Westminster Hall
Tuesday 15 July 2008
[Mr. Jim Hood in the Chair]
Dementia Care
Motion made, and Question proposed, That the sitting be now adjourned.—[Siobhain McDonagh.]
9.30 am
Mr. Paul Burstow (Sutton and Cheam) (LD): I am grateful for this opportunity to raise a vital topic. My intention in seeking the debate is not to pretend that nothing is being done; quite the contrary—I want to applaud the work that has been going on in the Department, particularly since the National Audit Office published its report on dementia last year. Consultation on the national dementia strategy and the direction of travel that that signals is very welcome. My interest in the issue does not come from personal family experience— I would not wish that on anyone—but from the contact that I have had with families in my constituency who are living, perhaps I should say struggling, with the consequences of dementia. Those contacts have come about through opportunities provided for me by the local carers centre in Sutton and the local branch of the Alzheimer’s Society; they have certainly done much to teach me about the impact of that terrible disease. I hope that the Minister will see today’s debate as part of the consultation on the strategy and an opportunity to build the consensus that is necessary to deliver and sustain the long-term changes needed to make a difference to people with dementia.
I want to raise three issues. First, I want to explore some of the lessons from past reports and initiatives to improve the quality of dementia care. Secondly, I want to raise some concerns about work force planning and research aspects of the emerging strategy. Thirdly, I want to pose some questions, and make some suggestions, about the review of anti-psychotic prescribing announced by the Minister. The Select Committee on Public Accounts produced a report in January that summed up the challenge:
“Dementia affects over 560,000 people in England and costs some £14 billion a year. Parallels can be drawn between attitudes towards dementia now and cancer in the 1950s, when there were few treatments and patients were commonly not told the diagnosis for fear of distress.”
For the UK as a whole, dementia costs £17 billion a year—more than cancer, stroke and heart disease put together—and we are told that in the next 20 years the cost will more than double.
The Public Accounts Committee and National Audit Office reports are not the first reports to turn the spotlight on dementia. There are plenty of reports, if one digs into the subject. Just eight years ago, the Audit Commission published the first of two reports called “Forget Me Not”. Those reports make salutary reading, because the lack of early diagnosis, the patchiness of provision, the need for better management of complexity and the importance of strategy were all set out in their pages. They show a sad truth about this area of public policy and many others—it is particularly so with respect
to the NAO report: often there is nothing new to be said, but what there is to say must be said time and again.
Shortly after the Audit Commission report appeared, the Department of Health published the national service framework for older people. Standard seven in that very welcome document covers older people’s mental health. It states:
“Older people who have mental health problems have access to integrated mental health services, provided by the NHS and councils to ensure effective diagnosis, treatment and support, for them and their carers.”
The NSF was widely welcomed at the time. It was all there: the benefit of early diagnosis; the need to refer to specialist services to confirm diagnosis; best practice advice on dementia care pathways; and the service model. That was in 2001, yet by the time the NAO took a look and published its report in 2007, little had changed substantially. Yes, there were, and are, beacons of good practice around the country; there is no doubt about the fact that some really good, dedicated staff are providing good services and bringing about good outcomes. However, for most of the country, dementia care remains firmly in the dark ages. As the NAO found, less than half of those with dementia receive a diagnosis. Even among those national health service organisations with agreed dementia care pathways, more than half admitted to the NAO that they are not using them.
The draft strategy rightly identifies the need for an integrated approach from diagnosis to end of life. Again, the NSF offered a tool for securing that integration: the single assessment process. Despite a deadline of April 2002 for its introduction, only a minority of NHS organisations are using it. The roll-out appears to have stalled, as it seems that the signals have not been getting through to local decision makers, and that the incentives to change behaviour have been too subtle. The priority that the Minister and the Department of Health have now attached to dementia is essential to achieving the step change that we all want, but if the experience of the past is any indicator for the future it will not be sufficient. It will require national leadership, both political and clinical, so will the Minister take on board the proposal in the NAO report that a national director for dementia services should be appointed to provide national leadership, and that that should be underpinned by networks for dementia, in much the same way as happens for cancer care, to provide clinical leadership at regional level?
Susan Kramer (Richmond Park) (LD): My hon. Friend talks about a lack of progress in dementia care; but is he also aware that in some areas there have, in a sense, been backward steps, particularly where behaviour is very challenging, such as the decision by the South West London and St. George’s Mental Health Trust to get out of providing care to such highly challenging patients through its flagship facility at St. John’s, which is to be closed? There is now a desperate search for an alternative provider of such care, and it has been discovered that there is only one possible bidder in the entire area to provide care for challenging patients.
Mr. Jim Hood (in the Chair): Order. Interventions should be short. I ask the hon. Lady not to speak until the Chairman has recognised her. I did not want to stop her in full flight.
Susan Kramer: I apologise, Mr. Hood.
Mr. Burstow: I think that my hon. Friend has made some important points about how reorganising services can cause people a lot of concern, and how that needs careful handling, particularly in the case of people with dementia and those who care for them. A lack of continuity of care is a great cause for concern.
