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Cystic Fibrosis (Prescription Charges)

Volume 79: debated on Friday 24 May 1985

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

2.30 pm

I am grateful for my good fortune in drawing this debate in the ballot, especially as I understand that I nearly did not. I am asking the Government to say, five and a half years after I last asked them—they did not say this the last time—that the time has now come to add the disease of cystic fibrosis to the list of medical conditions from which its unfortunate sufferers are exempt from the need to pay prescription charges in the years between 16 and 65 when they again qualify for exemption.

I declare a substantial personal interest and a far less substantial interest. I have a 16-year-old daughter who suffers from cystic fibrosis. I would therefore receive the benefit of any financial relief that the Government may give in this matter for as long after the age of 16 as my daughter is dependent on me. Since she is blossoming, it may be that my financial gain will be exceedingly modest.

The Parliamentary Under-Secretary of State for Health and Social Security
(Mr. John Patten)

I am glad to hear that she is blossoming.

I thank my hon. Friend.

I should like to pay tribute to the Cystic Fibrosis Research Trust — the organisation that represents sufferers of cystic fibrosis and their parents. Adorned by the patronage of Her Royal Highness Princess Alexandra, the Honourable Mrs. Angus Ogilvie, the charity is dedicated to raising money to fund medical and scientific research projects—there are currently more than 50—in hospitals and universities all over the country into cystic fibrosis, its causes, treatments and, I hope, one day its cure. The trust is dedicated also to providing comfort, education and morale-boosting support to those whose sufferings may be greater than their children's — the parents—for cystic fibrosis, being a genetic disease, is inherited by the children from their parents, who usually have no idea that they are carriers of the recessive gene. The charity is an example of how much wonderful work can be done for the disabled without state aid.

Cystic fibrosis is a condition in which mucus glands secret abnormal amounts of mucus. This principally affects two areas of the body. First, the digestive system is affected by the mucus clogging up the flow of digestive enzymes, the pancreas does not function properly, or sometimes not at all, proteins and fats are not properly digested, and the child does not flourish. The treatment for that malfunction is for the child to follow an expensive, high-protein diet and to swallow several capsules—my own daughter needs 10— of powdered pig's pancreas with every meal. That more or less does the work that the human pancreas would have done had it been working properly.

Secondly, the lungs are affected. The abnormally thick mucus builds up in the bronchial tubes and tends to seal in bacterial and viral infections which, if not shifted, cause progressive deterioration, leading to lung failure and death. The treatment is usually in the form of physiotherapy for 20 minutes at least twice a day. The trust knows of one case where 12 hours a day is spent using physiotherapy and other cases where young students spend a major part of their school or college holidays getting their lungs cleared to go back to study when term starts. In addition, the disease requires the sufferers to take antibiotics and often the use of such artificial aids as decoagulating atomisers and mist tents at night.

It is obvious that the burden of care and extra responsibility falling on parents to keep their cystic children alive and enjoying as near a normal life as possible is considerable and that to relieve many of them of the additional worry of ever-inflating regular prescription payments, even if reduced by the season ticket facility, would be a highly desirable aim which hon. Members on both sides of the House would support.

If cystic fibrosis is not diagnosed and treated early, it is a killer. A generation ago it usually killed children in the first year of their lives. Now, as a result of work done by doctors, scientists, nurses and parents, with the help and guidance of the Cystic Fibrosis Research Trust, three-quarters of the children reach adulthood in reasonably good health. There is, therefore, even more need now for the medication to be made available on prescription than when I last asked the Government to do so.

It is believed that one in 20 of the population is a carrier of the recessive gene, that there is one in 625 chances of carriers marrying and a one in four chance of two carriers producing a cystic fibrosis child. There are known to be between 5,500 and 6,000 sufferers from cystic fibrosis in the United Kingdom, of whom 1,200 are adults, a number which, happily, increases by about 200 a year moving into adulthood.

What would be the likely cost of exempting cystic fibrosis sufferers from the cost of prescriptions? When I spoke five years ago on this subject, the pre-payment season ticket for prescriptions, the season ticket which reduces the cost over a period, was £4.50 for six months and £8 for 12 months. For what was then thought to be a total of 1,000 adults, the cost to the Government would have been £8,000 a year.

That was all I was asking for then, but the Government said no. Now the season ticket is £11 for four months and £30.50 for 12, so with, say, as many as 1,500 adults, the cost, if everyone claimed, would be £1,500 multiplied by £3050, which is £45,750, still peanuts in a spending budget of many thousands of millions of pounds.

Once it is conceded—as the Minister will, I am sure, concede—that the cost of this concession would not be great, the case for it becomes particularly strong. I am not asking the Government to change the rules for granting exemption so as to accommodate cystic fibrosis, but merely to apply the existing rules. The rules are that the condition shall be a permanent and clearly identifiable condition, requiring continual medication, in most cases by replacement therapy.

As it cannot be denied that cystic fibrosis is permanent, that it is clearly identifiable, that it requires continuous medication and that it involves replacement therapy, one is left wondering why it was not put on the list, together with diabetes, Addison's disease, epilepsy and illnesses of the thyroid, pituitary and adrenaline glands, in 1968. The answer must be that in the 1960s it was difficult to diagnose the disease. Few doctors knew anything about it. There was then insufficient knowledge of the disease, and when the exemption list was drawn up few children were surviving past 16 years of age. In short, there was no demand for the measure.

Why, then, was it not added to the list subsequently? My hon. Friend the Member for Ealing, Acton (Sir G. Young), now the Under-Secretary of State for the Environment, gave the answer when, as Under-Secretary of State for Health and Social Security, he replied to my debate in October 1979. He explained that any decision had to be by agreement with the medical profession, and went on:
"Speaking as a layman I have a great deal of sympathy with the call to add cystic fibrosis to the list, and I would hope that the medical profession, if it were asked, would agree that it seems to satisfy the normal criteria for inclusion…
What I have had to ponder over is whether I should ask the doctors to add cystic fibrosis to the list and I have seriously considered doing so, as I personally think that if as many CF patients had survived to adulthood when the list was origir ally drawn up, that condition might well have been included."
We were grateful for my hon. Friend's sympathy and hope that it has been transmitted to his successor. It will be a good start if it has.

My hon. Friend the Member for Acton continued:
"If one advanced the boundary a little further to include cystic fibrosis, one would also in justice have to conduct a more general review of the whole scheme, and probably put in those who have phenylketonuria or coeliac disease. Therefore, one has to take a slightly broader view of the exemptions than my hon. Friend would like… If I seek to add this condition to the list, can I really defend not going further? Should not I consider whether the list of exempt conditions is the best way of helping the chronic sick, and is it right to go on trying to improve the list as my hon. Friend would wish in a rather piecemeal way, instead of seeking an alternative, within the resource constraints imposed by our present financial circumstances, to help more of the chronic sick?"
The question "Should the boundaries be advanced?" arises, but, as cystic fibrosis is the commonest inherited disease, making the concession for other worthy diseases would hardly break the bank. Besides, one hopes that the restricted list of drugs which my hon. Friend the Minister is helping to introduce will be added to as deserving drugs which fulfil the Government criteria of being necessary and not otherwise clinically available present themselves, so the process of adding to lists is not an unheard of breach of principle which the Government do not indulge in.

My hon. Friend the Member for Acton continued:
"If I have decided to make no approach to the representatives es of the medical profession at present it is because I feel that we must first see whether it is possible to work out some fairer way within our present financial constraints to help all the chronic sick with the costs of the drugs they need than this present method of listing specified medical conditions."
That was a kind and well-motivated intention. My answer must be that the Government have had five and a half years in which to work out
"some fairer way within our present financial constraints to help all the chronically sick with the costs of the drugs they need"
and have not been able to do so. I do not blame them for that; it might not be possible. No better way has been found. My hon. Friend the Member for Acton continued:
"If we conclude that there is no better way than the present, I will return again to the request of my hon. Friend that we should consider, with the representatives of the medical profession, whether the list is fully up to date and whether there is a case for adding cystic fibrosis to it and perhaps some other similar conditions."—[Official Report, 25 October 1979; Vol. 972, c. 688–91.]
The situation has got worse and the hardship grows. The Cystic Fibrosis Research Trust, thousands of parents, senior paediatric consultants from all over the country and many of my parliamentary colleagues whose names I listed on 25 October 1979 are asking the Government to make this change after consultation with the medical profession. Will my hon. Friend now return to this matter, as promised by his predecessor, and show once again that Conservative Government care by granting this request?

2.45 pm

One of the most comprehensive cases that I have ever heard in the House has just been presented by the hon. and learned Member for Burton (Mr. Lawrence). I hope that this time he will be successful.

