Funding for NHS genetic services in the UK

The Human Genetics Commission (HGC) is an independent body, which was established in 1999. Its role is to consider the ethical, social and legal implications of advances in human genetics, to listen to the public and to advise ministers on what, if anything, the government needs to do. The appointed commissioners include experts in science, clinical genetics, healthcare, ethics, law and consumer affairs.

During an information gathering session in 2006, concerns were raised about the effects of financial savings in the NHS, so the Commission wrote to the heads of regional genetics centres in England to ask what impact this was having on them. The results were presented to Commissioners, who requested a follow-up survey in May 2007, this time also including centres in Scotland, Wales and Northern Ireland.

The HGC asked about the budget allocated to each centre and what that was designed to cover, the size and effect of savings that centres were required to make by their host Trusts, the existence of 'demand management processes' (designed to reduce the number of patients seen and the number of genetic tests performed) and enquired whether staff numbers had been affected.

Responses were received from 22 centres across the UK including 19 from the 25 regional clinical genetics departments and three from the eight stand-alone specialist laboratories contacted (most laboratories sit within regional genetics centres). There was a fair spread across the country with only Northern Ireland, NW Thames, and Newcastle not represented in the replies.

The key message is that most services (apart from those in west Scotland) are being asked to make savings; but there is no evidence that genetics services are being treated differently from other clinical services. Savings range from 2.8 per cent to 7 or 8 per cent per annum and in many centres vacant posts are frozen. Some of the largest savings targets have been set by financially successful Trusts. The financial situation is easier in Scotland. The need for savings is unsurprising given the current financial situation in the NHS as a whole, but many centres highlighted the effect that cuts have on relatively small specialist services where freezing a single post can compromise the delivery of a specific service disproportionately.

Many centres now use referral criteria to help identify patients who need to be seen, which is good clinical practice. More formal demand management procedures are in place in some areas. These may involve clinical genetics staff reviewing referrals, but sometimes referrals are vetted and approved (or rejected) by non specialised staff in external centres set up by PCT and there are concerns that clinically appropriate referrals may be blocked. Additionally, some hospital consultants are no longer allowed to make direct referrals to other consultants, but have to write to the GP and ask him/her to consider doing this. This introduces delays, creates extra work for the GPs and may require patients to make an additional visit to the GP before a referral is made.

The cost of 'send away' tests is problematic as few centres have an identified budget for this. Genetics tests for rare diseases may only be done in a few laboratories and can be very expensive (typically several hundred or even a few thousand pounds). As new genes are cloned and more diagnostic tests developed, the demand for tests will increase. If there are several potentially affected individuals within one family the bill can be considerable. In the past, genetics centres absorbed the cost of all 'send away ' tests requested by doctors in their region, whether or not they had seen the family themselves. As this is now unaffordable, some centres now recharge the referring clinician if he/she works outside the regional genetics centre. Genetics centres that have their own DNA laboratories can earn extra income by performing tests for other centres, which helps balance the books. Many centres report specific difficulty in providing a cardiac genetic service. HGC Commissioners have seen a presentation about cardiac genetic testing in which the financial value to society of cardiac genetic testing was demonstrated: Health Economists demonstrated that the additional cost of genetic tests per added life year (QALY) is only £12,000, therefore restricted funding for the provision of a service for families with rare treatable inherited cardiac conditions which, if undiagnosed, can cause sudden death, cannot be justified.

Government targets such as the requirement to see all patients referred within a specified number of weeks and the implementation of Agenda for Change (the new pay structure in the NHS) cause additional pressures. There is general frustration that progress achieved following the investment accompanying the Genetics White Paper is being restrained as services cannot always identify money to retain staff recruited for specific projects and are unable to invest in expanding services to meet enhanced patient expectations.

Following discussion of the results, the chair of the HGC will write to Ministers with a summary of the concerns raised. Hear the HGC's discussion of these findings at Plenary Meeting.