James Wilkinson

Opposition Day – in the House of Commons at 9:40 pm on 18th January 1995.

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

Photo of Miss Betty Boothroyd Miss Betty Boothroyd Speaker of the House of Commons

Order. Will hon. Members who are leaving please do so quietly? We still have business to conduct in the Chamber.

Photo of Mr David Hinchliffe Mr David Hinchliffe , Wakefield

I am most grateful for the opportunity to raise some detailed concerns about the case of James Wilkinson, a three-year-old boy in my constituency who suffers from a rare syndrome termed Ondine's syndrome. As well as drawing the attention of the House to some specific problems relating to the funding of James's care, I want to press the Minister over my concern about the way in which proposed changes to the funding of the Wakefield health authority will impact on James's personal situation and those of other constituents with health problems.

James was born on 20 April 1992. He was Ann and Gary Wilkinson's first child. He weighed 61b 13oz at birth and appeared, at first, to be normal and healthy, except for a slight problem with his breathing. Within minutes of his birth he was rushed into intensive care and, despite rigorous tests, his condition baffled doctors for some considerable time.

James was transferred from maternity care in Wakefield to the Clarendon wing of Leeds general infirmary and, subsequently, to the North Staffordshire general hospital in Stoke-on-Trent for highly specialised care. He was diagnosed as suffering from Ondine's syndrome, a condition which affects only a handful of people—I believe about eight—in the whole of Britain. Ondine's syndrome is characterised by hyperventilation and shallow or slow breathing during sleep. It is believed to be caused by an abnormality in the. automatic control of respiration. The respiration centre does not react adequately to carbon dioxide levels in the blood in the way that is necessary to maintain normal breathing. It has been suggested that this may be due to lesions of the high spinal chord or brain stem. The condition is named after Ondine, a character in Greek mythology who allegedly caused a mortal who loved her to sleep for ever.

James Wilkinson spent the first 18 months of his life in hospital. His parents travelled a round trip of 200 miles to see him each weekend before he was able to return to Yorkshire. They had to adjust to a regime of monitoring his condition 24 hours a day. When he became weary or fell asleep he was attached to a ventilation mask which maintained his breathing.

Mrs. Wilkinson told me recently that, shortly after James's diagnosis, she was advised by another family facing the same tragic problem to seek the support of her Member of Parliament in the anticipated struggles to enable James to be brought up in as normal an environment as possible in the family home. She arid her husband contacted my constituency office during summer 1992, and my constituency researcher and I have been involved in making representations on their behalf, particularly with regard to James's care at home, since that time.

I know that Mr. and Mrs. Wilkinson were very frustrated by the length of time that it took to secure an adequate package of care for James at home. They went to the extent of writing to the Secretary of State for Health about their concerns. I do not want to dwell on that point, other than to say that I think that the family were rightly aggrieved at the way in which they saw James becoming institutionalised because of inability to arrange his domiciliary care.

The Minister will be aware that I also wrote to his Department on 20 July 1993 outlining my concerns on that point. No doubt he will have seen a copy of the reply that I received, dated 31 July 1993, from the then Minister for Health, the right hon. Member for Peterborough (Dr. Mawhinney).

James eventually went home to his family on 5 October 1993, the ventilation equipment necessary for his care having been installed in an extension of the Wilkinson's house constructed to meet his specific needs. The current care package involves 24-hour nursing cover, and the family also have the support of a home carer from the local authority social services department for six hours each week.

Last summer, Wakefield health authority invited me to attend a discussion about James's case. I was made aware of the difficulties that the authority faces in funding, on an annual basis, the care that he requires. As a means of possibly reducing costs, it was suggested that Mrs. Wilkinson might undertake some of the monitoring of James's condition which was carried out by nurses, with social services caring for James's sister, Harriet, who I believe is about two years old.

The family—rightly, in my view—resisted that proposal. Mrs. Wilkinson is firmly of the opinion that her daughter should be cared for by her own parents and not by a substitute. Their views on the matter were endorsed by the family's general practitioner, Dr Brain, in a letter to me dated 29 September 1994. Nevertheless, I appreciate the difficulties faced by the Wakefield health authority, which finds its budgetary arrangements skewed because of the resourcing required to meet one person's needs. I ask the Minister to consider that point tonight because his response in a letter to me in November, following my written representations on the issue, did riot address in any way the difficulties faced both by the Wilkinson family and by Wakefield health care.

