§ Motion made, and Question proposed, That this House do now adjourn.— [Mr. Bates.]8.54 pm
§ Mr. Colin Pickthall (West Lancashire)
I am grateful to have the opportunity to raise the subject of diabetes. I did not expect to make my speech so early, but I promise the Minister of State that I will not keep him from an early bath.
I start by declaring an interest—I am an insulin-dependent diabetic, and naturally I take a particular interest in the matter. I shall be talking about matters that lie outside the Minister's area of responsibility, as diabetes is an issue that spreads into other areas. I do not expect definite answers from him on any of these matters, but I hope that he will communicate my queries to other Ministers in one way or another.
I sought this debate to coincide with National Diabetes Week, which in fact is next week, between 9 and 15 June. The week of activities seeks to educate the public generally and to heighten awareness of the problems and possibilities associated with the condition of diabetes. The British Diabetic Association is targeting in National Diabetes Week fitness and exercise as a crucial part of a diabetic's maintenance of good balance and good health.
When diabetics maintain the delicate balance between diet, drugs and exercise, they save themselves a lot of personal discomfort and misery in the short and long term, but also save the NHS vast amounts of expenditure. It is therefore in the interests of individuals and the Exchequer that, as a community, we get diabetic care right.
To indicate the scale of the problem, which has not yet been quantified by the Government, it should be recorded that there are about 1.4 million known diabetics in Britain, with a similarly huge number not diagnosed. Some 20,000 diabetics—almost all of whom are insulin-dependent—are under the age of 20. That is about 100 for each health district. These people have an entire lifetime to seek to control the condition.
There is a much greater prevalence of diabetes in our Asian and Afro-Caribbean communities, and a higher incidence in men than in women. I do not think it is irrelevant to say that, worldwide, there are estimated to be 110 million people with diabetes, and in Europe, 18.5 million people. A significant fact that interests me is that 10 per cent. of insulin-dependent diabetics use 80 per cent. of the world's supplies of insulin. Western intervention in eastern Europe after the collapse of the Soviet Union was particularly important given the lack of health care for diabetics. It is also an important matter in third-world countries, and may be one in which Lady Chalker might wish to take a great interest.
In large measure, diabetics have to care for themselves on a day-by-day basis. It is a complex task requiring help, education and constant self-monitoring, particularly of blood sugar levels. The more even those levels can be kept, the less likelihood there is of long-term severe complications such as retinopathy, neuropathy, cardiovascular disease, kidney failure, amputations and other conditions that can follow from long-term diabetes.
When thousands of new diabetics are diagnosed in this country each year, the size of that education and training task can be readily appreciated. As I understand it, records 692 of diabetes are not kept by health authorities, so we have no precise statistics. I understand that considerable pressure has been exerted for local registers of diabetics. I commend that proposal to the Minister if he has not already thought about it, but I am sure he has.
I have many complaints and many descriptions of shortcomings to make in the debate, but I would not like it to be thought of as a gloomy debate. Professor Harry Keen, president of the BDA, has quite rightly said:These are times of great promise for people with diabetes.There are exciting developments in research into implants of insulin-producing islets, artificial pancreases, as well better as insulin and better delivery systems for insulin. The Government could do an enormous amount for the health of the nation by encouraging and financing an intensification or speeding up of research into those developments.
Cuts or the freezing of research budgets, such as that of the Medical Research Council, whose budget has been cut by 1.5 per cent. in the current year, are very sad, and perhaps foolish. They hinder the likelihood of huge savings that would come from more efficient remedies or controls of diabetes. The same is true of research into the causes of diabetes.
There have also been admirable advances in recent years in the creation of a network of diabetic clinics. At my local clinic at Ormskirk hospital, consultants, a specialist diabetic nurse, a dietician and a chiropodist work together with back-up staff. The easily available provision of such specialist facilities to the entire diabetic population is an aim, I believe, of the NHS, and it should be achieved as soon as humanly possible.
The St. Vincent declaration has set out targets to reduce dramatically over five years the incidence of severe complications in diabetics. It also sets out to change the emphasis, in order to deal with individuals who are diabetics instead of a category or a type of person.
I urge the Government to study the shortcomings and difficulties that are faced by diabetics, and to alleviate them where they can. As I said before, I realise that many of them are not the responsibility of the Minister, but I know that he will be interested in them, and will communicate them to his colleagues in other Departments of State.
