News 
Get ‘e-QIPP-ed’ for neurology
Neurological Commissioning Support (NCS)is running a series of free Roadshows across the country to raise awareness of ‘QIPP’ and its relevance to neurology.
They aim to promote increased understanding of neurology commissioning and potential areas of cost- savings, showcasing available tools to assist in effective commissioning, such as NeuroNavigator - all with a specific focus on partnership working and QIPP.
They are focussing on what has worked in other areas so that you can transfer ideas and benefits to your own locality. The roadshows are FREE. For more information go to the Training and Events page and click on the "Further information on specific events" tab.
Services for people with neurological conditions
Download the Executive Summary, Full Report and Methodology from the National Audit Office website
Since 2005, when the Department of Health introduced its National Service Framework for Long-term Conditions, people with neurological conditions have had better access to health services, but key indicators of quality have worsened. The Department does not know what the Framework and additional spending of nearly 40 per cent have achieved.
"Services for people with long-term neurological conditions are not as good as they ought to be, despite a large increase in spending. Progress in implementing the Department's strategy has been poor and local organisations lack incentives to improve the quality of services. It is not clear how lessons will be learnt and there are risks to services which the Department must address to ensure that care improves." Amyas Morse, Head of the National Audit Office, 16 December 2011
The Framework was designed to improve care for people with neurological conditions but progress in implementing it has been poor. Access to health services for people with long-term neurological conditions, such as Parkinson's disease, multiple sclerosis and motor neurone disease, has improved and waiting times for inpatient and outpatient neurology have decreased since 2007. The number of elective neurological operations performed has also increased. However, the rate of emergency admissions to hospital has increased significantly and there is large variation in emergency admission rates between Primary Care Trusts.
Access to services for patients also varies significantly depending on where they live. For example, the NAO's analysis shows variation across the country in the number of specialist nurses per person with multiple sclerosis.
There are still significant problems with current services. Many patients, following their diagnosis, are not given information on their condition, about local services or on available support. Ongoing care is fragmented and poorly coordinated and there is a pattern of patients being referred to hospital for treatment, then discharged and then referred to hospital again. The NAO also found that there is poor coordination between health and social services. The number of adults with a physical disability receiving social services has fallen since 2005-06, because fewer people are now eligible for these services. (16th December 2011)
Novartis confirms that patient died within a day of initiating Gilenya treatment
(Ref: The Wall Street Journal, Bloomberg, BusinessWeek, CNBC, NASDAQ)
December 12th, 2011
By Lianne Dane
Novartis confirmed Monday that a patient with multiple sclerosis died within 24 hours of starting treatment with Gilenya (fingolimod). The drugmaker noted that "this is the first reported death event occurring within 24 hours of the first dose of Gilenya in more than 28,000 patients who have received Gilenya to date." Novartis added that "at this stage, the exact cause of death has not been established, and a role for Gilenya can neither be confirmed nor excluded at this time."
Novartis said that it has submitted details of the case to the FDA and other health authorities, but has yet to issue a notification to physicians about a potential change in prescription needs. "Novartis takes patient safety very seriously and we are currently gathering all available details on this case," the company said. more...
Rare gene links vitamin D and multiple sclerosis
(Information from BBC News online)
Researchers say a variant gene which reduces vitamin D levels could be directly linked to MS
A rare genetic variant which causes reduced levels of vitamin D appears to be directly linked to multiple sclerosis, says an Oxford University study. UK and Canadian scientists identified the mutated gene in 35 parents of a child with MS and, in each case, the child inherited it. Researchers say this adds weight to suggestions of a link between vitamin D deficiency and MS.
The study is in Annals of Neurology.
Although the cause of MS is not yet conclusively known, both genetic and environmental factors and their interactions are known to be important. Oxford University researchers, along with Canadian colleagues at the University of Ottawa, University of British Columbia and McGill University, set out to look for rare genetic changes that could explain strong clustering of MS cases in some families in an existing Canadian study. They sequenced all the gene-coding regions in the genomes of 43 individuals selected from families with four or more members with MS. The team compared the DNA changes they found against existing databases, and identified a change in the gene CYP27B1 as being important. When people inherit two copies of this gene they develop a genetic form of rickets - a disease caused by vitamin D deficiency. Just one copy of the mutated CYP27B1 gene affects a key enzyme which leads people with it to have lower levels of vitamin D.
The researchers then looked for the rare gene variant in over 3,000 families of unaffected parents with a child with MS. They found 35 parents who carried one copy of this variant along with one normal copy. In every one of these 35 cases, the child with MS had inherited the mutated version of the gene. The likelihood of this gene's transmission being unconnected to the MS is billions to one against, say the researchers.