As for trying to get the signals right, changes to incentives, such as the GPs’ quality and outcomes framework, and national tariffs, are required. The quality and outcomes framework awards just 20 points out of 1,000 to dementia. The new strategy for developing the framework, promised by Lord Darzi in his recent review, will be critical to driving change. Can the Minister suggest when the strategy will be published, and how it will connect with the dementia strategy? It will require clear and enforceable standards, backed up by robust and regular inspection. At present, only 28 per cent. of care home places are registered specialist dementia places, despite the fact that 62 per cent. of places are filled by people with dementia—in some cases the figure is as high as 80 per cent. That surely results in some people being inappropriately placed, and the home failing, because of the want of appropriately trained staff, to provide the level of care required.
Mr. Andrew Smith (Oxford, East) (Lab): I congratulate the hon. Gentleman on securing this important debate in an area in which I know he does a great deal of work. He rightly referred to the quality of placements. Will he also explore the even more prevalent problems that face families who struggle to care for people with dementia? They often have the agonising dilemma of wanting to keep their family member with them and provide them with a familiar place to live, while they become increasingly stressed about providing that support and care. Is not there an equal need for evaluation and monitoring of good practice in that respect, to ensure that PCTs and social services provide appropriate support, to help with the reality that those people grapple with?
Mr. Jim Hood (in the Chair): Order.
Mr. Burstow: Thank you, Mr. Hood. Again, that was a very good point, and I guess that I would respond to it by saying that I hope the Minister will tell us something about the read-across from the national carers strategy to the dementia strategy. That must obviously be tailored to the specific circumstances of families who are coping with dementia. The generic strategy, welcome though it certainly is, needs to be tailored in that way—the right hon. Gentleman is absolutely right.
I was going to say something about the Care Quality Commission which will replace the Commission for Social Care Inspection and the Healthcare Commission. It must ensure that all care homes train their staff in the needs of people with dementia. Indeed, it needs to provide training in other settings too—particularly domiciliary care.
Inspection must be more than a response triggered by specific concerns. It must be seen as part of a continuous improvement process across all standards and should be regular. The CQC should also be required to measure routinely the experience and satisfaction of service users and carers in all settings, not just care homes.
In December 2007, the Department of Health published its operating framework for this year. Among its local priorities was the following:
“The Department will shortly be publishing details of the clinical and economic case for investing in services for early identification and intervention in dementia, which PCTs will want to consider when developing local services.”
That was flagged up as a local priority, not a national requirement or even a national priority. Will the NHS operating framework for 2009-10 elevate dementia to the status of a national requirement, or at least to a national priority? Try as I might, I could not find any sign of the promised business case for investing in services. Has it been published?
Getting the traction necessary across the whole health and social care system requires more than incentivising the Department of Health and the NHS to change their behaviour and practice. It also needs the buy-in of the Department for Communities and Local Government, so that local area agreements, the negotiations between agencies that are involved, and the new comprehensive area assessment process can be employed to lever change.
The consultation document states that the proposed development requires work force growth if the new and improved services are to be delivered. Work force planning is a critical and complex matter. At the diagnosis end, is the Minister confident that enough people with the necessary training will be in place to undertake the necessary assessments? Will there be enough neurologists and geriatricians to deal with the huge increase in the number of referrals for specialist diagnosis? The earlier people are referred, the more critical those specialist services will be in achieving a successful diagnosis.
The NAO report found that community mental health teams have an average of 275 people with dementia on their books, compared with the 1,000 whom the prevalence data suggest have that condition. Many teams lack specialists in dementia. An early diagnosis may be made, but what happens afterwards, particularly to support the family, including those caring and coping at home? Information is critical. Signposting on its own, however, is not enough to support carers in particular. They need expert advocacy to help them to access the support and services that they require, which are different at different stages of the disease. One model that I hope will be considered is portage services, which have been developed in children’s services. I am not suggesting that we equate people with dementia with children. Portage services simply provide a model for standing alongside carers and families to help them to manage the complexities of all the agencies that they must deal with. I hope that that can be considered.
David Taylor (North-West Leicestershire) (Lab/Co-op): I congratulate the hon. Gentleman on securing this debate. On 14 May, I introduced a ten-minute Bill on the management of dementia in care homes. One of its objectives on work force planning and training was to make dementia training, including in the use of anti-psychotics, mandatory for care home staff, as it is not mandatory at the moment. That would be a straightforward and simple step for the Minister to take after the consultation process is complete. Does the hon. Gentleman agree?
Mr. Burstow: I do, and the hon. Gentleman and his colleagues in the all-party group on dementia are to be applauded for their work on the report and the Bill. I hope that it will receive a positive response.
