia care. There is still an over-reliance on drugs – from GPs and care staff – and this has to be challenged, and this directive will give much-needed focus to it.

But it is no good just cutting out anti-psychotic drug use. What also needs to happen is an increase in training for carers, care home staff etc in dementia and its effects, and in non-drug related treatments and therapies, such as reminiscence therapy, that can help people with dementia.

I know of several dementia care homes that pride themselves on being ‘drug-free’ (within reason) and there is no reason why this shouldn’t be an industry standard. As usual, best practice is out there and it needs to be disseminated better. Good practice needs to be shouted from the rooftops and demonstrated at seminars, conferences and in magazine articles and journals.

Finally, a bit of credit where credit is due: Paul Burstow has made good on the commitment he made while in opposition to tackle the anti-psychotics issue.

Indeed, while the government has come in for heavy criticism for its social care policies and proposals in recent weeks, this is one policy they should be congratulated on. Now it is up to GPs, care home staff and carers to make good on this.

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NHS reform – impact on social care

Andrew Lansley’s much-vaunted white paper on the future of the NHS was published yesterday afternoon, promising widespread reform, including the abolition of PCTs and SHAs and giving commissioning power to GP consortiums. But what will it mean for social care? Here are a few of my initial thoughts.

Firstly, there are concerns that the reforms focus on general services and that people with learning disabilities, mental health problems and dementia have been largely ignored – this came through strongly on Twitter yesterday, from what I saw.

To test this, I did a quick word search of the white paper to gauge how many times certain phrases were mentioned; mental health is mentioned 8 times in the 61-page document, Alzheimers or dementia receives one mention [as @seetheperson pointed out to me], and learning disability – or learning disabilities – never crops up.

To me, this is shocking. Considering that people with learning disabilities, dementia and mental health issues make up a significant chunk of those that use NHS services, the lack of attention given to them is a worrying omission.

Specialist services are often a lifeline or those who use them and an acknowledgement of this – and preferably a commitment to give them at least some degree of protection – would have been reassuring to the many service users who are already distinctly nervous about what government cuts will mean for services.

Hopefully the government is planning for learning disability and mental health services separately…

Also, do GPs, who will now have power over which services are commissioned in their area, have the specialist knowledge that is often required in MH/LD to be able to give an authoritative view on what sorts of services are needed? Mental health charity Mind’s chief executive Paul Farmer has already questioned this and called on them to talk to experts and “tap in to the personal knowledge of patients and mental health charities about what works.” 

There is also cynicism over whether GP commissioning will work from some within the profession. For example, the GP for hire blog gives a distinctly lukewarm reaction to the proposals, saying it will put more pressure on salaried and locum GPs, and could lead to divided interests for those doctors involved on a consortium.

Also, will GP consortiums not exacerbate the postcode lottery, which was supposed to be got rid of? If commissioning a service depends on the decision of the GP consortium – a group of individuals with their own opinions – surely there is the risk that one consortium would approve it, but the one next door would not.

It hardly improves patient choice if they find that their needs are rejected in one area but available in another.

But there were some good points in the white paper. For instance, it talks of promoting the joining-up of health and social care services and promoting preventative action. I can’t argue with that principle – health and social care are closely linked, so that is a no-brainer and could help to reduce duplication of information and bring about efficiencies. Also, preventative action is generally accepted to reduce the need for costlier, more complex services down the line.

The white paper also says that the government’s vision for adult social care will be outlined later this year, and indicate that it will be a continuation of the current personalisation drive towards choice and control for service users. A white paper will follow next year. Nothing new there, but it is good to have the timeline in place.

In conclusion, the government’s reforms are certainly ambitious, but they are also risky. Social policy think-tank Civitas has warned that considerable resources will be needed to enact the restructuring – I’m not sure how that sits with the aim of saving £20 billion by 2014 – and if it is got wrong it could lead to a dip in the NHS’ performance for at least a year.

That will be the acid test of these reforms – will it make services better for service users? I’m sceptical, but only time will tell, as ever with any reforms.

This white paper provides so many points for discussion so it is more than likely that I will blog on aspects of it again later in the week.