I remind the Minister of the history of this matter. When Kenneth Robinson reintroduced prescription charges in the 1960s, the Government undertook to exempt acute illnesses. That has proved impossible because of the problem of identifying them precisely. Even Parkinson's disease is not exempted. I think that the hon. and learned Gentleman's case should be considered entirely on its merits and not turned down on the thin-end-of-the-wedge argument. He has made the case for a single drug, and it should be possible for cystic fibrosis to be listed. That would still give a total of only nine on the list. Because, in five years' time, I may raise a similar issue on an Adjournment debate, that is no reason why the hon. and learned Gentleman's case should be put out of court now.

With the growth of the application of chemotherapy to a number of diseases where previously drugs were not available, and as we can precisely identify a drug used, if the patient cannot be exempted will the Minister consider exempting the drug? The dispensing chemist would have permission to exempt a script for that drug. If such a new approach could be discussed with the British Medical Association, that would solve many problems in addition to that so effectively raised by the hon. Gentleman.

2.47 pm

The Parliamentary Under-Secretary of State for Health and Social Security
(Mr. John Patten)

I agree with the hon. Member for Brent, South (Mr. Pavitt) about the effectiveness of the speech of my hon. and learned Friend the Member for Burton (Mr. Lawrence). In recent months I have become used to being exposed to lengthy sessions of his forensic debating style and eloquence. Anyone who sat in the Chamber during our debates on fluoridation will remember that.

Characteristically again today, my hon. and learned Friend, with his usual clarity and force and his knowledge based on experience as someone with a 16-year-old daughter with cystic fibrosis, has made a case for having those who suffer from that disease exempted from prescription charges. He reminded the House about his speech on 25 October 1979, which I have read with great care, and the undertakings given by the then Under-Secretary, my hon. Friend the Member for Ealing, Acton (Sir G. Young)—that veteran of Adjournment debates.

I want to go over the history of our attitude towards those suffering from this and similar conditions, and then to answer my hon. and learned Friend's specific questions. When prescription charges were reintroduced in 1968 by the Labour Government, a list of specified medical conditions was drawn up as a means of exempting some of the chronically sick. Such a scheme could operate only with the full co-operation of general medical practitioners. Their representatives made it clear that they could agree to exemption only for readily identifiable medical conditions that called automatically for continuous life-long medication—in most cases replacement therapy.

My hon. and learned Friend believes—and the hon. Member for Brent, South supported him—that a caring Government should update that list and add a number of other conditions. That the Government care is self-evident because we are treating so many more patients in the NHS, both in hospitals and in general practice. We are employing many more nurses and midwives who do excellent work that is much appreciated by us all. We are employing many more doctors and spending more money. I mentioned money last, but it is by no means the least important factor. It is probably one of the most important factors because of the possible cost of extending the list.

I can appreciate the profession's insistence that only conditions about whose diagnosis, lifelong character and need for medication there can be no doubt should be included. I think that that is common ground. The hon. Member for Brent, South made the important point that medical science is advancing so quickly that diseases often have be reassessed, and there are earlier and better diagnoses.

A doctor would not wish to enter into a debate with a patient about whether his condition was severe or permanent enough to attract exemption. Yet such arguments would be inevitable if ill-defined or complex diseases were added to the list or conditions were added that were so variable in their prognosis or treatment that exemption would not always be justified. The doctor would have to make, and defend, difficult judgments between two patients at different stages of the same disease, and that could put at risk the important relationship between doctor and patient: a relationship where we tread rather delicately and tend to leave as much as possible, quite properly, to the medical profession's ethical views.

Cystic fibrosis was not included in the exempt list drawn up in 1968, but it has been looked at again since then. Indeed, the list was kept under review — to use that classic Civil Service and, alas, ministerial terminology. As my hon. and learned Friend the Member for Burton knows, it was last discussed with representatives of the medical profession as long ago as 1976, when cystic fibrosis was one of the conditions considered. But the General Medical Services Committee, representing the medical profession, did not at that stage come to an agreement over the addition of any conditions to the list.

Had sufferers in the run-up to 1968 enjoyed the life expectancy that they now enjoy, the illness might have been included. I am the first to admit that that is a very strong possibility. My hon. and learned Friend spoke very calmly but movingly about the problems from which many of those with cystic fibrosis and those who care for them suffer. The thought of 12 hours of physiotherapy is indeed daunting. But thanks to the advances made in treating and caring for such people, it is estimated that there are well over 1,000 young people with cystic fibrosis who are aged over 16, which is the age of my hon. and learned Friend's daughter.

