Monthly Report - October 2009
Dear RDUK member,
Here's a summary of our activities in October:
Conservative Conference Fringe Debate
Melissa with Earl Howe (left) and Richard West (right)
On the 6th October we held a fringe debate at the Conservative Party Conference in Manchester. The theme of the debate was "Rare Diseases: How can the NHS treat the many and the few?" Chairing the debate was Earl Howe, the Conservative Shadow Minister for Health. The panel comprised of Melissa representing Rare Disease UK, Richard West from the Behçet Syndrome Society and Bryan Stoten, Chair of the NHS Confederation.
The Conservatives' preference is for practice-based commissioning as opposed to regional or national commissioning but Earl Howe indicated that the language of localism is not appropriate for rare diseases and the party accepted the need for regional and national commissioning strategies and budgets, which was encouraging. Earl Howe also reaffirmed the party's policy commitment to introduce a value-based pricing scheme for pharmaceutical products and suggested that such a scheme would reduce the cost of purchasing orphan drugs.
Melissa introduced Rare Disease UK and why we are calling for a strategy for rare diseases. The issues facing people with rare diseases in trying to access timely integrated treatment, care and support was emphasised by Richard West who has Behçet Syndrome. Behçet Syndrome is a chronic condition caused by disturbances in the body's immune system. Richard gave a moving account of his own experiences and the experiences of some of the members of the Behçet Syndrome Society.
Bryan Stoten's contribution was very encouraging; he said that the NHS Confederation endorsed the need for a strategy for rare diseases and that at a time when the NHS will be facing substantial resource constraints a national approach is required to ensure that the needs of people with rare diseases are met.
Rare Disease UK would like to thank the speakers and everyone that attended and contributed to the interesting discussion. We are grateful also to Advocate for their help in organising the event.
Finally, thank you to those of you who contacted your Conservative MP to ask them to attend - even if your MP wasn't able to attend making contact is useful to raise awareness of the rare disease community.
RDUK Working Groups
October saw the first meetings of Rare Disease UK's Working Groups. The Working Group on the Co-ordination or Research met on the 14th and the Working Group on Commissioning and Planning met on the 15th. The aim of the Working Group is to aid a strategy for rare diseases in the UK by examining the issues involved in providing and accessing services for rare diseases and to come up with a set of criteria that an effective integrated service would have to meet. Each Working Group comprises of expert stakeholders in a wide range of fields including clinicians, academics, researchers, commissioners, patient representatives and industry. The Working Groups will be meeting over the next 18months.
The purpose of the first meetings was to outline the issues and to come up with a framework which will be built upon as the Working Groups proceed. The notes from all the Working Group meetings will be available on the website shortly.
We are extremely grateful to Dr Hilary Burton, Programme Director at the PHG Foundation and Adrian Pollitt, the former Director of National Specialised Commissioning for chairing the meetings and for all the expert members of the Groups for giving up their time to participate.
The Working Group on Delivering Co-ordinated Care and the Working Group on Patient Care and Information will be meeting in November.
New Industry Members
We are delighted to welcome two new industry members to Rare Disease UK.
Merck Serono - Merck Serono specialise in the treatment of cancer, neurodegenerative diseases, infertility, endocrine and metabolic disorders, cardiovascular diseases and other conditions with unmet medical needs. For more information, please visit their UK site here
Orphan Europe - Orphan Europe develops and distributes orphan drugs for the treatment of rare diseases all over the World. They work exclusively with medicinal products treating rare diseases. For more information, please visit their website here
October's activities
Some of our activities in October included:
. We attended the Conservative Party Conference (see report about our fringe debate above).
. Melissa spoke to the trustees of the British Society for Immunology about Rare Disease UK who were very interested and supportive of our work and wish to be kept updated.
. Stephen attended the Behçet's Syndrome Society patient day in York which was a great opportunity to meet people and to hear their stories, both good and bad, and to learn more about the condition and the great work of the Society.
. Alastair and Stephen met with John Murray, Director of the Specialised Healthcare Alliance to discuss specialised commissioning and to discuss our agendas and how we can concert our efforts.
