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."

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

What Members say about the UKMSSNA:

• "I feel the UKMSSNA is the voice of MS Specialists.  There is a huge amount of knowledge and experience invested.  I take a great deal of reassurance from knowing that there is an easily accessible responsive forum that I can tap into when I am struggling."
  
  
• "The UKMSSNA provides an excellent service as it is.  The website provides a very valuable source of information.  Our profession is constantly being challenged with new government strategies and it is good to know that the UKMSSNA is constantly working on projects to assist us in these challenging times.  Thank you!!"
  
  
• "I feel that the UKMSSNA offers support and advice in an easy and quick way.  It is especially useful to those nurses who work alone and do not have the support of other MSSNs available at their workplace."
  
  
• "I find the UKMSSNA really supportive and well worth the subscription!  Thank you."

For more information and to download application forms go to the Membership page.

What patients say about MS Nurses:

• "The MS nurses have made me aware of all that is available for me. ...It is reassuring to know they are there."

• "My MS Nurse is nothing short of a lifeline for my husband and me."

• She organises meetings for patients and invites guest speakers to cover different subjects of concern.  She gladly seeks out any information I require."

• "She has a greater understanding of MY condition than any other healthcare professional.  Her years of experience mean that she can always answer my questions when others cannot."

• I do not think that anyone has the understanding and empathy that the MS nurses have. GPs do not have the understanding as they have to deal with so many other illnesses.  Who else do you phone for advice or help when you are concerned or worried?"

• I cannot thank the MS nurses enough for the care and support they have given me.  It is so reassuring to be seen and to speak to specialists.  I have read a lot about MS and have a very supportive family, but the support I get from the MS Nurses cannot be found anywhere else.  Thank you."

• The MS Nurse is always approachable and talks to you as an individual yet draws on experience she has gained with similar patients.  I can talk to an MS nurse more easily than a neurologist."

The Role of the MS Specialist Nurse

MS Specialist Nurses are experts in nursing and the specialist requirements of patients with complex health problems. Patients want specialist nurses to meet their special health needs and MS nurses are able to provide regular and ongoing assessment and support that is not provided traditionally within the medical model.   They promote a "wellness" approach and coach patients to live healthily throughout the disease trajectory. 

In 2001 the role of the MS Specialist Nurse was identified as

"[to] Empower those affected by MS by providing information, support and advice about the condition from time of diagnosis and throughout the disease spectrum.  The MS specialist nurse is pivotal in providing a greater understanding of the condition, and by adopting an holistic, collaborative and co-ordinated approach can help those individuals, where possible, reach their goals of self management.   The role also involves acting as a consultant and educational resource for staff striving towards greater awareness and knowledge of MS in the health and social arena."

(MS Trust, UKMSSNA, RCN. Specialist nursing in MS – the way forward: the key elements for developing MS specialist nurse services in the UK. MS Trust, April 2001.[out of print])

Education is an important part of MS Nursing and includes providing information to:

• Patients and their families
• Carers
• Health and Social Care professionals
• Student nurses
• Employers

There are now around 300 MS Nurses throughout the UK and there is a more strategic approach to new posts and an acceptance of the MS Specialist Nurse as a mainstay of MS management together with the emergence of models within MS Nursing with a clearer definition of the role.

MS Nurses now support thousands of people with MS, including those on treatments.  The responsiveness and accessibility of MS Nursing Services are highly valued and the role has expanded to include MS nursing research, publication, and service development.  The evolution of the role has enabled those with MS to enjoy a higher quality of life.  

MS Specialist Nurses provide:

• "Newly diagnosed" courses which gives an introduction to MS, with speakers discussing various aspects of living with MS
• Nurse-led clinics problem-solving, assessment, lifestyle advice, support.
• Symptom management
• Initiation and monitoring of Disease Modifying treatments (where appropriate)
• Home visits (as appropriate)
• Lifestyle advice
• Telephone advice line
• Referral to other disciplines/ agencies, e.g. physiotherapy, speech therapy, occupational therapy
• Education to health professionals study days, link interest group for professionals with an interest in MS
• Drop-in sessions held at local venues, e.g. health centres, community hospitals, MSS branch meetings
• They are also present at consultant and multi-disciplinary clinics.

The MS Specialist Nurse should be contacted:

• If you have a question about your MS or treatment options
• If you are concerned by any symptoms you are experiencing
• If you think you may be having a relapse
• If you are finding it difficult to cope with any aspect of your MS
• If you need advice about medication
• If you want any information about MS

MS Nurses generally work Monday to Friday 9.00-5.00 excluding bank holidays. They are often out of the office in clinic or on home visits and but it is generally possible to leave a message and they will ring you back when they are free. They may not be able to respond for a couple of days because of other commitments.

Map of MS Services

If you want to find out if there is an MS Nurse near you, go to the MS Trust online Map of Services or the MS Society Map of MS Centres

UKMSSNA Publication: Multiple Sclerosis Specialist Nurses: Adding value and delivering NHS targets

Written at a time of great change within the NHS, this document is targeted at commissioners, PCT fund holders, Directors of Nursing, service managers and others involved in the provision of health services.  The document identifies the value and benefits of employing MSSNs in terms of cost effectiveness as well as clinical efficiency.

Adding value and delivering NHS targets

MS Nursing International Certification Examination

Registered Nurses with at least two year's experience (recommended) in MS Nursing can take the MS Nursing International Certification Examination.  The examination consists of 150 multiple-choice questions and it normally takes place in the UK on the morning of the first day of the MS Trust Conference in November. 

MS Nurses who wish to take the exam can apply through the UKMSSNA, in which case they must be a member of the Association.   Candidates can also apply to the IOMSN for a bursary towards the cost of the exam fee ($300).   Candidates may have to pay part of the fee themselves, normally a nominal amount.   Members of the UKMSSNA currently do not have to make any contribution as the balance of the fee is covered by the Association. 

MS Specialists International Examination

MS Specialists who are not nurses might wish to consider sitting the Specialists Exam.  We need to point out that the exam is based on North American practice and so the content may have specific meaning to practice standards for the USA and Canada.  However, if the demand is sufficient the CMSC may investigate the possibility of designing an exam with a global focus.  Although the exam is computerised in North America, it will be a paper and pencil exam in the UK (i.e. same as the Nurses' exam - a multiple-choice exam).

For more information and an Exam Handbook, please contact the Administrator

Re-certification

Exam Certification lasts five years and then you must re-certify through Learning Activities or by re-sitting the exam.  In 2012 the people who passed the exam in 2007 will be due for re-certification.

Details of re-certification can be found on the MSCNIB/PTCNY website.

For details of candidates who have passed the examination go to the MSNICB website