Cystic Fibrosis (Hansard, 3 February 1998)

§ The Minister of State, Department of Health (Baroness Jay of Paddington)
My Lords, I am grateful to the Cystic Fibrosis Trust for sending me and my colleagues copies of this report last month. I can assure the noble Lord that we are considering the report carefully. Many of the proposals are consistent with the policy of the White Paper, The New NHS, which the Government published before Christmas. We shall continue to work with health professionals, the Cystic Fibrosis Trust and all those with an interest to improve the care of people with cystic fibrosis and their quality of life.

§ Lord McNally
My Lords, does the Minister agree that this pernicious illness is suffering enough and that the sufferers have to endure a lottery in terms of the quality of the treatment that they receive? Is it not time for the Government to set national standards as regards treatment, so that sufferers do not receive varying levels of treatment according to the health authority area in which they live?

§ Baroness Jay of Paddington
My Lords, of course I am aware of the considerable suffering, particularly in 506 families with young children suffering from cystic fibrosis. I believe that the noble Lord will remember that a study by the Clinical Standards Advisory Group, which looked at this problem in 1966, showed an improvement in the consistency of standards of care. But clearly it is one of the overriding objectives of the Government, particularly, as I said, through the NHS White Paper, to establish national clinical frameworks precisely to look at the abolition of the lottery of care to which the noble Lord rightly refers and which we are determined to abolish.

§ Lord Ashley of Stoke
My Lords, does my noble friend agree that one person in 25 carries the cystic fibrosis gene and that screening could save a great deal of suffering? Can she give a commitment to the House that screening will be available for everyone who wants it regardless of the attitude of their health authority?

§ Baroness Jay of Paddington
My Lords, my noble friend rightly draws attention to the enormous scientific advances which have led to doctors and scientists being able to identify the gene for cystic fibrosis. That in itself has made an enormous difference. The National Health Service's health technology assessment programme is at the moment conducting a systematic review of the process of screening for cystic fibrosis, both ante-natally and after a child is born. We are expecting the report of that health technology assessment exercise shortly. It will then go to the national screening committee which, as the House will be aware, judges the priorities for national screening programmes. I am sure that cystic fibrosis will be high on its agenda.

Earl Howe
My Lords, in opposition, the Labour Party accepted the case for free prescriptions for adults with cystic fibrosis. Will the Minister confirm that in the review of prescription charges there is a presumption in favour of such an exemption in the mind of the Government?

§ Baroness Jay of Paddington
My Lords, I am tempted to repeat the answers given by my noble friend Lord McIntosh of Haringey in relation to the Budget Statement. I am sure that the noble Earl does not expect me to pre-empt the findings of the comprehensive spending review which, as he is aware, within the Department of Health concerns prescription charges particularly. The noble Earl will also remember that the review in the Department of Health is being conducted in the context of the manifesto commitment that if you are ill or injured there will be a National Health Service there to help you and access to it will be based on need, and need alone.

§ Baroness Pitkeathley
My Lords, does my noble friend agree that it seems unfair that where a family with a member suffering from the condition takes home that family member rather than having him or her nursed in hospital, the family may have to pay for equipment such 507 as nebulisers and feeding equipment which, had the patient remained in hospital, would have been provided free?

§ Baroness Jay of Paddington
My Lords, I am aware of this problem but, as I understand it—my noble friend may be in a better position to know through her work with the Carers National Association—if a nebuliser is prescribed by a hospital consultant, the family to whom it is prescribed may use it at home.

§ Lord Chalfont
My Lords, is the Minister aware that cystic fibrosis is one of the diseases which is likely to be most susceptible to treatment by gene therapy? Are the Government and their advisers examining possible future developments in that regard?

§ Baroness Jay of Paddington
My Lords, as I said in reply to a previous question, we are aware of the work that has been done to identify the gene for cystic fibrosis. That has made the potential for the screening programmes, which I mentioned in reply to my noble friend Lord Ashley, far more realistic. Clearly, work on gene therapy which could, for example, involve pre-embryo implantation work would be of great scientific interest. It would also have ethical considerations which I am sure that many people would want to discuss.

§ Lord Winston
My Lords, I am sure that my noble friend is aware that one of the strategies for dealing with cystic fibrosis in families which are affected and have a child who is already seriously ill is to screen embryos and to replace those which are free of the genetic defect. One problem faced by such families is that they can sometimes get treatment on the National Health Service, but sometimes they cannot and they have to pay for it themselves. As it is a cost-effective treatment, would my noble friend be prepared to give a cautious and favourable response, as she did to the noble Lord, Lord McNally?

§ Baroness Jay of Paddington
My Lords, as I said in reply to the noble Lord, Lord McNally, we would very much hope that specialist conditions, such as cystic fibrosis, would be susceptible to the national clinical frameworks. The priority with which those clinical frameworks are established will depend on many issues relating to resources and, frankly, the other conditions which are in the queue with regard to the establishment of that system.

§ Lord McNally
My Lords, as we have a moment to spare, I wonder whether the Minister would like to send her congratulations to the Welch brothers, my neighbours in St. Albans, who last Saturday organised a very successful sale of their toys as part of the "Blue Peter" appeal for cystic fibrosis, which has been one of the most successful "Blue Peter" appeals. The Minister's congratulations to "Blue Peter" and to the thousands of children who are participating in the appeal would be most welcome.

§ Baroness Jay of Paddington
My Lords, I am only too happy to underwrite the noble Lord's 508 congratulations on the fund-raising appeal. I only hope, however, that that will not lead to another noble Lord rising to his feet to suggest either that I should congratulate his local fund-raising appeal or, following my noble friend Lord Winston, that that is the way to fund basic research in the health service.