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About Us

4th International Forum, London, 'Ask the Doctor' panel

We are the UK's only charity focusing on support for patients, carers, doctors and nurses involved in the treatment of Waldenström's Macroglobulinemia (WM).
WMUK is a unique not for profit organisation, also a registered charity, developed jointly to bring WM patients and medical professionals closer together to improve the treatment of WM. 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, undertake research  and attend wm confrernces. You can join a
dedicated doctor forum which meets regularly in London - just send us a message. We also assist WM research in the UK with modest grants  and for travel in the case of young researchers.

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 and the European WM Network.  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 and specialised  treatment that WM patients need, may put advanced treatments under threat.

More recently with support from people like you, and that of other bodies such as the IWMF and Pharma we have launched an ambitious funding package- for the Rory Morrison UK Patient Data Registry, a Biobank at University College Hospital in London (jointly with the IWMF) and sponsorship of a research fellowship investigating IgM production in WM at Leeds Teaching Hospital under Dr Roger Owen. We have just been accepted for the GECIP 100,000 genomes project and now fund the collection of samples for DNA analysis, providing 'spit tubes' to take patient samples for DNA  testing. 

Treatment is already effectively rationed as far as new chemotherapies are concerned by NICE (the National Institute for Health and Care Excellence) and by the Cancer Drugs Fund. The QALY (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 constantly changing,but does not favour rarer diseases).  Many medicines recently turned down relate to blood cancers. A similar process happens at the European level where the European Medicines Agency (based in London) issues Europe-wide licences for new medicines. In future this may prompt the UK government to make new medicines more available, depending on BREXIT negotiations.

A problem about rarer 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 or Haematology, and preferably runs a dedicated 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. Larger centres also offer more chances of joining in clinical trials of new medicines.  We can often signpost a centre near you. 

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.  Effective treatment may involve a partnership between local haematologist and a WM specialist. 

WMUK Advisory Board

Medical

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

Patients
Roger Brown , Mark Barnett, Phil Manning, Colin Rainford. 

WMUK Trustees

Roger Brown (chair) , Ken Dias, Dr Shirley D'Sa, Dr Helen McCarthy, Dr Harriet Scorer, Dr Jaimal Kothari, Phil Manning, Colin Rainford, Dr Guy Pratt
 

OUR PATRON:  Broadcaster Charlotte Green, famous for her BBC Radio 4 announcements, ex-colleague of Rory Morrison, now author and Classic FM presenter, together with football results, shipping report and many other broadcasting roles.