HC Deb 31 March 1999 vol 328 cc1219-26

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

11 pm

Mr. Archie Norman (Tunbridge Wells)

I am glad, even at this late, have a chance to raise the cause of cystic fibrosis sufferers. I am grateful, too, to the Minister for remaining here late to hear what I have to say.

Cystic fibrosis is a serious genetic disease. It is the United Kingdom's most common life-threatening inherited disease. It causes great suffering throughout life and is, in most cases, the eventual cause of death for sufferers. One in 25 of the UK population is a carrier of the CF gene, and one in 2,500 babies is afflicted with the disease.

Cystic fibrosis used to be a children's disease. In 1968, when the prescription charge exemption list was first developed, adult cystic fibrosis was virtually unknown because of the simple fact that the children did not survive long enough to last into adulthood; they died in childhood. Now, as a result of advances in medical research and the improvement in palliative care, many sufferers are surviving into adulthood. Therefore, the question of prescription charge exemption is relevant.

I have a personal interest in the matter because my father, Dr. Archie Norman, devoted much of his working life to research into cystic fibrosis and the care of CF patients. He tells me that few of his former patients live on even into their 50s. Dr. Wallis of Great Ormond Street hospital for children estimates that, today, the average life expectancy of a new-born CF baby is 30 years.

Therefore, the time has come to reassess eligibility of CF sufferers for prescription exemption. That issue has been clearly identified by the Labour party as a serious issue and was set out as an explicit commitment in "Health 2000", which was published in February 1994 by the Labour party. It says: we will undertake a thorough review of all ancillary charges. This will include an overhaul of prescription charges. We will seek to provide free medication as part of on-going treatment or long term requirements. For example, those suffering from cystic fibrosis who reach adulthood should not have to rely on some other category such as diabetes in order to obtain free prescriptions". That commitment was clear cut and unambiguous. The Minister will also be aware of the early-day motion that was tabled last November, which was signed by 120 hon. Members, 75 of whom were Labour Members, including the Chairman of the Select Committee on Health, the hon. Member for Wakefield (Mr. Hinchliffe).

Today, the Prime Minister reaffirmed that commitment when, in answer to my question, he stated: I am well aware of the problem to which the hon. Gentleman draws attention. We shall carry out all our commitments in 'Health 2000'. Those are fine words and noble sentiments. Regrettably, however, to date—and it is nearly two years—we have heard little from Ministers regarding any specific intention to act.

Despite that clear and reaffirmed commitment, despite the hope and belief that it gave to many CF sufferers who voted at the general election, after nearly two years we have had no announcement of any time scale. I ask the Minister to give a clear indication of the position and to come clean as to when, not whether, the pledge will be delivered.

In particular, will the Minister clarify a statement made by the Chief Secretary to the Treasury, who, when he was Minister of State at the Department of Health, wrote to the Cystic Fibrosis Trust, in November 1998, saying: the list of medical conditions conferring prescription charge exemptions was introduced in 1968 after being discussed with the medical profession"— we knew that— and no clear consensus for extending it has since emerged"? That statement seems completely blind to the consensus that has indeed emerged on CF. The right hon. Gentleman seems also to have been unaware of the Labour party's commitment on the subject.

There is widespread support for exemption for cystic fibrosis sufferers. It may be that other conditions are good candidates for exemption, but are more contentious. It seems absurd, however, to penalise CF sufferers because other cases may be more doubtful.

The British Medical Association agrees that the current system is widely seen by the public as unfair. The BMA supports exemption for CF sufferers. Dr. George Rae, chairman of its general practitioner prescribing committee, has said: it is unfair that a person with diabetes can pay absolutely nothing for medication when they are otherwise young and healthy, while a person with CF or chronic obstructive airway disease can end up paying for all their drugs In March 1999, the BMA also stated that there are many unacceptable inequalities and anomalies in the present system. Those with cystic fibrosis are more disadvantaged than some of those presently exempt. There is no doubt that applying the original criteria"— the 1968 criteria— for prescription charge exemptions…CF would qualify now that sufferers are living into adulthood. The National Association of Community Health Councils has endorsed that view, and Rosie Barnes, a former Member of Parliament as well as being chief executive of the Cystic Fibrosis Trust, has said: We believe that all adults with cystic fibrosis should be exempt from prescription charges on the grounds that they have a chronic medical condition which requires continuous essential medication The financial problems facing many CF sufferers as they grow into adulthood, and their families, are acute. Living costs are higher as a result of the condition, and not just because of medicines. Sufferers have a continual requirement for medication throughout their lives. Life as a CF sufferer from birth is a struggle to stay alive and to stay healthy.

