Cleft Lip and Palate Units

HC Deb 02 June 1999 vol 334 cc612-8

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

2.30 pm

Mr. Robert Syms (Poole)

I am raising an important subject today—the national health service cleft lip and palate units, which are now in a state of some turmoil because of the review undertaken by the clinical standards advisory group, which reported in February 1998. The process is now moving on. I especially welcome the presence this afternoon of my hon. Friends the Members for Runnymede and Weybridge (Mr. Hammond) and for Bournemouth, East (Mr. Atkinson), who may, I understand, make a brief contribution later.

The root of many of the difficulties is the proposed reduction in the number of centres from 57 to between eight and 15. Originally, the CSAG examined practice and outcomes elsewhere, especially in Scandinavia. In general, there is some logic to its proposals, but I have particular concerns about them as they relate to Poole.

The reduction in the number of centres is too great, and it looks as if the implementation of the proposals will be somewhat dogmatic. The date of 1 April 2000, by which everything is to be in place, is too soon. There is a feeling among my constituents and others that the consultations are not being taken as seriously by the NHS executive and the regional health authorities as they should be.

In the south-west, the proposal is to reduce the number of centres from five to one, based in Bristol, although that centre may work out of two sites, with Odstock in Salisbury as a second site. That is going too far, too fast.

I had a letter from the Minister of State, Department of Health, the hon. Member for Southampton, Itchen (Mr. Denham), in which he said: No decisions have yet been made about the pattern of cleft lip and palate services in the south west, and the views and concerns of patients and their families are taken into consideration in the consultation process. However, there is still a strong feeling that the proposals for the south-west executive have been set in a particularly firm framework, so that even if we make a case for the benefits of maintaining the unit in full, I am not sure whether that will fit in with the Government's framework. A local petition has so far been signed by 12,000 people and I have the support of many of my colleagues in the south-east Dorset conurbation.

The 1997 White Paper, under the heading, "A New Start", said: The needs of patients will be put at the centre of the care process", and said that the Government would rebuild public confidence in the NHS as a Public Service, accountable to patients, open to the public and shaped by their views". Under the heading "Keeping What Works", the White Paper also said: If something is working effectively then it should not be discarded purely for the sake of it". The key point is that Poole as a unit is working effectively, and should not be discarded. The Poole unit is different from other units in the Wessex region, because it uses a different technique pioneered by Professor Delaire in Nantes, in France. It is a regenerative process in which the face is rebuilt so that the muscle can grow. A child whose face has been rebuilt in that way will need less surgical intervention in future. The process allows more natural growth, and has a good record. It is used widely in Germany, France, Canada and the United Kingdom. Poole has been so successful that it has taught many surgeons from Africa and Russia to use the method in their countries.

One of the problems with the present review is that because that method is only one of two methods, there is a risk that we may lose many of the centres that use it. Tony Markus, the surgeon who heads the Poole unit, is one of the foremost national experts in that method, and has published several papers in journals such as the British Journal of Oral and Maxillofacial Surgery. There is concern among patients that following the review, they may have to go abroad, to France or elsewhere, to get such treatment. That is causing a great deal of concern.

Another important point about the Poole unit is that it has conducted an audit and published its results, whereas other units have not published that essential information. It is therefore difficult to make comparisons using the available data, although the data from Europe permit some comparison to be made. The Freiberg analysis is of particular merit, as it covers both the plastic surgery method and the Professor Delaire method. Evidence from parallel studies over a number of years demonstrate that better results are achieved by the maxillofacial technique.

The cost of centralising a region's operations into one centre does not appear to have been analysed critically other than in the broad-brush terms. The maxillofacial treatment usually requires only between one and three operations, whereas plastic surgery requires many more. Moreover, the changes made by plastic surgery do not grow with the child, so fairly regular operations are needed to compensate for growth. Cost ought to be a factor, especially if the method shows signs of success.

If the proposals are implemented, the practical effect will be that parents in the south west and the Wessex region will not be able to choose to have their children treated by the maxillofacial method, which would not be available at Bristol or Odstock. Parent meetings of the Poole group have been informed by member parents who have suffered treatment at Bristol, Manchester and at other units in the midlands that under no circumstances would they allow their children to be treated by those plastic surgery units again.

