§ Motion made, and Question proposed, That this House do now adjourn.—[Mr. Arbuthnot.]
2.28 pm§ Miss Joan Lestor (Eccles)There can be no one in the House, or in the country, who does not know of the case of my small constituent, Laura Davies. Her story and that of her family's struggle with bureaucracy is harrowing and raises important and fundamental questions of principle which I believe have not been properly addressed by the Department of Health or by the Secretary of State. I seek clarification on those points.
As the Minister is aware, Laura is four years old. She was born with a perished bowel and her childhood so far has been marked by pain and discomfort and the restrictions resulting from the need to be fed intravenously.
Throughout her short life Laura has had the tremendous support of a loving family and many friends. She has also received excellent treatment at the Royal Manchester children's hospital in Pendelbury in my constituency. I pay tribute to the care and dedication of the staff at the hospital and, in particular, to Laura's consultant, Mr. Adrian Bianchi. That medical care was available through the national health service and it was the best care so far that money could buy for a child in Laura's position, but of course free to her under the NHS.
§ It being half past Two o'clock, the motion for the Adjournment of the House lapsed, without Question put.
§ Motion made, and Question proposed, That this House do now adjourn.—[Mr. Arbuthnot.]
§ Miss LestorLast October, Laura became so ill that she had to be ventilated on a machine for two months. She recovered, but soon fell ill again. As a result, she now has severe liver damage. It was agreed that Laura was in urgent need of a life-saving operation to rebuild her bowel and to replace her liver. [Interruption.] I wish that the Minister would listen. Many people are interested in this case and the Minister should concentrate on what I have to say.
What happened next was a nightmare that no parent should ever have to live through, with delay following confusion. It is the experience of that family—an experience that I have reason to believe is shared or could be shared by other families—which I want to bring to the attention of the House. I hope that the Minister will be able to give straight answers to my questions and clarify the position so that others who find themselves in a similar situation will not have to suffer the private and now very public agonies of the Davies family.
Mr. and Mrs. Davies were told that the sophisticated operation that Laura needed was not available in this country. They then discovered, almost by chance it seems, that surgeons at the university of Pittsburgh in Pennsylvania had experience in that area and might be prepared to undertake the operation on Laura. However, there was of course a price tag—£350,000. The desperate race was on to raise the money because we were told that it was not available under the NHS.
What was the Department of Health's response to that appeal for funds? It would appear that there is no financial provision within current Health Department statutes to fund operations outside this country or the European 684 Community. Is it true, as I understand it to be, that if the Department feels that there is a strong case to be made, it can apply to the Treasury for special additional funding? I should be grateful if the Minister would confirm that that is the case and, if so, explain why the decision to apply for special funding was not made in this specific instance.
Salford health authority decided that it had to respond to the Davies appeal for financial help. There was no money in its regional reserve, but officers decided that they would pledge about £7,000, the equivalent of 1 per cent. of their total budget for medical treatment within the EEC. In addition, they agreed to help set up a special bank account on behalf of the charitable appeal.
The response of my constituents in Eccles was incredible. I am sure that many of my colleagues will also have direct experience of similar fund-raising activities. From school children to firemen, from pensioners to bank clerks, it seems that every section of the Eccles community was rallying around to fill the gap left by the health service.
The Manchester Evening News devoted page after page to the campaign and the struggle of Mr. and Mrs. Davies was subsequently highlighted on national television and money came in from all parts of the country. A petition was circulated and presented to me regarding the situation of funding by the NHS. To date, £200,000 has been raised —a magnificent achievement marred only by a cruel hoaxer who contacted fundraisers last week to offer £250,000 towards the operation. Imagine the hopes raised by such an apparently generous offer, only to be dashed when it came out that it was a hoax. Whoever that person is, I want that person to know that he is despised by the entire country.
This week we received the wonderful news that King Fahd of Saudi Arabia had guaranteed to fund the balance of the money needed to send Laura to Pittsburgh. I take this opportunity formally to thank King Fahd on behalf of the Davies family and all my constituents and their supporters for that magnificent gesture.
However, while all that activity was going on Laura's health was rapidly deteriorating. Fund raising, particularly of the magnitude in this case, takes time, although we have done remarkably well. I am afraid that time is something which little Laura does not have on her side. She is now very ill and it is unlikely that she will be able to cope with the stress of a transatlantic flight.
What were the Government doing while the fund raising was going on? I wrote to the Secretary of State twice, on 22 April and again on 6 May. I received a formal reply yesterday after protesting that I had not received a reply. In the meantime, I accompanied Mr. Davies last week to a meeting initiated by him with the Chief Medical Officer at Richmond house. I am trying to be fair. I do not want to make political capital out of the case. Prior to writing to me the Secretary of State said that she was willing to see Mr. Davies and me later if we felt that it would be useful for us all to meet. But my contact during those three weeks with the Department to find out its position on funding was disappointing to say the least.
