Reflections on WFH 2016 as Team GB prepares for Glasgow!
So, WFH 2016 is now a memory, but before it fades we asked some of those who attended from the UK contingent to reflect on what they had brought back from Orlando along with the Mickey Mouse ears.
“WFH 2016 was my very first WFH congress to attend in my few years as a haemophilia nurse,” says Wandai Maposa. “And just to top it up I was lined up to do an oral presentation of an audit we had done at Royal London Dental Institute. How scary can it be that I had to speak to a group of experts, some of whose work I had referenced. But honestly, it wasn’t as scary as it seemed and I will do it again given the opportunity. Just to wind down, I made it a point to visit the Miles for Haemophilia stand almost every day where I cycled my lungs out trying to keep my name on the leader board and oust cycling hero Alex Dowsett.”
Sue Hook from Edinburgh had not attended WFH for a few years and was pleasantly surprised at how much it had developed for the patients who played an active role in presenting, debating and questioning. Kate Khair from Great Ormond Street agreed: “WFH always offers an interesting mix of patient/carer views and personal experience. This year was no different; what was different though was the undercurrent of bubbling expectation of the new products that are just around the corner – enhanced half-life products, gene therapy and molecules that bypass the coagulation cascade altogether. And for the first time there is positive news for those with inhibitors.”
Sue adds a different dimension: “Recent developments in treatment showed how much treatment has progressed in the developed world, which is very positive. But looking at the patients attending I was acutely aware this is not the case for all. I took away with me how we need to really focus on care for all and that treatment isn’t purely factor replacement. So Orlando led me to start fundraising to sponsor a child with haemophilia. A little way of trying to bridge the divide.”
In the same vein, Michelle Kightley from Nottingham is now considering some volunteer work with the twinning program: “The thing that stuck with me the most was seeing gentlemen with haemophilia from countries that do not have prophylaxis, and seeing the joint damage that I have never seen in any of my patients. I’m very proud of the care we provide in the UK and humbled and sad for those that do not have access to the same care.”
The Orlando meeting was well represented by physiotherapists from the UK, many of whom submitted and presented posters or had abstracts accepted for oral presentations. Mel Bladen from Great Ormond Street presented a poster on the SO-FIT study (pictured, with Paul McLaughlin) and says: “The WFH conference offers a unique experience for clinicians and patients to come together to discuss best practice, current research and patient lived experiences. This interaction places the patient in the heart of the meeting to provide focus for continued clinical excellence that is relevant for the patient. Hearing patients voice their real life concerns that are functionally based motivates me to strive to improve care both clinically and academically. The conference also provided an excellent opportunity for networking: and we all found the visit to the treatment rooms fascinating and enlightening and helped us to get excited by the prospect of WFH 2018 in Glasgow.”
For Sue Hook visiting the treatment inspired excitement of a different kind: “It showed how much work we need to do for Glasgow 2018. There were 50 patients a day attending. Planning will start very soon and support will be needed from HNA members.”
Nursing had a higher prominence than ever before on the main programme. As well as the usual pre-congress day with a wide and varied agenda from adherence, venous access to migrant health and global nursing practice, every day there was a nurse session on clinical care culminating in a debate of contentious nursing issues. All of this was well received and Kate reports the general feeling that “nursing was ‘on the up’ at WFH”.
She would like to see WFH in 2018 be the best WFH ever for nursing ever. “HNA members have ideas, skills, patient care to share. Get those thinking caps on and those writing hands ready – like it or not we are on the way to Glasgow!”
Mike Holland is the founder of Haemnet