There is a great deal of support, among parents and patients who have experienced the benefits of the Poole treatment, for maintaining the unit. There is supposed to be freedom of choice under the national health service charter, but the proposals, if adopted, will mean that maxillofacial treatment will survive only at units in the north of England, if they too are not axed by the end of the process.

Published evidence in the United States shows that the attitude of parents to family involvement in cleft palate techniques can be a significant help in such cases. I believe that the system used in Poole commands much public support. The support and co-operation of parents with children suffering from such problems are vital, and the method is tried and tested.

Given that no other unit apart from Poole has published audited accounts, and that such accounts from the continent indicate that better results are being obtained by the maxillofacial process, it appears that the proposal could cause standards here to fall significantly. The Dorset hospital trust and the local health authority support the maintenance of the internationally acclaimed unit at Poole. How can the regional authority or the Government seek to override that local support and international recognition?

The local parent support group has made the strongest representations to the regional authority to be permitted representation at the final meeting in Bristol. None of the three letters that it sent has been answered. The only response was to the regional representative of the Cleft Lip and Palate Association in Exeter, who has no knowledge of or connection with the Poole unit, nor any personal knowledge of the techniques used there, which have international support.

It has been intimated that the regional authority wants decisions to be made by July. What criteria will govern those decisions, and what has happened to the three months consultation period that was first suggested? How is the right of choice under the patients charter to be addressed?

Centralisation in Bristol would be bound to remove all local support for the system that is currently available, and poorer families who could not afford the travel and accommodation that the proposals would require would suffer especially severely. This form of treatment needs a multidiscipline approach and support from many people, such as speech therapists. There is a fear that some of that team approach will be lost if Poole relinquishes its ability to undertake surgical interventions.

The road system between Bristol and Poole has not been improved significantly since the second world war, and travel by rail usually means two changes and significant cost. That is a very real problem for my constituents. An earlier attempt to centralise services at Bristol involved the Bristol baby heart unit: that offers a poor precedent.

The problems of reorganisation in Poole are causing much public concern. The local newspaper has run a campaign against the plan, and most of the parents who have witnessed the benefits that the unit has given to their children want it to remain open so that it can provide a service to people all along the south coast.

I plead with the Government to listen to representations made to them. The technique pioneered by Professor Delaire, and used by Tony Markus in Poole, must not be lost at the end of the review. It makes sense to have choices of treatment so that we can judge which is best. Choice also offers a degree of diversity in the health service. It would be a great pity if we lost Delaire, ending up with just a plastic method. Many nations—Russia and Africa included—are getting on to our method, which is proving successful.

I shall be interested by what the Minister says. The demands of parents in Poole should be heard by the Government and the executive of South-West regional health authority.

2.40 pm

Mr. David Atkinson (Bournemouth, East)

On my own behalf and that of my hon. Friend the Member for Bournemouth, West (Mr. Butterfill) may I congratulate my hon. Friend the Member for Poole (Mr. Syms) on securing the debate? We support all that he has said. Like him, we have received expressions of concern from constituents who are absolutely devastated and extremely distressed by the clinical standards advisory group's proposal to close the Poole unit in favour of Bristol.

The proposal overlooks the fact that treatment for cleft lip and palate is not a one-off operation, but a continuous process requiring regular attendance and treatment, for more than 10 years in many cases. A 27-year-old constituent of mine tells me that he has had 23 operations. He enjoyed no quality of life during his youth and adolescence. After years of trial-and-error treatment, he is finally enjoying confidence for the first time in his life because of the care that he has received from the brilliant pioneering team at the Poole unit, led by Dr. Markus.

It is inconceivable that the Poole unit should be closed and that our constituents should be required to travel as far as Bristol—a four or five-hour round trip, plus waiting time and treatment time. The Minister would not wish such an imposition on her own constituents. I hope that she will ensure that it does not happen to ours.

2.42 pm

The Minister for Public Health (Ms Tessa Jowell)

I congratulate the hon. Member for Poole (Mr. Syms), who has been assiduous in raising the cleft lip and palate service at Poole. I also appreciated the speech made by the hon. Member for Bournemouth, East (Mr. Atkinson).

Across the country, we are embarking on a major service reorganisation for highly specialist services. We want all children to achieve the best possible outcome from their care. It is important that services are organised in a way that achieves that aim. That is as important for families in Poole and Dorset as it is for families in the rest of the country.

