§ Mr. Tom Clarke (Coatbridge and Chryston)It is somewhat poignant that, following the Government's welcome decision yesterday on beef on the bone, we should today be considering the impact of bovine spongiform encephalopathy on the human food chain, which, alas, will be with us for some time to come. It is in that spirit that I called for today's debate.
My interest in the tragic subject of victims of new variant Creutzfeldt-Jakob disease first arose as a result of the case of my constituent, Donna Marie McGivern. Donna Marie died in September this year aged 17 years. Tragically, she was one of the youngest victims of new variant CJD. Prior to her illness, Donna Marie was a caring, intelligent child with a quiet, easy-going nature. She loved music and was an extremely talented Irish dancer. The living room in her home still displays her trophies for dancing and athletics.
In the summer of 1996, aged just 14 years old, Donna Marie began to complain of double vision. By December of that year, she had developed headaches and pains in her legs. Her personality began to change, with uncharacteristic rages, violent outbursts and other evidence of a brain disorder. Before she died, she received what can be described only as heroic care and support from her parents, Marie and James, who coped in the most trying of circumstances. Our hearts and minds as a community stood still, reflecting our seeming helplessness. I know, too, that the family received invaluable support from David Body at Irwin Mitchell, who has provided help for many families in all the constituencies throughout Great Britain. His efforts are greatly appreciated by my right hon. and hon. Friends.
We now know that the new variant CJD is a new and devastating condition. According to the CJD surveillance unit, the United Kingdom organisation established to look into the many difficult and complex issues surrounding new variant CJD, the virus has an incidence in the country of approximately one case per million of the population in one year. So far, 52 people have died of suspected new variant CJD, of whom 48 have been confirmed as having had that disease. A further five patients are still alive. It is conceivable that there are others as yet unidentified, the families of whom, I regret to say, face a distressing future. Deterioration in the patients' condition means that they display initial problems of balance and slurred speech. Many deteriorate quickly to a point at which they have to rely on a wheelchair, and latterly, are confined to their beds, with all the implications of nursing support that that raises.
Only this week, many of us read in the press about the latest United Kingdom victim—Steven McMurry aged just 17 years, from Glasgow, the constituency of my hon. Friend the Member for Glasgow, Govan (Mr. Sarwar). It was typical of Donna Marie's parents who, having read the article, immediately contacted Steven's family and met them only last night. Steven, too, is displaying all of the horrific symptoms of new variant CJD that I have described. His family are going through 110WH a traumatic time, coming to terms not just with his illness, but with the huge array of care responsibilities. Our thoughts are with them.
§ Mr. Ben Chapman (Wirral, South)Will my right hon. Friend give way?
§ Mr ClarkeI hope that my hon. Friend will forgive me, but I am unable to give way because of pressure of time. I apologise to him.
I wish to draw the attention of hon. Members to the many difficulties that arise from such a situation. The problems of the victims' families, including those of Donna Marie and Steven, cannot be underestimated. Many families face financial difficulties and problems with transport to and from hosptial. They face logistical problems in arranging child care, and managing ordinary activities, such as shopping and housework—with the minimum of sleep—while caring also for their relative. It is, of course, particularly difficult to deal with such practical problems at a time of enormous emotional strain. Again and again, perhaps because much of this situation is relativley new to society, families have to fight for the care that is needed and lack of funding has sometimes prevented them from receiving the best care. Such families often feel that they understand their relatives' needs and the best way in which to care for them, but they have to wait for professional assessments and often have to argue vigorously for help.
Let us take Donna Marie's experience as an example. In May 1997, her parents asked their general practitioner for a wheelchair. He said that there was a waiting list for such equipment, but that he would make an application on her behalf. Eventually a chair had to be borrowed from the Red Cross. Unfortunately, it was too small. Donna Marie's parents then had to obtain one from the local school for children with learning difficulties. However, that chair fell apart because it was wholly unsuitable for people who suffered sporadic movements of their limbs. By the time an appropriate wheelchair was found, Donna Marie's illness was too advanced and she was confined to her bed. It is hard for any of us to appreciate the frustration that that one aspect of her case must have caused.
It is not only the families who have to go through such distress; it is difficult for professionals, too. They need emotional support when looking after patients and their families. The intensity of their involvement means that they are deeply affected by it. They often lack information and find it difficult to manage a condition with which they are unfamiliar. Too often, families are left to cope with such problems themselves, thus compounding matters further. It is difficult to define patients' needs. Professionals, patients and carers all have different perspectives and values when trying to identify needs or even agreeing on a solution.
