Following a meeting of the All-Party Parliamentary Group on Genetic Haemochromatosis last month, Chair Sir John Hayes CBE MP has written to the Secretary of State for Health & Social Care, Steve Barclay MP and Minister of State, Helen Whately MP to seek a meeting with the APPG to discuss the benefits of genetic screening for the condition and to seek their support in resolving ongoing challenges in NHS BT's GH donor scheme.

The letter follows discussions at the April APPG where members noted a resistance in sections of the clinical community to screening. Following consideration of our cost of illness study and recent early-stage research into prevalence and health economics of the condition in Northern Ireland, Sir John observed that "the financial savings of screening and early diagnosis could outweigh the costs of such a programme".

The APPG has also sought to discuss with the Minister various operational issues within NHS BT which are preventing the realisation of the benefits of the new GH donor scheme.

Members of the APPG at Portcullis House last month (left to right) :

Kevin Foster MP (Conservative for Torbay)
Liz Twist MP (Labour for Blaydon)
Rt Hon Sir John Hayes CBE MP (Chair, Conservative, South Holland & the Deepings)
Neil McClements, CEO Haemochromatosis UK
Ben Lake MP (Vice-Chair, Plaid Cymru, Ceredigion)

Also attending (out of picture) :

Liz Saville Roberts MP (Plaid Cymru for Dwyfor Meirionnydd)
Peter Grant MP (SNP for Glenrothes)