§ 8.58 p.m.
§ Lord Rowallan rose to ask Her Majesty's Government whether they will consider allowing the limbless a greater choice in deciding who their prosthetist should be and what type of artificial limb to purchase, by introducing a voucher scheme.
§ The noble Lord said: My Lords, it should be obvious that the limbless are manifestly severely disabled. Sadly, it is equally obvious that all too often they receive treatment and care of a poor standard. That is regrettable, given the strength of the National Health Service in this country.
§ For a long time I have known a young girl, now aged 23, called Lisa Murphy. She was born a thalidomide child with half of one leg missing and a deformed hand. She is a lovely girl who has never had a whole body as I have, and yet she has coped with the life that she has been allotted in the bravest and most natural way.
§ For years, as she grew up, she suffered from poor quality false limbs that were ill-fitting and uncomfortable. When she was younger, they were very often similar to the peg-leg made famous by Long John Silver. She suffered the pain and the indignity in silence and with great fortitude. She was determined to lead a normal life. Later she took up my sport of show jumping,. She was so determined to succeed and Ito compete with able-bodied people that she has represented her country as a junior rider, as a young rider and as an adult rider.
1521 She had many difficulties. There was one very famous occasion at a large agricultural show when, after having an extremely badly-fitting limb, she was going round the ring on her pony and fell off. Unfortunately, the leg went off with the pony and she went to the ground. The consequence was that medical assistance was required all around the arena as women collapsed, horrified at what they thought was a major accident. But it just shows what can happen if one has a badly fitted limb. I can assure the House that poor Lisa only had to suffer one thing; that is, the indignity of waiting for someone to bring her her leg so that she could walk out of the ring.
Lisa always walked with a limp and her spine was twisted as a result of wearing incorrectly fitted limbs, which she was assured were the best she could obtain. There was never a mention of the possibility of going private to get a different kind of leg. As far as she and her parents were concerned, there were no alternatives available. But eventually she learnt about the Dorset Orthopaedic Company, a firm of limb providers based in Ringwood, Hampshire. This world-renowned company specialises in producing cosmetically correct limbs using silicone.
Lisa has now got a leg she did not know she could get. Her local authority never advised her or her family of its availability. She says it is comfortable, and it looks like the real thing, even to having freckles and hair follicles. Now for the first time she can go on a holiday and wear a swimsuit—even a bikini—or simply wear shorts in the summer. It has given her confidence and has created an altogether much happier, contented and prettier girl. It has literally transformed her life and her outlook on it. In short, she can finally do with confidence what I do and have always been able to do as an able-bodied person—except strip off, with my belly! For the first time since I have known her she does not have a limp and if I did not know the leg was false, I honestly would not know that it was. It is so real and, importantly for Lisa, it feels like proper skin too.
I should like to quote from a very moving letter I received from a Tony Giddings, who is listening to this debate. His daughter Laura lost a leg in the Planet Hollywood explosion in Johannesburg last year. It is a very moving letter. I have no regrets about quoting it at length. It reads:
On the 25th August, 1998 our world was literally blown apart. Not only were we exposed to the horror of seeing people with their legs missing, we also had to suffer the torment of seeing our children mutilated. At one moment we had a normal happy family and the next we had a disabled daughter and a critically injured son.
Unfortunately, in Laura's case the NHS system for the care of amputees and the provision of artificial limbs was to fail on many levels. From the outset we received very little support from our regional hospital, Southampton General. They failed to explain how the system worked and what our options were … When we arrived at what in fact turned out to be the Portsmouth Limb Centre [on our first visit] no consideration was given to the fact that this was our first experience of life as an amputee. We were asked to wait in the general reception area with artificial limbs in full view … The consultant was very cold and very matter of fact in his manner, and made no attempt to talk to Laura [an eight-year old child] in order to gain her confidence. He then produced what can only be described as a 'Barbie doll leg' which was nothing like what we expected. When we asked about the availability of silicone cosmesis we were
told that it was not available on the NHS because it was too expensive. We replied that we knew that it was available because we knew a girl who had a silicone foot, and he then told us that 'we should not have anything to do with people like that'! We replied that we were prepared to pay for the silicone cosmesis only to be told 'in my opinion it is a complete waste of money and not necessary for a child'. Needless to say that we were all very distressed when we left Portsmouth Limb Centre.
At our follow-up appointment with Laura's consultant at Southampton General Hospital we said that under no circumstances would we subject Laura to the Portsmouth Limb Centre again, only to be told that in fact we had no choice … As this avenue appeared to be blocked we then asked about getting a silicone cosmesis from a private clinic to which he replied 'there are no private clinics in this country that provide artificial limbs and your only option is to stay within the NHS'.
Fortunately for Laura, both Mandy and I are very strong characters and very motivated, therefore the very next day through contacts that we had made with other amputees we found the telephone number and address for Bob Watts at Dorset Orthopaedic and duly made an appointment. When we notified Laura's consultant at Southampton General Hospital that we had made our own arrangements he demanded that we go in and see him to explain ourselves. He then followed this up by making an official complaint to our GP.
At the meeting with him he told us 'it does not matter what the bloody thing looks like, it only has to work'. He also suggested that we were harming Laura by taking her out of the system and furthermore, that he may actually refuse to treat her in the future if we did. When we asked what further treatment Laura required, he told us that it was necessary for him to cut the tendons in the back of her leg to get it straight as soon as possible, and that it would be necessary for him to trim her leg three or four times as she grew (in fact, we now know that to cut the tendons in the hack of her leg is not considered to be an acceptable practice today because of the scar tissue that it leaves, and that the best approach for the revision of her leg is for it to be trimmed once hack to II cm below her knee which will allow it to grow to an optimum length of 15 cm as an adult). We tried to explain how important it was for us as parents that Laura got the best treatment because of our [perceived] failure to protect her, only to be told 'it's not my problem, that's one for the psychiatrist'.