The hon. Member for Poole will understand that in commenting on the designation of specialist cleft centres, I must be careful not to prejudge issues. Where changes in the commissioning arrangements represent a significant alteration to a local service, local consultation will be needed. If the local community health council contests any change—no doubt it will properly represent the views of the local Cleft Lip and Palate Association groups—it will have to put forward a viable alternative plan. The Secretary of State would consider that plan alongside health authority submissions before making a final decision. This afternoon, I do not want to pre-empt that process in any way.

What I can say is that we are working closely with parents through the Cleft Lip and Palate Association. At national level Gareth Davies, the association's chief executive, is a key member of the cleft implementation group. He is clear about the aims, which are to ensure that the best care of children comes first. He appreciates that it is not possible for every district hospital to have a local cleft service, but in travelling to a major centre he, as a representative of parents, will expect all children to have access to high-quality treatment.

About one child in 700 is born with a cleft, which means about 1,000 new cases every year. It is the most common facial defect and no one really understands what causes a child to be born with a cleft. We do not believe that it has anything to do with what the mother does during pregnancy. Clefts are formed in the embryo at an early stage as a result of a failure of the fusion process between the upper lip and primary palate. In some cases, there is a family link and it has been suggested that there might be an association with unknown environmental factors, but generally they just happen. Clefts are not usually diagnosed during pregnancy—it is unlikely that radiographers would always be able to make a confident diagnosis from an ultrasound scan—so most clefts are diagnosed in the delivery room. For the family, for which it is understandably a moment of shock and distress, care should begin from the moment that the baby is delivered and should continue throughout the child's growing years into adulthood.

Children with clefts and their families face many challenges. The hon. Member for Poole made it clear what a long journey many of those children face. A hospital admission is a traumatic event in anyone's life. Cleft children may need three or more operations. Cleft lips are usually repaired at six to 12 weeks, cleft palates at around six months. Other operations may be necessary to correct a misalignment of the jaw or to insert a bone graft in the upper jaw. Those are difficult and worrying times for parents. The quality of that surgery is therefore a major component of any care plan for a cleft child. It takes great skill and should be carried out by experts. It is not an operation that a surgeon can expect to carry out occasionally and still get good results.

For the reconstruction process to be effective, surgery must be part of a co-ordinated package of care provided by a whole host of health care professionals, working in multi-disciplinary teams. It is crucial that the care and treatment of clefts is properly co-ordinated to overcome the risks of facial disfigurements, dental problems, poor hearing and speech disorders, all of which can have an enormous impact on a child's healthy development. Standards at every stage must be the highest possible. Failure to provide proper speech therapy or dental care can be devastating and lead to a range of what are essentially avoidable problems.

There was concern for many years that the treatment of clefts was less good than it should be, with enormous variations in general treatment standards. I suggest that all of us who know children who have been born with that disfigurement can bear testimony to the high degree of variation in the quality and range of treatment.

Those standards were often below what was expected in other European countries so in July 1995, following representations from the Standing Dental Advisory Committee, the previous Government asked the clinical standards advisory group to review the delivery of services, paying particular attention to the comparative effectiveness of care provided by high and low volume provider units, as measured in terms of clinical outcomes and other patient-centred measures. The CSAG appointed a committee led by Professor John Murray and Dr. June Crown, supported by a team of experts, reflecting the range of services needed by cleft children and adults. The team included Tony Markus, the consultant maxillofacial surgeon in Poole, to whom the hon. Member for Poole paid tribute.

The CSAG reported in February 1998. What it discovered was disturbing; the recommendations were quite clear in finding that standards of care across the country were on average very poor. The CSAG found 75 surgeons carrying out primary cleft surgery in 57 centres in the UK. There was a general inability for centres to provide all the key members needed to form a multidisciplinary team.

Surgeons with a high volume of operations had better results than those with a low volume. That is clearly a crucial determinant of the quality of outcome for children. At 12 years of age, 20 per cent. of children had poor lip appearance and 42 per cent. had poor nasal appearance. All children who had unilateral cleft lip and palate surgery should ideally have received an alveolar bone graft before their 12th birthday, but 16 per cent. had not. For those who had, 58 per cent. of the grafts were unsuccessful. Speech was difficult to understand in 19 per cent. of 5-year-olds and in 4 per cent. of 12-year-olds. Twenty-seven per cent. of 5-year-olds and 31 per cent. of 12-year-olds had developed excessive nasal tone caused by inadequate closure of the palate. Only 67 per cent. of 5-year-olds and 53 per cent. of 12-year-olds had a completely successful outcome from secondary velopharyngeal surgery. Only one unit provided evidence of clinical audit over a 12-year period.

