Living with
Haemophilia
Professional view
The 5 Minute Interview - Dr Jonathan Wilde
What do you do for a living?
I am director of the West Midlands Adult Haemophilia Comprehensive Care Centre based at the Queen Elizabeth Hospital, Birmingham, which is part of the University Hospital Birmingham NHS Foundation Trust. I am also Medical Chairman of the UK Haemophilia Alliance. At the centre, my work involves routine clinics, care of in-patients, review of referrals from other specialties and giving specialist advice to GPs and consultant colleagues around the West Midlands region.
I also co-ordinate the triennial UK haemophilia doctors' organisation audit of the UK comprehensive care haemophilia centres. There are 23 designated centres at present. The audit reports are confidential but we have agreed to make them available in an anonymised form, on the website of the UK Haemophilia Centres Doctors' Organisation (UKHCDO).
What does the Centre do?
The definition ‘comprehensive care' stems from a Department of Health guideline from 1993. It means that the centre supplies a range of all the elements that are required for people with haemophilia - adequate medical care, obviously, but also dentistry, orthopaedics, physiotherapy and the care of people with transfusion-acquired infections. We care for just over 100 people with severe bleeding disorders and we have in total about 700 patients with bleeding disorders on our books.
What does the Haemophilia Alliance do?
It brings together the various healthcare workers involved in haemophilia care in the UK, and that would include physiotherapists, laboratory workers, clinical scientists, social workers, nurses, doctors and of course, members of the Haemophilia Society. I chair the meetings, which are held six monthly, alternating with the other co-chairman who is from the Haemophilia Society.
The main function of the society is to bridge the gap between health care workers and patients addressing a whole range of the areas surrounding patient care. A major achievement of the Alliance has been the production of a national service specification for haemophilia and other inherited bleeding disorders, the primary function of which is to inform commissioning groups about haemophilia and to direct them on the organisation and purchasing of health care for haemophilia. The first version of the specification was published in 2001 and it was updated in 2006.
There is a spin-off from the Alliance, which is the Industry Forum. Representatives from commercial factor manufacturers wanted to join the Alliance but we felt that wouldn't be appropriate. So we formed the forum, with different members of the industry coming together, and we discuss things of mutual interest. They may be in competition with each other but they have got to know each other quite well and seem quite happy to sit round a table together and discuss aspects of haemophilia. We meet on a six monthly basis and have an agreed agenda. We have had four meetings so far. It is a cross-fertilisation of the medical versus the industry view.
What motivates you to do your job?
To be honest, I find it quite hard to answer that. I suppose it's about striving to be a successful, likeable doctor. It's about achieving and maintaining standards and earning respect and doing your job properly. A major motivation is avoiding making mistakes and not harming your patients.
What has been the greatest challenge in your job?
I would say the greatest challenge I have had in my career was looking after patients with HIV, in the days when they had advanced rapid disease and they were dying. But that was before the arrival of HAART therapy (highly active antiretroviral therapy). HIV was devastating then, and many of my colleagues would say the same thing. Yes, that was a great challenge. HIV was devastating for this patient group. But over the past 10 years, things have changed dramatically. HAART turned all this on its head. At the moment, my HIV infected patients are very well and their virus is under good control.
Now, I think the greatest challenge in our job is the management of bleeding episodes and surgery in haemophilia patients who have inhibitors.
What single improvement would make a difference to the lives of adults and children with haemophilia?
It is fair to say that the biggest single improvement to the lives of people with haemophilia would be to see the introduction of long-acting product. There is the potential to give single dose of concentrate that would be effective for up to seven days. Something like this would make a real difference.
What do you like about your job?
I suppose I am very fortunate that my day job over the years has become much more straightforward because of the major advances in haemophilia care. We have very effective and well-tolerated treatments these days. I now have a consultant colleague [working with me] and that allows me to spend more time to develop my teaching role, which I enjoy immensely and on national work including the Alliance work and developing my role as examiner in haematology for the Royal College of Pathologists.
