This month we celebrate the third anniversary of the charity’s postal testing service for genetic haemochromatosis. Over that time thousands of people have been able to secure a test in the convenience of their own home. Hundreds of people have subsequently started treatment or monitoring for one of the common HFE pathogenic variants causing iron overload.

From the earliest stages, the service has been designed in response to community concerns. The charity’s service started in response to a members’ survey in 2019, which showed significant unmet demand for genetic testing. Families struggled to secure tests from their GP, even when they knew they had close family members with the condition.

Over the intervening years, that sadly hasn’t changed.

Almost one-third of people requesting a test from Haemochromatosis UK do so following difficulty securing a test via their GP. More encouragingly, word-of-mouth within families is encouraging people at risk to get tested (28%) – and with the convenience of a simple postal test (22%) from a trusted charity source (11%).

 The importance of families spreading the word continues to this day, sometimes with surprising inter-generational results :

Aisling said "I was a participant in your first testing project in Derry, Northern Ireland two years a result of my diagnosis, several of my siblings and their children have been diagnosed…so I am very grateful that you have initiated this testing programme."

The value of receiving the results promptly cannot be underestimated. Currently the charity’s service is optimised to provide results within days to people completing a test, with copies available to GPs within one-to-two weeks.

Jane remarked how quick and simple the process had been for her - “I arranged a genetic test and it was a superb service…posted sample on Tuesday, received results in post on Wednesday (a week later) and had zoom meeting to discuss the results on Thursday.”

Every test comes with a 45 minute video or phone appointment with our specialist Advanced Nurse Practitioner, Diogo. It’s a chance to talk through the results, whatever the outcome. Surprisingly, people who don’t carry the HFE gene have embraced these appointments as a way of talking through their wider health issues as an aid in getting signposted to other sources of support and care. But for those with a genetic mutation of concern, the chance to talk at length with a specialist clinician has proved invaluable.

Several of Jim’s family had been tested and found the experience supportive - "we as a family would have been lost without your amazing charity and the help you have given us so far. You and your team are providing such an essential service for sufferers and their families."

Our charity closely monitors the progress of the service. Currently, the service is rated 95% positive by people completing a test. This rises to a staggering 97% positive from those who have received genetic counselling from the charity following a test.

And all of this is backed-up by the charity’s regularly updated website, booklets and resources. This unique genetic haemochromatosis resources is used by hundreds of thousands of people annually, from across the world. Kym said "Your website has provided me with more information, guidance and support than 6 years of struggling for the same with NHS. Thank you 💖"

The charity's service has received widespread media coverage across TV, radio and in print - including with the BBC, Ulster TV, STV, BBC Scotland, Daily Mail, The Times, The Scotsman, Sunday Times and elsewhere.

But perhaps the final word should go to Peter who says “HUK – it’s the only place to get help and support.” 

Thank you, Peter!