That is appalling treatment of someone who suffered the traumatic experience of having their leg taken away. I am glad to say that the leg produced by Dorset Orthopaedics was a good fit, which means that she has never experienced pain as a user. Moreover, because it is so life-like, she has never suffered the psychological problems that many users experience, as demonstrated when she sat on the floor of No. 10 to show it to Mrs. Blair.
I move on to the case of Helen Smith who lost all four limbs after an attack of meningitis. She said that the hospital made her out to be a silly little girl who was only bothered about her appearance. Only an idiot cannot see that any young woman wants to look pretty and normal after such a traumatic experience, rather than something that has escaped from a freak show. Yet the spokesman for Addenbrooke's hospital—the hospital where Helen was treated and lay in a coma for three weeks—Keith Day, had the effrontery and the audacity to tell the Daily Mirror newspaper who are now championing Helen's cause:
She has seen what the model Heather Mills has had from a private organisation and wants that instantly for herself but there is no way that the NHS is going to provide that. What was offered to her was functional and appropriate limbs in a timely fashion consistent with her clinical need. That is not the same as her personal aspirations".
He can say that again! With false legs that do not fit and that make her feel as if she is walking on stilts in boots that are too big and leave her feeling, even after a short walk, as if she has run a marathon, and with a hook for one arm and nothing at all for the other, she certainly has cause to complain that her personal aspirations are not being considered. I have a picture of her. I am sure no female would warn to look like that. Beside her is a lady who has had a limb put on again and she looks perfectly normal.
§ We are hearing of totally disgraceful behaviour towards these people. It must be obvious that, because amputation is not a common procedure within the NHS, many regional hospitals do not understand the trauma caused when a part of the body is removed, not only for the amputee but also for the family.
§ Helen has been told by a local NHS authority that the cost of £20,000 was too great. Yet, if she had lived in one of the 24 health authorities that do refer their amputees to this world famous clinic, she could have received the care she longs for. I was glad to learn tonight from Bob Watts of Dorset Orthopaedic that, thanks to the efforts of the Daily Mirror, she will in fact get all the limbs that she wants—indeed, all four of them.
§ I must ask: why is there an unequal artificial limb service from one region of the country to another? The McColl report said that in 1983–84 the budget for the artificial limb service was £38.5 million. In 1997, it was £30 million, representing a reduction of nearly £8 million. Is the noble Lord, Lord Hunt of Kings Heath, aware of this reduction in costs and services to the limbless? I ask him to let us know what the budget is for 1999.
§ Component hardware costs have risen dramatically in the same period; so it is obvious that the savings on the NHS have come from somewhere. The obvious casualty has been the service side. Thus, the quality of the service is being lessened. The prosthetists do not have the time to do their job properly and can only stop waiting times from rising by reducing the amount of time they spend with patients. The consequence is ill-fitting limbs without comfortable sockets, as they are not designed properly. Thus government money—taxpayers' money, my money and your Lordships' money—is being totally wasted. I am told that a good 50 per cent of the limbs produced in NHS centres do not fit. They are simply discarded and another produced. Can noble Lords imagine the trauma for the user and the waste of money for the NHS?
§ The user of artificial limbs has four needs—comfort, capability, cosmesis and caring. Comfort is needed in order to allow the user to achieve optimal function and independence and stop "ill-fitting socket induced" phantom limb pain. Capability is important in order to allow the user to have the correct limb appropriate for his or her individual lifestyle. Cosmesis is an important consideration because, if it is not cosmetically acceptable, the limb is no good for users either mentally or physically. Finally, caring is needed because, as I have shown, the lack of care is all too prevalent in our hospitals.1524
§ However, all these things should be provided as the norm rather than the exception. It should not be affected by cost but based on clinical need; and patients should not be forced into the private field. But if the Government will not insist that the NHS provides a proper limb to suit the users' needs, then why not allow the patients to get the leg they want if it is not going to cost the taxpayer money? They must enjoy the freedom of choice that we have. It must not be assumed that all users have the same needs. People who lose a limb suffer a double disfigurement: the stump and the wearing of an artificial aid. Why do we make it harder for them by not automatically providing the best that is available?
§ I ask the Minister to address the following questions in his response. When will the Government introduce a national service framework on disablement services? Are the Government serious about creating a new disablement services authority? Can the Minister let the House know what the Government intend to do about the inconsistent service provision? Will the Government consult with users, and how? Will the Government ensure that appointments to the national institute for clinical excellence and the commission for health improvement include limbless people? Will the Government give more information to potential users to include services available, types of limb available and a list of limb centres both within the NHS and the private system? Will the Government ensure that limbs are manufactured to a nationally-recognised standard? Will the Government accept the beneficial effects of silicone cosmesis, especially for young women and children?
§ In conclusion, I ask the Minister to give an assurance that this Government will accept that the way forward must be a voucher system for the limbless whereby they can go to the prosthetist of their choice and either take the NHS limb on offer or upgrade it to one of a higher specification if they have the finances and the inclination so to do? It would not cost any more; indeed, it could actually save money, as there would no waste from ill-fitting limbs. That is already working with motability where it is allowable to upgrade the size of your motorcar if you wish. It is also working with wheelchairs where, again, you can upgrade if you wish.
