The Covid-19 pandemic has profoundly affected our community. Two recent HUK research projects explored some of the challenges - and looked for solutions.

Over the summer, we asked 130 people with genetic haemochromatosis about their experiences during the pandemic. Perhaps unsurprisingly, almost half of respondents felt that their NHS treatment had gotten worse. Many people noted the challenges around arranging blood tests with their GP and the worrying number of hospitals that cancelled venesection appointments up and down the country. 

Early-on in the pandemic, our helplines saw a five-fold increase in people seeking help and advice. Common concerns included whether people with genetic haemochromatosis should be shielding, what steps people should be taking if they have organ damage (including liver disease, diabetes and cardiomyopathy) and specific queries about the suspension of venesection services.

We were delighted to be joined by Dr Susan Hancock (Fellow of the Royal College of GPs) for two question and answer sessions on Covid and GH - part one and part two. Collectively, these videos have been watched over 2,000 times for over 200 hours in total! With the support of the National Lottery CV19 Emergency Response Fund, we have produced a range of resources, available free to members and online.

Our fundraising team have worked tirelessly over the pandemic to replace funds lost due to the cancellation of all our community fundraising events. We've seen early successes from this approach and thanks Scottish Government Wellbeing Fund have been able to supply over 300 GP surgeries with GH and Covid-19 materials, in support of over 900,000 people in Scotland.

Yet, despite these efforts, the challenges of Covid-19 have led many people to believe that overall, it has been harder to manage their condition during Covid-19.

Encouragingly, almost half the survey respondents hadn't observed any change in the ease of managing their condition.

Many respondents noted the success of the new scheme negotiated with NHS Blood & Transplant, which started in May. For the first time, this scheme enables people with genetic haemochromatosis to donate blood at pre-maintenance levels of iron overload - and also for people aged 70+ to donate. During the pandemic,  non-GH donors are unable to donate if they are over 69 years old; this scheme provides special access to the more senior members of our community, irrespective of age.

A key element of this new scheme has been the ring-fencing of appointments for GH donors. This ensures a regular supply of appointments - up to 800 per week - just for GH donors across England. The full details of this scheme and the eligibility criteria are available on our website.

Our charity continues to lobby the blood donation services, to maintain and improve access for people with GH, wherever clinically possible. This has led to closer collaboration with the Welsh Blood Service, ScotBlood and the Northern Ireland Blood Transfusion Service.

We have held round-table discussions with senior policymakers and stakeholders over the summer, including our first patients' forum with the team at ScotBlood, who are working hard to improve access to donation services for people with GH in Scotland. Our work with NHS BT is continuing, with a second working group meeting planned for early November following on from discussions in September on the progress of the new scheme.

Another recent survey conducted by our charity, showed clear benefits to the NHS blood services working collaboratively with us.

This second survey highlighted a number of areas for improvement around easier donor registration, simpler appointing and fewer last-minute cancellations. We have shared these insights with the relevant NHS teams, who have committed to working with us to refine and improve their services, for the benefit of people with GH.

Intriguingly, peoples' reasons for becoming a donor were a balance of altruism and need, following the cancellation of venesection services during the pandemic. It's inspiring to see so many people get involved in donation schemes to help others, as our survey showed.

As a charity we are reassured that this work - which goes on quietly, behind closed doors, every month - is recognised by our community. We work hard to represent the views of our members and are grateful for everyone's support.

For further details, check out the guidance on our website.

Blood donation arrangements :

• donation in Scotland
• donation in Wales
• donation in Northern Ireland
• donation in England

Coronavirus :

• Coronavirus Resource Hub