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More dementia information and support needed

It is a word that strikes terror into the hearts of many older people: dementia. So it seems surprising that there still seems to be a lack of good-quality information about the condition and how to deal with it, according to a new survey.

Data from YouGov, published to coincide with Dementia Awareness Week, reveals that in a poll of some 2,000 adults without dementia 31% would not know how to get information and support if they received a diagnosis.

At a scary time – YouGov reports that 74% of respondents would feel frightened after being told they have the condition – people need all the information and support they can get in order to get to grips with what the condition is and what it means.

Indeed, anecdotally I have heard about people receiving a dementia diagnosis but getting hardly any support from health services – the only information they found was self-researched on the internet. This may well be an isolated case – there are some very good services out there – but it illustrates the inconsistency of services across the UK.

Ruth Sutherland, acting chief executive of the Alzheimer’s Society, has called directly for things to change. “It is terrible that so many people would not how to get information and support following a diagnosis of dementia. We need better awareness and information so that a diagnosis of dementia is not such a frightening experience.”

Whether that information is through leaflets and factsheets given at diagnosis, better signposting to specialist support such as memory clinics by GPs, TV advertising campaigns about what dementia is or other means, more information could make a stressful time a little less hard to deal with.

Better information could also help to deal with some of the stigma that is still associated with the condition – 10% reported that they would feel ‘ashamed’ to have dementia – which can also hold people back from seeking support once they have been given a diagnosis.

Dementia is not a death sentence and does not stop people living active and full lives – including developing new interests – and this should be at the heart of information given to people, along with practical advice about living with the condition.

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True cost of dementia revealed

If there is one way to make government, and those that hold the purse strings, sit up and take notice of something, it is to put it in financial terms. Especially if the numbers involved are big ones.

So, a figure of £23 billion – the cost of dementia annually in the UK – is bound to have piqued the interest.

This is one of the findings of the Dementia 2010  report from the Alzheimer’s Research Trust, which also reveals that there are 820,000 people in the UK with dementia – a rise of 120,000 on the previously accepted figure.

Usually when these ‘so-and-so costs the UK x each year’ statistics crop up, I take them with a pinch of salt; rarely do you get told how they arrived at their figure, and sometimes you get the feeling they have made it up for dramatic effect.

But in this case, the University of Oxford, which carried out the research, show their working out; adding up the costs of healthcare, social care, unpaid carers and productivity losses, and arriving at a grand total of £27,647 for each person with dementia.

So, with such costs, you would think that research into finding a cure for/preventing dementia would be well funded. Wrong. Dementia research receives £50 million per year, a fraction of the £600 million spent on cancer research, for example, and a drop in the ocean compared to its cost to the economy.

Rebecca Wood, chief executive of the Alzheimer’s Research Trust, has called dementia “the greatest medical challenge of the 21st century.” While that may be slightly hyperbolic, with the number of people with the condition estimated to hit 1 million in the next 15 years, it is certainly an increasing challenge that needs to be tackled.

In financial terms, increasing the research budget is a no-brainer. Even if researchers were to find a drug that just delays or slows the onset – more effectively than those already available – it would save billions.

It is a pretty convincing argument, and one the government should listen to and deliver on. In today’s financial climate, can they afford not to?

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Improving dementia services will take time

When the National Dementia Strategy was launched amid much fanfare last February, the government said that dementia would become a priority and services would be improved. But nearly a year on, the rhetoric hasn’t been backed up by enough action, according to the National Audit Office.

In its interim report on improving dementia services in England the NAO was heavily critical of the implementation of the strategy – or lack of it.

Amyas Morse, head of the NAO, said; “At the moment this strategy lacks the mechanisms needed to bring about large scale improvements and without these mechanisms it is unlikely that the intended and much needed transformation of services will be delivered within the strategy’s 5-year timeframe.”

However, some feel that the NAO has jumped the gun with its criticism. For instance, Martin Green, chief executive of the English Community Care Association, called the report “somewhat premature”. He believes that while there is a lot more to be done to improve services, “the development of the strategy and the achievements so far represent a significant improvement in raising the profile of dementia services and giving some clear direction for the future of care and support.”

