4th International Forum, London, 'Ask the Doctor' panel 2013
We are the UK Point of Contact for patients, carers, doctors and nurses involved in the treatment of Waldenstrom’s Macroglobulinemia (WM) in the UK. WMUK is a unique not for profit organisation, a registered charity, developed jointly to bring WM patients and medical professionals closer together. It was originally set up to deliver an annual WMUK doctor/ patient forum in London. We have a medical board of leading doctors treating WM in the UK (see below) together with patient representatives. Many of the doctors are involved in updating the treatment guidelines for the disease in the UK.
Apart from providing a point of contact, WMUK is also involved in patient advocacy at UK and EU level. It works closely with the IWMF, based in Sarasota, Florida. In common with many other rare diseases, the current economic climate of budget cuts and reconfiguration of the NHS may mean the small numbers of patients, and relatively expensive treatment that WM patients need, may put advanced treatments under threat.
Treatment is already effectively rationed as far as new chemotherapies are concerned by NICE (the National Institute for Health and Care Excellence) where the QUALY (Quality Adjusted Life Year) values each extra year of life provided by chemotherapy. If the cost exceeds roughly £30,000 it is unlikely that a drug will be approved (but the process is changing soon and is rumoured not to favour older/retired persons ). Many medicines recently turned down relate to blood cancers. A similar process happens at the European level where the European Medicines Agency issues Europe-wide guidelines on new medicines. In future this may prompt the UK government to make new medicines more available.
The key problem about rare diseases is the lack of knowledge amongst GPs who may not have even seen a case in their surgery. From the point of diagnosis onwards -usually the simple part - the main priority is to get yourself referred to a centre that has a speciality in Lymphoma, and preferably runs a WM clinic which has access to experts in the side effects that WM and its treatment produces. This will usually be a large regional or London teaching hospital. If you don’t get treated by a WM expert you may not be offered the latest treatment and, in extreme cases, be given treatment that may prejudice the outcome of later procedures such as stem cell transplants.
Don't be put off by the possible need to travel a fair distance to get the best treatment - you are worth it!. Everyone is entitled to a second opinion in the NHS. In many cases effective treatment involves a partnership between local haematologist and a WM specialist.
WMUK Advisory Board
Rebecca Auer, Senior Lecturer in Haematology, Barts and the London Hospital
Shirley D'sa, Consultant Haematologist, Honorary Senior Lecturer in Haematology, Lead Consultant in Waldenström's, University College Hospital, London
Roger Owen, Consultant Haematologist, Haematological Malignancy Diagnostic Service (HMDS) Laboratory, Department of Haematology, St James’ Institute of Oncology , Leeds
Guy Pratt, Senior Lecturer in Haematology, School of Cancer Sciences, Honorary Consultant Haematologist, Heart of England NHS Foundation Trust, Birmingham
Chara Kyriakou, Consultant Haematologist, North West London Hospitals NHS Trust, London
Saad Rassam, Consultant Haematologist, Maidstone and Tunbridge Wells NHS Trust, Maidstone , Kent
Helen McCarthy, Consultant Haematologist, The Royal Bournemouth & Christchurch Hospitals NHS Foundation Trust, Bournemouth
Feargal McNicholl, Consultant Haematologist at the Western Health and Social Care Trust , Northern Ireland
Michael Lunn, Consultant Neurologist, Clinical Lead in Neuroimmunology and Honorary Senior Lecturer at the National Hospital for Neurology and Nurosurgery, UCLH NHS Foundation Trust, London
Rita Flatley, Sister, Clinical Assessment Unit (Acute Oncology), Royal Marsden NHS Foundation Trust, London
Roger Brown, Dr Iain Purchase, Phil Manning
WMUK Trustees: Roger Brown, Ken Dias, Dr Shirley D'Sa, Dr Helen McCarthy, Phil Manning, Dr Guy Pratt
PATRON: To be announced 2014 - Watch this space with bated breath!