The Minister could deal directly with the first problem—the non-availability on prescription of Novopen needles. The Minister will recognise that the pen system for insulin delivery enables a diabetic to keep much better control over blood sugar levels, particularly those who have irregular life styles, as I do perforce as a Member of Parliament. The long-term savings for the NHS are enormous. While some people use replaceable needles several times, many cannot face, and perhaps should not be expected to face, reusing a steadily blunting needle. That can be exceedingly painful, and is a particular problem for young children. A week's supply of such needles can cost as much as £10. As they are not on prescription, that cost must be met by the insulin-dependent diabetic, who might be on the lowest of incomes. I believe that it is only a matter of time before that injustice, as I think it is, is remedied in response to the pressure from many thousands of pen users and would-be pen users.
The Government could make a very popular gesture by putting those pen needles on prescription, as disposable hypodermics are, at comparatively little cost and with 693 considerable future savings in terms of better control of diabetes. As diabetics are converted into using pen needles, they cease to use most of their disposable hypodermic syringes, which are on prescription, so the costs should more or less balance in the long run. I understand that discussions have been taking place on this matter inside the Department, and I urge the Minister to expedite them if he possibly can.
Experience has shown that no job exists that cannot be done as well by someone who is diabetic as by anyone else, whether it is the job of an international footballer or of an actor, such as Leo McKern, Sir Harry Secombe or Willie Rushton, who were all involved in exceedingly stressful jobs and are all insulin-dependent diabetics; or the jobs done by several hon. Members of the House, and of another place; or heavy manual work. Every diabetic person is different; that is the central message, if any, of this speech.
Each person must work out his or her own regime. Each person must anticipate times when blood sugar might become low because of missing out on a meal at a specific time or because of unexpected exercise. That can lead to hypoglycaemia, and the diabetic must ensure that he takes in extra carbohydrate sugars to compensate.
All diabetics, as far as I know—at least unless they are completely mad—carry emergency rations with them to counter such possibilities. However, some occupations deem insulin dependency to be incompatible with the work involved, and in most of the cases I shall mention that assumption is a blanket one, ignoring the individual's success or otherwise in controlling the diabetes, and even ignoring medical evidence provided on that person's behalf.
For example, police forces usually automatically suspend or sack insulin-dependent officers. Many dedicated police officers have written to me in considerable distress, having lost promising careers simply because they suddenly developed insulin-dependent diabetes in middle age. As far as I know, the Home Office has not seriously studied that problem. I have tabled several questions about this, and received an answer more or less to the effect, "It is nothing to do with us," or, "The problem is in hand."
It is wrongly assumed that a police officer who is insulin-dependent is more likely than the next man or woman to suffer lapses of health while working. The same applies to firefighters, with the added impetus that a firefighter who is insulin-dependent cannot drive a fire tender or one of the heavy vehicles that the fire service uses, so he or she gets the sack or is demoted or pushed sideways into a desk job.
Even more peculiarly, in most cases a similar ban applies to offshore work. I take one absurd example. A 50-year-old man working as a ticket seller on the Shetland Isles ferry service became insulin-dependent. As soon as that happened and his employers found out, he was sacked, because he was unable to comply with the medical standards for offshore work. That worker was never more than 15 minutes from land, and had nothing to do with running the vessel. He simply collected the ticket money for the vehicles on the ferry.
Just as worrying is the story of a girl accepted for nurse training. After her initial acceptance, she was suddenly refused because she was insulin-dependent. Her health 694 record, attested by her doctor, was excellent, but she told the hospital, in all honesty, that she had experienced hypos during the previous two years. The attacks were mild and had been self-treated. The hospital concerned was, in effect, refusing to accept any nurse with insulin dependency.
Only this morning I read an article in the Lancashire Evening Post about a diabetic man in Wigan, who said that he was refused entry into the armed forces because of his diabetes. He had also been sacked from his employment as a barber when his employer found out that he was insulin-dependent.
Perhaps most pressing in all these examples of discrimination—that is what they are—is the case of heavy goods vehicle and public service vehicle drivers. An insulin-dependent diabetic applying for a driving licence after 1 July this year will be banned from holding one of the new class 2 licences, which would prevent the driving of any vehicle over 3.5 tonnes.