§ Surely it must be possible to give these unfortunate limbless people a chance to improve the quality of their lives by introducing such a system. After all, it is not their fault that they are limbless. It would also have the effect of creating centres of excellence because companies would invest long term to produce the best product. Surely a voucher or prescription system would be a more accurate way of giving the limbless the same service countrywide, instead of the take-it-or-leave-it attitude that prevails at the moment. The best reason of all for introducing such a system is that it is wanted by the industry itself, by the patients who want the freedom to choose, by the prosthetists who want to give their clients the best possible limb and by the manufacturers of the limbs as it would allow them to invest in the future—all at no cost and possibly at great savings to the NHS budget. This must be the way forward. I earnestly ask the Minister to think about this proposal very carefully.1525
§ 9.12 p.m.
§ Baroness Masham of Ilton
My Lords, I thank the noble Lord, Lord Rowallan, for giving your Lordships the opportunity to discuss this important matter, which is most important to an individual. I ask the question, and perhaps the Minister will answer it when concluding the debate; how high up the priority list in the Department of Health do prostheses and the limb fitting centres come?
I served for several years on the Yorkshire Regional Health Authority. I would look down the agenda when we were discussing plans for the years ahead. The mentally ill would be mentioned, but there would be no mention of the physically disabled population. I would press for an answer. The answer would come that they were incorporated in the budget with other miscellaneous matters. People with disabilities do not deserve to be submerged and sunk without trace!
The House of Lords has had a busy day today with two long debates before this one. Here we are again at the end of a long agenda. The Government are making many changes in the National Health Service; indeed, now is the time to raise this Cinderella service. There seem to be plans to make local communities more responsible for their health services. As many doctors working in the primary health care field have little knowledge and even less interest in long-term disability, I hope the Government will realise that disabled people who need prostheses need what is correct and comfortable for them. They need choice. I have visited limb fitting centres both in Leeds and London. I found dedicated people working to the best of their ability having to spend half their time trying to raise money. They did not have very up-to-date materials to work with and the work places were far from modern.
I hope that the Minister will be able to tell your Lordships tonight how the National Institute for Clinical Excellence (NICE) will work. I have a real fear that it may spend most of its time working on the drugs side. I hope that the Government will have the sense to divide it up so that there is a department of NICE that is concerned with drugs and a department that is concerned with looking after all clinical treatments in the health service, including the limb fitting prosthesis centres.
We who respect and honour our National Health Service want it to be the best in the world. It should be consistent across the country. It should have high standards and it should be the duty of NICE to oversee those standards. It should monitor health authorities. The Limbless Association tells me that health authorities across the country differ considerably. Some will refer patients to where they will get the best prostheses and service, others will not.
I quote from the Express of Saturday 20th March:Plea of student left without arms and legs by meningitis".The article states:Helen Smith, who had her arms and legs amputated after contracting meningitis claims that the Cambridgeshire Health Authority is refusing to pay for the artificial limbs she so desperately needs. Doctors were forced to amputate to save her life because all her limbs had a gangrene-type infection caused by blood poisoning. Helen claims independent specialists have assessed her as being suitable for myo-electric artificial hands which would give her a 1526 new lease of life and she could get back to work. She said 'I thought I would get the best available limbs on the NHS, but the artificial legs I got were useless'. The NHS has not been able to provide this young lady with what she feels is necessary for her needs".
The best artificial arm I saw at an exhibition was made in Italy. The colour and texture were excellent and even the veins looked realistic. We are in Europe, in the Common Market. If Italian made artificial arms are better than others, we should buy Italian ones. At another health conference I attended I found that the best food trolleys were French made. The corners were rounded so that they could be easily cleaned. Given the increase in infections in hospitals we should buy these French-made trolleys. If we do not do so, what is the point of being in the Common Market?
Local health authorities can become very parochial, with little interest in matters regarding disability. I agree with Empower—a consortium of organisations dealing with disabilities—which states that the Government should establish a disablement services authority to address the widespread and expensive disparity in the quality of disablement services provision.
The Government speak of a joined-up seamless service. I find with disability services—especially with social services—that everything seems to be contracted out, with more and more fragmentation and more and more complicated forms. People with severe disability and their families do not need this increasing bureaucracy. They need the best possible equipment, be it prostheses, wheelchairs or hearing aids, so that they can get on with their lives. I do not think that a voucher scheme for prostheses is logical as there needs to be a good repair service and support from specialists on account of the ongoing changes and needs. But above all, patients need choice.
Some weeks ago we were all shocked by the horrific bomb in Soho. Innocent people had their limbs ripped off. There was a great deal of drama at that time. The Home Secretary and His Royal Highness the Prince of Wales visited the scene. That was all very laudable, but who picks up the pieces and tries to put them together again? It is our National Health Service. I hope that good limbs of the best silicon material will be provided for these unfortunate victims if that is the best thing for them.
There is far more to contend with than just artificial limbs. There is the coming to terms with the traumatic injury; there are psychological aspects, which sometimes get neglected; there is the phantom pain that has to be fought. I hope these patients are progressing well.
Again, in some areas rehabilitation services are better than in other health service authorities, a situation that I hope NICE will rectify.
When I was coming to your Lordships' House yesterday, my taxi driver told me about a friend of his who had lost his leg through an accident. He had become depressed and had tried to commit suicide. It had taken him two years to come to terms with his condition. Now he is fine and goes out dancing. I had the pleasure to meet Douglas Bader, He told me that he 1527 had to have at least four legs, and one black leg for evening wear. As the noble Lord, Lord Rowallan, said, legs do break.
Prostheses do not cover limbs only; they replace ears, nipples, breasts and parts of faces. It is a most important service for those who need it. It needs pushing up the health agenda at both national and local levels. I hope the Minister will help to do this.
§ 9.21 p.m.
