Living with
Haemophilia
Professional view
The 5 Minute Interview - Chris James
What do you do for a living?
I am CEO of the Haemophilia Society and that means I'm responsible for the strategic and operational management of the organisation. We have 13 staff and our goal is to ensure that people affected by bleeding disorders and their families receive the best possible treatment, care and support. To do this we both provide direct services and campaign on behalf of people with bleeding disorders. I joined the Haemophilia Society in July and before that I was Director of the Rett Syndrome Association. I have also worked for the Samaritans and Diabetes UK so I have been in the voluntary sector for about 20 years.
What motivates you to do your job?
I think my main motivation is knowing that what I do makes a difference to people's lives. It's about making decisions that can make a significant difference. We make people with haemophilia aware of the services they are entitled to receive and we influence the type of care that people get.
What has been the biggest challenge in your job?
I think the challenge common to all voluntary organisations is how to balance resources against all the conflicting calls on your service. This is the toughest thing to achieve. The demands all compete against each other, all the time. In the Haemophilia Society, for example: we provide support for children and families; there are the needs of the 50-plus age group, which is growing area of our work; we need to raise awareness of bleeding disorders in women and the issue of inhibitors is coming more and more to the forefront of our work. We have to ensure that the highest standards of care are available for people with haemophilia. But we also have limited finances and limited human resources and we have to make sure that we don't spread our efforts so thinly that we can't make a difference.
Is there a particular issue about haemophilia that really gets you fired up?
Two things come to mind immediately. The first is the contaminated blood issue because after so many years it still hasn't been dealt with yet. Over the years I have learned that you only improve care when all those involved – patients, clinicians, the pharmaceutical companies and the Department of Health – are working together. The fact that the contaminated blood issue has not been resolved makes this difficult.
There is also the recognition that 70 per cent of people with haemophilia in the world don't have access to treatment. The World Federation of Haemophilia is co-ordinating this campaign and we need to link in more. Improved access to treatment is a major challenge across the world.
What single improvement would make a real difference to the lives of children with haemophilia?
There are two answers I can give: inhibitors and a better understanding of bleeding disorders in the population as a whole. Haemophilia is a painful and disruptive disorder in a child's life and we need advances in this area. In general we need a better understanding of haemophilia in the workplace and in schools. We don't want to return to the days where children with haemophilia often missed out on educational opportunities.
What is the greatest piece of advice you have heard?
It was something that was said to a colleague of mine, some time ago, who was thinking about being a CEO, taking a job where “the buck stops here”. It was advice about management and leadership. She was told she needed strong self-belief and a vision but also she needed humility. I have learned that you need to be able to step back and look for what people want of you. Having humility is important. In a charity more than most organisations you mustn't lose sight of why you're there.
What has been your greatest achievement to date?
That's hard as I have not really been at the society long enough. When I was Director of Volunteering at Samaritans we recognised the need for a consistent training programme. It's a large, fantastic organisation with a very large number of volunteers. We were able to develop and deliver a new national training programme across the organisation, which was a challenge! We needed to ensure that the service was as consistent as possible, inside the organisation. I understand that it is still working reasonably well!
What five words best describe you?
In my last job we did some team-building exercises and these words come from that. I believe I am honest and transparent and that people know I do not have a hidden agenda. I am very committed to what I do and I think the people I work with feel I am supportive and there for them. And I am an optimist. I have a pretty positive view of life and I am gregarious. My wife would add, I am sometimes forgetful.
Which person, past or present, do you most admire and why?
When I was younger I was very influenced by Joe Strummer (The Clash). My family is Welsh and Aneurin Bevan is a bit of a hero of mine especially for the establishment of the NHS. The NHS is something I believe in very strongly. When I was reading Michael Foot's biography of Bevan I was reminded of this quote: “Any society must be judged by how it treats those in need”. I believe that as well.
What do you wish you had more time for?
This may sound trite but the question is easy. I wish I had more time for my family. I am fully committed to my work and there is never enough time. I have a four year old daughter. Definitely more time with my family.
What do other people say about you?
I think, I hope, the same words as I used to describe myself. My style of management and leadership is supportive. I think they would say I am a good communicator in both formal presentations and in less formal communication. Hopefully they would say I relate well to other people.
If you could be someone else for the day, who would it be and why?
I think this is hard. There are many people I admire. Maybe Stephen Fry. He is a fascinating man and he has this wonderful wit and is so versatile he does so many different things, all very well. That's what appeals to me. It would be fascinating to be Stephen Fry for a day.
And then there is my Welsh heritage. I know my father would have liked me to have seen me run on to the pitch for Wales and score a try at the Arms Park (I'm too old to have played at the Millennium Stadium!)