I have spoken to many CF sufferers about the extent of the medication that they require just to stay alive. Rachel Lawrence, a working barrister who has CF, and the daughter of Sir Ivan Lawrence, the former hon. and learned Member for Burton, said: there have always been fistfuls of drugs. Enzyme replacements, antibiotics, which I can never stop taking, to ensure that my lungs don't get infected…Periodically, the pills don't work and I have to go to hospital to have the drugs intravenously". She must also take vitamins and other supplements, and she has insulin four times a day.

Mark Barron, a constituent from Tunbridge Wells, also suffers from CF. He says: It is so unfair that I have to pay for drugs that keep me alive: especially when people with other chronic medical conditions do qualify for free prescriptions. It is a tax on living longer". In addition, CF sufferers face other living costs that are naturally high. They need a high-calorie diet, which means that they cannot rely on normal junk food. Their life support costs are greater than for normal individuals, because it is essential that their homes are kept very warm and dry. Often, they cannot use public transport. They need oxygen on flights if they travel by air. They need a nebuliser, but, unfortunately, those provided by the national health service are not portable. For any kind of independence, they must pay £300 plus maintenance for their own portable nebuliser.

The cost of suffering from CF is therefore very great. A modest estimate for an adult would be in excess, above normal living costs, of £1,000 a year.

Dr. Ian Gibson (Norwich, North)

Will the hon. Gentleman confirm that he is asking for an exemption for just 1,000 people or even fewer?

Mr. Norman

The hon. Gentleman makes a good point. His expertise on this matter is a benefit to the House. We are indeed considering a population of about 1,000 adults who suffer from CF and who are in work. The total population of adult sufferers is believed to be about 2,500, and I shall explain later the cost to the Exchequer of free prescriptions, which would be small.

It is believed that, despite the great suffering caused by CF, about 1,000 of the 2,500 people with CF are in work. In many cases—almost by definition—that work is part-time or relatively lowly paid, and it is flexible to allow for the particularly acute periods of periodic suffering.

It is vital to CF patients that they are able to stay in work, not least for their own self-esteem. Many CF sufferers show remarkable resilience, and, from early childhood, learn to live with continuous suffering and hospital visits, usually in the knowledge that the disease will get them in the end. Those patients have displayed remarkable courage, and they deserve our support.

I should like to read out an excerpt from a short, but moving, letter. It states: John was, perhaps, the most courageous person I have ever known. Ours was a friendship borne out of adversity because, for almost the entire time I knew him, he was lying in bed. John's great strength was that he paid so little attention to his own weakness…he showed no sign of anger, no trace of bitterness, but touched us all with an aura of optimism and hope for the future, such as I have never before encountered". The letter was written by Diana, Princess of Wales, after one of her many visits to the Royal Brompton hospital, in London. She was a full supporter of the Cystic Fibrosis Trust and its work.

Most cystic fibrosis sufferers, like John, end up in hospital, dying as a consequence of the disease. Meanwhile, ever more of them are struggling to support themselves, to lead a normal life and to eke out a living. It is vital that we provide CF sufferers with the support that they need to work, rather than encouraging them to fall back on benefit to be able to pay for their health care costs.

I fully appreciate that the Minister will not want to make an unlimited extension of prescription charge exemption, because of the cost implications of doing so. However, the cost of exemption for CF sufferers is small, and it is affordable. There are only a very few adult CF sufferers, and, regrettably, they still do not live for very long. As most of them are paying an £85 annual prescription charge, the estimated cost of extending the exemption could be about £100,000 a year—perhaps as little as 0.03 per cent. of total prescription income. It seems a small price to pay for fair treatment for some of the most vulnerable and courageous people in our society.