The fundamental problem for the families of patients, when diagnosis has taken place, is the lack of a coordinated, consistent response to the patients' needs. Even now, 13 years after the first CJD case, there is virtually no consistency of approach by local authorities or community health care services throughout the United Kingdom. The necessary co-ordination simply does not exist. It is clear to all who have had the 111WH misfortune to have had to deal with this deadly virus that the care provision throughout the country, while variable, is uniformly limited. In addition, the support provided by the various bodies that have been set up to offer care and other services to those suffering from new variant CJD is, frankly, wholly inadequate.
The problem can be explained simply. People who know little about the huge range of difficulties are asked to provide informed solutions. Those who know little about the virus, such as local authorities, social services and even GPs, are expected to offer informed care advice. That is not fair on the professionals, nor is it effective when considering that the most important issue of all is the needs of the patient. At one end of the spectrum, there have been several cases in which care support has been incomparably good. In other cases, the absence of effective timely care provision has been a source of bitter grievance, accentuating the grave sense of injustice that is already felt. Because of the broad-based nature of the problem, I believe strongly that a national approach is vital to provide the consistency of provision that is so clearly needed.
The proposal that we should consider—it was recommended by the CJD surveillance unit—involves the establishment of a central fund for sole use by new variant CJD patients and their carers. Those resources could fund a team comprising, for instance, a case manager and a counsellor. It could assess the actual and prospective care needs of the patient, determine the equipment required and suggest alterations that might be needed to make care at home more effective. Crucially, it could also assess the needs of the family and provide support when people have to come to terms with the eventual death of a family member.
We should also bear in mind the possibility that there may be cases in which a person has neither family nor close friends. My hon. Friend the Minister will know that the proposal is a limited-cost project, which is predicted to involve less than £750,000 a year, but it could bring consistency of care to a group of people whose illnesses all hon. Members wish had never happened. I know that my hon. Friend received details of the proposal, and I look forward to hearing his response to the suggestion.
Marie and James, the parents of Donna Marie, had to give up their jobs to look after their child. My hon. Friend the Minister, who will reply with expertise on behalf of the Department of Health, will accept that greater co-ordination is needed between Departments, including the Department of Social Security, the Department of the Environment, Transport and the Regions, the Ministry of Agriculture, Fisheries and Food, the various United Kingdom Assemblies and the European Union. Has any progress been made in the consideration of compensatory payments—subject, of course to the BSE inquiry?
New variant CJD is a fatal disease. In almost every case, diagnosis of the disease is not possible until after the patient has died. As things stand, there is little prospect of any medical treatment emerging in the foreseeable future. What measures have the Government taken to support further research into finding a cure for new variant CJD?
112WH I accept that the pharmaceutical industry has little to gain in this regard, but a contribution to the funds that are used to respond to this dreadful disease would enhance the industry's standing and I appeal to it to make such a contribution.
§ Mr. Ben ChapmanOne of my constituents, who recently lost a loved one to new variant CJD, is particularly concerned about consistency of care. Does my right hon Friend agree that it is important for such care to be given to all victims of CJD throughout the United Kingdom?
§ Mr. ClarkeI am grateful to my hon. Friend who spoke on behalf of one of his constituents and of the many people who are closely following our debate.
If we redouble our research efforts, provide a consistent package of care when and where it is needed, ease the financial worries of those who are involved, respond quickly on a cross-departmental basis and share whatever knowledge there is about this dreadful condition, we would at least be able to claim that progress has been made.
Little Donna Marie McGivern has left us, her potential unfulfilled. If this tragic experience helps to establish a more professional and timely response in similar circumstances, her leaving us, and the passing of so many others, will not have been in vain.
§ The Minister of State, Department of Health (Mr. John Denham)I congratulate my right hon. Friend the Member for Coatbridge and Chryston (Mr. Clarke) on securing this debate on care provision for new variant CJD patients, and on his speech, in which he gave moving descriptions of the life and death of Donna Marie McGivern. Our sympathies go to her family and to the other families who have been affected by the disease.
