News
Parliamentary report on the implementation of the NSF for Long Term Neurological Conditions
The House of Commons Committee of Public Accounts has published its report on Services for People with Neurological Conditions.
In March 2005 the Department of Health published its National Service Framework for Longterm
Conditions (the Framework) which focused on neurological conditions. The
Framework set out 11 quality requirements to improve services for people with neurological conditions, which were to be fully implemented by 2015. Since the
introduction of the Framework, health spending on neurological conditions has increased
by 38% in real terms, from £2.1 billion in 2006-07 to £2.9 billion in 2009-10. Between 2005-
06 and 2009-10, social care spending on people with a physical disability has remained flat
in real terms (£9.6 billion in 2009-10). An estimated £2.4 billion of this was spent on people
with neurological conditions in 2009-10. The Department accepted that the model it used to implement the Framework had not
worked. There was too much reliance on local commissioners to deliver the Framework
with a lack of central leadership. Unlike other treatment areas such as cancer and stroke,
neurology does not have a National Clinical Director. Clinical leadership at a local level,
where individuals take responsibility for designing local services, has also been absent in
many areas. This report examines the implementation of the NSF and makes recommendations for the future.
Research training for nurses and allied health professionals
More research training will be offered to nurses, midwives and allied health professionals thanks to a new strategy launched by Health Secretary Andrew Lansley. Speaking at the annual Florence Nightingale conference the Health Secretary set out details of the scheme that will be managed through the National Institute of Health Research.
Healthcare professionals will be funded to do further education in the research field, such as Masters degrees and PhDs or to spend time doing internships so they can gain experience in using research to improve care. The aim is to put research at the heart of frontline services and make NHS staff some of the best trained in the world. Today there are almost 500,000 nurses, midwives and allied health professionals working across such areas as school nursing, critical care, paediatrics, rehabilitation and maternity yet only a fraction of these are active in research.
Successful applicants will be able to develop research projects that inform the care they deliver for patients on a daily basis. Once qualified, the nurses, midwives and allied health professionals (AHP) will use their research to inform day-to-day duties and ensure these practices are adopted in other hospitals and clinics.
‘Developing the Role of the Clinical Academic Researcher in the Nursing, Midwifery and Allied Health Professions’ report can be found on the Department of Health website.
The National Institute for Health Research (NIHR) commissions leading-edge scientific research focused on improving quality and patient outcomes, and supporting decisions about service investment and disinvestment. It plays a critical role in the development of better approaches, which lead to improved health outcomes.
Health Education England is to be established as a new national body responsible for workforce planning and education and training in the NHS and public health system. The key purpose of HEE is to ensure that the healthcare workforce has the right skills, behaviours and training, and is available in the right numbers to support the delivery of healthcare and health improvement.
Health Education England will provide a focus on education and training that we have not had before. It will provide national leadership on planning and developing the workforce; promote high quality education and training responsive to the changing needs of patients and local communities, authorise and support the development of Local Education and Training Boards and allocate and be accountable for NHS education and training resources and the outcomes achieved.
In its role, HEE will be responsible for the future clinical academic careers programme. The strategy for clinical academic careers being announced provides clarity and a strategic vision for taking forward this programme of work. It will provide a sound base which HEE can take forward to develop this important piece of workforce investment.
Patients to benefit from funding to charities
Seventy four charities including the Motor Neurone Disease Association, Epilepsy Society and the Spinal Injuries Association will get a share of more than £6.8 million to test and develop innovative approaches to improve health and wellbeing, Care Services Minister Paul Burstow has announced. The charities submitted funding bids to the Department of Health setting out how they could help their communities by improving care for thousands of vulnerable people.
The winning bids include the Motor Neurone Disease Association which will develop its wheelchair provision into a national service delivering choice to patients using its just over half a million pound grant,
The Disabled Living Foundation will provide an online library of small electronic aids allowing individuals and their carers to try before they buy and give feedback to people in similar positions. They have won just under £200,350 and
The Spinal Injuries Association have won nearly £43,500 to help educate health professionals how to avoid preventable conditions such as pressure sores and urinary infections.
Update on Fingolimod (Gilenya) (22.3.12)
The National Institute for Health and Clinical Excellence (NICE) has outlined its plans to recommend fingolimod, the first pill-based medicine to help reduce the number of relapses for some adults who have a particular type of multiple sclerosis. This positive recommendation is a change from NICE's previous draft guidance from December 2011 and follows a public consultation during which the manufacturer (Novartis) and clinicians provided additional information and analyses.
The draft document (called a final appraisal determination) recommends fingolimod (Gilenya) as a treatment option for some adults who have highly active relapsing-remitting multiple sclerosis (RRMS); this is a type of the condition characterised by periods when symptoms worsen and then improve. (Go to the final appraisal determination here)
Specifically, NICE provisionally recommends the treatment for adults who have an unchanged or increased relapse rate or ongoing severe relapses compared to the previous year, despite them taking other drugs such as beta interferons. The provisional recommendation relates to a subgroup of the population for which fingolimod is licensed.
