NHS: Specialised Services

Lord Turnberg Excerpts

Wednesday 18th July 2012 Lords Chamber

[Lord Turnberg]

My Lords, I am sure that we are all grateful to the noble Baroness, Lady Jolly, for introducing this debate and setting out the issues so clearly. There is deep concern among the support groups that speak for patients with rare diseases that the loss of this advisory group, newly formed as it is, will be a retrograde step and create confusion and a loss of a valuable asset. I have no doubt that the Minister will try to reassure us by saying that this will all be taken care of by the commissioning board. There is little or nothing in the Health and Social Care Act, or in any other document I have seen, that offers any confidence yet that this has been given enough serious attention. I look forward to him saying rather more than we have heard so far when he comes to round up.

It is the case that the advisory group has been widely regarded as doing a marvellous job. It is recognised not only by the NHS and by patients, but also by other countries as a model for the way services for patients with rare diseases should be provided. It does this by having developed a rational framework that takes account of best practice and societal and health gains. It has done so in a way that is efficient and at a reasonable cost.

I would like to illustrate this by using the example of the group of orphan, or very rare, diseases that rejoice under the name of lysosomal storage diseases. These include Gaucher’s disease, Hurler’s syndrome and a number of others. They affect few patients, almost all in childhood. An average GP in an average year is unlikely to see a case. If she is faced with a case she is unlikely to know what to do about it and left to herself is likely to be reluctant to fund the patient’s care.

These are the sorts of cases that have to be funded and commissioned centrally and cannot be left to CCGs. Only when sufficient knowledge and expertise are available can commissioning be rationally arranged. Here, the advisory group has been invaluable. It is not simply commissioning that is needed. The provider services for rare diseases must be distributed in a limited, rational number of places to make the best use of limited resources. Specialised services for children with lysosomal diseases are located in only three places: London, Birmingham and Manchester. For adults they are located in five places around the country. Only by limiting the number of sites can you expect to develop a critical mass of specialised doctors, nurses and other healthcare workers to provide the best possible care. They are also the places where teaching and research into these diseases can best be done.

That is one example. Similar needs apply to a much larger number of diseases, each of which occurs rarely. The Genetic Alliance UK is an umbrella organisation that brings together over 150 patient-led charities, each set up to support these patients, again mostly children, with genetic diseases. Most of them fit into the category that is covered by the advisory group; that is, they affect fewer than 500 patients a year and currently the advisory group covers about 70 specialised services. For these patients, the advisory group has made all the difference. Yet now there is much concern that all this expertise will be pushed out and dissipated as the commissioning board takes on its multitude of responsibilities.

Can the Minister reassure us and them that there will be a rare disease plan in the mandate for the board? Will the board have access to the specialised expert advice that is so valuable and ready made for this purpose in the advisory board? I am sure that he is well aware of the need and requires no prompting from me on this, but I hope that he is going to be able to say something today that will help allay these concerns.