. Melissa and Stephen met with Elaine Davies from Kidney Research UK to discuss the work of both organisations and how Kidney Research UK can contribute to RDUK's work.
. Stephen along with Alastair (who is the Chair) attended the European Platform for Patients' Organisations, Science and Industry (EPPOSI) 10th Workshop on Partnering for Rare Disease Therapy in Brussels. The theme of the workshop was "10 years after the adoption of the EU Orphan Medicines Regulation: Where do we go to?" Topics discussed included the impact of the economic crisis on the field of rare diseases and how to build on the past 10 years to advance in the next 5 years. There was also a session on rare cancers - the first time this had specifically been discussed at EPPOSI.
. We had one of our regular meetings with Dr Ed Jessop from the National Commissioning Group to discuss rare disease policy and update him on our work.
. Stephen and Melissa met with the Plasma Protein Therapeutics Association (PPTA) to discuss both organisations' work and rare plasma-related disorders. The PPTA were impressed with RDUK's achievements in less than a year and have agreed to help where possible, including providing information and contacts.
Scotland
. Alastair and Claire (RDUK's representative in Scotland) met with Dr Richard Simpson MSP in Edinburgh. Dr Simpson is Labour's Shadow Minister for Public Health. He was very interested in the work of Rare Disease UK and was keen to be kept updated. He also expressed a willingness to help us by undertaking specific actions.
. A date for the Rare Disease Day reception at the Scottish Parliament has been set. It will take place on the 2nd March at 6pm. Our members in Scotland please make a note in your 2010 diaries!
Wales
. Andrew RT Davies AM, the Conservative Shadow Health Spokesperson, kindly submitted Written Assembly Questions about what measures for rare diseases are being taken in Wales. The questions and the Minster's response are attached. It seems that the Welsh Assembly Government are awaiting guidance from the Department of Health.
Northern Ireland
. A date for the Northern Ireland Rare Disease Day reception at Stormont has been set; it will be taking place at 2pm on the 4th March. Lord Browne MLA and Jim Wells MLA, the Chairman of the Health Committee will be co-sponsoring the event. Again our members in Northern Ireland please make a note in your diaries!
. We have also been in contact with the Alliance Party of Northern Ireland who are very keen to help in any way they can.
Rare Disease Day 2010 - Case Studies
In October we met with Velvet PR who will be helping us generate publicity and raise awareness of rare diseases on Rare Disease Day 2010. We are hoping to get as many case studies as possible to generate publicity across different types of media. A separate email will be sent out with more details, but if you have a story to tell, good or bad, please come forward and help raise awareness of your condition/organisation and the unmet needs of patients with rare diseases and their families.
Latest Organisations to Join Rare Disease UK
British Association for Paediatric Nephrology - The aims of the BAPN are to set and improve the standard of medical care of children with renal disease, to formulate and express opinions on policy, to conduct clinical and scientific meetings in order to advance knowledge, to conduct collaborative research audit and to disseminate results and to consider training and professional development of paediatricians with responsibility for children with renal disease. For more information, please visit the BAPN's website.
Kidney Research UK - The mission of Kidney Research UK is to fund life-saving research into kidney disease, to improve the quality of life of those with kidney disorders and to increase public awareness of kidney health. For more information, please visit Kidney Research UK's website.
Turner Syndrome Support Society - The Turner Syndrome Support Society provides accurate and up to date information on Turner Syndrome and the many aspects of living with the condition on a daily basis. For more information please visit the Society's website.
Reminders
We are keen to increase awareness and membership of RDUK over the coming months. As part of this we have had a new flyer printed and we are looking to increase our presence at relevant conferences/events. If you are holding/attending/know of any conferences/events that it would be useful for us to attend or provide information at please let us know: stephen@raredisease.org.uk
If you have any questions on any of these matters, please do not hesitate to contact me.
Thank you for your continued support!
Stephen Nutt - RDUK Secretariat
Stephen@raredisease.org.uk
02077043141
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