Work force development for care homes, housing and community-based staff are essential, as are support and development for carers. The consultation document suggests that the strategy must be staged over five years to overcome the various work force constraints that I have discussed. Again, if experience teaches us anything, it is that five years is a challenging and ambitious period in which to achieve all that. The same can be said of research. I welcome the intention to hold a summit to consider a planned programme of research. The foundations are in place for a significant increase in research funding, but at present, a quarter of the Department of Health’s £700 million research budget is spent on cancer, compared with just 3 per cent. that is spent on dementia. Total Government spending on dementia research through both the Medical Research Council and the NHS is just £25 million. The UK falls well behind France, Germany, Canada, Australia and the United States of America when it comes to investment in dementia research.
It is not a shortage of good research proposals that is holding us back. The Alzheimer’s Research Trust told me that it rejects two out of three grant applications for want of funds. The summit is welcome, but will the Minister confirm that the Government are willing to commit new money to support more research? The potential is huge. If research resulted in a five-year delay in the onset of dementia, the number of deaths from the disease could be cut in half. Both the work force and research require investment. Has the Minister secured additional resources to implement the strategy, or will any funds allocated later this year come from existing primary care trust and social services allocations? Most of the extra investment needed to make it all happen will fall within the next comprehensive spending review period. I wish him well in winning the arguments for extra investment in dementia care in particular and social care in general.
My final concern is one that I have mentioned in the House over a number of years: the inappropriate and abusive prescribing of anti-psychotic medication. I welcome the decision to conduct an urgent review of prescribing with a view to changing practice, as change is long overdue. Countless learned reports have been written on the subject, guidance was published as part of the NSF in 2001, and the National Institute for Health and Clinical Excellence guidance demonstrates that practical, non-pharmacological alternatives to drugs are available. All those make clear both the benefits and the risks of prescribing anti-psychotics.
The benefits are principally for those who also have psychosis—that accounts for 6 to 10 per cent. of those with dementia—but about 100,000 people are routinely prescribed such drugs to control challenging behaviour. Community mental health teams have a critical part to play in turning that around, but they cover less than a third of those with dementia, and it will take time to grow CMHTs to the point where they have the staff and the competencies to deal with the additional challenges. Above all, the review must map out how to get GPs to change their prescribing practice. Despite all the clinical guidelines and the mounting research evidence of the harm that has been done and is being done by prescribing, GPs carry on prescribing. Securing change is urgent. GPs will be increasingly at risk of prosecution and disciplinary action from the General Medical Council,
as the European Medicines Agency’s committee for medicinal products for human use has referred Risperdal, an anti-psychotic, to its harmonisation processes.
David Taylor: The report “Always a Last Resort” dealt with anti-psychotics in detail. Does the hon. Gentleman agree that although anti-psychotics can have a part to play in controlling distressing symptoms such as aggressive behaviour, they are often used, as we heard from witnesses, to treat behaviour that is neither distressing nor threatening, such as restlessness or being vocal? We can all visit elderly people’s homes and see that happening on a daily basis. That is not an appropriate use of anti-psychotics. Staff and GPs too readily go along with the idea that an anti-psychotic prescription is the best way to respond, when it is in fact the worst way. It shortens lives and increases the risk of stroke.
Mr. Burstow: The hon. Gentleman is absolutely right. The report, to which he put his name, says that such drugs should be a last resort. The problem is that in too many places—we do not know the precise numbers; we know only that it happens in too many places—it is often not a last resort but a first. We need to change that behaviour. That is critical to realising the good intentions behind the strategy.
The European Medicines Agency review to harmonise regulation on Risperdal means that the drug will be licensed in the UK for the treatment of behavioural and psychological disturbance, but in a strictly defined subgroup of people with Alzheimer’s disease. Until now, no anti-psychotic drug has been licensed in this country for the treatment of dementia. EU member states that license such drugs for the treatment of dementia stipulate that their use should be limited to a period of no more than three months.
That will have important implications for prescribing and dementia care in this country. For the first time, clinicians will have a licensed drug that will significantly increase the burden of proof, in the context of the GMC’s guidelines on off-licence prescribing. It will become necessary to justify prescribing other drugs than the one that is licensed. If fewer dementia suffers are routinely prescribed anti-psychotic drugs for periods in excess of three months, it will increase the pressure on families and care providers as dementia patients come off the drugs. Once Risperdal is licensed, NICE should undertake an appraisal to determine its clinical and cost-effectiveness. Indeed I hope that the Government will consider that it would be in the public interest if NICE undertook an appraisal of all the anti-psychotic drugs routinely prescribed to people with dementia.
Another driver for change comes from the USA. In June, the US Food and Drug Administration exercised its powers to require manufacturers of traditional anti-psychotic drugs to make safety-related changes to prescribing information, or labelling, to warn about an increased risk of death associated with the off-licence use of these drugs to treat the behavioural problems associated with dementia. In 2005, it made a similar requirement for atypical anti-psychotic drugs. The pressure from Europe for a licensed drug, together with the review, and pressure from the United States, must make us question what the Medicines and Healthcare products Regulatory Agency could do to ensure that we have good safety information on all anti-psychotic drugs in the UK.
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