Genetic Alliance UK in Wales:

Campaigning: Familial Hypercholesterolaemia (inherited high cholesterol)

Improving Diagnostic Services in Wales

Since September 2006, Genetic Alliance UK led the campaign with colleagues to promote the need for a Wales wide service to identify those with familial hypercholesterolaemia (FH). Genetic Alliance UK was instrumental in bringing together families affected by FH from across South Wales, creating the South Wales Family Forum to learn more about their condition, meet other families affected by FH and enable them to participate in the discussion around the future of health services and policies for FH with the Welsh Assembly Government.

In September 2010 a Wales wide service was launched, following a commitment for funding from the Welsh Assembly Government.  This followed considerable effort from a wide range of families, healthcare professionals from many different organisations to demonstrate the enthusiasm and dedication required to make this service a reality. This is a fantastic achievement.

For more information about FH and the work in Wales, go to: www.fhwales.co.uk

Leading the Way

Wales is leading the rest of the UK in delivering a diagnostic & management health service for FH. 

The South Wales Family Forum group strongly supported the establishment of a Wales-wide group.  Their work to campaign on this matter had significant impact in achieving political and government support. A media campaign involving Forum families achieved better awareness of this subject.  To date this includes several articles in the Western Mail national paper, regional papers, several BBC radio Wales and Cymru, BBC TV news and S4C newyddion and two ITV Wales interviews.

 Forum members in July 2008

As part of the campaign with the Forum in December 08, March 08 & March 07 Genetic Alliance UK organised successful events at the National Assembly for Wales.  Here, FH Forum members and health professionals had the opportunity of meeting and talking to politicians and civil servants about the value of an early diagnosis and how it keeps them and their families healthy, preventing coronary heart disease and saving lives.

 

Alastair Kent, Genetic Alliance UK; Theo Coliandris, Forum Member and Dr Ian McDowell, FH Special Interest Group at the Assembly Reception in March 2008.

Janice Gregory AM, John Griffiths AM, Jane Hutt AM, Alastair Kent, Genetic Alliance UK; Dr Mike Penney, Royal Gwent Hospital and Rosemary Butler, AM at the Assembly Reception in March 2008.

Support and high commendation for an FH service was received from the Welsh Assembly Government (including the Health Minister, Chief Medical Officer, Deputy Chief Medical Officers, Chief Nursing Officers and the Clinical Lead for Cardiac Service). Political support is demonstrated through a Statement of Opinion (early day motion / petition) OPIN-2008-0026 which was supported by 35 (out of the eligible 45) Assembly Members. This was the most supported Statement from the 07/08 Assembly session. 

Government policy strongly recommends FH cascade screening. This includes the Welsh Assembly Government?s National Service Framework for Coronary Heart Disease and the recently published NICE guidelines for FH diagnosis and management.

Familial Hypercholesterolaemia in Wales

In Wales, it is estimated that there are 6000 people affected with FH (1 in 500 people).  Currently, only 1200 are known, meaning approx. 4800 people have no idea they have this genetic condition and are not receiving any management or treatment.  
People are often only identified after developing CHD and suffering a heart attack. This new service will now identify those individuals who are at risk before they develop any symptoms, meaning if properly managed and treated they will remain healthy.

For more information about FH and the work in Wales, go to: www.fhwales.co.uk
or please contact:  Buddug Cope, Genetic Alliance UK officer for Wales.

A regular newletter is sent to all Forum members every quarter and is produced and distributed by Genetic Alliance UK.

Below are a sample of the previous newsletters.