§ Lord Addington
My Lords, perhaps I may preface my remarks by commenting on the speech of the noble Lord, Lord Rowallan. His description of the consultant reminded me of the worst examples of professionals treating someone who comes into their care with a degree of contempt. It occurs in all spheres but we have heard about it far too often in cases of disability. That kind of consultant will say, "I know best, keep quiet", even when he does not know best. A long time ago someone said to me: "Always trust someone who admits that they do not know everything and might be wrong". If we can encourage all professionals—in this field and in others—to admit that they might not know everything, we probably would be doing ourselves a great many favours in future. The minute one sets an absolute in this field and does not open up slightly, one will make mistakes—if not on one occasion then on the next.
As the noble Lord, Lord Rowallan, and the noble Baroness, Lady Masham, have said, certain groups of the amputee society—the young and those who wish to take part in some sort of athletic activity—have particular problems and needs in this field. I am a sportsman. We have reached a stage of technical skill to enable people to sprint with an artificial leg. I would not have kept up with a champion fitted with artificial limbs—certainly with one artificial limb—even when I was younger and fitter than I am today.
The reason for such progress is that technology has enabled the foot to store energy like a spring. I forget the correct terminology for the substances. Basically energy is stored which enables one to move and flex and to generate power to the rest of the body. Such technology should be made generally available. Initially, at least, it should be made available to younger people when they lose limbs. Thankfully, there are only 5,000 amputees a year, and the figure is likely to go down as surgical techniques and after-care for damaged limbs improve.
We must ensure that this technology is readily available. As has already been pointed out, we are talking about someone's quality of life. If the limb enables someone to take part in day-to-day life on a virtually normal basis—or at least gives the appearance of normality—that is important, at least in the short term. Many disabled people need to feel that they are once again a part of society and not cut off. If we can do that we will be reducing many of the psychological problems of isolation which are being ignored.
It is not good enough merely to accept that a person can make it from one position to another, slowly and painfully. I have taken part in many education debates 1528 dealing with the subject of special needs. We have now established that any help given in that field, and in most other fields of disability, should be based on the needs of individuals. They should be allowed to take part on as near normal a basis as possible. We cannot simply class people together when it comes to help.
That means that there must be flexibility in our approach to the type of limb that is provided; there must be provision for each person on the basis of that person's lifestyle, or the lifestyle that he or she can reasonably expect. That definition will feed lawyers for years. They will argue and fight; there will be case law. But we must strive towards that goal.
As to a voucher scheme, I say to the noble Lord, Lord Rowallan, that I am shocked by his moderation. It may be a first step. But his idea is that it should merely be there within the NHS. The noble Lord may be right. But unless we begin to address the problem as being individually based, we shall not get very far.
To return briefly to sport, under the current system there should be some kind of central referring body for those who are involved in sport. At present. a person living in one area may receive assessment and individual help, but a person living in another area may not. Leeds has been pointed out to me as a good area for referrals for artificial sports limbs, but apparently people living in Sheffield do not receive the same kind of help. The two places are not that far apart. Surely we can make sure that within the NHS, which is after all a national service, people have access to the best. If there is a bureaucratic problem preventing that, this House and the other place change laws and regulations all the time. Indeed, we are often not required to do that ourselves; we merely have to nod at others, and they do it for us. Surely something like that can be done.
Last time, the Paralympics was used as a kind of damp sponge to the bruised pride of a nation not winning enough gold medals in the main Olympics. Surely, if disabled athletes are to be held up as an example and used in this way, disabled athletes—or in this case, one group of disabled athletes—deserve some consideration. They are few in number, but they are specialist cases. If a few rules are not convenient to those cases, I suggest that they should be changed. This is a matter where a little common sense and the discarding of bureaucracy would make all the difference.
§ 9.27 p.m.
§ Lord Hussey of North Bradley
My Lords, I must first declare several interests. I have worn an artificial limb for over 55 years. I served on the committee chaired by the noble Lord, Lord McColl. I am on the council of the British Limbless Ex-Servicemen's Association, and I am the patron of the Association of Prosthetists and Orthotists (BAPO). As I have a prosthesis on a leg that was amputated and an orthosis on the leg that was paralysed as a result of a spinal wound, I was a soft touch for that job.
Many changes have taken place in the 55 years that I have worn an artificial limb. Although I am appalled by some of the points raised by the noble Lord, 1529 Lord Rowallan, and the noble Baroness, Lady Masham, I can only speak from my own experience, although I shall refer to those problems later.
My experience has been that there has been a huge improvement in the equipment made available to us and in the attitude of people towards the limbless. For instance, in the Holderness Centre at Charing Cross Hospital, which I attend—I previously attended Roehampton—there is now a sister permanently on duty. That is a great help, particularly for those of us who have problems with our stump. It was not always like that. On one occasion, about 20 years after the war, I had been salmon fishing in Scotland and had fallen into the river, which often happened. When I took the artificial leg back to Roehampton it was not in a very good condition. The doctor who examined me asked me what I had been doing with the limb. I told him that I had been fishing for salmon. He said, "You have no right to do that. You have no right to treat government property like this". I replied in language not suitable for your Lordships' House.
Conditions in medicine have changed. In the Falklands war, people who were wounded and lost limbs were frequently in the hands of doctors in three or four hours. It was different for some of us, I did not see a doctor for three days and then it was a German. He was all right; he took off my leg; he gave me an anaesthetic, thank heaven, I was a bit windy about that.
Things have changed in other ways as well, but not in the number of amputations. I understand that 50,000 amputations take place, roughly as many as 20 or 30 years ago. What has changed is the reason for amputations. Happily we have far fewer military amputations, and I hope that that will remain true in spite of what is happening in the Balkans. But there are many more as a result of diabetes, vascular problems and similar difficulties.
