November 2011 Open door

November 2011

Inside this issue...

Welcome to Open Door

Intrathecal baclofen

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The results of our third audit of MS services are reported in this issue and our thanks to all of you who took part. The NICE MS management guidelines were published in 2003 containing six basic recommendations and describing a good service for people with MS. The audit asked purchasers, providers and users of MS services how their experiences measured up to those set out in the guideline. The results show that the recommendations have not been implemented widely or consistently and there has been little overall improvement since 2006 when we did the first audit.

This is not a report criticising people who work in the NHS - many people were full of praise for their MS nurse/therapist/doctor and it does show that when people are using the specialist MS centres in hospitals they can get excellent care.

Exercises

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Tremor

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The problem is that not everybody has a specialist centre within reach. Many people with pain, fatigue, mobility issues, etc are seen outside the MS centres and their problems can get lost in the system, especially if their needs cross between the NHS and social services.

We strongly support the NICE guidelines, and their revision starting next year.

They do set out the basics of what good services should look like, but without the necessary carrots and sticks to get them fully implemented, they don’t work and we need to understand how that will change in the future. People with MS deserve better.

Pam Macfarlane Chief Executive

Cognition chatroom Do you sometimes forget where you have put things? Or find that you can't say what's on the tip of your tongue?

Also inside:

The next MS Trust chatroom on Tuesday 22 November covers problems with memory, concentration, attention span and dealing with complex tasks. Ask questions and share thoughts with specialist health professionals and other people with MS.

Work and MS

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News

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If you are unable to join the chatroom, post or email your questions in advance to the address on the back page.

Research news

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Improving services

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For more details visit www.mstrust.org.uk/chatrooms If you would like an email reminder about chatroom sessions, contact info@mstrust.org.uk

www.mstrust.org.uk

Call: 0800 032 3839

Audrey's story

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Work and MS

“Sometimes I feel my life is like a room where, from time to time, the walls move in a few inches. Work is one way of pushing them back.” from At work with MS Work is an important part of life. As well as the financial aspects, the social and psychological benefits of going to work, using knowledge and skills and gaining experience are all part of the reason why work occupies a lot of our time and energy.

Many people with MS want to work, yet a recent report from The Work Foundation reveals some startling statistics about the challenge of continuing to do so once diagnosed with MS. ■ Up to 80% of people with MS stop work within 15 years of diagnosis ■ People with MS lose an average of 18 years of working life ■ More than 75% of people with MS feel that the condition has impacted their employment and career opportunities The report argues that with the right information and practical support, people with MS could remain in work for much longer. The report emphasises that more needs to be done by individuals, employers, the healthcare system and policy makers to make this a reality. This point is supported by the results of our latest audit of MS services in partnership with the Royal College of Physicians, which showed that specialist vocational rehabilitation to help people remain in, or return to, work is not available in most areas.

We will continue to campaign for more resources to be made available. However, often assertive selfadvocacy is the most productive option and we do our best to help through our information service, books and web tools.

The MS Trust has funded two research projects on work, undertaken by occupational therapist Gail Townsend. The first project looked at the barriers to

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work for people with MS and the training and tools needed by professional work advisors. Information for all parties was a key requirements and this resulted in our book At work with MS. The new edition has been updated to incorporate the Equality Act, findings of the Work Foundation report and the tips and advice people with MS have shared with us. Other books - MS explained, MS what does it mean for me? and Living with fatigue - can also provide useful information to share with employers and colleagues.

Gail also developed a toolkit for health professionals to give them a structured framework to use when dealing with work issues. This is now available on our website and we are developing a similar approach for people with MS, including videos of personal experiences.

There is a lot of information available, but these points were all highlighted to us when we produced At work with MS: ■ Don't rush into major decisions ■ Think about the best way to build a positive relationship with your employer including telling them your diagnosis ■ Get information to help your employer and colleagues understand what it's like to have MS ■ Understand your rights under The Equality Act ■ Don't forget the simple things can often be the most help - a quiet spot in the office for example ■ Don't expect everything to be resolved in one meeting, or with one set of adjustments - things may continue to change ■ Make sure you get the right advice and treatment for your symptoms - ask your GP, MS Nurse, neurologist ■ And, ultimately, remember your home life and health are important too MS doesn't take away what you have learned, but sometimes leaving work will be the best option and there are other ways to use your skills that could be even more fulfilling.

