1. Introduction to the HEART UK FH Toolkit Dr Jonathan Morrell, Chair, FHGIT Dr Dermot Neely, Chair, Medical Scientific & Research Committee

2. Summary Why develop the FH Toolkit? Development process Aims and structure of the Toolkit Sections of the Toolkit Ongoing work

3. Why develop the FH Toolkit? NICE FH Guideline published August 2008 HEART UK involved in developing NICE Guideline. Sound arguments for implementation – health outcomes, economic case… …But little progress in implementation

4. Development process In 2009, HEART UK established FH Guideline Implementation Team (FHGIT) FHGIT comprises UK experts on FH Launch of initiatives in Wales & Scotland, meant FHGIT concentrates on England Commercial support from MSD, Pfizer and Genzyme

5. Development process Toolkit developed by FHGIT and hanover communications agency Examples of documents, models, good practice and resources sourced from around the UK

6. Aims and structure of Toolkit Aid implementation of NICE FH Guideline Target audience: service providers, healthcare professionals, commissioners Comprises six sections; designed to work in combination or as standalone Toolkit can be used to help set up the whole service, or to assist with implementation of specific elements Includes template documents, which can be used or adapted to suit local needs

7. Sections 1 & 2: Guide to use and Background Section 1 includes summary of each section and information on how to use toolkit to implement FH services in your area Section 2 provides background information on the condition, key elements of the NICE Guideline, list of key influencers

8. Section 3: Service specification The first step towards implementing the NICE Guideline is to set out specifications for FH services for local commissioners and healthcare professionals Section includes examples of strategic plans submitted in three regions of the country Since work on this toolkit began, the Department of Health has also undertaken to develop a Primary Care Service Framework for FH. This will be included when available (~ March 2010).

9. Section 4: Diagnosis An overview of the protocols for diagnosing FH in patients, including the criteria for making clinical diagnosis of FH Also includes information on DNA testing and LDL-C concentration measurements, recognising clinical signs of FH, and the differences in diagnosing adults and children.

10. Section 5: Cascade testing Implementing cascade testing for FH is a key component of the NICE Guideline This section includes overview of methods and documents required for contacting relatives; template documents for contacting practitioners; a section on cataloguing and maintaining family files; and National Genetics Education and Development Centre guide Taking and Drawing a Family History

11. Section 6: Governance & Protocol Contains documents for managing the ongoing FH services in your area. This includes standard operating procedures, resources for conveying information to patients, and information on governance and responsibilities within an FH service

12. Ongoing work Toolkit will continue to be updated as new documents, models and examples of practice emerge Toolkit promotion campaign to commence shortly Download the Toolkit: www.heartuk.org.ukwww.heartuk.org.uk

13. Contact If you have a problem, if no-one else can help, maybe you’d like to contact the FHGIT… We may be able to help answer your implementation questions Contact Slade Carter sc@heartuk.org.uksc@heartuk.org.uk