The CSAG took the view that that proliferation of centres and surgeons, and the absence of a complete multidisciplinary approach, had resulted in variable care, and relatively poor clinical outcomes for patients. As a result, the group recommended that there should be no more than 15 cleft centres for the whole of the UK; that each surgeon should treat between 40 and 50 cases a year; and that orthodontists and speech and language therapists should be similarly experienced.

Although the CSAG's research did not establish a direct link between volume and outcome, we took account of its very persuasive argument that clinical outcomes were most likely to be improved by concentrating scarce, highly specialist resources into fewer cleft centres. We recognised that poor clinical outcomes were likely to be due to the limited expertise in those centres treating small numbers of clefts. Better outcomes were most likely to be achieved where there were multidisciplinary teams of professionals, working well together.

We accepted that improvements in services can be addressed by reducing the number of existing services, but in doing so we emphasised that any reduction in the multiplicity of cleft centres should be driven by quality and effectiveness considerations. It is not simply a numbers game. We aim to drive up quality. Although we have accepted that treatment should be undertaken in fewer main centres, much of the follow-up care could be provided in more satellite centres, depending on local circumstances. Hopefully, that will reduce the inconvenience to children and their families referred to by the hon. Member for Poole, when they have to travel long distances, especially in rural localities. It will also enable parents to build a good relationship with their local cleft team.

The new arrangements for commissioning were set out in a Department of Health circular, which was issued in November last year. They included criteria for selecting specialised services, and a list of services, including cleft lip and palate services, for which some collective commissioning arrangements, below national level, might be necessary. Those arrangements will take effect in the 2000–01 commissioning round.

To support the NHS, we set up a cleft implementation group under the chairmanship of Dr. June Crown, who had been vice-chairman of the CSAG committee. The role of this group is to oversee the changes in service delivery in accordance with the CSAG recommendations. It is supporting the NHS executive's regional offices in specifying the service standards expected of any designated cleft centre, and the arrangements for monitoring service agreements.

Mr. Syms

In addition to the setting of standards, it is important that there should be a degree of diversity so that we do not end up with only one form of treatment. The form of treatment that I mentioned should be included within the services.

Ms Jowell

I entirely accept that diversity should not be obstructed, but it is important that all treatments within the diverse range on offer should withstand scrutiny for clinical effectiveness. I would expect such scrutiny to apply to the Delaire method.

The CIG has produced a commissioning framework for cleft services. Any centre currently carrying out cleft surgery, including Poole, would need to demonstrate to its regional commissioning group that it can meet the criteria set out in that commissioning framework document. The framework ensures that there are clear pathways of care; that there is a full range of clinical and support skills available; that there is collaboration not competition, with all surgeons participating in national inter-centre audit; that children are treated in a proper paediatric environment; and that there are adequate facilities for parents who have to travel.

As I said, it would not be right to comment in detail on or to prejudge the proposals being considered in the south-west, as they may be referred to the Secretary of State for final decision. However, I understand that the region's preferred option is for a twin-site arrangement between Bristol and Salisbury. That would mean that one cleft team would work on two hospital sites, under one clinical director. All staff would be expected to work on both sites.

The region is currently mapping out the detail of the hub and spoke arrangements. That work is being led by teams from Bristol and Salisbury, with the involvement of other relevant trusts. Some aspects of the spoke arrangements are clearly fixed by the commissioning framework, whereas others are negotiable and need to be worked out by the units and approved by the local health authorities as commissioners of the services. It is anticipated within the region's proposals that the follow-up of existing patients will continue at the existing centres, if that is what patients and their families want.

The clear overriding aim is to provide the best quality care and outcomes for children, and I have set out the way in which we intend to achieve that. My view, which is shared by the medical profession generally, is that to use the highly valued skills of surgeons working within multidisciplinary teams in a small number of cleft centres is a proper aim. I hope that I have made it clear that the Department of Health takes very seriously the findings of the CSAG report. We are determined to respond and to secure improvements in the currently unacceptably variable standards of care provided to children. That is as important to the Government as it is to the hon. Gentleman, who has this afternoon rightly voiced the concerns to his constituents.

Question put and agreed to.

Adjourned accordingly at one minute to Three o'clock.