Prof George Ebers, lead study author at Oxford University, says the odds are overwhelming. "All 35 children inheriting the variant is like flipping a coin 35 times and getting 35 heads, entailing odds of 32 billion to one against." He added: "This type of finding has not been seen in any complex disease. The uniform transmission of a variant to offspring with MS is without precedent but there will have been interaction with other factors." Prof Ebers believes that this new evidence adds to previous observational studies which have suggested that sunshine levels around the globe - the body needs sunshine to generate vitamin D - are linked to MS. He maintained that there was now enough evidence to carry out large-scale studies of vitamin D supplements for preventing multiple sclerosis. "It would be important particularly in countries like Scotland and the rest of the UK where sunshine levels are low for large parts of the year. Scotland has the greatest incidence of multiple sclerosis of any country in the world."
NICE decision on Gilenya (Fingolimod)
In further draft guidance published today (1 December), NICE, the healthcare guidance body, has not been able to recommend a daily capsule that could reduce relapses in some people who have a particular type of multiple sclerosis. Based on the evidence submitted by its manufacturer, offering the drug would not be cost effective for the NHS, compared with the treatments that are already available for the condition. NICE has not yet issued guidance for the NHS.
The second appraisal consultation document provisionally does not recommend fingolimod (known commercially as Gilenya and manufactured by Novartis Pharmaceuticals UK) for highly active relapsing-remitting multiple sclerosis (RRMS); a type of the condition characterised by periods when symptoms worsen and then improve. The second draft has been published following a proposed discount from Novartis (called a Patient Access Scheme) to the price of fingolimod.
NICE's independent appraisal committee has not been convinced that offering fingolimod would be a cost effective option for the NHS, even with this discount (which Novartis has asked to be kept confidential) when compared with treatments currently offered to people with highly active RRMS, such as beta interferons.
Sir Andrew Dillon, Chief Executive of NICE said: “It is important for people with multiple sclerosis to have access to different treatment options wherever possible; however these new treatments must represent value for money so that everyone can get the most out of the NHS. While Novartis submitted evidence that shows fingolimod can reduce relapses, our independent committee has not been convinced that it is a cost effective treatment option for the NHS, even with the proposed Patient Access Scheme.
“Our revised draft guidance has been published as part of a public consultation. We encourage healthcare professionals, people with multiple sclerosis and our other stakeholders to comment on our independent committee's provisional recommendation so that they can contribute to the development of this guidance.”
Those wishing to comment on NICE's draft recommendations have until Thursday 5 January 2012 to do so. NICE's independent committee will then meet again in February to review the comments received. NICE expects to publish its final guidance for the NHS in April 2012.
Until NICE issues final guidance, decisions on the funding of fingolimod should continue to be made locally by NHS bodies.
Medical Rehabilitation in 2011 and beyond
A Report of the Royal College of Physicians and the British Society of Rehabilitation Medicine
"This report will help health professionals in accessing rehabilitative care for patients by improving understanding of clinical pathways, the field of competence and the role of rehabilitation specialists within teams" Professor Amanda Howe, RCGP
The report revises the definitions around rehabilitation medicine in line with current practice. It also places rehabilitation in the broader context of acute illness management, arguing that commissioning - in the format newly proposed by the coalition government - should support interdisciplinary practice and clinical pathways which reflect the widespread overlap with other areas of medicine. Standards of practice are also discussed in the context of the National Service Framework for long-term-neurological conditions.
The report argues that, while shorter-term programmes are functioning well, longer-term pathways need to integrate high-intensity treatments, greater consideration of the individual's participation in life, vocational needs, family relationships, and the need to return to as normal a life as possible.
This document draws on evidence from a wide range of papers, reviews and Cochrane collaborations, to support the argument for increased investment in rehabilitation medicine for the future, embracing technological innovations and providing high-quality, personalised care.
Download the Report from the RCP website
MS Society Information Services
The newsletter from the MS National Centre (MSNC) Information Services
team is a simple way to keep up to date with new resources, information events and examples
of good practice from around the country.
The info team is there to support people affected by MS to access up-to-date evidence based
information and to signpost to other sources of expertise. Through working with colleagues at
MS National Centre and locally we can together meet the information needs of everyone affected by MS.
Contact the MS Society Information Team at or phone 020 8438 0799.
The MS Trust Information Service
Whatever your question about MS, the MS Trust’s Information Team is there to help you try and find the information you need. Using their collection of medical papers, textbooks and other resources, they will find information to match your particular questions, whether it be symptoms or treatments or literature searches to help with service development.
Contact the MS Trust Information Team or phone 01462 476700
