The Big Interview – Sarah Bone
Sarah Bone is the chief executive of the Diabetes Research & Wellness Foundation charity. Since its inception in 1991, the organisation has committed more than £11 million to diabetes research and works with partner agencies all over the world.
Here, Sarah tells The Diabetes Times what the future holds for the charity and what its main objectives are for the next few years.
What are your priorities at the Diabetes Research & Wellness Foundation?
We aim to ensure that people have access to the right information and support to develop a proactive self-care approach to successful self-management, to ensure that they are “staying well until a cure is found…
We do this is in a number of ways:
We offer free NHS England Information Standard Accredited diabetes leaflets which cover information about what is diabetes and a number of specific topics including diet and exercise and managing diabetes when you are ill. They are all written by healthcare professionals and undergo peer review. They are available to diabetes and related healthcare professionals in support of their patients as well as the public, and we distribute around 50,000 hard copies every year.
Along with the leaflets we send out 10,000 free diabetes awareness necklaces and medical check-up cards a year to anyone requesting one. All this information is available to listen to or download on our website.
We also run an annual programme of Diabetes Wellness across the country. These collaborative events are run in conjunction with diabetes healthcare professionals delivering interactive talks and are supported by an exhibition room featuring diabetes specialist teams, community support groups as well as the diagnostic companies and appropriate complimentary products.
Alongside our information, guidance and education provision, we also fund diabetes research in the UK and around the world to improve our understanding of all forms of diabetes; develop improved management and treatment options; and ultimately find a cure.
What’s your biggest achievement so far at the Diabetes Research & Wellness Foundation?
We are a relatively small group of 10 people in the UK, and since inception in 1999 we have committed more than £11 million to diabetes research. Within our research strategy, we have made a significant commitment to Islet Cell Research and Transplant.
In 2004, we made an unprecedented grant of £1.4 million to the Nuffield Department of Surgery at the Radcliffe Hospital, Oxford, for the provision of a Human Islet Isolation Facility.
The DRWF Human Islet Isolation Facility was launched in 2006 at the Churchill Hospital, Oxford. Housed within the Oxford Centre for Diabetes, Endocrinology and Metabolism (OCDEM), this facility harvests insulin producing islet cells from donor pancreas for research and transplant.
It plays a pivotal role in the supply of islets within the UK Islet Transplant Consortium (UKITC) for the delivery of an NHS funded national therapy for the treatment of type 1 diabetes. As a centre of excellence, it also provides islets for research to many centres in Europe. We have an ongoing financial commitment in place to fund three key personnel within the lab which is about one third of the current team.
Although only a small number of people can currently benefit from an islet cell transplant, and there are a number of limiting factors to overcome, it is our hope that research will continue to refine and improve current processes to enable it to become more widely available as a treatment option in future years.
How is the Diabetes Research & Wellness Foundation different from other diabetes charities?
There are a number of diabetes charities in the UK, we all offer assistance and support in one way or another. People are likely to source advice and information from all of them from time-to-time but we feel we complement each other and allow people choice in accessing the support that best meets their need.
Our size allows us the opportunity to remain very close to the people we support and we get to know them well. It also gives us the opportunity to offer help and advice in a personal and very friendly way. We often signpost to other diabetes charities and their resources so that we offer the best support we can.
What makes us a bit different is that while the Diabetes Research & Wellness Foundation is an independent and autonomous charity working for the benefit of people with diabetes in the UK, internationally we work with sister organisations in the US, France, Sweden and Finland under the umbrella of the International Diabetes Wellness Network.
We work together on global awareness and educational campaigns and collaborate on international research funding projects for all types of diabetes. Collectively, since the first DRWF group was established in 1993 in the US, we have committed more than £50 million to awareness, education and research funding.
What is the biggest challenge faced by the diabetes community today?
The biggest challenge perhaps, is how to halt the escalating costs of treating type 2 diabetes and its associated complications. How do we get the public to appreciate that type 2 can be prevented, or at least its onset delayed, in many cases? We need people to appreciate that many of the associated complications can be avoided.
Our aim is to provide the information and support to help people take a pro-active approach to their self-management. Of course, prevention is better than cure, so it will be interesting to see how the type 2 prevention programme contributes to this.
What would your one message to healthcare professionals be?
Everyone is different and there needs to be a ‘team’ effort to support people living with diabetes. Work together, learn from each other and use the skills of specialists to educate those delivering care and people living with diabetes, alike. Information sharing is key and we must remember that it’s not one size fits all. We need to be flexible in approach and willing to learn from others that are doing things well.
What research studies funded or part funded by your charity are you most excited about and how long do you think it will be before we see the next meaningful scientific breakthrough in the pursuit of a cure for type 1 diabetes
We have an expert panel of scientists and clinicians that review all of our applications for funding, so when we fund a project, we’re doing so on the basis that it’s an excellent, feasible, proposal supported by the best expertise. We’re excited about the potential of all our funded work – all of which can be read about on our website.
In terms of the pursuit of a cure for type 1 diabetes – well, our significant commitment to islet cell research and transplant over the years is our continued focus. We’ve been funding this work since 2004.
We saw significant headway in this field when the NHS agreed to fund the clinical element of islet transplants for a selection of people with T1 diabetes in 2008. There are many limiting factors associated with this treatment as well as risks. What we do know, is that this treatment, for many, can restore hypo-awareness symptoms and reduce the amount of insulin required post-transplant.
Some transplant recipients have even seen the need for insulin eliminated for sustained periods of time. However, none of this is guaranteed and we need to look at addressing the limitations and improve post-transplant results, all of which are hinged on many varying factors. One of the limiting factors of this treatment is the availability of donor organs so we’ve been funding a programme in the US which is looking at an alternative, sustainable supply of islets for human transplant; alongside this we’ve been funding work into encapsulation which means enclosing the transplanted islet cells in a protective coating which will allow the insulin in the cells into the body but protect the cells from attack by the immune system.
There are many groups working on regeneration of islet cells; immunotherapy and other major programmes. All of which are looking to make the next meaningful breakthrough. We can’t put a timeframe on these complex works but with collaboration and innovation, every step is progress in one way or another.
What would you do if your budget doubled?
A doubling of our budget would enable us to fund more research, developing our existing Fellowship and Pump Priming programmes and build capacity with larger contributions to our collaboration with other DRWF groups internationally.
It would also enable us to increase our very successful education programme of events so we could support more people living with diabetes and explore new support activities.
What is the future of diabetes in the UK?
We all know that if nothing changes then the numbers of people diagnosed with type 2 diabetes will continue to increase and along with it the devastating complications that can lead to a whole range of life changing effects.
Education really is the answer, a greater understanding about what type 2 diabetes is and the things we can all do to prevent, or reduce the risk, will hopefully become part of people’s recognition that their health is, somewhat, in their own hands and that we each have a responsibility to do what we can to protect it.