27 July 2007
Results published today in the June special edition of Familial Cancer show that at least 55 per cent of people concerned about a family history of cancer who took part in a pilot genetics programme were assessed as having an increased risk of cancer, compared to the average population.
Macmillan Cancer Support, the UK's leading cancer care charity, and the Department of Health jointly funded a £1.75 million pilot programme to explore new ways of identifying people with a family history of cancer and providing them with appropriate advice, support and care.
Glyn Purland, Macmillan Lead for the Cancer Genetics Partnership Programme, said: "Results from the programme so far show there is a real need for developing further genetic screening services that offer risk assessment and support services for people with a family history of cancer.
"A small proportion of breast, bowel and ovarian cancers are genetic and run in families. Recognising people at risk with a family history of cancer means they can be offered support, regular screening or genetic testing to prevent cancer or detect it early on."
Other research findings from the pilot programme found that:
People concerned about a possible risk of inherited cancer have been able to access an initial risk assessment quickly and easily
Services have resulted in a better use of specialist clinicians, who are seeing more appropriate referrals
Services have been able to avoid unnecessary and inappropriate screening
Through careful planning and promotion, services have reached those from ethnic minorities and more deprived areas who had been previously under-represented in referrals to cancer services, although challenges remain.
Professor Mike Richards, National Cancer Director, said:
"The NHS Cancer Plan pledged that the Department of Health would work with Macmillan Cancer Support to develop new services to improve cancer genetic risk assessment and counselling. This special edition of Familial Cancer outlines the great progress of the pilots set up to achieve these aims. We now need to ensure that the learning from the pilots is rolled out into routine NHS services. We are working to ensure this happens, and the importance of this work is being taken into account as we develop the new Cancer Reform Strategy."
The pilot programme has run in seven areas between 2004-2007. In each area GPs, community nurses, local cancer experts and specialised genetic services have worked together to raise awareness of genetic risk in the public and primary healthcare communities, and to ensure that patients who are concerned about their family history of cancer are properly assessed and receive care which is appropriate to their level of risk.
For many people the outcome of their assessment has been reassurance that no further intervention is needed. For others, it has involved enrolment onto screening programmes, advice and support around prevention and treatment options, and in some cases genetic testing to more accurately gauge their level of risk.
The cancer genetics pilot programme is part of an effort to help realise a key aim of the Government's 2003 White Paper, "Our Inheritance, Our Future - Realising The Potential Of Genetics In The NHS": to ensure NHS patients benefit from the most up-to-date genetic knowledge and technologies.
For further information, please contact:
Julia Anderson – Macmillan Cancer Support Press Office, Tel: 020 7840 7803 (out of hours 07801 307068) or email firstname.lastname@example.org
Notes to Editors
1. The contents of the June special edition of Familial Cancer are now freely available at http://springerlink.metapress.com/content/105711/ - click on the link to Volume 6, Number 2 / June 2007. Free access to the special edition will last for six months. After this time, access will be restricted to journal subscribers.
2. Services were piloted in the following areas:
South West London Cancer Network and joint cancer centres
Yorkshire Regional Genetics Service, North Kirklees Primary Care Trust and Bradford Hospitals NHS Trust
Cancer Care Alliance (South Durham, Teesside and North Yorkshire).
South East London Cancer Network, Lambeth and Southwark Primary Care Trusts and specialist cancer services at Guy's and St Thomas' Hospital and the Regional Genetics Centre at Guy's and St Thomas' NHS Foundation Trust
Poole Primary Care Trust
Somerset Coast Primary Care Trust
Oldham Primary Care Trust
3. A person's genetic risk of cancer is assessed as average (also called population), moderate or high risk. In the pilot programme, the number of people assessed at a particular level of risk has varied from pilot to pilot. Among the seven pilots, the minimum number of people assessed at above-average genetic risk was 55per cent. In some pilots, the percentage of people assessed at above-average risk was higher than this. More information about the seven pilots, including their risk assessments, is available upon request.
4. When the pilot programme was created, each of the seven pilots was required to establish local user involvement. The pilots were also invited to send user representatives to participate in a national user reference group, which has met quarterly since 2004 to share experiences and spread learning across the pilots. One of the articles in the Familial Cancer special edition is devoted to describing the work of this national group of patients and carers, who have contributed diverse skills and experience and helped to make the local services patient-centred.