Consequences of Additional Private Drugs for NHS Care

Being unable to attend, Ian asked "our woman in the South," Board and Member of Angioma Alliance UK, Dr. Diana Dempster, to participate in a workshop entitled Consequences of Additional Private Drugs for NHS Care, Department of Health, Elephant and Castle, London, 18 July 2008. The Long-Term Conditions Alliance was asked to invite interested parties, of which Angioma Alliance UK was one, to this important Department of Health discussion. Here is Dr Dempster's report.

The workshop was held to obtain the opinions of interest groups about drugs not approved for use by the National Institute for Clinical Excellence (NICE) but which patients might not be able to pay for personally. The opinions obtained from the workshop will be included in the review of the "Consequences of Additional Private Drugs" which is being led by Professor Mike Richards, National Clinical Director for cancer and will report by October 2008 to the Secretary State for Health.

The workshop's parameters were extended to include medical inventions, not yet approved by NICE and the associated care to implement them.

The general conclusion was that paying privately for drugs/medical interventions not approved by NICE is a "necessary evil" and that this should not exclude the patient from obtaining those interventions approved by NICE and available through the NHS. All care associated with the privately obtained interventions should accrue to the NHS.

Another option was that Canada's Ontario OHIP scheme should be investigated.

Angioma Alliance UK is at present concerned with the practice known as Deep Brain Stimulation (DBS). Two other interested parties similarly concerned with DBS are the Parkinson's Disease Society, Claire Moonan, Health Policy and Campaigns Manager and the Dystonia Society, Val Wells, Service Development Manager.

Angioma Alliance UK (approx. 97% of cavernous angioma patients misdiagnosed) brought to the fore the matter of the General Practitioner (GP). It was generally agreed that it was incumbent on GP's to know and inform their patients of all medical interventions, NICE approved or not. Another opinion was that this matter was better left to a social worker/nurse who would judge, based on her/his knowledge, of the patient's financial status, whether the patient should be told about an intervention not approved by NICE.