Already, most HGV drivers in the United Kingdom who become insulin-dependent are effectively banned from continuing their employment. Some flexibility is possible in the European legislation, but it is by no means certain that the Government will take advantage of it to ensure that people treated with insulin are not automatically barred from driving class 2 vehicles and the range of associated jobs. I hope that the Minister will have a quiet word with his hon. Friend the Minister for Transport in London, the hon. Member for Epping Forest (Mr. Norris), who is responsible for these matters and who I know is fully aware of the details.
There is a further problem associated with drivers. People who apply for work as taxi drivers in some parts of the country are refused licences because they are insulin users. I am unclear how much protection might be provided for those who suffer discrimination in employment in the Disability Discrimination Act 1995. I know that some protection is provided in insurance matters, but, as I understand it, there is no protection in occupational matters.
Two issues underlie all these complaints. Insulin-dependent people will have hypoglycaemic experiences from time to time, and there is no point disguising it. They can be very severe. The attacks result from an excessive drop in blood sugar levels and bring about a disorientation which is rather like drunkenness, only slightly less pleasant. I have been a diabetic for 13 or 14 years, and I have suffered two such attacks, both in the middle of the night.
That raises another problem. As a nation, we keep no records of people who are insulin-dependent and subject to hypoglycaemic attacks but who live alone and have no back-up from relatives. Most relatives of such people are well aware of what the insulin-dependent person has to go through, and are alert to the need to protect them. About three years ago, in a sad case in Grangemouth in Scotland, a woman who was an insulin-dependent diabetic died in a coma, and her small baby died of starvation; yet we have no systems to monitor lone diabetics.
Vague knowledge of the problem of hypos causes the knee-jerk rejection of insulin dependents by the sort of employers I have mentioned. Those who suffer from hypos are those with poorly controlled diabetes, and no one would suggest that someone who is continually poorly controlled should be allowed to drive an HGV. 695 That would be complete nonsense. Most insulin dependents, however, are well controlled, and that is more and more the case as education and monitoring improves and as more pens are in use.
My case is that every insulin-dependent diabetic who seeks to gain or retain employment should be judged on his or her medical record, witnessed if necessary by independent doctors, as happens in other areas. We seek to end the blanket rejection of diabetics, because that is a plain injustice, and is also appallingly inefficient in economic and employment terms. Many other medical conditions could cause the problems that employers imagine will arise from diabetes, but most of them do not give rise to blanket bans such as I have described.
I have already said that it is incumbent on diabetics and their medical advisers to educate themselves about the best possible control of their condition. They have primary responsibility. However, it is also incumbent on employers and Ministries that impose regulations to educate themselves about the realities of diabetes and individual differences. The Government must take a key role, whether by using the Disability Discrimination Act 1995 to disseminate good practice or through other means.
Between them, the Department of Health and, especially, the Home Office could—by insisting on an individual approach to judging an insulin-dependent diabetic's fitness for employment—make a major impact on employment practices, without any extra spending. Most insulin-dependent diabetics, like other people, simply want to earn a living and to contribute to key professions and occupations.
Diabetes is a condition with which many of us have to live, and most of us manage to live normal lives. We can do any job and undertake any task that other people do, with the possible exception of sugar testing. Diabetes can, and does, strike at random. It hit me at the age of 38, probably as a result of a kidney infection, although nobody really knows why. More than 1 million of us face potential discrimination in employment, yet we have a wide variety of talents and energy to contribute. The fact that many of us are not allowed to do so, out of ignorance on the part of those who run some of our systems, is an outrage. National Diabetes Week next week will be just a small part of a campaign to dispel some of that ignorance. I hope that the Government will not only join the campaign, but lead it.
§ The Minister for Health (Mr. Gerald Malone)
I am grateful to the hon. Member for West Lancashire (Mr. Pickthall) for observing delightful courtesies at the beginning of his speech and pointing out that some of his comments would be on subjects that are not my direct departmental responsibility. I shall deal with those comments first. Although, of course, I am more than happy to accede to his request that I draw those points to the attention of my fellow Ministers, I can answer to some extent his points about blind prejudice towards people who suffer from diabetes.
It is common ground that we are happy to do what we can to dispel prejudice, to ensure a proper understanding in the public mind—especially among those who are potential employers of diabetics—of the real difficulties, and to explain why, in many circumstances, no difficulties arise from employing people who have the problem well controlled—as the hon. Gentleman rightly said.