I pay a sincere tribute tonight to Mr. and Mrs. Wilkinson and to their wider family for the care that they have given James in such tragic circumstances. It is completely unacceptable that they should feel constantly subject to the possibility of a reduced package of care because Wakefield health care's budgetary difficulties in funding such care are not taken into account by the Government in the allocation of resources.

It cost Wakefield health authority nearly £260,000 for James's care as an in-patient at the North Staffordshire hospital and the Leeds general infirmary and a further £147,000 for in-patient care and home care during the last financial year. Those figures do not include equipment costs, which are in the region of £32,500.

It costs Wakefield health authority around £102,000 per annum to fund James's care at home. Wakefield health authority pointed out to me that, if used in another way, that funding could purchase 17 coronary artery bypass grafts, 45 hip replacements or 132 cataract operations. In other words, the health needs of a significant number of my constituents and, indeed, yours, Mr. Deputy Speaker, are not being met because the Government's allocation of funds to Wakefield health care do not take into account the manner in which James's care skews its existing budget.

I want to make absolutely clear, knowing Wakefield people as well as I do—I was born in Wakefield and have lived there all my life—that I doubt whether there is one person in Wakefield whose health needs might otherwise be met, who would resent those resources being spent on James's care, but I suspect that many of them will feel as I do that it is wrong that such expenditure is not taken into account by the Government in the calculation of local funding requirements.

Last April, Wakefield community health council wrote to local Members of Parliament for the Wakefield district suggesting that central funding might be ring-fenced to cope with such special cases from a national point of view. At a meeting on Monday this week, council members agreed to table a motion to the annual conference of the Association of Community Health Councils for England and Wales later this year urging the Department of Health to fund from a central source the extra resources that are required to meet the cost of extensive funding for individual patients needing specialised care. The motion points out that this position will become even more uncertain with the impact of total purchasing by GP fundholders.

Before I conclude, there is another factor with a bearing on James Wilkinson's case that I want to raise with the Minister. I have given him notice of the points that I intend to raise tonight. As he will know, on 21 October last year, the national health service executive published new guidance on the distribution of resources in the national health service, following a review of the methodology of the allocation of revenue funding.

At its December meeting, Wakefield health authority considered a paper from its director of finance and information on the outcome of the review in respect of its impact on the local budget. The paper suggested that the new formula changed the district health authority's distance from its target allocation quite dramatically, as it is allegedly overfunded at present by some £7 million per annum. The 4.9 per cent. variance is the biggest percentage variance in the new Northern and Yorkshire region, and is obviously of great concern in terms of its implications for funding the future care of patients such as James Wilkinson.

I will not expand on matters beyond the scope of this debate, but I fear that the 1991 consensus on which the new formula is based pre-dates many of the employment and health implications of the coal closure programme that devastated Wakefield. You more than anybody, Mr. Deputy Speaker, will be aware of the point that I am making. I fear also that the population age profile showing that Wakefield has a relatively small population of elderly people fails to take account of the fact that local demand for health care shows that the total requirement for resources has not reduced. The same amount of health care is being used over a shorter life span.

The implications of those changes add to existing pressure on funding the current care package needed by James Wilkinson and his family. The Government must address the understandable anxieties of the Wilkinson family and of Wakefield health authority.

It would be wrong not to express on behalf of the Wilkinson family their thanks to all those who have supported them since James was born. They are particularly grateful to the current nursing team and to the home carer from a local authority social services department who visits every week. The family are also most appreciative of the support of their general practitioner, Dr. Brain, and of colleagues from the same practise.

The Wilkinson family are bravely facing up to an extremely difficult situation. They would welcome assurance that the support that they will need in future will not be threatened because Wakefield health authority's specific funding problems have not been taken into account by the Government.