I must admit at the outset that we still have many lessons to learn about how to deal with this dreadful new disease. It was only as recently as March 1996 that the first cases of variant CJD were confirmed. Since then, 48 people have died from the disease. Each case has brought its own harrowing tale—a story that only the families and carers who have been closely involved can possibly fully appreciate. We know that variant CJD is invariably fatal, and as the course of the disease follows its grim path of neurological deterioration, it brings with it enormous suffering, and not only for the patients. Perhaps the suffering is felt most keenly by those who have the responsibility for looking after their loved ones and at the same time have to watch them go downhill.
Unlike many other serious diseases, there is still no proven validated test available for a living person that would enable variant CJD to be diagnosed with certainty. The Spongifom Encephalopathy Advisory Committee—the independent committee that advises the Government on BSE and CJD issues—said at its September meeting that the need to develop a diagnostic test should be seen as paramount. The Government understand that requirement absolutely. The Department of Health is funding some £3 million a year into vital research.
113WH My right hon. Friend asked a wide question about research. The priority for Government research is treatment. We currently spend about £17 million per annum on research into this related set of diseases. I offer to write to my right hon. Friend setting out the details of the various studies that are covered by that research programme.
Variant CJD, in its early stages, often produces symptoms of anxiety or depression which can mimic the pattern of any number of other psychotic disorders. It is only when the disease moves into its later phase, when profound physical and neurological symptoms reveal themselves, that variant CJD can realistically begin to be seen as a possible suspect. Forty-eight tragic cases is of course 48 too many, but it is still only a tiny proportion of the whole population.
I should like to turn to the needs of variant CJD patients. The course of the disease is unpredictable, which means that needs will not remain static but will change over time. We know that those changes can occur very quickly.
§ Mr. Mohammad Sarwar (Glasgow, Govan)Will the Minister give way?
§ Mr. DenhamI hope that my hon. Friend will forgive me if I do not at this stage. If I have time at the end of the debate I shall give way, but I want to reply to my right hon. Friend's speech.
The fact that changes occur quickly means that the management of the condition needs to be rapid and flexible and to be reviewed frequently. Health care will necessarily be provided by a range of different health care professionals. At different times or in combination, patients will require support from a range of clinicians, including neurologists, psychiatrists, specialist nurses and therapists, including physiotherapists and speech and language therapists. For many patients and families their GP and community team will also provide vital care and support.
The national CJD surveillance unit at Edinburgh, which is funded by the Government—it discovered the first cases of variant CJD—is undertaking important work investigating possible cases. Staff at the unit have worked to develop relationships with other neurologists and clinicians with whom patients are likely to have early contact. Building on their experience of dealing with the disease, they are able to provide advice to clinicians and families. To help the unit to develop its role further, the Government decided to fund the provision of a new care co-ordinator post, and the unit is currently advertising for a suitable candidate.
The NHS services needed by patients with variant CJD are in place across the country. It is essential that the care provided by the different professions is co-ordinated, that it is discussed with the patients and their families and carers and that it is frequently reviewed.
The need for such arrangements is not unique to variant CJD. Other rapidly deteriorating neurological conditions, such as motor neurone disease, also require a speedy and co-ordinated approach to health care. According to the surveillance unit, and taking account of all the difficulties that I have explained, there are 114WH perhaps six patients who are highly suspected of having CJD and about 3,500 sufferers of motor neurone disease. In that context, we have declined the call to establish a central fund specifically for variant CJD sufferers. All those people will need consistent quality services, and we must work to deliver those services to them as we work to deliver services to others in need.
That co-ordination needs to happen in two ways. First, services need to be co-ordinated for individuals, so that patients receive integrated care packages, which may involve health and social care professions. Secondly, health and social services staff need to work together to ensure that their services are planned and delivered in partnership. I acknowledge that there have been regrettable instances when that arrangement has failed. As my right hon. Friend said, those experiences have not been uniformly bad, but we are trying to make things better.
Provisions in the Health Act 1999 will allow the NHS and social services to overcome the barriers to joint working. For example, pooled budgets for individuals could be set up to provide responsive packages of care that can change quickly when needed. Local managers would need to identify when that might be required, agree to pool funds to provide a future care package and agree in advance who should manage the pool budget. However, as my right hon. Friend said, local service providers will need help to deal with the particular difficulties of caring for CJD patients. Because of the present rate of incidence of variant CJD, most people who work in the medical profession will not come across a case during their working lifetimes, so those who need to tackle it will need appropriate support.