696 I congratulate the hon. Gentleman on his timing in bringing this matter before the House, but I was rather curious about his interpretation of the declaration of Members' interests. Even in these days, I am not sure that it is necessary to declare that one is suffering from a medical condition before speaking about it in the House.
The hon. Gentleman certainly displayed his close and keen personal interests, which I know go well beyond being a sufferer. He is an active member of the all-party parliamentary group on the condition, and I know the role that he has played in the British Diabetic Association. That is why those who read the report of his speech will understand that it has great value.
I shall deal with a number of the detailed points before using the debate to set the problem in context and to explain why my Department and all its Ministers view the condition seriously. I shall also explain why I share the hon. Gentleman's optimism. We have an agenda which we can develop together, and I think that it will improve treatment not just in the long term but in the short term. I may be able to tell the House why that agenda has been pursued positively. I hope that the hon. Gentleman will agree that it is being pursued in that spirit.
The hon. Member raised two specific issues, the first of which was about registers. I am sure that everybody who is associated with the problem will be aware that we have been highly successful in incorporating diabetes into the primary care chronic disease management programme. When I was preparing for the debate, I was delighted to note that that programme has gone some 90 per cent. of the way towards achieving its targets.
In a sense, the chronic disease management programme is the core of providing the database that is necessary, and the sort of register to which the hon. Gentleman referred. I agree with him that the development of local databases is an extremely good way to measure performance against a set of targets. There is much interest in the concept of registers in the management not just of diabetes but across the spectrum of chronic diseases, and my Department takes a keen interest in that.
It is not just the chronic disease management programme that is being taken forward in this respect. Some districts have made much progress and have done a great deal of work towards building a district-based population diabetes register in collaboration with local GPs. That has been made possible with the rolling out of the chronic disease management programme. I see the role of the Government and the Department as the pulling together of the thinking that has been developed in this area, and the pooling of the efforts that have been made on registers.
I am not sure whether the hon. Gentleman is aware that the Department held a workshop on registers last summer. That was extremely useful, and I am pleased to tell him that the results will shortly be published. He was right to highlight that as an important area in which thinking is being developed. It will be taken further, and I am sure that he will participate in the debate that will follow publication of the results of that workshop.
Not surprisingly, the hon. Gentleman spoke about disposable and reusable insulin pens and about needles. Of course my Department is aware of the issue and of the views of users, who have been well and constructively represented by the BDA. It might be helpful if I set out where we stand.
697 The BDA submitted, as the Gentleman will know, a comprehensive document earlier this year, which is being considered by Ministers and officials in the Department. Although it was not my specific responsibility within the Department, I was interested to see the document in detail. It was a first-class effort in putting together a sound, economically based case as to why it might make sense to move in that direction.
The hon. Gentleman will not be surprised that I cannot give any commitment about that tonight, but I can reassure him that the matter is being treated extremely seriously. Discussions are under way, and I hope that we can make some progress towards reaching a common position and an understanding of the facts and economics that underlie the case made by the BDA.
It is not surprising that this debate has a high profile, because it precedes a very important week. Diabetes has a high profile not just in my Department but in the country as a whole. I shall use the time available to set that in context.
It may surprise the House to learn that the treatment of diabetes consumes NHS assets in excess of £1 billion per annum—between 4 and 5 per cent. of total NHS expenditure—because it is so widespread. The hon. Gentleman mentioned the fact that the extent was not quantified. The best efforts that we can make show that diagnosed and undiagnosed diabetics account for 2 per cent. of the population. I know that other figures show that it is perhaps somewhat higher to one percentage point, but even 2 per cent. shows how important and fundamental it is.
In recognition of that importance, the Department currently supports two major research projects into the illness. The hon. Gentleman touched on the importance of research, and I should like to put on record what the Department is doing. The total cost of the Department's projects is just under £1 million, within the centrally commissioned research programme. In addition, in 1993–94—the latest year for which full figures are available—the Medical Research Council spent a little over £4 million on diabetes research, made up of two components: £1 million in the MRC's research establishments, and almost £3 million in grants to universities and medical schools around the country, which, of course, carry out research projects based on local patients.