Professor Carole Longson, Director of the Health Technology Evaluation Centre at NICE said: "The latest draft guidance from our committee recommends the NHS-use of fingolimod for a specific group of adults who have highly active relapsing-remitting multiple sclerosis. Following new information provided during the consultation, the analyses show that for these people, treatment with fingolimod will be a cost effective option for the NHS in this group of people with multiple sclerosis, if Novartis provides the drug at a discounted price, as proposed in its patient access scheme.
"We have published the latest version of our draft guidance on our website so that interested parties can highlight any factual errors or appeal against our final draft recommendations."
Registered stakeholders wishing to appeal NICE's final appraisal determination have until 5pm on Friday 30 March to do so. If no appeals are received, NICE expects to publish its final guidance for the NHS in April 2012.
Until NICE issues final guidance, decisions on the funding of specific treatments should continue to be made at local NHS levels.
European Medicines Agency review of Gilenya
The European Medicines Agency is reviewing the benefits and risks of the multiple-sclerosis medicine Gilenya. This follows concerns over the effects of the medicine on the heart after the first dose. The review was started following reports of heart problems in patients taking Gilenya, as well as the death of one patient in the United States less than 24 hours after the first dose. The exact cause of this patient’s death is still unexplained.
Gilenya has been authorised in the European Union since March 2011 for the treatment of relapsing-remitting multiple sclerosis in patients whose disease has failed to respond to a beta-interferon or is severe and getting worse rapidly. It contains the active substance fingolimod. More than 30,000 patients have received Gilenya worldwide.
While the review is ongoing, the Agency’s Committee for Medicinal Products for Human Use (CHMP) is advising doctors to increase their level of monitoring of patients after the first dose of the medicine. This includes electrocardiogram (ECG) monitoring before treatment and then continuously for the first six hours after the first dose, and measurement of blood pressure and heart rate every hour. After six hours, any patients with clinically important heart-related effects, such as bradycardia (a slow heart rate) or atrioventricular block (a problem with the conduction of electricity in the heart), should continue to be managed and monitored until their condition has improved.
The risk of bradycardia after the first dose of Gilenya was known when it was authorised. The medicine’s product information already includes recommendations to observe patients for signs and symptoms related to this side effect for at least six hours after the first dose.
Gilenya’s marketing-authorisation holder, Novartis, has committed to supplying the Committee with the results of its ongoing investigations into the cardiovascular effects of this medicine. The Committee will take this information into account while carrying out its full review of the balance of benefits and risks of the medicine.
The EMA has now announced that it is extending its investigation for a further month and is expected to report on April 20th. Further information about the EMA and Gilenya can be found on the EMA website.
Advice on vitamin D supplements for at risk groups
Source: CAS (Central Alerting System)
Date published: 02/02/2012
The Chief Medical Officers have issued a communication to healthcare professionals to increase awareness of the risk of vitamin D deficiency in some of the UK population, particularly at-risk groups such as pregnant women and infants and young children.
In 2011, the Chief Medical Officer for Scotland, wrote to health professionals in Scotland on this topic. This letter is a restatement of this advice and contains important information about prescribing and recommending vitamin D supplements to those groups of the population at risk of vitamin D deficiency.
The UK Health Departments recommend that:
• All pregnant and breastfeeding women should take a daily supplement containing 10micrograms of vitamin D, to ensure the mother’s requirements for vitamin D are met and to build adequate foetal stores for early infancy.
• All infants and young children aged 6 months to 5 years should take a daily supplement containing vitamin D in the form of vitamin drops, to help them meet the requirement set for this age group of 7 to 8.5 micrograms of vitamin D per day. However, those infants who are fed infant formula will not need vitamin drops until they are receiving less than 500ml of infant formula a day, as these products are fortified with vitamin D. Breastfed infants may need to receive drops containing vitamin D from one month of age if their mother has not taken vitamin D supplements throughout pregnancy.
• People aged 65 years and over and people who are not exposed to much sun should also take a daily supplement containing 10 micrograms of vitamin D.
Women and children from families who are eligible for the Government’s Healthy Start scheme can get free vitamin supplements which include vitamin D, in the form of tablets for women and drops for children. It is the statutory responsibility of PCTs, the local trust or Health Board to make Healthy Start vitamins available locally to women and children on the scheme. Health professionals should familiarise themselves with local distribution arrangements for Healthy Start vitamins.
The Communication also states that “NHS organisations can choose to sell the vitamins or supply them free of charge to those who are not eligible for Healthy Start, and we encourage this.”
Information taken from National Electronic Library for Medicines
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)
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."
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