Overall, I have to say that in my experience things are much better. I have a new prosthesis called a "siliposis sheaf" which has completely changed the comfort with which I can wear my artificial limb. It was volunteered to me quite arbitrarily and freely by my prosthetist. The BAPO has an exhibition every year at its conference and I am honoured to be a patron of the society. It is patronised by a large number of prosthetists from all over the country, and by virtually all the limb manufacturers. It is a fine exhibition, a wonderful example of the changes that have been made.
I am encouraged by that. I am very discouraged and distressed by the experiences of the noble Lord, Lord Rowallan, and the people he has met. I can only say that it has not been my experience, but I must have been lucky. It is appalling to think that the limbless could be treated like that. For women and children the disfigurement is a worse mental problem than for some of us who are older.
I can only speak from my experience which is that overall the prosthetists are much better, the sisters are there to help, the equipment is much better. Clearly there are faults and I am sad to hear some of the stories which we have heard this evening. But it is only fair to 1530 say that there are two sides to the issue. That is not what I have seen and heard. I in no way dispute the experiences of the people noble Lords have met. I can only say that from my experience of BAPO and the Holderness Centre there are many dedicated prosthetists, dedicated sisters and very much better equipment. If one has problems one is treated very well, alternative suggestions are made. So I can only imagine that I have been lucky and some people have been unlucky. That is bad. It is appalling that people who have lost a limb should be treated in the way we have heard today.
It is difficult. The noble Baroness mentioned the problem of arms. Arms have always been difficult, and if better arms are made in Italy than in this country we should use them. When I was at Roehampton towards the end of the war, we used to argue whether it was better to lose an arm than a leg. Funnily enough, the people who lost a leg thought it much better to lose a leg than an arm; the people who had lost an arm thought it much letter to lose an arm than a leg. So on the whole we were a fairly satisfied bunch.
Nevertheless, it is a terrible problem. If treatment like that happens, as it clearly does, in various parts of the country, it should be dealt with firmly by the authorities. It should be referred to higher authorities, and I have no doubt that the Minister will look into it. I hope that it is an exception; I cannot tell whether it is; I can only speak from my own experience. If such things happen, then no trouble or expense should be spared to put them right.
§ 9.34 p.m.
§ Lord Clement-Jones
My Lords, like other noble Lords I thank the noble Lord. Lord Rowallan, for introducing this subject tonight. He introduced the matter very movingly and with a considerable degree of anger in his voice, which all of us who heard his speech can well understand in view of the case histories he described. We have heard some other remarkable speeches in a very short debate, notably that of the noble Baroness, Lady Masham of Ilton. There was also a rather encouraging and inspiring speech by the noble Lord, Lord Hussey, the only contributor to this debate who is himself "a user" of prosthetics.
The noble Lord, Lord Rowallan, argued for the principle of top-up for health equipment where patients are offered a basic service on the NHS but then pay privately to obtain the best quality equipment. But, as my noble friend Lord Addington made pretty clear, without good evidence of the benefits of a voucher scheme we on these Benches are very doubtful about going further along this road. We believe that this is the thin end of a rather thick wedge. Currently, there is a voucher system for wheelchairs which was set up some two years ago. It is being reviewed by the NHS Supplies Authority. Perhaps the Minister can inform the House of the current status of that review and provide a brief preview of its conclusions. It is very important in this context to see what has been the experience in those circumstances.
I note that the Health Minister in the Lords in March 1989, the noble Baroness, Lady Jay, expressed reservations about a voucher scheme because of the 1531 specialised specification of artificial limbs and the need for expert clinical supervision when fitting them. Our reservations, however, are rather broader than that and are based perhaps on principle rather than purely the difficulties of the mechanics. We believe that this has the potential to strike at the very heart of a universal high quality NHS provision of prosthetics.
The key to high quality modern equipment being available at the right price, whether it be prosthetics, wheelchairs or hearing aids, is volume supply. The purchasing power of the NHS Supplies Authority is some £5 billion in total, which is enormous. Simply by specifying equipment for use in the NHS the authority can negotiate prices at something like one tenth of those for private supply. We have doubts in that context as to whether the NHS Supplies Authority is keeping abreast of modern technology. For example, no digital hearing aids are supplied on the NHS. The cost of a digital hearing aid supplied privately is between £1,000 and £2,000 compared with a hearing aid under the NHS at a cost approaching £90. There would be a considerable saving if one gained volume through purchase by the NHS Supplies Authority.
The noble Lord, Lord Rowallan, spoke eloquently about a number of case histories, in particular the recent case of Helen Smith. That is a very cautionary tale. As he explained and the noble Baroness, Lady Masham of Ilton, described, Helen Smith had septicaemia arising from meningitis and had to have all four limbs amputated. To get the most modern prosthetic limbs with good cosmetic appearance meant that she faced a cost of thousands of pounds per limb. To pay privately for those prosthetics cannot be acceptable.
The present Minister, the noble Baroness, Lady Hayman, said in reply to a Written Question on this subject last September:The Government will, as part of its modernisation programme, strive to ensure that all patient care is delivered quickly, consistently and at the highest possible standards".—[Official Report, 3/9/98; col. WA 27.]The Public Accounts Committee, in its report of November 1997 on the NHS Supplies Authority, expected the authority to maintain and develop a,healthy dialogue between all parties involved with a view to maintaining healthy competition and to enable the NHS to benefit to the full from innovative ideas and products",which is just what we are talking about today.
In that context, I very much welcome the formation by NHS Supplies of the Prosthetic Strategic Supply Group, referred to in the government response of February 1998 to the report and also in the Minister's reply to the Question in September.