The Government have made a clear commitment, which the Prime Minister has reaffirmed. The cause is a just and a fair one. The commitment is also a matter of public trust, as a commitment on it was made, as a pledge, throughout the general election. The Government have a moral obligation to act, and not to prevaricate.

There is no need for further reviews. It is a small item to the Exchequer, but a big item for the many courageous and deserving CF sufferers who pin their hopes on the words of the Prime Minister, and who now expect that word to be honoured.

11.13 pm
The Minister of State, Department of Health (Mr. John Denham)

I congratulate the hon. Member for Tunbridge Wells (Mr. Norman) on his success in the ballot, on raising some very important issues in the debate, and also on the way in which he has addressed them.

As the hon. Gentleman said, cystic fibrosis is the commonest genetic disease found in Caucasian people. Approximately one in 2,500 children are affected by the condition, which is a disorder of the mucus-secreting glands of the lungs, the pancreas, the mouth, the gastro-intestinal tract and the sweat glands of the skin.

Soon after birth, babies may have bowel obstruction due to thick bowel contents. They develop repeated chest infections because of sticky bronchial secretions, and do not absorb food normally because of a lack of normal pancreatic secretions. The symptoms are, among other things, a failure to gain weight despite a good appetite and repeated attacks of bronchitis. We know that between 10 and 30 per cent. of people with cystic fibrosis also develop diabetes mellitus because of complications with the pancreas.

These days, management of cystic fibrosis is often done largely at home, and specialist nurses are of value in supervising treatment—which consists of regular physiotherapy and postural drainage, antibiotics and the taking of pancreatic tablets and vitamins. It has become more common for acute exacerbation of infections to be treated by intravenous antibiotics at home, rather than by admission to hospital. That is particularly true because of the spread of pseudomonas cepacia within cystic fibrosis units.

It is heartening to see that, with significant improvements in the care and services for people with cystic fibrosis, 75 per cent. of today's sufferers survive into adult life. Two decades ago, only 12 per cent. of affected children survived into adolescence. We continue to work closely with health professionals, the Cystic Fibrosis Trust and all those with an interest to continue to look for ways to improve the care of people with cystic fibrosis and their quality of life.

I am aware of the progress that has been made in the study of gene replacement therapy, and I know that the Cystic Fibrosis Trust is hopeful that a cure for the condition can be found within the next decade or so. Trials are now in progress at the Royal Brompton National Heart and Lung hospital to test the introduction of the gene into the nasal mucosa of patients.

In another area of work, the national screening committee chaired by the chief medical officer, which includes health care professionals and media and consumer representatives, is looking at screening programmes throughout the United Kingdom. The criteria against which the committee is assessing programmes include good evidence of the effectiveness of the screening programme; whether the condition can be effectively treated; and whether quality assurance mechanisms have been developed. The national screening committee is approaching national programmes systematically and offering advice in the light of commissioned research. The committee has established an expert sub-group to review child health issues.

Mr. Andrew Stunell (Hazel Grove)

Will the Minister give way?

Mr. Denham

I shall take only one intervention, at least until I have been able to address the issues raised by the hon. Member for Tunbridge Wells, who secured the debate.

Mr. Stunell

I wanted to draw the Minister's attention to early-day motion 500, which calls in particular for those screening tests to be conducted nationwide. I hope that he will take that point on board.

Mr. Denham

As I was saying—this is relevant to the hon. Gentleman's point—the national screening committee has established an expert sub-group to review child health issues. That sub-group is currently waiting for the health technology assessment report on cystic fibrosis screening to be published, so that it can consider the effectiveness of screening for this condition in the light of emerging evidence. We expect the national screening committee to report to Ministers later this year.

When we were in opposition, we promised a review of prescription charges, and we have undertaken that review. The current prescription charge exemption arrangements and all other aspects of Government spending were reviewed as part of the recent comprehensive spending review, which reported to Parliament in July last year.

The hon. Member for Tunbridge Wells mentioned the document "Health 2000", which was published by the Labour party. It was a consultation document, which suggested that if people were receiving free medication as part of on-going treatment or long-term requirements, they should not automatically receive all other medications free of charge. When we looked at that issue as part of our review of prescription charges, we concluded that it would be difficult to charge some people for medication that they currently receive free. We also concluded that the proposal would impose an onerous burden on doctors, who would have to decide whether any particular prescription item would be charged for or free. We noted that there was no consensus on what additional conditions might be included in any revised list of medical exemptions, or how distinctions could be drawn between one condition and another.

For all those reasons, we concluded that all current prescription charge exemptions would be protected for the rest of this Parliament. We also decided that prescription charges would rise by no more than the rate of inflation over the next three years.

It is clear from the hon. Gentleman's remarks that he is aware that the list of conditions conferring entitlement to free prescriptions was drawn up in 1968. The list, which excluded cystic fibrosis, was agreed following discussions between officials of the then Ministry of Health and representatives of the medical profession.

I appreciate that, due to clinical development, many cystic fibrosis sufferers are now living longer and fuller lives. Sadly, that was not the case in 1968. For that reason, some, including the hon. Gentleman, have argued that sufferers should now receive free prescriptions. However, many groups consider that they, too, should receive free prescriptions, and it would not have been right to consider one group in isolation. That had to be taken into account in our review.

In 1968, when medical exemptions were first introduced, only 42 per cent. of all NHS prescription items were dispensed free of charge. I am pleased to say that now more than 85 per cent. of prescription items are dispensed free.

People likely to have the greatest difficulty in paying for prescription charges—for example children under 16, people over 60 and those on low income—get their prescriptions free. Those arrangements ensure that no one need be deterred from obtaining necessary medication for financial reasons.

Equally, cystic fibrosis sufferers on mean-tested benefits, such as income support, also receive free prescriptions while others may get full help under the NHS low income scheme. For those not entitled to free prescriptions, prescription pre-payment certificates offer real savings for anyone who needs more than five prescription items in four months or 14 items in 12 months.

The hon. Gentleman referred to what I believe he called the financial plight facing sufferers from cystic fibrosis who now, happily, live on to adulthood. Prescription pre-payment certificates mean that no one has to pay more than £84.60 for 12 months for as many prescriptions as are needed. We recognise that, because of the difficulty some people might have in finding that amount as a lump sum, we also make available pre-payment certificates for £30.80 for four months.

It is also the case that on 25 February, the Government announced the lowest prescription charge increase for 20 years. The charge for a single prescription will rise by only lop from £5.80 to £5.90 from 1 April 1999. That represents a cash increase of 1.72 per cent., which actually means that prescription charges will fall in real terms. That small increase will protect the contribution that charges make to NHS income and help to maintain the valuable services provided to patients.

In Britain, the prescription charge is an important contribution towards the cost of medication, to be paid only by those who can afford to do so. It is not, and never has been, directly related either to the particular item prescribed or to the actual cost to the NHS of dispensing it.

I draw hon. Members' attention to the comprehensive publicity campaign about the introduction of "point of dispensing" checks. That campaign started on 15 March and will run for three weeks with press and poster advertising. It is being backed up by a nationwide, free telephone advice line to help patients unsure about their exemption and to advise practitioners and staff.

I refer to that only to reassure hon. Members that patients will not go without medication as a result. Those who do not show evidence of exemption from prescription charges will still have their medicines dispensed, but their prescription forms will be marked to aid subsequent checking.

The Government applaud the invaluable work of the Cystic Fibrosis Trust, which continues to campaign on behalf of its members, carers and families with children who suffer from the condition. Through its efforts, it has succeeded in educating both Government and the general public of the difficulties experienced by sufferers from cystic fibrosis. That is why my Department has funded, and continues to fund, several projects that support its work—the cystic fibrosis advocacy project and a user involvement project. It is through initiatives such as the advocacy project that we can increase public awareness and look for ways to help those who suffer from cystic fibrosis.

I thank the hon. Gentleman for raising an important issue in what I hope has been a useful and informative debate.

Question put and agreed to.

Adjourned accordingly at twenty-four minutes past Eleven o'clock