---

Dementia

No, I do not. However, the hon. Gentleman should not take just my word for that—numerous patient groups and clinician groups have made the same point. Indeed, I understand that the NICE dementia guidelines group and its chairman wrote to the appraisal committee, urging it to retain a wider, more generous set of appraisal guidelines for the use of those drugs. However, that seems to have been flatly ignored. The guidelines group, which is still charged with delivering guidelines for the treatment and management of dementia, includes in its membership social workers, patients, carers and health care professionals—in other words, the people who have hands-on, direct experience and can therefore bring a more rounded perspective to such decisions—yet the appraisal group seems to have set that completely to one side. It seems to me to be another weakness in the process that although in NICE the voices of patients are now heard at the table, they are not at the right table and therefore cannot exercise the influence that they should. I hope that the Minister will say a little about that and tell us whether he will look again at whether NICE has adequate arrangements in place to ensure that the patient voice and experience and the carer’s view are adequately taken into account. I want to ask the Minister about another of my concerns about the NICE appraisal. Why has NICE’s appraisal committee not properly considered, as the Department and the Welsh Assembly asked, the cost-effectiveness of the Memantine drug in treating behavioural symptoms of dementia? One of my concerns about the series of changes that will flow from the decision if it is not overturned on appeal is that we will start moving back to old patterns of organising to deal with dementia. I remember that when I was first elected to the House in 1997 the level of diagnosis was relatively low. There was diagnostic denial. People were not diagnosed early enough: why diagnose when there is no treatment to be given? Things have changed. We have seen a whole generation of memory clinics and other services develop to cater for the fact that the drugs exist, and in turn those clinics have led to the development of a host of other services and support arrangements, which are of huge benefit. The concern is that the whole infrastructure is at risk because of the decisions that NICE has made. That is why it is imperative that the Minister should be as clear as he can be today about what the next steps are to address the concerns that many of my constituents and others have about where we find ourselves as a result of NICE’s decision. It is hard to understand how NICE came to the decision, because 30 clinical trials showed the drugs to be effective, offering patients improved memory, the ability to continue to do normal activities, such as washing and eating, and therefore greater independence. That is a key part of the Government’s agenda—a part that I fully support. The benefits extend to carers, who often report being less stressed and happier while their loved ones are being prescribed the drugs. There are four other reasons why NICE’s decision is wrong, three of which relate to clinical practice. First, it contradicts the purpose of treatment, which is to prolong the early stages or to postpone the onset of the later stages of dementia—to lengthen normality, thus increasing the patient’s quality of life. Secondly, the decision directly conflicts with the Government’s policy to promote the independence of people of all ages. Undoubtedly, the restriction on the three drugs will curtail patients’ ability to think and act for themselves, thus reducing their quality of life and independence. The point about quality of life is key. Even the chairman of NICE, Professor Rawlins, in an article in the British Medical Journal in 2004, acknowledged that QALY—the quality adjusted life year—should not be the only basis for making such decisions, yet it appears that that has been the case on this occasion. There is a dearth of quality-of-life data, which need to be taken into account when it comes to such assessments. Will the Minister look carefully at whether NICE has taken on board what its own chairman has said on the record? The third reason why the decision is wrong is that withdrawing access to drugs in the early stages discourages early diagnosis, and the last and perhaps most damaging reason is the ethical conundrum in which it places doctors. Doctors will be forced to wait for their patients to deteriorate before being allowed to prescribe drugs that they know can help. In no other circumstance of which I am aware would doctors be placed in the position of knowing that something that is beneficial could be prescribed, but finding that their hands are tied and that they are told that they cannot prescribe it. One carer says:"““If people could continue to get drugs in the early stages of their disease, the early stages would simply be prolonged. This is better for everyone…mentally, emotionally and physically. Trust me.””" What of later-stage, more severe dementia, when a patient needs treatment most? Did NICE allow Ebixa, a drug that can help a patient when the behavioural symptoms are at their most distressing? No. The only option for doctors will be to fall back on anti-psychotic medication to manage challenging behaviour, in effect placing a chemical straitjacket on seriously ill people. The decision to prohibit Ebixa will not only adversely affect patients, but have huge repercussions for carers. Carers will be placed under increasing strain of the sort that I have described. Will the Minister make clear what he and his Department intend to do next? Will they support the appeal that has now been lodged? At what point does the Minister have to satisfy himself that NICE is properly discharging its statutory duty and accounting to him and, indeed, to the House for the way in which it discharges that duty? I accept that drug treatments are not the be-all and end-all of treatment for Alzheimer’s and dementia. However, drug treatments have been a catalyst for other treatments of the disease. As I said, the development of memory clinics has been accelerated by the availability of drug treatments, and a range of other support services have been provided as a consequence. I hope that the Minister will take this point on board. It might be argued that NICE is saving the NHS money through its decision and that cost-effectiveness is part of its remit. Of course cost-effectiveness is important, but it must be stressed that Alzheimer’s treatments are not expensive. On average, the cost is £2.50 per patient per day, or £800 per patient per year. How can NICE maintain clinical excellence if it is asking doctors to ignore a diagnosis until it is sufficiently bad before a drug can be prescribed? The treatment of dementia has a large impact on the care of people with the disease. Care of people with dementia raises wider questions about care of the elderly in general and the value that we place on carers. I believe that carers have been overlooked by NICE in its decision and the impact on their lives was not really considered by the panel. Carers have the most contact with sufferers of the disease and experience first-hand the benefits of the drugs on their patients. Surely their input and well-being deserved to be given greater weight before the decision was made; it appears as if that was ignored. If better care of dementia is to become a reality, better training is needed for staff, not only in the national health service but in the care sector. That would better serve the needs of sufferers not only of this disease, but of many others. By increasing the understanding of staff of the predicament that their patients are in and the potential problems facing them, perhaps we would address some of the concerns that I shall talk to the Minister about later today, which relate to malnourishment, dehydration and nutrition. Again, those are serious concerns. It is vital to ensure that people get the nutrition that they need. Often, older people find themselves in a vicious circle. Inadequately fed, they become confused. As they become confused, the dementia that they may already have is exacerbated, and because of that, their behaviour may be more challenging, which in turns leads to their being prescribed anti-psychotic drugs. Those anti-psychotics cause them to lose memory and behave more bizarrely as well—and it goes on and on. There is a downward slide to dependency and, ultimately, death. A final point must be made about a potential cure for the disease. We appear to be far away from finding one. That relates to my first point: there simply is not enough funding for research into the disease. We must recognise the impact that dementia will have on our population as its prevalence continues to grow, and use that impact as the impetus to look seriously into curing the disease. I started by referring to the person whose name is used to cover 55 per cent. of all dementias in this country, and to his work, which was very important. I hope that we can reach a point at which treatments are available and research is extended. I hope that the Minister can give us some sense of the direction now, because many people outside the House feel hopeless and powerless as a result of the decisions that NICE has made.