The last annual report of the NHS Supplies Authority was very encouraging about the intentions of the strategic supply group. I understand that it has so far met four times. We would be pleased to hear from the Minister what the outcome of its work has been thus far. It was designed to bring the manufacturers, users and clinicians together to discuss precisely what needs the users have and how best they can be provided for. This is a very important point in that context.
1532 Has the group, for instance, discussed the emPOWER Prostheses and Orthoses Users' Charter which specifies a user's four main needs, as referred to very cogently by the noble Lord, Lord Rowallan? These are the need for comfort, capability, cosmesis and caring, together with the need to recognise a user's changing needs.
As the Department of Health is only too well aware, there is a very strong consensus that current arrangements for the provision of disablement services are inadequate. EmPOWER, which has a strong involvement with the Limbless Association, believes that reinstatement as a special health authority of the Disablement Services Authority, which was merged with the NHS in 1991 and which was set up on the recommendation of the noble Lord, Lord McColl, following his review of artificial limb and appliance services and the establishment of a national service framework for disablement services, is essential if the situation is to improve. Are these matters under consideration by the Department of Health? If so, perhaps the Minister can tell us what the timetable is and whether the Government are really contemplating their introduction?
The noble Baroness, Lady Masham of Ilton, made a point about the national institute for clinical excellence. What will be its role? Will it purely be around the question of drugs or will it be about prosthetics and so on? Will it have that wider role?
The essence of this matter, as clearly stated by the noble Lord, Lord Rowallan, is the whole question of freedom of choice for users within the NHS system. I may not agree with his final recommendations. However, we all agree on the principle that the clinical needs of the user should take precedence. It should not be necessary for individuals to be forced into private care in order for them to have a suitable prosthesis to meet their needs.
I look forward very much to hearing the Minister's response and also to hearing from the noble Lord, Lord McColl, how he thinks matters have progressed since his original report.
§ 9.43 p.m.
§ Lord McColl of Dulwich
My Lords, I too would like to add my thanks to the noble Lord, Lord Rowallan, for introducing this debate. I should at the outset declare an interest. I too am a member of BLESMA, I am the President of the Limbless Association and I was a member of the working party, along with the noble Lord, Lord Hussey of North Bradley and the noble Lord, Lord Griffiths of Fforestfach.
We were looking into the whole of the artificial limb and wheelchair service in 1985. We were delighted when almost all our recommendations were accepted by the Government in 1986. The Minister for Disabled People at that time was extremely helpful—an outstanding Minister; his name is John Major.
One of our recommendations was that there should be a voucher system for the wheelchair service. We were all very much aware of the problems of instituting such a system. Our original idea was that when a disabled person was assessed for a wheelchair, there should be 1533 a choice of either accepting the wheelchair which was deemed to be suitable for that type of disability or having a voucher which would equate to the value of the wheelchair on offer plus the cost of maintenance.
The idea of the voucher system was to provide an additional incentive for the providers to give a really good service. This was so because they would also have at the back of their minds the fact that a disabled person could reject the wheelchair on offer and take the voucher, add some of their own money and then go elsewhere for service. The disadvantage of the present voucher system for wheelchairs is that if disabled people take the voucher and purchase their own wheelchairs they have to pay for its maintenance. That is an unattractive proposition for disabled people. If the Government were to introduce a voucher system for artificial limbs, the same problem would obtain.
We have heard complaints, especially from young women who quite naturally want an artificial leg that looks as near as possible to normal. In many cases, that is not supplied. The name Heather Mills will be familiar to most of your Lordships. She was a successful professional model, who some years ago went for a holiday in Yugoslavia before the present troubles. She was enjoying her holiday when war broke out. She thought she had better leave the country quickly but then she decided to stay behind to see whether there was any way in which she could help. She came across many amputees. She was instrumental in getting some spare artificial limbs from the United Kingdom that were no longer required, either because they did not fit the first time or because they were no longer of use. She managed to obtain around 24,000 artificial limbs. She supplied a tremendous service and was a great inspiration. She worked very hard at that and then thought that she had better have a holiday.
She came back to London and within 24 hours was knocked down by a motorcyclist. Her leg was so badly injured that she had to have it amputated. Such is the marvellous character of Heather Mills that she rose above that disaster and said, "Well, now I really will know all about artificial legs". She has been a great tower of strength in her efforts to improve the service. She came to your Lordships' House for tea last summer wearing sandals and all her toenails were painted. She had secured an artificial leg which looked exactly like the real thing, but not alas! in the National Health Service but in the private sector.
The Government seem to have a problem with the private sector and what they regard as cosmesis and cosmetic surgery. The Government have deprived thousands of patients of the opportunity of having their varicose veins, sebaceous cysts and lipomas operated on under the NHS on the basis that they are cosmetic operations. Noble Lords are aware that cosmetic surgery is to improve the appearance of the patient. But many of these lesions, sebaceous cysts and lipomas are not visible. Sebaceous cysts are often on the scalp so taking them out can never be described as cosmetic surgery. They present patients with a problem in that every time they comb their hair they bump into one of these things—sometimes they are multiple—and they can be 1534 very painful. Lipomas are fatty tumours which in many cases are not at all obvious, and varicose veins are often concealed by trousers.
The other problem the Government have is their very obvious opposition and even hatred towards the whole idea of private practice. We have the chairman of the Select Committee on Health who was reported in the Health Service Journal as saying:I hate the bastards".He was referring to those who do private practice. The Secretary of State for Health has also recorded his disdain for the whole subject of private practice. The Government are obviously in a slightly awkward position of their own making. Thousands of patients are deprived of operations. Patients have to go into the private sector. The do not necessarily want to go there and many of them cannot afford to. We have a situation where the private sector is despised by the Government. Will the Government review their attitude to the private sector and to cosmesis, artificial limbs and cosmetic surgery in general?