When we met the Chief Medical Officer last week he revealed at this late stage that a leading British surgeon Professor Sir Roy Calne at Addenbrookes hospital in Cambridge was prepared to give the Davies a second opinion. Laura has now been seen by Sir Roy and her parents will decide on Monday whether they will give their permission for him to carry out pioneering surgery on their daughter—I understand that he is willing to do so.
685 We are now waiting for Laura's parents to make that difficult decision. Do they go to Pittsburgh or have the operation done in Britain? Of course, we have to wait for a liver to be available for the transplant.
The case raises some important points of principle and the need for clarification of NHS funding practice in similar cases—where an operation cannot be performed here but expertise exists abroad. I have no wish to raise false hopes anywhere, but if patients and their families are forced to go private, as it were, in such circumstances does not the NHS have a responsibility to make available information, first, about experts within the United Kingdom and, secondly, about surgeons and teams elsewhere?
The offer by Sir Roy Calne at Addenbrookes carne late in the day, after discussions had taken place and everyone had been informed that no way could the operation be performed in Britain. Perhaps the Minister could enlighten the House about the procedure for keeping up-to-date information about pioneers in surgery both within the United Kingdom and throughout the rest of the world. I do not doubt for one moment that the original information that the operation could not be performed here was accurate to the best of anyone's knowledge. I find it difficult, as we all do, to understand how it was that last week, several weeks after the Davies had been told that the child's only chance was to go to Pittsburgh, Sir Roy was contacted and the Department of Health said on the very day that we met it last week that Sir Roy was prepared to see Laura that day in Cambridge to assess her, do some tests and make his decision.
The need to update information and know what pioneering surgery is available is crucial. I should also like guidance, as we all would, on who pays for such costly operations if the patient is treated under the national health service but has to go to a different health authority region from his or her own. In many cases we are talking about highly specialised operations. Costs are enormous and the patient has no choice.
In Laura's case, if her parents decide to take up the Addenbrookes offer, what proportion of the cost will be borne by Salford health authority, what proportion by Cambridge health authority and what will come from other NHS funds?
Occasionally in the past, patients in dependent territories, in need of life-saving operations that are unavailable in their countries, have been treated at our expense elsewhere. Is that still the case? If so, there is something of a precedent in this case.
I should also like guidance on the financial provisions available in cases such as Laura's, where it is thought that post-operative treatment must be carried out in another country, outside the European Community. Will the NHS contribute to the costs incurred?
As we can all now understand, Laura's case raises important questions, which have wider implications. I know that the thoughts of all in the House and beyond go to Laura and her parents at this difficult time. Wherever it is decided that Laura should have the operation, either in this country on the NHS—in which case, there are questions about finance as I mentioned—or in Pittsburgh, we are thinking of her and we understand the agonies of her family in having to make this difficult decision at a crucial time for Laura.
I hope that by opening up the debate we may prevent others from experiencing the emotional and physical 686 suffering endured by the Davies family and their friends, and we may get some clarification of the financial responsibilities of the Department and the health authority.
I heard today that if Laura has the operation in this country some of the experts from Pittsburgh are prepared to assist in the operation. Obviously, we are enormously grateful that that is so, but we would like to know who will pay. Will it come from the money that has been raised? Will the NHS cover it? Or are they giving their expertise free? Those are important questions for Laura and for other people.
As knowledge of medical science and surgery progresses in some countries more quickly than in others, similar problems will arise. They have arisen in the past. For that reason, I hope that the Minister will be able to take up the matters of principle that I have raised and answer my questions on financing, so that we have a clearer picture of where we stand when dealing with similar cases.
§ The Parliamentary Under-Secretary of State for Health (Mr. Tom Sackville)As my right hon. Friend the Secretary of State for Health said last week on the Floor of the House, this is not the place to discuss individual cases because of the intrusion in the personal difficulties of the families. None the less, since the case has been the subject of detailed media coverage I am grateful to be able to explain the position over the predicament in which Laura Davis and her parents find themselves.
I refute any suggestion that the reasons why Laura is not being sent to America as an NHS patient stem from a lack of resources available to the NHS.
Laura was born with a rare disorder which means that part of her alimentary tract is missing. She has had a number of major operations in this country on the NHS since birth and has had to be fed intravenously for 12 hours per day. In the past six months severe liver problems have set in. The paediatric surgeon in charge of Laura's case in Manchester considered the possibility that a double transplant operation of liver and small bowel would benefit her.
The double transplant operation is experimental and is not yet routinely available in the United Kingdom, although consideration has been given to setting up such a transplant programme in this country. That there is not such a programme reflects the experimental nature of the procedure. Liver and small bowel transplants have been performed with a degree of success at two centres in North America, notably at the university of Pittsburg. I understand that the university unit there has undertaken 19 such operations during the past two years. Ten of those operations have been on children, though it is too early to judge the level of long-term benefit.
