HC Deb 23 January 1992 vol 202 cc601-8

Motion made, and Question proposed, That this House do now adjourn.—[Mr. Patnick.]

10.24 pm
Mr. Tony Speller (Devon, North)

I start by quoting from my maiden speech nearly 13 years ago: I should like to start my career in this House by paying a deep and sincere tribute to my predecessor, Mr. Jer Thorpe. As a constituency Member, he was without equal, and there is no doubt of the respect and affection in which he was and is still held in our constituency."—[Official Report, 22 May 1979; Vol. 967, c. 941.] Mr. Thorpe is now ill with Parkinson's disease, a fact known and regretted throughout north Devon and further. This debate in public is about Parkinson's disease and a particular experimental treatment. It is also about the health service treatment of Mr. Thorpe, since it was his doctors who approached me, and his wish, not mine, which has put the matter into the public domain.

The Parkinson's Diseases Society has been in touch with me, and I am grateful to its chief executive, Mrs. Mary Baker, both for information and for helping me understand the problems. She advises me that the treatment involves the implant of brain cells from an aborted foetus which must be 10 to 11 weeks' gestation.

The Litchdon medical centre is a practice of eight doctors in Barnstaple. All eight doctors signed a letter on 13 December to the Secretary of State for Health and asked me to pass it on. They copied the letter to the hon. Member for Livingston (Mr. Cook) and to the right hon. Member for Yeovil (Mr. Ashdown), and also to the North Devon community health council.

I must read the letter, written by Dr. Beer on behalf of the practice, because it is the crux and the purpose of the debates: The Right Hon. Jeremy Thorpe recently underwent a new and innovative neurosurgical operation carried out by Professor Hitchcock, Consultant Neurosurgeon at the Midland Centre for Neurosurgery and Neurology, Nottingham, as a National Health Service patient. Mr. Thorpe was originally referred to Professor Hitchcock by his London neurologist. Professor Hitchcock agreed that neurosurgery could he beneficial. He was told that there was a waiting list and that he must be referred by his General Practitioner, as a National Health Service patient, in order that the local Health Authority provide the necessary funding, as the operation is only available on the N.H.S. Mr. Thorpe then approached me, his General Practitioner here in Barnstaple and asked to be referred to Professor Hitchcock. I contacted the North Devon District Health Authority and asked for an extra-contractual referral to be made for this operation. This request was turned down because of the cost and the fact that the present 30 per cent. success rate of this operation did not represent 'value for money'. Mr. Thorpe then contacted the Health Authority himself and pleaded his case to no avail. Because Mr. Thorpe resides for part of the time in London, he decided to try another Health Authority. He registered with a G.P. near his London home who contacted his District Health Authority who readily agreed to finance his brain operation as an extra contractual referral, and surgery was carried out within a short space of time. Mr. Thorpe is the 47th patient to receive this form of new treatment and he tells us that his medical condition has dramatically improved. In the new document—The Patients' Charter—there are listed seven existing rights; the first of which states: 'Every citizen has the right to receive health care .on the basis of clinical need regardless of the ability to pay'. The fact that one Health Authority felt unable to fund this operation and yet another Health Authority felt able to provide the necessary monies does call into question whether the Patients' Charter does actually work. The Midland Centre for Neurosurgery and Neurology is the only centre in the United Kingdom able to provide such a pioneering operation which is only available through the N.H.S. If Mr. Thorpe had not been in a fortunate position of being able to register with a G.P. in a different Health Authority, he would not have had his operation. This situation has enormous implications for all patients who require an extra contractual referral based on clinical need. We look forward to your reply. That letter was signed by Dr. Richard Beer and the other seven doctors in the practice.

