Thank you to everyone who shared their feedback in our annual membership survey. We received several hundred responses – and we read every single one of them! We were particularly interested to hear members' feedback against a backdrop of continuing membership growth - up almost 20% since the beginning of the year.

Key concerns mirrored those expressed in last year’s survey – poor levels of clinician awareness and education.

“The NHS is totally failing people”

Many members shared their frustrations at poor levels of NHS diagnosis and care :

• “The NHS is totally failing people who get diagnosed with haemochromatosis. I have been given a referral for seeing a hepatologist in March 2025. Treatment cannot start before I see consultant…”
• “There needs to be better GP awareness of the condition. My GP could have diagnosed me 11 years ago; I have only got the diagnosis recently through a Private GP.”
• “Please ‘kick’ the backside of ignorant consultants.....so people like my late wife have a chance of living and not dying.”

Many people acknowledged the work that our charity is doing to help train clinicians, including our RCN-accredited eLearning module for nurses and healthcare practitioners, our RCGP-accredited eLearning module for General Practitioners and numerous clinician events and webinars. But as one respondent sagely observed “We need medics to have knowledge - but you can’t force people to read the info...”

The charity’s genetic testing service for family members received widespread praise. Members recognise the value of preventative screening for the condition. However, NHS genetic testing came in for stern criticism particularly around access to tests and the months taken typically to receive the  results. One member flagged up poor NHS diagnosis rates, noting that “The NHS needs to provide a quicker diagnosis. NHS genetic tests results take far too long”.

“We need more screening”

Many felt that screening had a key role to play in reducing ill-health – and costs to the NHS. “Screening - this should be the first blood test people should have” said one, whilst another reflected on our cost of illness report saying “Awareness amongst GPs neds to improve. They need a change in their attitude and acknowledgement that screening could work out cheaper for NHS by preventing more serious illnesses occurring”. There was a groundswell of support for more screening for the condition, particularly amongst men.

Worsening NHS care, across the UK

The survey revealed a worsening picture across the country when it came to treatment and ongoing care for genetic haemochromatosis. One respondent noted that “my local NHS Trust appear to have virtually abandoned offering venesections, seemingly to penny pinching and short-sightedness as bigger cost long-term resulting from high iron levels.”. Another saw consistency of care as a big issue “We need more robust and consistent support from the NHS, better coordination between different departments, better access to tests in order to get diagnoses for symptoms and treatment or help with those symptoms.” There was a call for “Joined up thinking for people with a number of ill-health effects. I see five different consultants…” by another.

Several respondents reported alarming delays in their care “Access to treatment is a problem – it’s a year wait to see haematology in my (Scottish) health Board”. One member remarked that “My consultant won't venesect or see me until ferritin reaches 600!”. This is clearly an unnecessary risk to health, something another respondent agreed with, noting that “access to treatment is the single biggest issue in my view.”

More positively…

Happily, members who responded to the survey felt that Haemochromatosis UK was working well to support people with the condition. Over three-quarters of respondents felt that the charity was doing well at providing support, with an overall average score of 8.4 out of 10.

Despite cost-of-living pressures, an over-whelming majority of respondents felt that membership represented good value for money. Several members commented on the extensive benefits of membership, with particular praise for Victoria and Diogo, our specialist nurses.

Overall, almost 95% of respondents would recommend the charity to friends or family. This isn’t something we take for granted. Our Board of Trustees will be reviewing the full details of the membership survey at their next meeting in November, with a view to plotting our activities in 2024 to address key member concerns and ideas for improvement.

Here are just a few comments from members about the charity :

• "I found the initial support through the charity very informative and I am delighted with the research you have driven, the campaigns for diagnoses and treatment protocols and the information provided for health professionals."
• "I've only been a member for a short period of time but feel supported."
• "I've found the staff to be very helpful and excellent information provided on website and by post"
• "Excellent support networks through GH Buddies, Advanced Nurse Practitioner appointments, publications and regular, informative bulletins."
• "The charity has provided me with so much information and you have always responded quickly when I have emailed the helpline because I have no one else to ask. Although I have been assigned to several consultants now, I have never actually spoke to one since I was diagnosed in 2019."
• "It is scary to get the diagnosis and it is great to get access to your support and knowledge..."
• "Advice seems to be lacking elsewhere so the charity is THE go to place"

Thank you to everyone who participated in the survey by sharing their feedback!