Photo of Mr Tom Sackville Mr Tom Sackville , Bolton West 10:46 pm, 18th January 1995

I congratulate the hon. Member for Wakefield (Mr. Hinchliffe) on securing this Adjournment debate on Ondine's syndrome and the case of James Wilkinson. I listened with great interest to his remarks. Thankfully, Ondine's syndrome is a rare condition, but I appreciate the support that the hon. Gentleman has given the Wilkinson family and the concern that he feels. I know that right hon. and hon. Members on both sides of the House join me in conveying our sympathy to members of James Wilkinson's family, whose lives have inevitably been turned upside down by his condition. The illness of any loved one is always traumatic and difficult to come to terms with, and especially so with one so young—in this case, a two-year-old child.

The NHS accords a high priority to children's health services. In 1991, a good practice guide on the welfare of children and young people in hospital was issued to health authorities. It made a number of important points, including—this is relevant in this case—the point that children should be treated at home wherever possible, with help from primary care and other services.

In 1993, following the Audit Commission report "Children First", which welcomed the guide's recommendations, the NHS Executive made child health a second-line priority for 1993–94. Furthermore, perinatal, infant and child mortality are, as the hon. Gentleman knows, falling significantly compared with figures for 20 years ago, for which we can all be grateful.

The hon. Gentleman spoke of what he views as Wakefield's difficult future funding situation. Regional health authorities, in making allocations to health districts for 1995–96, are following the policy that no district such as Wakefield—which, as the hon. Gentleman said, is over target in terms of the allocation formula—will lose resources in real terms.

It is for regional health authorities to make allocations to district health authorities and to decide which formula to use in setting targets. The resources that Wakefield health authority will receive next year will be greater than was predicted earlier by the authority. Although the revised weighted capitation formula will have a bearing on future years, it will not affect Wakefield's level for growth in 1995–96. To put this in absolute numbers, I understand from the regional health authority that Wakefield health authority will receive total funding of £134 million next year, which amounts to an extra £6.2 million, including £900,000 of growth money.

This does not commit anyone to specific funding for future years, but it does show that real growth in health resources continues; so some of the hon. Gentleman's dire predictions, made here and elsewhere, about reductions in allocations to Wakefield are clearly exaggerated.

Photo of Mr David Hinchliffe Mr David Hinchliffe , Wakefield

They are not my predictions; they are those of the director of finance of the health authority. The figures were put to the December meeting of the health authority.

Photo of Mr Tom Sackville Mr Tom Sackville , Bolton West

To suggest that, because Wakefield is a certain percentage above target, there will be a cut next year, or in any succeeding year, is wrong. That is unlikely. There will probably continue to be real growth in health resources in years to come, so there will continue to be more resources, in real terms, for Wakefield.

I understand that James Wilkinson spent almost all the first year of his life in hospital, and Wakefield health authority, the local authority and the Pinderfields trust have worked together to ensure that he can now be supported at home. I believe that the hon. Gentleman became involved in acting on behalf of the family to clarify the position of the various statutory authorities while the Wilkinsons' house was adapted and James's health care needs were assessed. I am aware of how diligently the hon. Gentleman has worked, and continues to work, to represent the needs of the family.

As the hon. Member for Wakefield said, James is now supported at home by qualified nursing staff, who, in conjunction with his parents, provide a 24-hour care package. Mr. and Mrs. Wilkinson currently cover two shifts at a weekend and two evenings each week. The full cost of the care package exceeds £100,000. I am aware that the health authority has maintained contact with North Staffordshire hospital, which provides specialist paediatric services to children with this condition. The view of Professor Southall, the acknowledged expert on Ondine's syndrome, is that 24-hour qualified paediatric nursing is not necessarily required. It is also very important that the family circumstances be normalised as soon as possible.

I understand that James already attends a nursery for three mornings a week, where he is accompanied by qualified staff, and that, as a result of a recent review of his care needs, it is expected that he will shortly attend Pinderfields hospital school for two full days a week. The school is specifically for children with complex health problems. While he is at the school, a bed will be dedicated for him on a ward in case he should require a nap. The nursing cover which is usually available at home will continue to be available in the school.

Wakefield health authority fully understands the nature of its on-going responsibility towards James, but his needs may, of course, change as he grows older. The authority has made it clear that there is no possibility of it withdrawing support for James. The extent of the support, however, will need to be reviewed from time to time to ensure that it is appropriate. As children grow older, they are more easily able to control their pattern of sleep and are less likely to need sleep during the day time. Thankfully, the level of care needed by such a child as James may alter in future years.

