In early spring, on Thursday 28th March, EHC Inhibitor Working Group member Jim O’Leary (Ireland), accompanied by his wife Monica, set out on his way to Wilcox House in London, UK, where The Haemophilia Society were hosting their Inhibitor Information & Support Day.
Jim was equipped with materials from the European Inhibitor Network (EIN) and he was excited to attend the event and have the opportunity to present the work of the EIN and to support the work of the Haemophilia Society for people with inhibitors.
The day was opened by Jeff Courtney, Head of Policy & Programmes at the The Haemophilia Society (THS), with a short welcome and introduction, followed by an excellent presentation on understanding inhibitors. This educational aspect of the programme is essential, especially for families with no former history of haemophilia with inhibitors. This was followed by a very comprehensive and informative session which outlined new advances in inhibitor management and treatment by Jemma Efford, the Haemophilia Clinical Nurse Specialist at Great Ormond St. Children’s Hospital.
During lunch, Jim had an opportunity to catch up with Liz Carroll (CEO of THS), Clive Smith (Chair of THS) and James Hunt (Head of fundraising) and exchange the updates.
The programme continued after lunch with Trupti Bhandari, a paediatric haemophilia physiotherapist at the Evelina London Children’s Hospital outlining, in a very helpful and easy to follow manner, the physiotherapy support that is available for children with inhibitors and highlighted the physical activities they can and should be encouraged to undertake. A discussion about educating healthcare professionals on haemophilia ensued, when Trupti shared that in her training as a physiotherapist she had never encountered haemophilia as a condition that would require physiotherapy.
One of the areas in inhibitor management that is often left in the periphery are psychosocial questions. The Haemophilia Society invited Rajesh Shah from the Department of Work and Pensions to talk about the difficulties being encountered by haemphilia patients after the introduction of Personal Independence Payment benefits in the UK, as well as the increase in the rejection of claimants following the outsourcing of the assessments to independent companies. He pledged to act as a liaison between the Haemophilia Society and the Department when difficulties are encountered. This was an important and practical addition to the programme for patients as it can be a challenging experience to navigate a benefit system without enough information.
Jim then outlined the development and aims of the work of the European Inhibitor Network, explaining the support initiatives that have been introduced in the framework of this programme. The disparity in access to treatment for people with inhibitors across the 46 National Member Organisations of the EHC was outlined as one of the areas where much work still needs to be done. Jim also highlighted the EHC Inhibitor Summit, organised yearly, as a unique opportunity for people with inhibitors from across Europe to come together and share experiences and information, as well as build a solid community for the future.
After a fruitful group discussion and networking, the day finished and Jim set off on his way home.
“I hope this event can be repeated regularly, hopefully at a weekend where we can get the attendance up and allow more people with inhibitors to benefit from it. My thanks to the organisers – Jeff Courtney, Nicola Sugg and all the staff – for what was a very enjoyable and informative event and for the opportunity to speak and meet the team at the Haemophilia Society!”said Jim about his attendance to the Inhibitor Information & Support day of the Haemophilia Society.
He added that it was a great occasion to learn from one another at this event and that he wished there were more participants to benefit from the excellent speakers and range of topics presented.