The first APPG for Genetic Haemochromatosis of 2020 was held at Portcullis House in Westminster on Wednesday 5th February.

The new chair was announced as the Rt Hon Sir John Hayes MP (Consevative, South Holland and the Deepings) and Vice Chair as Ben Lake MP (Plaid Cymru, Ceredigion).

The meeting was attended by MPs across the political parties; Dr Rupa Huq MP (Labour, Ealing Central & Acton) and Angus Brendan MacNeil MP (SNP, Na h-Eileanan an Iar)  

Ben Lake congratulated HUK on the recent media coverage; the charity had achieved a lot of press and media coverage since December, including articles by Sir John Hayes on GH, phone-in’s on BBC Radio Scotland, coverage in the Mail on Sunday and lots of local press in Wales and Lincolnshire.

Neil McClements, CEO for HUK explained that the coverage generated by the APPG’s new Chair, Sir John Hayes, had stimulated a lot of community awareness and created several new opportunities for public engagement.


Ben Lake drew particular attention to the “Call the Midwife” BBC TV programme featuring genetic haemochromatosis (aired in January); the charity and its clinical advisors had been involved in helping the producers refine the storyline during 2019. Click on this link for a synopsis of the programme; Call the Midwife

During the meeting Gerri Mortimore, University of Derby, presented a report regarding NHS Clinical Protocols for genetic haemochromatosis. She explained how a survey had been initiated by HUK to 176 NHS acute/secondary care trusts and health boards in England, Wales, Scotland and Northern Ireland. The focus of the survey was to understand current clinical practice regarding the care of people with genetic haemochromatosis across the UK.

The next APPG meeting will be held at Portcullis House on 20th May at 3pm.

Minutes of the meeting can be viewed here: