Shared learning database

Published date:
February 2011

HEART UK developed this toolkit to assist with implementation of the NICE Clinical Guideline on the identification and management of familial hypercholesterolaemia (FH). The toolkit is aimed at commissioners and relevant healthcare professionals.

Guidance the shared learning relates to:
Does the example relate to a general implementation of all NICE guidance?
Does the example relate to a specific implementation of a specific piece of NICE guidance?


Aims and objectives

The FH Toolkit aims to assist commissioners and healthcare professionals in the implementation of NICE Clinical Guideline 71, Identification and Management of familial hypercholesterolaemia (FH). The NICE clinical guideline was published in August 2008, and makes recommendations on the roll-out of a comprehensive service for FH. The guidance covers diagnosis (both LDL-C and DNA testing), identification of family members with FH using cascade testing, management of the condition, information needs and support, and ongoing assessment and monitoring. This toolkit focuses mainly on the practicalities of getting services in place, diagnosing patients, and the roll-out of cascade testing. The intention is to continue to update the toolkit with new documents, templates and resources as they become available. The objective of the initiative is to assist commissioners and healthcare professionals in the implementation of the NICE Clinical Guideline on FH. Despite national support for the Guideline, little progress has taken place in England towards rolling out the Guideline locally. The objectives of the Toolkit are to explain FH, and to provide a comprehensive suite of resources for the various components of the NICE Guideline. HEART UK is aware that some components of the Guideline are being implemented already, but evidence suggests that this is taking place on an ad hoc basis in England. The objective of the Toolkit is to provide a resource that covers all components of the Guideline as a complete service for diagnosing and treating people with FH. The Toolkit has six sections: guide to using the Toolkit; background; service specification; diagnosis; cascade testing; and governance and protocol.

Reasons for implementing your project

Before working on the Toolkit, HEART UK established its FH Guideline Implementation Team (FHGIT), whose aim is to advocate, support and develop materials for furthering the rollout of the NICE FH Guideline. The Toolkit was agreed as a priority for the FHGIT, since it was apparent that there was little progress in implementing the Guideline in England. This resource would become a reference point for FH. The Royal College of Physicians' FH audit and HEART UK's subsequent Freedom of Information requests to PCTs confirmed that little progress has been made on FH in England. The Toolkit identifies projected costs and savings in local examples of FH project bids.

How did you implement the project

HEART UK has worked to encourage utilisation of the FH Toolkit. It been widely promoted through electronic distribution media, through regional FH meetings, and through its formal launch at a conference in 2010. The project incurred costs, including the cost of working with an agency on drafting and designing the Toolkit, its promotion and conference launch.

Key findings

HEART UK sent Freedom of Information requests to PCTs about their FH activities at the time of the launch of the Toolkit. Results of the FOI request indicate little progress on implementing the NICE FH Guideline in England. One year since the Toolkit was launched, it still appears that little progress has been achieved. However, the Toolkit has been formally endorsed by Professor Roger Boyle, National Director for Heart Disease and Stroke, HEART UK has hosted successful regional FH events showcasing the Toolkit, and local bids for FH services have utilised the Toolkit. Furthermore, the Primary Care Service Framework - aimed at commissioners - also references the Toolkit. Recent media activity around FH has raised the profile of the condition with the public and healthcare professionals alike. HEART UK still awaits full implementation of the NICE Guideline, but there has been positive progress in Northern Ireland, Scotland and Wales. The Toolkit remains a useful lobbying and reference point for positive change.

Key learning points

It can be difficult advocating any project that requires some upfront investment, even if it saves lives, money, and the costs associated with morbidity in the longer term. But such projects still matter, because people matter. So, don't be disheartened, and keep your spirits up.

Contact details

Slade Carter
Campaigning and Public Affairs Manager

Is the example industry-sponsored in any way?

Supported by grants from MSD, Pfizer and Genzyme.