Green does have a point; it needs to be recognised that it takes time – especially in local authorities and the NHS – for change to happen. For instance, one of the main aims of the strategy is to give basic training in dementia to every health professional that comes into contact with someone with the condition. It takes time to set a project like that up and then complete it.

It is a 5-year strategy and shouldn’t be judged too harshly yet. But nevertheless the NAO’s report should serve as a kick up the behind for government, local authorities and the NHS to ensure that they do implement measures to improve dementia services or at least start putting the mechanisms in place to do so.

This agenda is evidently not going to be forgotten about, and organisations such as the NAO won’t be afraid to criticise if they see things aren’t going as well as they should be. This should ensure that the Dementia Strategy isn’t quietly swept under the carpet by the bodies involved – possibly tempting given the swingeing public sector funding cuts coming – and do, in time, deliver the standards of services required.

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Continuing care still a grey area

New Year; same old social care news stories. This one from the Daily Mail  tells the story of Phyllis Knight, a lady so badly affected by Alzheimer’s disease that she spent 4 days living with the dead body of her husband before neighbours discovered what had happened, yet has been turned down for NHS Continuing Care funding, which would ensure she gets her care home fees paid for.

Her local PCT decided that Phyllis’ needs are social care related, rather than health care, which means that the local authority assess her eligibility for services. And because Phyllis has assets of more than £23,500, she doesn’t get any state help.

It is a story that has been told many times before and sadly, dementia represents a big grey area in health and social care; the crux is whether people with dementia primarily have social care needs – such as help dressing, washing or cooking – or health care needs, like nursing care.

And it can be tricky to decide this, as people from the NHS have admitted to me. With a physical disability, it can be easier to tell what needs someone has on a day-to-day basis because their condition is (relatively) stable, but someone with dementia often has needs that can vary markedly, depending on what sort of day they are having.

Indeed, in the earlier stages of dementia, it may be social care that the person needs, and only as the condition advances, they need nursing care.

Making a decision to award continuing care or not is also difficult because it is down to a human judgement. No matter how clearly the guidelines are framed, no 2 judgements can be the same.

This issue may get addressed when (if?) the government reforms adult care funding – a White Paper is awaited with baited breath after the consultation closed late last year – with some talk of some health and social care monies being merged together. But this is only conjecture. 

But what won’t happen is the government paying for the care of all people with dementia. With about 700,000 estimated to have some form of dementia in the UK, that bill would be too much for the NHS to take.

So, for the time being, again, the newspapers will have an easy story to file every few months when the next disgruntled family decide to go to the media to complain.

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Dementia care still falling short

Dementia makes the headlines again today, with news that half of all patients with dementia leave hospital in a worse state than they arrive in.

The Alzheimer’s Society says patients with dementia stay longer in hospital than those without the condition and a third have to move into a care home afterwards because they can no longer care for themselves, such has been their deterioration.

It is easy to see why people with dementia decline in hospitals – they can be noisy, disorientating and distressing places and someone with dementia is less able to cope with this than someone without.

And with 80% of nurses admitting in the Alzheimer’s Society’s survey to receiving no or not enough training in dementia, it is easy for the quality of care to vary and, in some cases, patients to not receive appropriate care for their condition – help eating and drinking, for example.

But there are already measures in place to address this; the Dementia Strategy, published in February, had an objective to ensure all health and social care staff who may be involved in caring for people with dementia have training in caring for people with the condition. This would be through basic training and continuous professional and vocational development.

This research highlights how urgently this training needs to be rolled out. With the numbers of people with dementia growing as the population ages, it shouldn’t be delayed.

But (as ever in social and health care, there is a but) it will come down to finances. Training is usually one of the first things to be shelved when cuts need to be made and with budgets already being tightened – and bigger cuts to come in 2010 and 2011 – this could well get quietly put to one side.

If it does, then little will change for people with dementia, and they will continue to cost the NHS millions by staying in hospital for longer and continue to deteriorate more rapidly than they could do. The training needs to happen.

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