I forwarded the letter to my right hon. Friend and informed Dr. Beer that that had been done. In addition, I asked the practice about the change of GP, since few of my constituents have the advantage of choice about which authority they use. Being unaware of the details within the North Devon health authority, and seeking in no way to make critical judgments myself, I obtained a copy of the minute of the health authority. It reads: The director of medical services … drew members' attention to a recent article in the British Medical Journal which highlighted that, out of 18 clients treated, the 22.2 per cent. success rate related only to those clients under the age of 50 years. The members re-emphasised the decision, taken at a previous meeting, not to pay for this treatment. The committee made a judgment, based on the recommendation of its director. The Secretary of State replied: In the case Dr. Beer refers to, the treatment involved is a relatively new and largely unproven one. A recent British Medical Journal article indicated that in a survey of eighteen patients treated in this way only four"— that is the 22.2 per cent.— showed any significant improvement. My right hon. Friend then said: I understand that in this instance Dr. Beer's request was considered at some length by an assessment panel of six which included the District Chair, Chief Executive and District Director of Public Health. The decision was I am told based on clinical grounds because of the unproven nature of the treatment. District Health Authorities have a difficult task in deciding priorities for treatment within available resources. I would not expect these decisions to be uniform across the country because of different local circumstances and the likelihood of different clinical views on the efficacy of particular treatment. The North Devon HA took clinical advice in assessing this individual case and on the basis of that advice decided that this ECR was not a high priority for funding. I would not see this however in any way abrogating General Practitioner's basic rights of referral. My right hon. Friend ends his letter by saying: I am pleased to learn that following the granting of an ECR by Parkside HA Mr. Thorpe has received treatment and that it is proving beneficial. Shortly afterwards, I received another letter from the practice, dated 20 January. As time is short, I shall just make the four points referred to in the letter. The practice reiterated its concern about having the freedom to refer patients according to clinical need. The practice pointed out that the criteria upon which Mr. Thorpe's referral was turned down are invalid and says: The NHS changes must not be allowed to stymie new medical treatments, otherwise", it asks, how can pioneering work and advances take place? An initial success rate of 4 out of 18 patients is a rate of almost 25 per cent. and this, for a new treatment in the most difficult cases, would be very acceptable. The practice is also concerned that the standard of care may depend on which area a person lives in and what money is available. The fourth point is: Why should a Health Authority turn down an unproven treatment when it holds contracts with Homeopathic Hospitals and is prepared to pay for such treatment to be carried out? The letter concludes: We feel that this situation would not have arisen if ERCs were not included in health authority budgets. We would recommend that these should be taken out of such budgets. Apart from the issues that affect Mr. Thorpe personally, questions are raised by this form of treatment that affect any national health service patient who is similarly afflicted. I have four questions for my hon. Friend the Minister. First, is this treatment, when successful, likely to reduce the effects of the disease, or does it have only a palliative effect, in that side effects are avoided from powerful drugs that would otherwise have to be used?

Secondly, is this treatment acceptable under medical ethics? We are talking about the brain tissue of an aborted foetus whose gestation period has to be between 10 and 11 weeks. There is the possibility of pressure being brought to bear to produce an aborted foetus at that stage for the treatment. I do not pretend to know what the ethics committee would say about that. Does my hon. Friend hope that it may be a valuable treatment, to be made available, if finally proven, to sufferers of Parkinson's disease throughout the health service?

Thirdly, if the treatment is available currently, upon clinical decision, under the national health service, should it not be available to patients in north Devon as readily as it is available to patients in London?

Fourthly, extra-contractual referrals are clearly at the discretion of the health authority concerned, but surely clinical decision must be the main criterion. While this treatment remains at the experimental stage, may I suggest that the logical position is that prospective patients who have been referred onward by the general practitioner and consultant should be selected—probably by Professor Hitchcock himself—and financed centrally as part of the experimental budget? It is unreasonable that local health authorities should have to compare routine needs—for hernia operations, or knee and hip joint operations—with the problems surrounding experimental surgery, of which they must have no direct knowledge.

Sufferers from Parkinson's disease are many, and their problems are hateful and hurtful. I now know that they are not automatically exempt from prescription charges, and I draw my hon. Friend the Minister's attention to the recommendation of the Parkinson's Disease Society of the United Kingdom, which I support, that sufferers should be exempt from prescription charges.

My constituents remember the dashing figure of Jeremy Thorpe. I take no pleasure in bringing this case before the House, although his example may well prove a catalyst to bring help to fellow sufferers.

The patients charter is a bold commitment from a strong Prime Minister who believes, as I do, in a one-class, first-class health service. I receive no complaints of substance about the excellent health service in north Devon; nor do I believe that it has exceeded its authority in any way. But the nagging thought remains—why "Yes" in London, but "No" in Devon if the patient and the clinical advice were the same?

10.35 pm
The Parliamentary Under-Secretary of State for Health (Mr. Stephen Dorrell)

My hon. Friend the Member for Devon, North (Mr. Speller) began by drawing attention to the fact that he has always been generous in his praise of the constituency record of Jeremy Thorpe. Although neither my hon. Friend nor I were Members of the House when Mr. Thorpe was a Member, we both remember that, as my hon. Friend said, he was a "dashing figure" in the politics of the 1970s. As my hon. Friend rightly said, Parkinson's disease is a distressing condition, and it will be a cause of sadness to all hon. Members that Mr. Thorpe has come to suffer from it. I do not believe that the House would expect me to comment on Mr. Thorpe's particular case, beyond expressing the sympathy of the House for his condition. The health service takes seriously the issues of confidentiality which surround the treatment of its patients, and it would be wrong for me to discuss in the House the details of Mr. Thorpe's individual treatment.

