NHS: Specialised Services

Baroness Masham of Ilton Excerpts

Wednesday 18th July 2012 Lords Chamber

[Baroness Masham of Ilton]

My Lords, I thank the noble Baroness, Lady Jolly, for this timely debate on AGNSS. There is no doubt in my mind that there are many really concerned and frustrated people who are involved in highly specialised conditions, be they patients, relatives or doctors treating them. With so much insecurity and with PCTs running down and the national Commissioning Board not operational yet, there is a limbo situation.

When a rare disease strikes, it is the individual who matters. The correct treatment is vital, but with rare conditions risks have to be taken if there are to be improvements. The Chief Medical Officer, Dame Sally Davies, has recently endorsed the value of research into rare diseases by the National Institute of Health Research as a significant source of benefit for patients with rare diseases. The role of AGNSS is to advise Ministers. Does the Minister think that the national Commissioning Board members will be infallible so that they will not need advisers? We have come to a shocking situation when staff in St George’s Hospital, a teaching hospital, neglected a patient of 22 who had suffered a rare condition, following a brain tumour, that required daily drugs. He died of thirst because staff failed to read his notes. Patients with rare conditions need extra-special treatment; they should not be neglected and ignored. What has gone wrong? We need transparency and confession and a fool-proof system for all vulnerable patients. When the Government say that everything is fine when it is not, it is a cover-up.

AGNSS is an independent advisory group providing advice to the Secretary of State for Health regarding the commissioning of services for very small populations of patients—fewer than 500 patients in England. Will the Minister make clear what the future of AGNSS is? To cover all specialised services adequately, the Commissioning Board will have a mammoth task.

I must declare an interest as I have a cousin aged six who has relapsed neuroblastoma. The treatment his parents are trying to access is likely to become available on a trial basis in the UK, but not in time for Jamie. It has been internationally recognised as being one of the most promising therapies with encouraging results against neuroblastoma. I think it is available in Germany. There are only about 100 patients a year in England with this aggressive type of child cancer. It desperately needs research. Parents will do anything for their children. This family is appealing to the North Yorkshire PCT.

I am president of the Spinal Injuries Association, which is concerned about tetraplegics and paraplegics who are not being admitted to spinal units. One case is still residing in St Mary’s, Paddington, on a respirator after a ski-ing accident. He has been waiting to go to the spinal unit at Stanmore for months. This is not good. Correct specialised care means good quality for patients. The noble Earl is Minister for Quality. Does he agree that there should be a special fund for very rare cases so that they are not passed over? I, who have every admiration for our hard-working Minister, do not want the system to give him the reputation of being a Pontius Pilate. Even with AGNSS, there are improvements to be made. There is a black cloud hanging over the NHS: the £20 billion that has to be saved. With so many demands on healthcare, this challenge may just be too great.