Because his parents came to see me, I know of one undergraduate aged 18 who has cystic fibrosis, and who is going up to Exeter college, Oxford, next autumn to read mathematics. I understnd the problems facing his parents and other young sufferers who go to college. I do not need to describe the condition, as my hon. and learned Friend has described it all too well. It is, to put it mildly, understandable that the condition should cause great distress to those who suffer from it and to their parents, relatives and friends who strive to help them for the very long hours that are sometimes necessary.

We all want to do what we can to help, but the case for free prescriptions for that group of people must be seen, I am afraid, within the wider context of the whole range of services provided by the NHS, the resources availabe, and the resources that exist to improve those services. I am well on the way to accepting my hon. and learned Friend's point that cystic fibrosis deserves very strong consideration. Alas, however, I am not at all convinced of the argument that it could be considered in isolation.

Before my hon. and learned Friend cross-questions me on that point, I should like to explain my reasons. However, I can see that my hon. and learned Friend is anxious for me to give way now, so I give way to him.

Will my hon. Friend at least give an undertaking to refer this issue to the medical authorities that last considered it in 1976? It was last given consideration by the medical profession an appallingly long time ago.

I shall consider that point and directly answer it when I answer my hon. and learned Friend's main question at about 2.59 pm.

To exempt the cost of treating about 1,000 patients with cystic fibrosis would be relatively small, but there are many other groups of people who understandably believe that they too should be included in the list. One could argue that it is obvious that certain other conditions should be included, but it is not quite as easy as that. There are people who are suffering from Parkinson's disease, multiple sclerosis, coeliac disease, schizophrenia, glaucoma and Crohn's disease—happily a disease which is not suffered by very many people. Hypertension and disease of the heart are also conditions that last for a long time and are on the increase in this country. That applies to cancer, too, despite all the research efforts.

I am not trying to muddy the waters. I am only trying to point out to my hon. and learned Friend the Member for Burton and the hon. Member for Brent, South that there is a whole host of conditions for which a very good case could be made. That is where the rub comes. [Interruption.] I shall not criticise the hon. Member for Brent, South for shouting at me from a sedentary position after I allowed him to intervene earlier, but that is uncharacteristic of him.

That is not the end of the list of illnesses for which requests for free prescriptions are made; I could give more. If the list were extended, it would, in fairness, have to be extended substantially beyond cystic fibrosis. That is where the rub comes. That is where the cost comes. We shall have to examine again the cost of a significant extension of the list.

I defend the Government against any charge that theirs is an uncaring approach. We are concerned to ensure that nobody should be deterred from obtaining the necessary medication, whatever the illness. To the best of my knowledge, nobody is deterred from getting the necessary medication because of his or her illness. There are wide-ranging exemptions. Seventy-two per cent. of all prescriptions dispensed — rather than 72 per cent. of people receiving prescriptions—are free of charge. In recent years that number has increased. There are also pre-payment certificate arrangements to which my hon. and learned Friend the Member for Burton referred. The wide-ranging exemption from prescription charges, affecting 72 per cent. of all prescriptions, as well as the pre-payment arrangements mean that less than one quarter of all prescription items attract a charge when they are dispensed. Only 22 per cent. of all prescription charges are met by those who need prescriptions.

I must remind the House of the arrangements for the exemption of those on low incomes which can be claimed by anybody over the age of 16. This is a very important provision in both this and similar contexts. Even if somebody is not exempt on medical, financial or age grounds, the purpose of a pre-payment certificate can lead to considerable savings where frequent medication is required.

In conclusion, I wish to answer the questions asked by my hon. and learned Friend in his speech and when he intervened a few moments ago. I deal first with his second question—the reference of these issues to the medical profession. The co-operation and agreement of the medical profession will be needed to make this work, but the impetus for the reconsideration of this policy will have to come from within my Department, not from an independent medical body. I have not tried to hide behind a medical screen and to place the responsibility upon the medical profession. I have been honest with the House and have said that there are wide financial and policy implications.

Secondly, my hon. and learned Friend asked whether the Government would consider this matter further. He may not have noticed that on 11 March 1985 my right hon. Friend the Secretary of State for Social Services said that he would reconsider this issue. He gave that undertaking following his statement to the House on 11 March about National Health Service charges when he answered a question from my hon. Friend the Member for Chislehurst (Mr. Sims). That re-examination is taking place within my Department, and we hope that it will be completed before the end of this year.

Question put and agreed to.

Adjourned accordingly at one minute to Three o'clock, pursuant to the resolution of the House of 16 May.