As my hon. Friend rightly said, however, the handling of Mr. Thorpe's case raises some important general principles about the management of the health service. I am grateful for this opportunity to clarify any uncertainty that may have resulted from this case, the specific circumstances which lay behind it and the way in which it had to be decided. I refer especially to the fact that Mr. Thorpe had access to two general practitioners and thus to two separate decision-making processes, which arrived at different conclusions.

I begin by repeating the point that my right hon. Friend the Secretary of State made in a letter to my hon. Friend the Member for Devon, North on 14 January, that in an organisation the size of the health service, which deals with so many patient contacts, it should not be surprising—indeed, it should be welcomed—that we do not seek to impose total uniformity on every single decision that is made about the treatment of patients across the country. To attempt to do so, even if it were possible——

Mr. James Wallace (Orkney and shetland)

rose—

Mr. Dorrell

If I may, I should like to develop my argument because there are several aspects to it.

I firmly believe that it would be impossible to deliver that objective, even had we wanted it. But even if it were possible, it would be actively undesirable to seek to impose precise uniformity in relation to every decision taken about the treatment of health service patients, because that would mean that no individual within the health service could try a different approach without first having had it cleared through a myriad of different committees. We seek to establish in the health service a system of decision-making which allows different people to reach different conclusions subject to some basic principles which clearly must underlie the delivery of socialised medicine. Provided that they are consistent with the basic principles set out, as my hon. Friend rightly said, in among other places, the patients charter, the fact that different decisions may be reached in different parts of the country is not surprising. Indeed, one of the benefits or desirable aspects of the health service is that different clinicians and managers can try out different alternative approaches.

The fact that we recognise that different people in the health service will produce different answers to the same questions is manifest in the fact that different health authorities will reach different conclusions, based on their assessment of the health needs of their resident populations and of their local priorities.. They will also reach conclusions about the allocation of resources and their priority in terms of the use of resources to address the specific health needs of their local populations.

Health authorities will reach those conclusions under the reformed health service in close consultation with their general practitioners. The intention is that the decisions that health authorities take about the placing of contracts should reflect the views of GPs and also the health authority's assessment of the district's local health priorities. However, once the health authority has placed those contracts in those terms, we come to the questions which determine the decisions about the honouring of extra-contractual referrals. That is the issue which lies at the heart of Mr. Thorpe's case.

The Secretary of State has asked me specifically to clarify the principles which underlie the administration of ECRs within the reformed health service. When speaking to the council of the Royal College of General Practitioners on 9 May last year he said: We have consistently repeated the principle that the reforms should not cut across GPs' freedom of referral. That remains the case. If, for clinical reasons, a GP wishes to refer a patient to a hospital that is not contracted to provide a service to the GP's district, the GP must be able to do so. That is a direct quotation from a speech made by my right hon. Friend. The Government regard themselves as bound by that principle, and we expect to see it carried out by the management of the health service. As that is the political sphere given to the health service—it is a public service accountable through my right hon. Friend the Secretary of State to the House—the management of the health service has set out clearly how that principle should be applied to the management of ECRs.

Paragraph 3.14 of the management document, "Contracts for Health Service Operational Principles", states: The DHA will not challenge the GP's choice of provider unless it can be shown that the proposed referral is wholly unjustified on clinical grounds, or where an alternative referral would be equally efficacious for the patient, taking into account the patient's wishes. So the test that has to be applied before a health authority refuses an ECR is that the decision must be "wholly unjustifiable on clinical grounds". The fact that that is the test does not detract from the fact that the health authority remains responsible for the management of the ECR budget. I disagree with my hon. Friend's constituents on this point. Once the authority has accepted that an individual ECR is not wholly unjustifiable on clinical grounds, it remains a management responsibility of the health authority to balance the clinical priority of acceptance of a particular ECR against its budgetary considerations. The budgetary responsibility rests with the health authority.

The decision about an individual referral on clinical grounds, however—provided that it is not wholly unjustifiable—rests ultimately with the GP. I emphasise to the House that that has been made clear both in the speech of my right hon. Friend to the council of the Royal College of General Practitioners and in the management advice document issued by the management executive. So the principles cannot be regarded as being in any doubt.

My hon. Friend would then understandably say, "How does it come about, then, that North Devon health authority finds itself in the position that it does on this referral?" The best answer that I can give him is that the fact that Mr. Thorpe had available to him the escape route of appealing to a health authority elsewhere in the country meant that the process was not carried to its conclusion in north Devon. Mr. Thorpe had available to him a quicker way to secure the referral that he was seeking to the unit in Birmingham, so the process was not finally concluded in north Devon. That is best illustrated by the fact that a similar case has been referred by another GP in north Devon to the same unit in Birmingham. Although the decision has not yet been made, that ECR is likely to be approved.