This is not the place to debate matters that are proper for the family and clinicians responsible. However, I must make it clear that these circumstances, in conjunction with the current state of medical development of this particular form of transplant, cannot, I regret, allow the assumption that a certain cure is readily available in Pittsburg. The evidence is that this treatment is not by any means yet widely acceptable to the medical profession internationally. It is an experimental procedure which is being evaluated by a research project. It is not generally 687 available even to Americans who might benefit. It is extremely important to realise, too, that, even at its most successful, there is as yet no evidence that it will permit what would be generally recognised as a normal life. Very long periods—up to a year—are required in hospital, with lengthy periods on a ventilator or in intensive care. Because of the extensive aftercare and various information from the United States, it appears likely that media reports of the costs involved are a significant underestimate.
It is not for the Department or this House to take decisions of a clinical nature. The Department of Health is of course responsible for ensuring the appropriate development of services, which health authorities are then responsible for providing. The NHS provides a comprehensive service which includes all established and accepted treatments. In the field of transplantation the NHS has an excellent record.
I should like to outline more specifically the actions of the Department with regard to liver and small bowel transplantation. Officials have kept the developments under constant review. The matter was discussed in my right hon. Friend the Secretary of State's advisory group on supra-regional services last year. There has been close liaison between clinicians in this field and doctors in the Department of Health. In addition, the Chief Medical Officer is convening a small group of experts to consider future developments.
To return to Laura's case, I must re-emphasise that treatment decisions are a matter for clinical judgment. Laura's parents and supporters, through the hon. Lady, have asked that public money be used to pay, either in whole or in part, for treatment in the USA. As this raises the whole principle of sending NHS patients abroad for treatment it may be helpful if I spell out what the law is on the referral of patients overseas and answer one of the hon. Lady's questions.
The basic position is that there is no general power in NHS legislation to use public funds for treatment overseas. Apart from a European exception, not relevant to this case, the relevant United Kingdom legislation, section 5(2) of the National Health Service Act 1977, clearly restricts the expenditure of public funds to treatment available in this country. Neither I nor the hon. Lady wants to make political capital from this, but I must mention that that legislation was introduced under the Labour Government. That underlines the consensus that has traditionally been in place over this issue of purchasing treatment overseas. Governments of both parties, rightly, have taken the view that what is best for the British people, and, indeed, what the British people want, is for health services to be developed and made available within this country. We should not as a matter of public policy rely on sending patients abroad at great expense, with the associated risk to the patient through lengthy journeys and separation from support from friends and family.
688 On very rare occasions—twice in the past three years —the Department of Health has sought authority to spend relatively small amounts on an extra-statutory basis to purchase treatments overseas outside the EC, usually in the USA. Such authority would normally be given only when the treatment in question involved a life-threatening condition, was not available in the United Kingdom, produced a strong probability of survival and was well-established rather than experimental. Not all of these conditions apply to liver and small bowel transplants.
As the hon. Lady knows, in concluding that it would not be appropriate to refer Laura to the United States of America, Ministers asked the Chief Medical Officer to advise on what treatment options are available in this country. It became clear that the necessary expertise was available here, and why Laura was not referred at any time by her consultant to Sir Roy Calne is a matter which should be considered further. She was assessed by Sir Roy, who is an eminent surgeon of world standing in transplantion. He has now confirmed that he is willing to carry out the necessary operation, if that is the wish of Laura's parents. Moreover, the surgeon in charge of the unit at Pittsburgh, Dr. Thomas Starzl, has made it clear publicly that he believes that the operation should be done here, rather than in the United States. He has pointed out that if Laura went to Pittsburgh, she would be competing with a number of other children waiting for suitable organs—quite apart from travel considerations.
Dr. Starzl went on to say:
the procedures we are talking about have their origins in Cambridge with Sir Roy Calne. They represent a kind of transatlantic and bilateral cooperative venture that has gone on for many years between that group and ours. What we have done belongs really to them just as much as it belongs to us.In addition, I am very pleased to be able to confirm that should Laura's parents decide to accept Sir Roy Calne's offer to operate, Dr. Tzakis, a senior member of Dr. Starzl's team, has agreed to come here to assist in Laura's treatment—whether the operation or post-operative treatment. The hon. Lady asked who would pay for such a visit. If Dr. Tzakis wishes to charge the NHS, that will be taken care of by public funds.In conclusion, I should like to acknowledge the efforts made in Laura's case by Sir Roy Calne in Cambridge, Dr. Starzl and his team in Pittsburgh and the Government's Chief Medical Officer, Dr. Kenneth Calman. But, most of all, I am sure that I speak for the whole House in sending best wishes to Laura and her family at this difficult and distressing time.
I understand that arrangements have been made for Laura to return home and she may be leaving Addenbrooke's shortly, during which time I hope that her parents will come to a decision. I very much hope that a solution will be found to this distressing situation.
Question put and agreed to.
Adjourned accordingly at eight minutes to Three o'clock, pursuant to the Resolution [19 May].