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The Countess of Mar: My Lords, I am enormously grateful to hear the noble Lord say those words. I know too that thousands of ME sufferers around the country will also be grateful.
While I am on my feet, perhaps I may say that it was my own GP who understood OP poisoning and worked closely with me on that matter. He then pointed me in the direction of ME sufferers who were also not receiving appropriate services.
Lord Hunt of Kings Heath: My Lords, I thank the noble Countess for that. She raises a rather wider question, to which the noble Lord, Lord Clement-Jones, referred, in that very often when people go to their GPs and are diagnosed with an illness, the health service is not as good as it ought to be in referring people to self-help and support groups. One of my great hopes for the new arrangements, particularly through the work of patient advisory liaison services, is that they will ensure that we are much better at
referring people at the first practical moment to the wonderful range of self-help groups that we have in this country.There is no doubt that the working group faced a difficult task. There is widespread uncertainty surrounding this condition. There is controversy, disbelief and disagreement about the best way to treat it. The kind of issues raised by the noble Countess have surrounded the debate over many years.
We have to recognise that real challenges face clinicians who have the responsibility for caring for people with CFS/ME. First, there are no agreed diagnostic criteria. Diagnosis is often made by eliminating other conditions through a series of tests. But there is agreement that overwhelming fatigue is one symptom that characterises CFS/ME. There is continuing debate about which other factors should be taken into account when making the diagnosis.
Secondly, we do not know the cause of CFS/ME, although there are many theories about it. Research has demonstrated endocrine, immune, musculoskeletal and neurological abnormalities and that physical, psychological and other factors are interrelated. No one yet has provided conclusive evidence to support either view and it seems possible that the syndrome represents a spectrum of illnesses.
Thirdly, there is no one form of treatment to suit every patient, but treatment to relieve the wide variety of symptoms which individuals can experience has to be a matter for individual doctors, to be taken in consultation with their patients.
Fourthly, we are aware that there is controversy about some of the approaches used for managing CFS/ME. What we have to do now is to ask all stakeholders to work together and establish what treatment, or combination of treatments, will help patients to get better. I could not agree more with the noble Baroness, Lady Noakes, when she refers to the tone of some of the arguments within the medical profession. There is a challenge for the profession to do what it can to get the debate on to the right constructive lines. We have to remember the impact on patients rather than the niceties of professional argument.
One possible way forward would be to develop clinical learning networks that would allow clinicians and patients to develop expertise in this area. The potential to develop service networks between tertiary and secondary care is an area that we would ask strategic health authorities to explore.
The noble Baroness, Lady Noakes, took us back to the debates that we have been having about the role of strategic health authorities. She will remember that I argued in Committee that the whole point about the size of strategic health authorities is that, by and large, they cover areas containing many care networks, and CFS/ME could well fit into that pattern.
As to the PCT commissioning route, I have confidence in PCT specialised commissioning because, as the noble Baroness said, according to the reports and estimates the number of patients involved will be huge. Surely that must mean it is in the best interests
of GPs to work together collectively to ensure that they have the right approach in terms of referrals and a systematic approach to providing services.
Baroness Noakes: My Lords, given the current lack of understanding among the medical profession of this condition—even in identifying it as an illness—does the Minister still believe that PCTs can undertake effective commissioning of services to deal with CFS/ME?
Lord Hunt of Kings Heath: My Lords, it will be a challenge. No one can pretend that it will be easy. The working group report is the start of the process. I shall come on to the issues of research and the potential referral to NICE, which could provide guidance on development to PCTs.
The noble Countess, Lady Mar, referred to cognitive behaviour therapy and to what has been described as "pacing". The report shows that in certain circumstances particular treatments can be effective. It also shows that no one can be dogmatic or definitive. It is quite clear that a range of therapies are on offer. We need to—and must—ensure that this range of therapies is available and that patients do not feel themselves forced into the position of having to accept only one particular therapy. That seems to be the thrust of the working group's report.
The Countess of Mar: My Lords, one of the problems with these therapies in the past—I hope that it will not happen in the future—is that social security benefit payments are dependent on agreement to do CBT and graded exercises. The treatment of children is dependent upon the parents agreeing to this, even when the child demonstrates that it is getting sicker.
Lord Hunt of Kings Heath: My Lords, I understand those concerns. The noble Countess will know that a copy of the report has been sent to the DWP, which will obviously give it consideration. My understanding is that the DWP recognises CFS, including ME, as potentially debilitating illnesses. The department's chief medical adviser constantly evaluates the latest developments in the understanding of those conditions. I hope that the independent working group report will help to inform the Department of Work and Pensions in the future.
I understand that the application of the assessment to people who have a medical condition that fluctuates or varies in its severity, such as ME, is already addressed in the training and guidance given to medical services doctors who provide advice to decision makers in the field of benefits at the DWP.
This debate raises the issue of research. It is clear from what I have said about the challenges facing clinicians that we agree with the working group that the evidence base is poor. The report states that in relation to pacing, cognitive behaviour therapy and other therapies the research base is poor. We endorse the need for more research on a wide range of aspects
of CFS/ME and we have asked the MRC to develop a broad strategy for advancing biomedical and health services research on CFS/ME.I shall not be able to give specific answers today to all the questions that noble Lords have asked me. The position is that the MRC is currently in the process of appointing an independent scientific advisory group, which will include scientists with expertise in areas such as epidemiology, physiology, immunology, infections, clinical trials and psychological medicine.