Although in theory we do not know how it would have turned out if that had been the only option available to Mr. Thorpe, we know that the principles are clearly set out in the health service management documents and at a political level by my right hon. Friend the Secretary of State.

No one argues that the referral is wholly unjustifiable on clinical grounds. Clearly the health authority does not argue that because it is about to honour a similar referral to the same unit in Birmingham. We do not know whether the process would have reached its conclusion if Mr. Thorpe had not had the alternative course open to him.

My hon. Friend asked a number of questions about the treatment. He asked about its effectiveness, whether it would have a palliative effect, and how it would work. I am advised that if an implant is successful it would reduce the need for medication and would therefore reduce the likelihood of the side effects that may be caused by drug treatment. That is my advice, although I emphasise to my hon. Friend that I am not a clinician and he does not need to be told that.

My hon. Friend asked me about the medical ethics of the issue. The position is clear. All research or therapy of an innovative nature in the health service, especially that involving foetuses or foetal material, requires the approval of a local research ethics committee. Such committees are established at district health authority level and include medical and nursing staff, GPs and lay members. They provide independent advice to local management on the ethical acceptability of any research proposed.

My hon. Friend asked why, if the treatment is available on clinical decision in London, it is not available in north Devon and 1 have dealt with that. He also asked what criteria should be applied in deciding priorities. Perhaps the best answer to that question is that we have recently established an NHS research and development directorate, under Professor Michael Peckham. Its programme will place emphasis on evaluations of the quality, effectiveness and cost of methods of disease prevention and treatment, and on research into the delivery and cost of health care. The answer to my hon. Friend's question rests with the new research and development directorate of the NHS management executive.

Mr. Wallace

In the letter from the Secretary of State which the hon. Member for Devon, North (Mr. Speller) read out, as well as saying that differences are likely to arise because of different clinical views, he said that they may arise because of different local circumstances. Can the Minister say whether those might include resources? Secondly, while I heard what he said about the fact that, in the case of Mr. Thorpe, the process in north Devon was not exhausted, the theoretical position remains that the treatment may not have been available in north Devon, but was made available in London by virtue of the fact that Mr. Thorpe had two residences and was registered in two places. Does he accept that it is unsatisfactory that that could have happened? Patients who are very ill may find that they are under pressure to find another place to register. Given their state of health, that is not desirable.

Mr. Dorrell

Those two questions have the same answer. I stress that the principle which underlies the acceptance of a particular ECR is that any health authority will, ultimately, accept an ECR that is not wholly unjustifiable on clinical grounds. A health authority retains, of course, the responsibility for ordering its own budgetary priorities.

It has never been the principle of any health service management that the acceptance of a referral means that the person referred will be seen tomorrow. To balance demand against available resources is a continuing function of health service management intra-contractually and extra-contractually. If a referral is not wholly unjustifiable on clinical grounds, it is not open to a health authority, wherever it is, ultimately to refuse to honour an ECR.

We would actively encourage health authorities to ensure that their resources were used effectively. If an ECR is made that is surprising to the clinicians working in a health authority, questions should be asked to ensure that it represents a fair use of resources. The GP who made that referral should understand the options available and the implications of his referral. If the GP insists on that referral, the health authority will honour it, provided that it is not wholly unjustifiable on clinical grounds.

My hon. Friend the Member for Devon, North asked about prescription charges and whether sufferers from Parkinson's disease should be exempt from them. He will be aware that that has been the subject of a long-standing argument in the health service. We have sought to concentrate assistance with prescription charges on those whose incomes are such that the charges cause a problem. We have not sought to extend the list of conditions which entitle a sufferer to exemption from prescription charges. We offer help through our income-related system and through the season ticket system, which limits the cost of a prescription to an individual patient.

I emphasise that I do not believe that any individual or manager in the health service has done anything in this case which departs from the principles upon which the health service is built. The district health authority received an unusual ECR and in those circumstances it was entitled to ensure that the use of resources involved in that decision was justified. It was also entitled to ensure that the GP who made the referral understood the implications of his decision.

The process in this case did not reach its logical conclusion because Mr. Thorpe—I commend him on his ingenuity, a quality with which the nation knows he is amply endowed—found a way to secure the necessary care. Nothing that I have read about the case leads me to the conclusion that anything untoward happened or that the basic and important principle of the GP's right to refer has been undermined.

Question put and agreed to.

Adjourned accordingly at seven minutes to Eleven o'clock.