News - August 2007
Open Door - August 2007 page 3
- Further delay to cannabis medicine license
- Better access to NHS funded continuing care in England
- New MS Trust patron and trustees
1. Further delay to cannabis medicine license
July saw disappointing news when the Medicines and Healthcare Regulatory Agency (MHRA) ruled that more clinical data are needed before they would approve Sativex for treatment of spasticity in people with MS.
Although licensed in Canada for pain, in the UK the treatment can only be prescribed on a 'named patient' basis – a scheme in which the prescribing physician takes full and personal responsibility for the decision. Around 1,250 people are currently using Sativex on this basis.
Some people with MS therefore remain either fortunate if their GP is willing to take the responsibility for prescribing an unlicensed drug - and their Primary Care Trust is willing to fund it - or unable to find out whether they will be one of those who will benefit. Alternatively, they will continue to use illegal 'street' cannabis of variable and unknown strength, putting themselves at considerable risk.
Prof Mike Barnes, one of our trustees, was part of the expert team giving evidence to the MHRA. He commented: "The evidence is compelling. It shows that around half of the people who tried Sativex gained some benefit. There were no safety concerns. Despite this the MHRA has asked for yet more data."
One of the challenges is that decisions are often based on a 'one size fits all' model. As we know, one size never fits all with MS - it is a hugely variable condition with variable responses to treatments.
Read the MS Trust's Sativex factsheet
2. Better access to NHS funded continuing care in England
The Government has set out plans to streamline funding for NHS continuing care and registered nursing care in England. Until now, paying for NHS care, particularly registered nursing care, has often been means tested and depended on where someone lived. From 1 October 2007, anyone who believes they need routine nursing care, either at home or in a residential setting, should be eligible for a multidisciplinary assessment of their care needs by their Primary Care Trust (PCT). This assessment will consider a range of areas such as mobility, continence and symptom control, to determine the level of social and/or nursing care required.
Although some people will be entitled to some elements of free care for which they previously had to pay, we are concerned that these plans don't properly clarify the complicated rules for providing nursing care. There is still potential for confusion around the overlap between local authority provided social care and NHS provided nursing care, particularly where there are joint assessments.
3. New MS Trust patron and trustees
We are delighted to welcome Sarah Joiner as a new patron of the MS Trust. Sarah, who has MS, has had a distinguished career in the Department of Health and during 2005-2006 was Lady Mayoress of Westminster. She will share duties with Edith Rifkind.
We also welcome three new trustees – Helen Caulfield, a solicitor and policy advisor at the Royal College of Nursing, Professor Neil Scolding, Director of the Institute of Clinical Neurosciences at Frenchay Hospital in Bristol, and Bernadette Porter, MS Nurse Consultant at the National Hospital for Neurology and Neurosurgery, London.
Finally we were delighted when a longstanding trustee, Professor George Castledine, received a knighthood for a lifetime of service to the health care profession in the Queen's Birthday Honours.
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