As well as the new post at the CJD surveillance unit, the Department is giving its backing to the CJD support network for the case co-ordination initiative, which aims to improve the co-ordination of care for patients suffering from all kinds of CJD. As a result, more cost-effective care should be provided that is effectively tailored to the changing needs of patients and carers.
Last year, the CJD support network, in collaboration with the Association of Directors of Social Services, produced new guidance on best practice for social care workers. The Department is producing complementary guidance on health care, which we aim to publish shortly. That will focus on the role to be played by key workers, whose job will be to ensure that all the needs of patients and carers are regularly assessed and put into place rapidly. My right hon. Friend spoke of the knowledge and experience of the families and carers of sufferers, and I assure him that voluntary groups representing families of sufferers were involved in preparing that document, and we are confident that it will make a difference.
The Department also supports the Human BSE Foundation, an organisation run by the families of variant CJD victims, which aims to help relatives, friends and carers by providing support, information and practical advice.
The debate has emphasised one of the alarming features of variant CJD, which is that it can target young people. As part of our research programme, the British paediatric surveillance unit of the Royal College of Paediatrics and Child Health is working with the Edinburgh CJD surveillance unit and Addenbrooke's 115WH hospital in Cambridge to look into all cases of progressive intellectual and neurological deterioration occurring in children in the UK.
That project, which has been under way since May 1997, has monitored the incidence of such deterioration and, as far as possible, has determined its cause. Further investigation is encouraged in those cases that do not have a readily identifiable cause, so that we can detect those children who may potentially be suffering from any form of CJD. Results of the unit's work were published earlier this year. Of the 489 cases investigated, no positive results were revealed, although one has since turned out to be a suspect case. I mention the study to reassure my right hon. Friend that we are doing what we can to look out for the development of variant CJD in the young.
§ Mr. Tom ClarkeI thank my hon. Friend for giving way. I shall be brief, because I hope that he may have time to give way also to my hon. Friend the Member for Govan. I thank the Minister for his tremendous courtesy in replying to the debate at such length. I also take this opportunity to join him in paying tribute to the CJD surveillance unit at Edinburgh, which serves the whole of the United Kingdom.
§ Mr. DenhamI shall say a little about the organisation for community care—but less than I would like, so that I can give way to my hon. Friend the Member for Govan. However, I shall rest for a moment on the care of the young.
Children and young people often prefer to be at home in familiar surroundings, which means that they must have adequate support from all the local agencies. I have already emphasised that that requires good co-ordination between the various services. In future, care for children and young people with chronic illnesses such as variant CJD is increasingly likely to be provided in a community setting. That will be achieved by outreach teams that will support the parents, use collaborative care pathways that are agreed by primary care and specialist teams, and work with local authority social services and education departments.
116WH The Government's national strategy for carers, published in February, shows that giving support to carers can also help the people whom they care for. A programme of work is under way to implement the strategy throughout the NHS. It includes raising the awareness of carers' issues when planning, delivering and evaluating services, identifying carers and their own health needs in primary care, and providing information that they need on the health status and the medication of the person whom they are caring for.
§ Mr. SarwarA constituent of mine, Steven McCurry, fell over two years ago, when he was 20 years old. He complained of headaches, slurred speech and difficulty in walking, yet it took 18 months for doctors to diagnose the fact that he was suffering from the new variant CJD. Does my hon. Friend agree that, in view of the increased incidence of CJD, a much more co-ordinated approach is needed from local authorities and health workers, which should be backed up by the Government with greater resources that are specifically directed to dealings with that problem?
§ Mr. DenhamI am delighted to have the opportunity to reiterate some of the key points of my response.
First, I recognise the difficulties faced by health professionals owing to the fact that we do not yet have a reliable diagnostic test that can be used on a living person to establish the existence of variant CJD beyond doubt. That is a priority for research. Secondly, services must be properly co-ordinated to cope with the needs of individuals so as to ensure that their changing needs—sometimes rapidly changing needs—are reflected in the change of provision. We seek to achieve that through the various initiatives that I have mentioned, including the forthcoming publication of guidance and the funding of the surveillance unit in Edinburgh and elsewhere. For sufferers of variant CJD and a number of other distressing conditions such as motor neurone disease, the challenge is to co-ordinate existing services. That is the key challenge on which we must work, rather than targeting separate or additional funding.
It being Two o'clock, MR. DEPUTY SPEAKER adjourned the sitting, without Question put.