Genetics White Paper Initiatives: Results of Recent Bids

Most of you will be aware that over the last few months, the results of the bids for two of the initiatives mentioned in the Genetics White Paper have been announced;

The first bid was for an NHS Genetics Education and Development Centre

The proposed aim for this centre is to “facilitate and catalyse education in genetics for non-genetic healthcare specialists within the NHS”  The centre will work with professional bodies and established educational organisations to get genetics on to the syllabuses and curricula for healthcare staff, from undergraduate to CPD.

The successful applicants for this bid were the team led by Professor Peter Farndon at Birmingham Women’s Healthcare Trust. We offer them our congratulations and look forward to seeing the results of this initiative, which is clearly a very important one for all of us who are being asked to contribute increasingly to genetic education of various grades and specialties.

The second round of bidding was for Service Development Initiatives

There were opportunities here to bid for funds for two-year pilot projects, with one of the main aims being to support developments which would bring the benefits of genetics into mainstream clinical areas, and support particularly initiatives in primary care. There were 26 applications for these bids, and there was disappointment that only a few concerned initiatives which involved primary care. There could be several reasons for this, but it may reflect the difficulties that primary care physicians have in seeing themselves as deliverers of genetic services,  in terms of time commitments, the level of education they would need to feel confident providing these and the overall importance of genetic disease within general practice , for example, compared to the number of patients with more common disorders. It perhaps suggests also that the services provided within the secondary/tertiary care settings are actually pretty good. The NHS genetics team will be considering how to further encourage developments in the primary care area, and it seems likely that there will be a new round of bids for this.

10 of the 26 bids were funded and these were as follows: 

• Development of an integrated pathway for familial haemochromatosis through a clinical nurse specialist seconded from the liver service to genetics.

Centre: Nottingham City Hospital

• Development of culturally sensitive strategies fro raising awareness of incidence and implications of inherited conditions affecting the Asian Community

Centre: University Hospital of Leicester

• Development of a specialist ophthalmic-genetic counsellor and care pathways

           Centre: Oxford Radcliffe Infirmary

• Development of integrated care pathways and guidelines to facilitate and monitor specific genetic disorders in primary and secondary care. Examples NF1, achondroplasia, TS, Sudden cardiac death

Centre: Central Manchester and Manchester Childrens University Hospitals

• Developing a liaison service for genetics in medical specialties “Dial-gen” Involving cardiology, haematology, neurology, respiratory medicine and CF, fetal medicine

Centre: Cheshire and Merseyside Genetics Service

• Establishment of culturally sensitive community based genetic service in an area with a high incidence of autosomal recessive disorders

Centre: NW region Hospital Trusts linked to St. Mary’s Manchester

• Integration and development of renal genetics and nephrology service

Centre: Addenbrooke’s Hospital Cambridge

• Development of patient pathways to identify the risk of genetic disorders in [primary care and introduction of specialist nurse led clinics to manage follow-up in secondary care

Centre: Birmingham Womens’ Hospital

• Establishment of a targeted educational programme covering a wide range of genetic diseases and open to health care professionals in primary, secondary and tertiary care catchment area

Centre: Guys and St Thomas’s NHS Trust

• A proposal for genetic nurse practitioners/counsellors to work in the community.

Centre: Great Ormond St Hospital NHS Trust

This information is also available within the Genetics area on the dh (Department of Health) website which can be accessed at www.dh.gov.uk  This website also gives details of the new Travelling Fellowships which are now also available. The purpose of these fellowships is to promote learning exchange in the application of genetics to healthcare. They will provide support for short international visits of up to three months in total, hosted by a healthcare setting or academic centre, to share knowledge which will improve the application of genetic science to health care for the benefit of NHS patients. Closing date for applications is mid-September, although applicants will have been expected to express interest by the end of July. For those who have never had the opportunity before this is your chance to visit a centre of expertise, learn a new skill or increase your knowledge of a topic which interests you.