FH Day of Action 26 January 2021.

What was the FH Day of Action all about?

The purpose of the FH Day of Action was to offer an opportunity for MPs to learn more about living with FH directly from people living with and affected by FH. 

FH (or Familial Hypercholesterolaemia) is an inherited condition which can lead to potentially dangerously high cholesterol levels. It is passed down through families in the genes. It affects 1 in 250 people in the UK, yet over 90% of cases are still undiagnosed, leaving many people untreated and putting thousands of lives at risk.

The Government has committed to change

In January 2019, the NHS Long Term Plan for England committed to increasing detection of FH to 25% by 2024, however, since the start of the COVID-19 pandemic in March, time and resources have been shifted away from other areas of healthcare, and more work is needed to be done to ensure that NHS England is held to account on these commitments.

Two years on, we urge parliamentarians and decision-makers to ensure the commitments made in the NHS Long Term plan have not been abandoned.

What happened?



We produced a campaign pack to help highlight FH with MPs. The pack included suggestions on how to effectively use social media, plus #FindFH as the campaign hashtag, template letters to MPs and setting up a meeting with constituency MPs.

45 letters were sent to MPs

Meetings with MPs, including Theresa May MP, Holly Lynch MP, Jason McCartney MP, Henry Smith MP

Parliamentary Questions have been tabled in the House of Commons


There was a lot of activity on Twitter over the day

100 mentions of the #FindFH hashtag from 39 unique users

Reach of the hashtag #FindFH was over 85,000


We've already had many commitments from MPs to ask questions in Parliament, write to the Secretary of State for Health and the chief executive of the NHS.

We have met with former Prime Minister, The Rt. Hon. Theresa May MP

Home Secretary and MP for Witham, The Rt. Hon Priti Patel MP wrote to the National Medical Director at NHS England and received a reply confirming commitment to the 25% target

We have met with former chair of the All Party Parliamentary Group for Heart and Circulatory Disease, Henry Smith MP

A letter from Matt Hancock, Secretary of State for Health, confirming commitment to finding more FH cases 

A commitment from chief executive of the NHS of £500,000 towards identifying FH in young children

£335,000 towards a national database for FH


What else has HEART UK done for people affected by FH?

  • We have successfully campaigned to get more investment in the NHS for those with FH
  • We are campaigning for children with FH to be screening and supported by the NHS
  • We provide support and factual information for people affected by FH
  • We lobby Parliament
  • We provide free training and support for doctors and nurses
  • We work with pharmaceutical companies to provide treatment for people with FH

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