In late September, HUK’s CEO Neil McClements set out on a road-trip across the island of Ireland to listen to community views on genetic haemochromatosis. GH is very prevalent across Ireland. It’s estimated that in the Republic, one in five people are a carrier and one in 83 people are directly affected. Across the border, in Northern Ireland, recent UK Biobank studies suggest that almost 1 person in a hundred are affected by genetic haemochromatosis.
The trip was funded thanks to our Iron Games sponsors and a National Lottery Community Fund grant, representing the first stage of a project to setup a Northern Ireland GH Support Group. This project will run for a year initially, equipping local volunteers with the skills and resources to raise awareness of GH amongst the community generally – and amongst NHS clinicians.
In Dublin’s Fair City
Starting in Dublin’s famous Croke Park, Neil met with members of the Irish Haemochromatosis Association and heard about many of the challenges locally. These included difficulties with the local healthcare system which meant that people with GH would have to self-fund much of their treatment. Venesections, which we take for granted in the UK as free at the point of need, are charged per-appointment until an individual has spent EUR 800 within a year; at that point the state steps in to cover the costs. This is clearly a major disincentive to people newly diagnosed to undertake potentially life-saving venesection. The IHA are lobbying local policy-makers vigorously to change this situation.
Next Stop – Belfast
After a 2 hour train journey north, we arrived in Belfast home of the Titanic and where our CEO previously went to school during the 80s. With the support of Neil Irwin, our local volunteer and support coordinator, we met with 15 people and their families at Stranmillis College to discuss local needs.
Much has changed in Northern Ireland over the past 30 years – much of that good. But the NHS in Northern Ireland is struggling severely. There are just 2 specialist consultants working with people affected with GH for a population of over 1.8 million. Until very recently, modern diagnostic tools such as Fibroscan machines weren’t available – many people have their liver condition assessed by liver biopsy, a technique which carries with it a 1 in 300 chance of a serious side effect.
We were inspired to meet Abigail and her family. Abigail was diagnosed with GH aged just 15 years old, proof that anyone can be affected at whatever age. Her Mum had become concerned that Abigail was growing increasingly fatigued – more than the usual “teenager growing pains”. Fortunately, her GP was sympathatic and aware that GH can affect 1 in 100 people locally – a ferritin/TSAT test confirmed iron overload and a genetic test swiftly confirmed the diagnosis. Following initial treatment, Abigail is living a healthy and happy life, like any other young adult, She had a special message to share with everyone, which you can watch in the video below.
Across The Black Mountain To Derry
Derry/Londonderry is in the north west of Northern Ireland, very close to the Irish border. Thanks to Neil Irwin’s organisational skills, we had a packed community gathering in the city centre. Although this was HUK’s first formal trip to the city, people were grateful for us travelling the 2 hours through heavy rain from Belfast to meet people face-to-face.
The people we met had a range of concerns, particularly around the time it takes to get into treatment. Alison, who had been recently diagnosed, explained that although she had a ferritin of over 2000 (normal : 50) was not permitted to start venesection until she had been reviewed by a gastroenterology consultant. The waiting list for a gastro appointment was 21 months; an anxious and excessive time to wait, knowing that iron overload and possible organ damage will progress in the meantime. Seamus shared his experiences of GH on the Creggan estate, a area of the city which all too often is in the news. He believes that GH is endemic in the north west; many family members and friends have been diagnosed, often late in life once joint problems have set in. All too often, GPs seem unaware of the condition and ferritin/TSAT tests are not routinely used where people complain of chronic fatigue or joint issues.
Our Next Steps…
GH is very prevalent in Northern Ireland and massively under-diagnosed. Our first step to raising clinician awareness has been to contact every GP practice in Derry City with a GP awareness pack, comprising our new “GP’s Guide To Diagnosing GH”, an invitation to our education programme fortnightly training webinars and an offer of face-to-face training in the city for groups of GPs. We also despatched a range of community awareness resources to key community groups in the Creggan area, to help people start thing about GH and how it might affect their families.
Before we left, we resolved to return to Derry and Belfast to continue the work. We are arranging a patient information day in Belfast on Saturday 1st February at the Holiday Inn Express on University Street – save the date!