We don’t know yet when the forthcoming UK general election will be called, exactly. But many at Westminster are preparing to campaign and refining policy ideas to influence manifesto development. 

So last week, the Labour Shadow Cabinet invited Haemochromatosis UK to discuss how their policy team might learn from - and involve – the voluntary sector in delivering public services if they win the forthcoming UK national election. The meeting brought together a range of policy advisers, 17 Labour Shadow Ministers and voluntary sector groups, with a keynote address by Sir Keir Starmer MP.

Speaking Truth To Power

Haemochromatosis UK is not a political organisation. We have no party political allegiances or views. Our All Party Parliamentary Group On GH at Westminster is almost uniquely cross-party, including as it does, abstentionist members of Sinn Fein, alongside the other main parties at Westminster.

However, we recognise that – increasingly – the challenges faced day-to-day by our community are structural in nature, and largely the result of variable NHS policy and practice. To address these structural issues, we need to be talking to the people developing public health policy, including elected representatives across the political spectrum.

Our Preventative Health Screening Programmes

We’d been invited by our friends at Pro Bono Economics, who had collaborated with us in developing our Northern Ireland Cost of Illness health economics model. The subsequent report drew upon data drawn from our genetic screening programmes in Northern Ireland (Derry-Londonderry, Carrickfergus, Belfast and Newry) over recent years.

Through our research, we’ve established that 1 in 10 people locally are at risk of the condition. Not only is GH significantly under-diagnosed in Northern Ireland, but that the costs of treating the ill-health arising from late diagnosis exceed £38 million per year.

This collaboration with PBE – and the impact it had on elected representatives at the Stormont Assembly – was cited in a report delivered to the Shadow Cabinet, illustrating the power of the charity sector in shaping and delivering public health policy.

We know from our earlier work with York Health Economics Consortium, that the costs of illness for GH nationally outweigh the treatment costs. That’s before we consider the misery and wider impacts that the condition can bring when undiagnosed, discovered later in life or poorly treated.

And so, with these factors in mind, our CEO Neil McClements met with several Shadow Cabinet members, including those with responsibility for health and the social care. They included Wes Streeting MP (Shadow Health & Social Care Minister), Karin Smyth MP (Shadow Minister for Health), Liz Twist MP (Shadow Levelling Up, Housing & Communities Minister), Lilian Greenwood MP (Shadow Minister for Culture, Media & Sport) and Baroness Merron (Shadow Spokesperson for Health & Social Care).

There was a candid exchange of views on the challenges facing the NHS and the potential role for voluntary sector organisations like ours in delivering preventative health services. Brevity prevents the publication of all the remarks. However, a detailed summary of the meetings is available to Haemochromatosis UK members.

In Summary

This was a first step in what we hope will be a renewed cross-party discussion on the benefits of screening for GH and the role of preventative healthcare, generally. We expect conversations to develop over the coming months, with all the political parties.

We will continue to press for a more preventative approach to GH, through testing and screening. And for the NHS properly prioritise GH as a condition, so that people don’t have to languish on waiting lists for months or years, awaiting diagnosis and treatment.

Help us lobby for change! Over the coming months we hope you will join in us, to advocate with our political representatives a better world for people affected by GH.

Later this year, we’ll be providing some briefings and letter templates you can use with your MP and prospective parliamentary candidates. Lobbying is something everyone can do.

Together, our stronger combined voice should help raise awareness not just of GH, but of the structural issues which need to be resolved to ensure people affected receive timely, top-notch diagnosis and treatment.