As I have mentioned, diabetes is specifically targeted by the chronic disease management programme, and that has been a success. In addition, the importance accorded to diabetes is illustrated by other work that is under way.
In August 1994, the clinical standards advisory group, an independent group giving expert advice to Health Departments and the NHS on standards of clinical care and availability of services, produced a report on standards of care for people with diabetes. The Health Departments accepted the group's main recommendation: that they should encourage purchasers of health care to ensure that there are adequate local diabetes services with appropriate standards specified in contracts. That matter has been brought to the attention of those who are at the heart of shaping patient care—the health authorities that examine these matters and decide which services will be available to local people.
698 Equally important, in the following year, in 1995, the final report of the St. Vincent task force on diabetes was published. The task force was set up in 1992, jointly by the Department and the British Diabetic Association. Its terms of reference were to advise on which aspects of the St. Vincent declaration recommendations needed to be addressed in England, and also their relative priority, and to provide detailed advice on action needed to implement the priority areas that were agreed with the Department following the advice that had been given under the first term of reference.
The task force was seen as extremely important by all interested and involved parties, so I will set out in fuller terms what has happened since. Its work was intended to be based on the recommendations made in the St. Vincent declaration, which was promulgated following the famous meeting of the European region of the World Health Organisation and the European committee of the International Diabetes Federation. The declaration recommended action in key areas and set outcome targets, which are an important way of holding health authorities accountable for progress.
The task force report was circulated widely throughout the NHS last year, and it makes recommendations about good clinical and management practice in 11 key areas. That work not only helped to raise awareness of diabetes among clinicians and the general population, but forged solid working relationships between my officials and the BDA and other professional colleagues in the service. That relationship is still paying dividends.
The Department of Health is building on the task force work in two main ways. Officials are working up detailed costings for implementation of the report's recommendations, by a survey of current provision and by means of a computer model. Probably more important is that a sub-group of the clinical outcomes group, more commonly known as COG, has been set up to develop guidance for purchasers.
The terms of reference of COG, which is a multi-professional, non-statutory committee that advises the Department on how to improve outcomes of clinical care, are to advise on the strategy for medical, nursing and therapy audit; facilitate the development of clinical and service-wide audit; disseminate good practice through sharing guidance, material and experience in audit; advise the chief medical officer and the chief nursing officer on the most appropriate action to ensure the attainment of desired clinical outcomes and on the relevant areas of research; and identify areas where measurable and sustainable improvements in health can be achieved, including examples of bad practice—which it is as important to eliminate as to establish good practice.
To highlight the importance that the Department attaches to the messages that came out of the St. Vincent task force and the CSAG reports, it set up a diabetes sub-group under COG—the clinical outcomes diabetes sub-group—whose task is to develop purchaser guidance based on the report's recommendations. A key element underpinning all that work is that it should be based firmly on medical and scientific evidence of effectiveness where possible.
The hon. Gentleman rightly emphasised the importance of ensuring that research is translated into good practice. There is a continuing body of work based on research 699 currently being undertaken, which, once it is complete, should be available to affect what happens in the field—as the hon. Gentleman suggested should happen.
I can illustrate the significant relationship forged during the sub-group's work by its diverse membership. Professor David Shaw, who chaired the St. Vincent task force so admirably, and Professor Harry Keen, chairman of the BDA, both serve on the sub-group, which will reinforce the strong link between the new group and the work of the task force. Their important experience of the life of the task force will add immeasurably to the depth of understanding of the issues in the group.
The sub-group started its work last autumn, and meets at monthly intervals. I understand that it is making excellent progress, and that is an important initiative for the Department. We in government have supported the St. Vincent initiative since its inception. I am sure that the 700 work programme that is in hand is a sensible way forward, so that we can continue to make progress and secure better treatment levels and packages of care for all people who suffer from this terrible problem.
Although the hon. Gentleman said that he would let me have an early bath, it is useful that we have been able to use the earlier conclusion of tonight's proceedings to explore a serious problem in slightly greater depth. I am grateful to him for having raised it. I am especially grateful because it gives us an opportunity to set out the work programme that is in hand. On the other matters, I repeat my reassurance. I will, of course, raise them with the Ministers responsible, and I confirm that I am happy to do so.
§ Question put and agreed to.
§ Adjourned accordingly at twenty-six minutes to Ten o' clock.