Thank you to everyone who shared their feedback in our annual membership survey. Around 300 responses were received, and every response was read!

The results of the 2024 membership survey will be reviewed by our Board of Trustees, at the next meeting, to identify areas of focus reported by the members and ideas of improvement. These findings will aid in planning of changes and charity activities in 2025.

Shown in table 1, the top 3 areas in which members reported to be the most important for the charity to pursue were:

• education for clinicians
• awareness raising for clinicians
• support for patients

These were also reported as the top 3 most important areas to pursue in 2023; however, in 2023 the order of priority differed, with the second highest priority area was support for patients and the third was awareness raising for clinicians.

Table 1: % of members who reported each area of focus to be very important, moderately important, important, slightly important, or unimportant, when asked “How important are these things for the charity to pursue?”. The top 3 areas of importance are labelled

“You bridge the information and communication chasm between the NHS and the patient”

The sources of information on genetic haemochromatosis that HUK provides, was widely praised. But many members reported a lack of information, provided by the NHS, with HUK being one of the only places to go to for information and advice.

• “The invaluable information and help you provide in the absence of any information from the NHS”
• “The information provided about the condition which is 100% more than I’ve got from the NHS”
• “You both educate and inform in a world where the NHS is failing us”

Members reported more awareness and education for clinicians is needed, as “GPs are so poorly informed”. However, as there are sources of information and education provided by the charity, the difficulty is in getting clinicians to engage with the material.

• “There is plenty of educational material available which I hope more clinicians will engage with”
• “I think the charity is doing a great job, but the clinicians don’t seem to be hearing it yet”

The charity’s helplines and appointments with registered nurses received frequent flattery, with members appreciating advise, information, and support from clinicians who have a great understanding of the disease.

• “Telephone nurse service have been really helpful”
• “Upon diagnosis I called the nurse support line and the nurse was super helpful - I didn’t feel alone and was able to go to my appointment armed with knowledge”

Many respondents also reported difficulty in genetic testing either for themselves or a family member, through the NHS. Members also believe that faster and earlier diagnosis is needed. This meant that the HUK genetic screening service was highly valuable.

• “Opportunities for genetic testing that NHS struggles to do”
• “Genetic testing service is excellent for family members if the NHS refuses testing”

“There seems to be a postcode lottery for treatment”

There was a range of quality of treatments reported by members with some members in certain areas reporting “In my area treatment is good, they are doing the best they can”. However, many other members have reported a much worse quality of treatment. This was seen when one person reported “the clinicians or doctors are not interested in helping unless iron levels are 1000”. Long waits to see consultants following diagnosis were also reported with some respondents even seeking private care due to the long waits or lack of knowledge by the NHS. These long waits also mean that some members have had to wait to receive treatment/venesection:

• “Venesections should start straight away instead of having to wait until you finally get to see a consultant”

Generally, awareness has been reported to have increased. However, members still report that an increase in awareness and education of genetic haemochromatosis is very important, specifically for clinicians.

Satisfaction of HUK membership

When asked to rate HUK from 1 (poor) to 10 (excellent), 80.3% of respondents scored the HUK membership at least an 8 (Fig 1). This provided an average score of 8.4 out of 10.

Figure 1: % respondents who rated HUK membership each number from 1 (poor) to 10 (excellent), when asked “Overall, how do your rate your membership of Haemochromatosis UK?”.

HUK scored highly, with an average of 8.5 out of 10, when asked “how well do you think we do at supporting people with GH. With 81.3% of respondents scoring the support at least an 8 (Fig 2).

Figure 2: % respondents who rated HUK membership each number from 1 (poor) to 10 (excellent), when asked “how well do you think we do at supporting people with GH?”.

Members felt well supported due to the wide range of resources provided by the charity, especially through the helplines and specialist nurse appointments, genetic testing, and extensive information.

An average of 93% of respondents feel that HUK membership is value for money, due to the large number of services provided (Fig 3).

Figure 3: % respondents answered yes or no, when asked “Do you believe that being a member of the charity provides value for money?”.

Approximately, 95% of respondents would recommend HUK membership to a friend or family (Fig 4).

Figure 4: % respondents answered yes or no, when asked “Would you recommend becoming a member to friends or family, if they were affected by GH?”.

Comments from members about the charity:

• “HUK are constantly trying to change the lives of people either diagnosed or undiagnosed with Haemochromatosis genes for the better”
• “There is little help for this condition from the NHS, but your group has provided me with information, a helpline and someone who listens”
• “I think you are providing an invaluable service to a patient group that is poorly served by the NHS and the membership fee seems very reasonable”
• “The struggle to get diagnosed properly, by the GP was a nightmare. Your helpline was a lifeline that not only helped but encouraged persistence. We would probably have given up if it were not for Haemochromatosis UK.”