Haemochromatosis UK

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. https://www.haemochromatosis.org.uk/ask-the-doctor-susan-hancock 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.  https://www.haemochromatosis.org.uk/news/new-genetic-haemochromatosis-resources

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.  More details regarding the survey can be found at https://www.haemochromatosis.org.uk/news/life-in-the-time-of-covid

Our latest report, reveals inconsistent adoption of NHS care protocols for genetic haemochromatosis. This detailed investigation covers all NHS trusts across the UK and was produced in collaboration with the University of Derby. It has taken over 12 months to research and publish.

Key findings :

fewer than half of NHS hospital trusts use a recognised care pathway for caring for people with genetic haemochromatosis.

the majority of NHS hospital trusts do not employ a recognised venesection protocol for treating people with the condition

We are calling on the Department of Health to :

ensure NHS secondary care establish clinical best practice guidelines in the diagnosis and treatment of people with genetic haemochromatosis;

engage with the NHS to ensure it takes steps to ascertain who is at risk of genetic haemochromatosis and to ensure their timely care

ensure all patient referrals for genetic haemochromatosis are completed within 18 weeks

The All-Party Parliamentary Group on GH has reviewed and discussed the findings.

We encourage you to write to your MP (and other elected representatives) to press for change.

Printed copies of the report have been circulated to all our Friends Against Iron Overload, MPs and policymakers. The report is also available for free download if you follow this link https://www.haemochromatosis.org.uk/news/state-of-the-nation-report-reveals-inconsistent-nhs-care or you can buy the printed edition in our online shop; https://www.haemochromatosis.org.uk/shop

This report was made possible by the generous support of the Shears Foundation and Ground Construction Limited. In common with organisations across the third sector, Covid-19 has presented unique challenges to our charity – a massive upswing in demand for our support coupled with a significant fall in community fundraising income. So, at this time, we are especially grateful to these, our long-standing supporters who continue to share our vision of a world where everyone affected by genetic haemochromatosis has access to high-quality care and the support - and the information and resources necessary to improve their quality of life.

Has your Venesections been cancelled or delayed? Our charity has negotiated special arrangements for people with Genetic Haemochromatosis to give blood via the NHS during the #Covid19UK outbreak. HUK members have been sent details via email today. Let's help our NHS heroes!

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We run a telephone and email helpline, to provide people with support and advice. Haemochromatosis can be a frightening and painful condition. Every year, our helpline team of trained volunteers handle almost 2,000 calls and emails from people needing help. All too often, the NHS is ill-equipped to assist and so we are seeing increased demand on our services Especially with the effects of Covid-19 and patients concerns regarding the implications.

Since Covid-19 outbreak, our telephone and email helplines have experienced as many requests for help in 2 days as we would normally see in two weeks, from people trying to understand the implications of Covid-19 for them.