I understand the noble Countess's point about not wanting psychiatrists to dominate, but noble Lords will understand that this is a matter for the MRC and that it would be wrong for me to intervene. However, I shall ensure that a copy of Hansard is sent to the MRC in order that it may consider the points raised in this debate.
The scientific advisory group established by the MRC will draw on the working party report and other recent expert reviews. The MRC will also consult with its consumer liaison group members as to the best means by which patient and charity perspectives can be taken into account.
As to resources, the noble Lord, Lord Clement-Jones, asked me about budgets. He will be aware that it is a long-standing and important principle of successive governments that they do not prescribe to the individual research councils the detail of how they should distribute resources between competing priorities. That is a matter best decided by researchers and research users. In view of the debate that we had during the passage of the NHS reform Bill, when the criticism was expressed that the Government seek to intervene too much in organisations such as these, I am sure that the noble Lord will endorse the broad principles that I have enunciated.
Turning to the subject of children, I acknowledge the work of the Times Trust, and I pay tribute to the noble Lord, Lord Clement-Jones, for his work in that area. Of course, children with CFS/ME have special needs. I agree that nearly all children who are severely affected with CFS/ME, and many who are moderately affected, will require special educational support. Clearly, a critical element of the child's management is assessment and the provision for educational needs.
The Department for Education and Skills produced guidance in November 2001 entitled Access to education for children and young people with medical needs. The report makes specific mention of the needs of children with CFS/ME.
That brings me to the extremely difficult and contentious issue of child protection. We have debated the matter and I have had discussions with the noble Countess. I am aware of the concerns regarding child protection issues. I hope that the good practice guidance produced by the Children's Group, which appears in Annex 6 and Annex 7, will result in improved management and understanding of this condition. I am aware that on occasions families of child sufferers have been subject to protection concerns.
The annex makes it clear that, where medical opinion is divided, a further opinion can be obtained from an expert medical practitioner. That goes some way at least to meeting one of the concerns raised by the noble Countess.
She asked me about the particular cases that she raised with me. I can confirm that they are being followed up by the Social Services Inspectorate. My honourable friend Mrs Jacqui Smith, the Minister concerned, will be in a position to reply to the noble Countess shortly on the matter.
At this stage I ought to turn to the issue of professional education, which I agree is of vital importance. I have stated that, because GPs are likely to be facing many patients with this condition, it is clearly in their best interests to ensure that they are up to date. We need to do everything that we can to help them in that regard.
Noble Lords will know that responsibility for the contents, standards, management and delivery of medical education is shared between regulatory bodies. I believe that the Government would find it impractical—going back to our debates on the role of government—to prescribe the exact training that any individual doctor would receive. Equally, we have a responsibility to encourage those authorities to take account of the report of the working group, and we shall do so.
We also expect GPs to keep up their professional skills. The continuing professional development and continuing medical education programmes that we are instituting should help them to do so. I accept that we need to ensure that we give as much help as possible. We shall be seeking to do that in the future, not just for GPs but for other professionals as well.
I agree that in relation to social workers, for instance, we may need to refer the report to the General Social Care Council. It is opportune that my noble friend Lady Pitkeathley is in her place. Clearly, in regard to child protection procedures advice is now coming forward as a result of the special annex on children's services that in areas of medical controversy second medical opinions are available. That is an important matter.
The other important matter to consider—returning to the question raised by the noble Baroness, Lady Noakes—is how we can make improvements in the provision of services. I believe that the publication of the report will help in itself. It will improve the way in which health professionals will feel about service support. It will make them feel more confident about how they should care for these patients.
The report is not a comprehensive clinical guide and has not been developed as such. That is why a referral to the National Institute for Clinical Excellence to provide guidance on management and treatment is currently being considered. Thought also needs to be given to what is the most appropriate clinical tool for helping patients with this condition.
We will also ensure that the external reference groups which will develop the two national service frameworks for children's services and services for adults with long-term conditions will consider the report and its recommendations for improving treatment and care. Given the importance of national service frameworks in terms of setting a consistent pattern of service provision and the knock-on effect that that has in terms of our workforce planning, I believe that this is a way of getting fully established in the service a proper approach to commissioning—in terms of PCT commissioning, in picking up the role of the strategic health authority in performance management and in making sure that specialist services are indeed covered through the NHS; and in picking up such issues as the number of specialists who need to be appointed and the general training of GPs and social workers.
While that will inevitably take a little time, there is much to be said for the approach of the potential referral to NICE. I cannot say now what decision the Government have made. However, alongside a potential for referral, the two national service frameworks—long-term conditions and children's—will be able to pick up these issues more substantively.
I realise that I have exceeded my allotted time, but I believe it important to give as full a response as possible. In relation to the issue of resources mentioned by the noble Baroness, Lady Noakes, I do not agree with her. I am surprised that she should even suggest such a thing. She was really suggesting central earmarking in relation to CFS/ME. That is not the route down which we need to go. This Government are committed to decentralisation. That is why we want 75 per cent of the entire NHS budget to get down to PCTs by 2004. We need to make sure that PCTs have the tools and the information then to make the right judgments about commissioning. In that area, I accept that we need to do more. The working group report has taken us a long way, but we need to do more. The national service frameworks will help. We need to improve education and training. But overall what has been an incredibly difficult subject has been helped enormously by the work of the working group. I am again indebted to the noble Countess for allowing us to discuss these issues.
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