Shared learning database

All Wales FH Service
Published date:
February 2016

The Wales Familial Hypercholesterolaemia (FH) service, based around NICE CG71, aims to provide an equitable opportunity for the people of Wales to access specialist FH services including counselling, genetic testing and cascade family testing and specialist treatment. However, there is a wide variation in awareness of FH in primary care. Several initiatives have been developed to increasing the awareness of FH including :a web-based GP education package, primary care awareness folders and ‘Finding FH in Primary Care’ schemes. These initiatives are designed to facilitate delivery of recommendations to 

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

To improve the awareness of FH within primary care with the aim of increasing referral rates and subsequent detection of patients by the All Wales FH Service Objectives: The main objective was to deliver FH education and ongoing support to primary health care professionals. This was done using the FH specialist nurses’ expertise and understanding of primary and secondary care processes.

Two objectives to deliver this were planned:

1. Development of primary care education packs to support awareness sessions.

2. Development of an FH e-learning program including a teaching video and appraisal package, to support practices.

Reasons for implementing your project

The All Wales FH Cascade Testing Service was set up in 2010 based on the recommendations in section 1.2 of NICE CG71.

Its priorities were to:

• Identify individuals and families in Wales with possible FH.

• Improve the diagnosis by offering genetic testing for FH

• Implement family cascade testing for families with an identified genetic FH mutation

• Provide effective treatment of elevated cholesterol in order to reduce the risk of premature coronary heart disease for individuals with FH. In doing this, the service aims to diagnose 60% (3600 individuals) of those affected in Wales, over a 10 year period (2010-2020).

Objectives to achieve this were to increase numbers of patient referrals to the service, this included index cases and family members, who would receive FH genetic testing.

The projected number of index patients to be seen in the first 18 months of the service launch October 2010 – March 2012 was 801. The actual number of patients seen was 371 representing a shortfall of 430 (46%).

During this time, awareness sessions had been undertaken across Wales, new lipid clinics had been created in areas of Wales and FH genotyping had become established in clinics. An FH ‘think tank’ day was arranged in September 2012, to address this and other issues. This involved all stakeholders: primary and secondary care, cardiac networks, clinical and management staff.

Challenges were identified as:

  • Loss of Map of Medicine funding, reducing IT support for identification and management of FH in primary care.

Difficulty in accessing GPs and practice nurses due to:

  • The re-structuring of Local Health Boards and withdrawal of some primary care forums.
  • Lack of time and support for single handed GP practices to attend awareness sessions

The key was increasing access to primary care practitioners, to educate, support and promote secondary care referral for possible FH patients. Treatment for FH is generally well tolerated so FH patients are often treated in primary care without a formal diagnosis of the condition. Unfortunately this does not identify them for genetic testing or further family cascade. NICE CG71 states in its research recommendation 4.1 : ‘Research is needed to compare the utility of strategies other than cascade screening to identify new index individuals, because currently recommended strategies are likely to lead to the identification of less than 50% of the expected number of people with FH in the UK’.

How did you implement the project

Development of primary care education packs to support awareness sessions. Although FH awareness sessions were being carried out routinely across Wales by the FH clinical team, there were no resources for individuals to take away to assist them in remembering the information they had received. The FH specialist nurses created a GP awareness flyer to promote the process of referral, but also to link to local specialist clinics and personnel.

One barrier to identifying FH patients in primary care, is that they are often already on lipid lowering medication, and often with no recorded pre-treatment cholesterol levels. To attempt to overcome this, on the reverse of the GP flyer, there is a correction table to allow for estimation of pre-treatment cholesterol level based on current statin therapy. These fliers were added to folders including BHF FH information books, referral forms and clinical guidance leaflets including criteria for diagnosing FH.

These were then made freely available at all presentations given by the team. Development of a primary care focused FH e-learning program and appraisal package. There are many practices that for several reasons have been difficult to access and these include single handed practices. This difficulty led us to develop a web-based primary care teaching video. There are no financial incentives to support the identification of FH in primary care (ie. Quality Outcome Framework). To encourage GPs and practice nurses to take the time to view this educational videos, the Wales FH service is promoting FH as a topic for appraisal. All GPs and practice nurses are required to show evidence of learning and reflection as part of the appraisal or registration process.

The FH service developed a web based teaching package to support this approach. An application has been successful for this web-based package to be accessible from any computer with internet access at home or in work. Learning is assessed using multiple choice questions and relevant local and national documents are included in the package for further support.

A record of achievement can be printed in form of a certificate and a link to the Electronic Staff Record (ESR) enables further proof of its completion. The aim of this approach will support those professionals who have difficulty attending professional development sessions.

Key findings

Results and evaluation are ongoing. The initial primary care education packs were initialised from January 2013, and the feedback has been supportive. The particular benefits stated include the re-enforcement of key information to assist in clinical decision making that occurs in primary care and secondary care referral guidance.

It remains difficult to determine the impact of this flyer separate from the other initiatives, introduced to improve referral rates. However, with figures based on numbers seen in the financial years, the number of patients seen has increased by 104% between years 2013/14 to years 2014/2015. Primary care packs have been well received, with GP fliers being used at many conferences, and shared with other healthcare teams across England to assist with their primary care objectives.

The web-based video is complete and accessible via the learning website to those in Wales with an authorised NHS email address. Developments are ongoing to increase the access UK wide, However, this is currently only available in England, Scotland and Ireland to those who have had their email addresses authorised by the Wales FH team.

The e-learning program includes sections about the scientific basis of FH, the cascading process, identifying patients within primary care and a patient story. Although this program is live, following robust evaluation and the launch date is pending the successful application of Continued Professional Development accreditation from the Royal College of Nursing (RCN) and the Royal College of General Practitioners (RCN).

Key learning points

Awareness of FH within primary care is an integral aspect to increasing identification of FH. Wales, like many areas of the United Kingdom is geographically diverse. Different approaches to raising awareness of FH in primary care are needed to increase referral rates.

The barriers we encountered were generally linked to access to primary care physicians. Many practices are single handed, with limited time or resources to continue developing their skills externally. Therefore an approach that delivers as much information as possible within their locality, overcomes this barrier. GP primary care packs are an easy and accessible delivery of this information and the web based video aims to be accessible for those not able to attend continuing education sessions, with the added advantage of being linked to appraisal objectives.

The All Wales FH Service has worked across multidisciplinary groups to enable several approaches to be implemented. The support of the stakeholders such as consultant chemical pathologists, primary care, local health boards, cardiac networks, clinical governance and data protection leads has been crucial in the development of these initiatives and good communication is key to their success.

Contact details

Rhiannon Edwards
Familial Hypercholesterolaemia Clinical Nurse Specialist
All Wales FH Service

Medical Genetics
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