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Health: Sickle Cell Disease

Volume 702: debated on Monday 16 June 2008

asked Her Majesty’s Government:

What steps they are taking on the prevention, management and rehabilitation of strokes in children with sickle cell disease.

My Lords, the Government support a number of initiatives in this area. We have introduced antenatal and neonatal screening programmes for sickle cell disease, and the Department of Health is implementing a training programme in scanning for stroke risk. Furthermore, we support the national standards and guidelines for the clinical care of children with sickle cell disease and the use of the Royal College of Physicians’ guidelines for the management of strokes in children.

My Lords, I thank the Minister for that reply. In answer to a Written Question of mine on this subject, it was stated that strokes in young people was for the royal colleges, while, thankfully, the Department of Health has taken a lead in adult stroke strategy. Why is there that difference? Is it a symptom—I hope to be assured that it is not—of racial discrimination within the National Health Service, because, of course, the vast majority of strokes in children are in young sickle cell patients of Afro-Caribbean origin? Secondly, will the Minister assure us that central government funds will be forthcoming to ensure that all sickle cell children are offered screening for stroke risk and treatment with chronic blood transfusion, where appropriate, to prevent strokes?

My Lords, I thank the noble Lord for those questions. The Government support the existing guidelines that I have already referred to. Indeed, he will be aware that the majority of people who have strokes are over the age of 55; some 110,000 adults have strokes and approximately 400 children had strokes last year. Prevention of strokes in children and managing their rehabilitation after a stroke is very different as compared with adults, but that does not mean that we do not have to have a strategy in place for dealing with that. Preventing strokes in children with sickle cell disease requires repeated blood transfusions and even bone marrow transplants, which may be appropriate. The different approach required for the management of the rehabilitation of children affected by strokes needs to be run by a consultant paediatrician and a haematologist. It is covered, therefore, by the guidelines published by the Royal College of Physicians.

My Lords, does the Minister agree that this disease is the result of a genetically determined abnormality of the red blood cells that almost exclusively occurs in people of Mediterranean and African origin? In consequence, the cells which develop this sickle-cell shape tend to clump together and damage the internal lining of the arteries that supply the brain, and that is the principle cause of stroke. In order to be able to detect this risk, ultrasound scanning is necessary, and there is clear evidence from recent American research that the risk of stroke in such individuals, particularly in children, can be reduced by about 90 per cent by regular monthly blood transfusions. Is she satisfied that there are adequate facilities in the NHS for that ultrasound scanning and regular transfusions?

My Lords, the noble Lord is absolutely correct and has given the House a very helpful summary of the issues. We are working, through the Sickle Cell and Thalassaemia Screening Programme to agree standards, testing protocols and a standardised training scheme to ensure the establishment of appropriate scanning with transcranial Doppler scans. These, as well as lifelong blood transfusions, are key parts in the management and prevention of strokes in children with sickle cell disease. The Government are working to ensure that over the next year a regional service should be available throughout England.

My Lords, is there any liaison between this country and a clinic in Jamaica, which I have visited, devoted to the treatment of and research into sickle cell disease? The clinic is doing valuable work in a country which, after all, has to live with the disease. I would be very interested to hear the Minister’s reply.

My Lords, I should be surprised if that were not the case, although I shall write to the noble Baroness to confirm that. We are working with American colleagues to ensure that the specialist care for these children is developed.

My Lords, following the question of the noble Lord, Lord Smith, about discrimination, can my noble friend tell me if there is an overall strategy relating to sickle cell anaemia as a whole?

My Lords, we have been involved in developing a strategy and implementing a number of services for patients with sickle cell disease. These include the implementation of the programme of transcranial Doppler scanning; the establishment of managed clinical networks; the funding of training posts for registrars, nurse consultants and clinical scientists; the recognition by the royal colleges of the need to increase training in sickle cell disease, including changes to the examination syllabus for doctors and health professionals; and the funding of a database to track patients in the care they require.

My Lords, the incidence of this disease varies greatly. Seventy per cent of people who suffer from it live in London. Are PCTs in areas where it is prevalent given additional funding to enable them to purchase specialist services and care?

My Lords, they are being given additional funding. I do not have the figure in front of me at the moment, but I can write to the noble Baroness.

My Lords, the Minister will know that many children with sickle cell disease suffer a series of silent strokes which are often not detected until a full-blown stroke occurs. These silent strokes are detectable through changes in the child’s behaviour—for instance, drowsiness—and in their handwriting. What is being done by the Government to ensure that the education services and teachers are aware of the needs of pupils with sickle cell disease?

My Lords, I do not have a detailed answer about the education service. The National Health Service has been publishing information about this, and it is being used in the areas of the country where sickle cell disease is prevalent.