Many of the points that I was going to make have already been made and so I will not repeat them. As my noble friend Lord Rowallan said, for the consortium emPOWER to achieve all its goals it is essential that the user should have freedom of choice. When it comes to discussion about costs, if a really high-class artificial limb is properly fitted first time, subsequent alterations are less likely and the total cost may be less.
I had the privilege of working with my noble friend Lord Holderness who chaired the Disablement Services Authority which was set up in 1986 to implement our recommendations. Like the noble Lord, Lord Hussey of North Bradley, my noble friend Lord Holderness was also severely injured in the war. One of the moving features about these veterans is that you rarely hear them complain about anything to do with their disability. They simply get on with it, without fuss or complaint. That is another compelling reason why every possible effort should be made to provide them, and indeed all amputees, with the very best service we can.
§ 9.50 p.m.
§ Lord Hunt of Kings Heath
My Lords, like other noble Lords, I am extremely grateful to the noble Lord, Lord Rowallan, for putting down the Question this evening and bringing to our attention a number of important issues that the health service has to tackle over the next few years. Like the noble Lord, I, too, salute the courage of so many people who have lost limbs and who therefore have to look to the NHS for support. It is evident from tonight's debate that all Members of your Lordships' House who have spoken share the Government's concern to provide the highest possible standard of service to people who have the misfortune to lose a limb.
I am well aware that a number of noble Lords have expressed concerns about current services. I wish to come back to some of them in a moment. It is important to put them in context.
1535 The NHS looks after 66.000 existing amputees and deals with about 4,000 new cases every year. Prosthetic services are delivered to patients through 33 disablement services centres in England. The noble Lord, Lord Rowallan, was critical of some of those services, but perhaps I may say to him and other noble Lords at the outset that I believe the standard and volume of service provision of artificial limbs have improved over the past few years. That does not mean to say that there is no further room for improvement, but it is important, as the noble Lord, Lord Hussey, put to us, that we should accept and acknowledge the improvements that have taken place: the change of emphasis simply from limb fitting to providing a wider rehabilitation service; the development of the prosthetic profession, which in itself is improving the quality of service; the development of larger centres which are able to offer a greater continuity of expertise and access to other services; and the lead that this country has taken in a number of research areas. In acknowledging the good work that has taken place, it is right for me to pay tribute to the work which the noble Lord, Lord McColl, has undertaken in the development of those services.
As we have heard, he chaired the working party on the quality management of artificial limb and wheelchair services provided by centrally managed regional artificial limb and appliance centres. In response to his report, the Government established the Disablement Services Authority to manage the transition of these services to the NHS. It is readily apparent that the noble Lord, Lord McColl, and his team exerted a great influence on the development of artificial limb services and, as noble Lords have heard tonight, although he was critical of the Government in one or two places, he continues to make a keen and constructive contribution to this important debate.
The key focus of our debate, apart from the general quality of services, is the potential of a voucher scheme. Before addressing the issue of a voucher scheme for artificial limb provision, I think that it would be helpful if I said a little more about the scheme which operates for wheelchair services.
The noble Lord, Lord McColl, provided some useful information about this. I shall respond particularly to the questions raised by the noble Lord, Lord Clement-Jones, on this matter because I think it is apposite to our debate. In February 1996 the then government announced their intention to introduce a voucher scheme for users of wheelchair services, the first such scheme within the NHS. The concept was to enable disabled people to exercise greater choice in the selection of a wheelchair appropriate to their individual mobility needs. Patients would have the option of accepting the wheelchair which the NHS would normally provide or of having a voucher of equivalent value which they could use towards the purchase of a higher specification wheelchair of their choice.
The scheme was feasible particularly because of the existence of a network of local independent distributors able to offer users a wide range of 1536 alternative wheelchairs and to provide them with a reliable after-sales service. The legal provision allowing for the scheme to be introduced was set out in the National Health Service (Wheelchair Charges) Regulations 1996. This applies to wheelchair services only; there is no provision for it to apply to other NHS services.
The voucher scheme received a mixed welcome. Some user groups were concerned that it would only benefit those who could afford to contribute to a better wheelchair and that it would lead to a two-tier service. Implementation of the voucher scheme was further complicated by the simultaneous introduction of electrically powered indoor/outdoor wheelchairs. This was a welcome development to which health authorities and service providers gave priority. Because of that, many voucher schemes were slow in getting off the ground and it is only within the past 18 months that we have begun to have any measure of user interest. By the end of March this year, 5,314 patients had used the voucher scheme.
As the noble Lord, Lord Clement-Jones, suggested, to give us a clearer picture of how effective these initiatives have been, my honourable friend Mr Paul Boateng commissioned an evaluation of both the powered wheelchair and voucher scheme initiatives. This is being conducted by the Health Economics Consortium of York University and we expect to receive its draft report next month, so I am afraid I cannot anticipate the likely conclusions in that report.
I should, however, say that we recognise that the success or otherwise of this initiative cannot be judged by uptake alone. Different wheelchair services have different populations and both demographic and socio-economic factors might well influence the number of patients who could respond to a voucher scheme. I am hopeful that the York University evaluation will help us better understand such issues. However, until that report is available and we have time to study it we would wish to reserve judgment on how successfully the wheelchair voucher scheme is operating.
