| Previous Section | Index | Home Page |
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.
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
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 in57 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.
"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.
| Next Section
| Index | Home Page |