I am sure that the hon. Gentleman will join me—he has already praised Wakefield health authority—in welcoming the actions of the authority in providing resources so that James can be cared for properly at home. James is, and will remain, the responsibility of Wakefield health authority while he resides in the area. His case clearly involves considerable resources, but it is not unknown for such expensive cases to be borne by many health authorities. That is one of the reasons why we have sought to have health authorities that are financially strong. As the hon. Gentleman knows, we have fewer and larger health authorities than we had some years ago, so that where there are such expensive cases they can be borne by individual authorities without an undue impact on other patients.

As I have said, there is no question of Wakefield health authority withdrawing its support of James. It is a matter not of resources but of the authority continuing to fund the appropriate level of care for James.

Clearly, it will be in everyone's interest for the health authority and all those concerned to continue to review James's case regularly. I can assure the hon. Gentleman and James's family that that is not because the authority lacks the commitment to pay for his continued care. It is essential that, as he gets older, the care that is provided is appropriate to his needs.

I share the hon. Gentleman's determination to ensure that high-quality treatment is available to those suffering from Ondine's syndrome, like James, for the benefit of patients and their families. I am sure that, in the case of James Wilkinson, Wakefield health authority, Pinderfields hospital trust and the local authority all share that commitment. Once again, I congratulate the hon. Gentleman on raising such an important subject.

Photo of Mr David Hinchliffe Mr David Hinchliffe , Wakefield

I have no personal doubt about Wakefield health authority's commitment to offering the care that James Wilkinson and his family need. I am concerned that it has told me that it faces immense difficulties. To its credit, it invited me to a meeting to discuss James's case during the early autumn of last year. It was made clear to me that the health authority feels that it is under immense budgetary pressures because of the demands of one patient for £102,000 of its fairly tight annual budget.

The Minister will know that there other cases nationwide that are causing similar concern. I learnt today of a Minister who has someone in his constituency with a problem similar to that of James Wilkinson, where there is a difficulty with the local health authority budget.

Away from James's case, I am saying as a point of principle that it should be recognised that there are health authorities, such as Wakefield, that are facing difficulties, and other constituents are not receiving treatment as a result of the huge resourcing demands of one particular case.

I ask the Minister whether the principle of earmarked funding—top-slicing funding within a budget—to protect the care package for someone like James can be considered by the Government. It is an issue of principle; accepted, as the Minister will be aware, by his Department. in ring fencing community care funding. It is no different, in my view, from recognising a specific area of need and difficulty that may not be properly resourced without some protection. The hon. Gentleman has not really answered the central point in the debate—looking at the way in which the formula will operate in future to secure and protect funding in cases such as James Wilkinson's.

Photo of Mr Tom Sackville Mr Tom Sackville , Bolton West

I can say only that the future funding for James Wilkinson is protected by the fact that Wakefield must accept responsibility for providing an appropriate level of care. It now has a budget of £134 million. It is by no means unusual that health authorities should have individual cases that cost a great deal of money: it may be because of the level of nursing care, as in this case; it may be because of very expensive drugs or particular treatments, or because of long periods spent in intensive care, or whatever. We have attempted to find a structure with a smaller number of larger health authorities so that a health authority is able to absorb such costs. As I have also said, James's condition and needs may change, and that issue must be reviewed regularly. While he needs that level of care, he will receive it from Wakefield. The hon. Gentleman has my assurance on that.

Photo of Mr David Hinchliffe Mr David Hinchliffe , Wakefield

After he has studied the comments in Hansard tomorrow, will the Minister give an assurance that he will personally discuss with Wakefield health authority its concerns in respect of the principles in James Wilkinson's case and the specific difficulties? It would be helpful if Wakefield said to the Minister directly what it has said to me. Clearly, his brief does not take into account Wakefield's very real concerns about its budget.

Photo of Mr Tom Sackville Mr Tom Sackville , Bolton West

Health authorities must provide a wide spectrum of care for many different patients, some of whom have special needs. They must make the commitment to care for all those patients. I will certainly consider what the hon. Gentleman has said.

Question put and agreed to.

Adjourned accordingly at one minute past Eleven o'clock