Learning from the programme
The findings from all eight pilot areas have informed a number of resources, including publications and an online service development toolkit, to help share our learning.
We have written several articles for Macmillan Voice, our magazine for Macmillan postholders:
Sharing good practice: sustaining new services
Oldham project article
Role of service user representatives article
South East London & Teesside projects article
West Yorkshire project article
The journal Familial Cancer also published a special edition about the programme in June 2007 (volume 6, no. 2).
Mick Mason, a service user involved in the programme, co-wrote the article 'Coping with FAP: The role of patients' associations'. The article is about FAP gene (you can find out more on the FAP gene website) and features in Intestinal polyps and polyposis: From genetics to treatment and follow-up.
Online toolkit for developing services
The NHS National Genetics Education and Development Centre has designed an online toolkit for developing genetics services in mainstream healthcare.
The toolkit was developed from Department of Health-sponsored service development initiatives, including the cancer genetics programme.
It covers 10 key areas to consider when developing genetics services.
The Centre's website contains a wealth of resources about genetics education, applying genetics in clinical practice, and workforce competencies for non-genetics healthcare staff.
External evaluation of the programme
A team at Nottingham University evaluated a number of genetics service development initiatives, including the cancer genetics programme, for the Department of Health. Several cancer genetics pilots were case study sites in the evaluation.
NHS commissioning guidance
We have developed NHS commissioning guidance for cancer family history services, using the learning and outcomes of the cancer genetics programme. The guidance is part of the Department of Health's Cancer Commissioning Guidance 2009. Please refer to section 3.2 (found in the Prevention section).