That leads me to the question of a voucher scheme for users of artificial limb services. Although the Government would endorse the aim of enabling disabled people to exercise greater choice in their care, I very much agree with the points put in relation to that by noble Lords tonight. Extending the concept of a voucher scheme to other services is not necessarily the only way, or indeed the best way, of proceeding. It is not just the question of the general principle which the noble Lord, Lord Clement-Jones, referred to. I am also aware of, and noble Lords have commented on, the media attention concerning the provision of silicone coverings for artificial limbs by a private company in Dorset. I share this House's concern about the particularly poignant stories of the young people who, quite understandably, would like to have silicone coverings which better match the profile of their remaining arm or leg. The noble Lard, Lord Rowallan, put that point very clearly.
1537 As I have said, the NHS already looks after 66,000 existing amputees and deals with about 4,000 new cases every year. We have to ensure, in relation to all these users, that the available resources are devoted to giving them a fair and consistently high standard of service.
As I have mentioned, services are currently available through 33 regional or sub-regional disablement services centres in England. Each has a contract with a manufacturer who employs a team of prosthetists and technicians to design and fit a limb which is appropriate to the clinical and functional needs of each individual patient. The contractors work within the centres and alongside other NHS professionals to ensure that a well co-ordinated service is provided.
Unlike the wheelchair industry, demand for private limbs is relatively low—I believe that fewer than 2 per cent of amputees have limbs provided privately.
§ Lord Rowallan
My Lords, I thank the noble Lord for giving way. Will he confirm that that low demand is possibly because people are not told of the existence of the private service? In fact, people are being positively denied the knowledge that there is such a thing as a silicone-coated limb available from the private service.
§ Lord Hunt of Kings Heath
My Lords, it is difficult to speculate whether lack of knowledge is responsible for the relatively low take-up in the private sector. All that I can say is that it is important that as much information as possible is available to users of all NHS services. I am sure that all noble Lords would agree with that.
The point that I am trying to get across is that at the moment, if given a voucher, patients would have very limited options for exercising choice. More importantly—this point was made by the noble Baroness, Lady Masham—there are potential disadvantages in separating the limb supply from the clinical prescription, multi-disciplinary care and long-term support given to the patient.
I have every reason to believe that the vast majority of patients receiving artificial limbs within the NHS are satisfied by the quality of care that they receive. However, I was concerned when the noble Lord, Lord Rowallan, suggested that 50 per cent of limbs do not fit. We have no evidence of that, but if the noble Lord has any such evidence, we shall of course consider it. I am aware that some patients do not find their limbs comfortable, that achieving a good fit takes repeated visits to their disablement services centre, or that the appearance or functional performance of their limb is not what they would wish. Noble Lords have spoken in similar vein this evening.
That brings me to some of the questions that I have been asked about, in particular, the possibility of introducing a national service framework for disablement services. All that I can say at the moment is that the Government have already announced the 1538 first four frameworks. They will deal with mental health, coronary heart disease, older people and diabetes. It is expected that there will be one new framework per year. I cannot say any more on that, but the Government must take a number of factors and priorities into account. The views expressed tonight by noble Lords will be passed into that decision-making process.
In relation to the suggestion about a new disablement services authority, I should report to the House that my honourable friend Mr John Hutton has already given the matter some careful consideration. He has advised the charity consortium, emPOWER, that the establishment of a new disablement services authority does not fit with our model of service development. However, we understand why that has been proposed, and particularly the need for greater consistency in the provision of services for disabled people across the country.
Our preferred direction is very much through improving the quality of services, as we laid out in our White Paper, A First Class Service. The noble Baroness, Lady Masham, referred to the work of the National Institute for Clinical Excellence and of the Commission for Health Improvement. It is early days to go into details about the way in which NICE, in particular, will carry out its work. However, I very much take on board the point raised by the noble Baroness about ensuring that it develops a comprehensive approach to services. I believe that it will be a very powerful mechanism for producing authoritative guidance on clinical effectiveness and, together with CHIMP, for investigating poor services and improving quality across the board. That in itself is bound to lead to greater consistency throughout the National Health Service. I also feel confident that if there are sustained problems within the artificial limbs services, the Government would wish to bring the resources of CHIMP and NICE to bear on those issues.
§ Baroness Masham of Ilton
My Lords, does the Minister agree that the biggest waste to the National Health Service is the suing of bad practice by patients?
§ Lord Hunt of Kings Heath
My Lords, I could not agree more. The noble Baroness makes a very powerful point. As a former representative of health authorities and trusts, I am only too well aware of the cost to the NHS and its patients of malpractice suits.
Time is pressing on and I am conscious that I have not answered all the points put to me. However, I wish to comment on the question of getting people involved, because the noble Lord, Lord Rowallan, raised that important matter. We are keen to ensure this. It is part of the development of a proper partnership between the NHS and its patients. The regular meetings between emPOWER and my honourable friend Mr. John Hutton is a visible sign of wishing to do that. I am also glad to be able to 1539 tell the House that the supplies group mentioned by the noble Lord, Lord Clement-Jones, which is helping the NHS supplies authority to make the tendering process for artificial limb contractor services more effective and bringing together manufacturing and contractors and the staff of artificial limbs services, involves users of the service in those meetings. That is a real opportunity to bring the voice of the users right to the heart of the decision-making process in those areas. I take the point raised by the noble Lord about the potential of NHS supplies and in particular the procurement group. That should help us improve the quality of services.
1540 I am conscious that I have not touched on all the issues noble Lords raised, but I hope that it will be recognised that the Government very much take to heart the need to ensure that the undoubted improvements which have taken place in these services during the past few years continue; and that the mechanisms, particularly the use of CHIMP and NICE, should assist us in ensuring a greater consistency in the future. I do not believe that we should underestimate the achievements of the people working in those services at present, nor the courage of those who use the services.
§ House adjourned at seven minutes past ten o'clock.