Thursday 1 November 2018
On Wednesday 31 October 2018, Haemochromatosis UK launched successfully the report, “LIVING WITH THE IMPACT OF IRON OVERLOAD: Report from a large survey of people with haemochromatosis” at The House of Commons, Member’s Dining Room.
The event was attended by senior clinicians, eminent professors, scientists, senior members of NHS trusts, relevant charities and organisations, from across Europe.
Mark Pawsey, MP for Rugby hosted the event, which saw over 45 MPs attending and listening to issues faced by haemochromatosis sufferers.
The Lord Mayor of Coventry, John Blundell was in attendance and spoke about how important the charity was to him as his elected charity of the year and the significance of the event and extended his full support to haemochromatosis patients and Haemochromatosis UK.
Guests heard speeches by Mark Pawsey MP who welcomed Haemochromatosis UK as HUK is a charity with its offices based in Rugby. Mark also urged the MPs in attendance to consider becoming part of an All Party Parliamentary Group (APPG) for haemochromatosis.
Chair of Trustees at HUK, Corrina Towers, spoke about her story in being diagnosed with haemochromatosis and about the impact of living with haemochromatosis, the importance and “need for haemochromatosis to be higher up on the healthcare agenda” and urged guests in attendance to “strike whilst the iron is not”
Daniel Nolan, Director of Toureen Group who sponsored the event, talked about the impact that haemochromatosis has had for the staff working at Toureen and his own family history and why it was important for Toureen to sponsor the launch of the report and the importance for people in attendance to spread awareness.
Dr Edward (Ted) Fitzsimons, from The University of Glasgow, spoke about haemochromatosis and explained how simple diagnosis and treatment should be, as diagnosis and treatment is “a situation that creates a win win between the relationship between the patient and the NHS”.
One of the authors of the report, Dr Kimberly Smith from The University of Surrey, spoke about the key findings. She spoke about the key symptoms experienced such as joint pain and fatigue and highlighted that there are “differences in treatment and there is a need for us to understand why those differences exist”.
The research highlights findings that 73% of patient respondents’ experience psychological difficulties, 58% experience sexual health issues, 70% experience skin problems, 81 % experience fatigue and 87% experience arthritis or joint pain. The research backs the argument that haemochromatosis, previously often regarded as a potentially fatal condition, should now be primarily perceived as a chronic condition.
Alongside the report, HUK launched a Calls to Action document to urge individuals and organisations to create change and improve the lives of people with haemochromatosis.
The calls to action are:
- The consistent adoption of current clinical guidelines for GH
- Research to improve our understanding of disease mechanisms
- Research to quantify the true impact of chronic aspects of GH, and how that might be ameliorated
- The development of further clinical guidelines for GH
- The establishment of an All Party Parliamentary Group for Iron Overload.
David Head, Chief Executive of Haemochromatosis UK who spoke about the Calls to Action said, “We know what causes iron overload, we know how it should be diagnosed, and we know how to treat it. Because we know these things, we do not have to clamour for expensive drugs or other treatments, just for sensible, pragmatic changes that we believe are simply common sense.”
Many of the MPs in attendance extended their support in helping form an APPG and other attendees agreed on the importance of “striking whilst the iron is not”.
The report has been a year in the making as the survey data has been downloaded, de-duplicated and encrypted, before being anonymised and encoded. The dataset has been used by selected researchers to generate up to date statistics about the prevalence of different symptoms and identify areas where new medical and social research may be required.
There will also be a presentation and Q&A session on the report and its findings at the Bristol Patient Information Day (PID) on 17 November. To book a ticket for the Bristol PID, please do so via Eventbrite.
A free downloadable PDF link of the report and accompanying Calls to Action document can be found here: Report and Calls to Action.
To order a physical copy of the documents for a small fee, click here: LIVING WITH THE IMPACT OF IRON OVERLOAD: Report from a large survey of people with haemochromatosis
Haemochromatosis UK permits any user to read, download, copy, distribute, print, search, or link to the full texts of the report, crawl it for indexing, pass it as data to software, or use it for any other lawful purpose, without financial, legal, or technical barriers other than those inseparable from gaining access to the internet. The only constraint on reproduction and distribution, and the role for copyright in this context, is to give Haemochromatosis UK and the report authors control over the integrity of their work and the right to be properly acknowledged and cited.
Attendants included representatives from:
Organisations: British Society for Haematology, British Society of Gastroenterology, NHS Blood and Transplant, NHS Wales, Public Health England, Public Health Wales, Royal College of General Practitioners, Royal College of Nursing, Royal College of Pathologists, Royal College of Psychiatrists, Scottish Intercollegiate Guidelines Network (SIGN), The National Institute for Health and Care Excellence,
Over 50 NHS Trusts were represented at the event at a senior level.
Universities: Surrey, Oxford, Cardiff, Cambridge, York University, St George’s, University College London, Staffordshire, Derby, Barts.
Charities, initiatives and support groups: Addenbrooke’s Liver Transplant Association, Arthritis Action, Better You, Breaking Down Barriers, British Skin Foundation, British Porphyria Association, Fibromyalgia UK, GirlsInScience, GUTS UK, Liver Transplant Patient Consortium, The Shears Foundation, Wellbeing of Women
Related organisations: Blackpool Support Group, GH North West Group, Haemochromatosis Association Germany, Haemochromatosis International, Irish in Britain, Irish Haemochromatosis Association.
Relevant businesses: GE Healthcare, Health Management Limited, Perspectum Diagnostics, Preventicum UK.