MS Trust publications mentioned can be ordered on the back page or downloaded from www.mstrust.org.uk/pubs The Work Foundation report is available from their website - www.theworkfoundation.com

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News

NICE consultation on CCSVI

NICE guidance on fingolimod In August, NICE (National Institute for Health and Clinical Excellence) issued draft guidance to not recommend fingolimod (Gilenya).

Fingolimod is an oral drug licensed for people who continue to have relapses despite treatment with one of the current disease modifying drugs or who have rapidly evolving severe relapsing remitting MS - two or more relapses a year.

The second NICE appraisal committee met in October to consider responses to the draft recommendation, including those from the MS Trust.

The MS Trust stressed the need to understand the impact of relapses, highlighted that best supportive care (management not using drugs) is not comparable to disease modification with drug therapy, and the importance of providing additional treatment options, particularly to those who are unable to tolerate current treatments.

The committee were sensitive to the impact and challenges of living with MS and took the unusual step of asking clinical experts to attend for a second time to discuss further the issues around living with MS. The committee noted the views of the many clinical experts and discussed the personal evidence submitted by people with MS. The final decision from NICE is expected at the start of 2012.

Following a review of the evidence, NICE has issued draft recommendations on the use of percutaneous venoplasty for CCSVI (chronic cerebro-spinal venous insufficiency). The recommendation is that treatment should only be offered as part of structured clinical trials, ideally using 'sham venoplasty' as the comparator.

The MS Trust responded to the consultation making a number of points. We agree that current evidence is weak and further research is required but we do not believe 'sham venoplasty' is a valid control. The duration of follow up needs to be sufficient to demonstrate the efficacy of treatment and measures of efficacy need to be relevant to people with MS. The research needs to be undertaken in an appropriate group of people with MS. Final guidance is expected before the end of the year.

Tysabri blood test A new test has been launched that allows people on Tysabri to make informed choices about their treatment.

Treatment with Tysabri has been associated with PML, a rare but serious brain infection caused by a mutation of the JC virus. The JC virus is a common virus that usually causes no symptoms but can be very serious in people whose immune system has been suppressed through medication or illness.

The new test, called Stratify JCV, shows if someone has been exposed to the JC virus. It can not identify who will get PML, but it can suggest the relative level of risk.

People on Tysabri or considering treatment, should talk to their neurologist.

NICE Guideline review NICE has set the timetable and started recruiting members of its guideline development group who will start reviewing the MS clinical guideline next year. Originally issued in 2003, the guideline sets the benchmark for best practice in delivery of MS services in England and Wales. The new review, which is expected to take several years, will take account of changes in diagnosis and treatment.

MS Trust factsheets: â– Fingolimod (Gilenya) â– Natalizumab (Tysabri) Order from the back page or download from www.mstrust.org.uk/pubs

Call: 0800 032 3839

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Research news

Help with bladder problems

Bone health and falls in early MS

People with MS may experience urgent and/or frequent need to go to the toilet, known as overactive bladder.

99 people with clinically isolated syndrome (CIS) or who had recently been diagnosed with MS were compared with 159 people without MS. Those with CIS or MS had experienced their first symptoms between two months and three years previously.

Research has been published on two promising treatments, solifenacin and onabotulinumtoxinA (Botox).

People who received 30 injections of Botox into the bladder muscle showed some improvement within two weeks which became significant within six weeks. The effect was long lasting (42 weeks on average).

Solifenacin is related to other antimuscarinic drugs already prescribed for overactive bladder but has fewer side effects. Treatment for eight weeks gave significant improvement. Two thirds of the participants chose to continue solifenacin treatment at the end of the study.

Cruz F, et al.

Efficacy and safety of onabotulinumtoxinA in patients with urinary incontinence due to neurogenic detrusor overactivity: a randomised, double-blind, placebo-controlled trial.

European Urology 2011 60(4):742-750. van Rey F, Heesakkers J. Solifenacin in multiple sclerosis patients with overactive bladder: a prospective study.

Advances in Urology 2011;2011:834753.

Although their MS was at a very early stage, they showed low bone mass more often than the people without MS. About a fifth reported falling but this related directly to their degree of disability. However, they were no more likely to break bones than the control group.

The researchers conclude that people with MS may experience falls early in the disease, before walking and balance appear to be affected. They suggest that bone health should be promoted in the early stages of MS. Moen SM, et al.

Fractures and falls in patients with newly diagnosed clinically isolated syndrome and multiple sclerosis.

Acta Neurologica Scandinavica Supplementum 2011;(191):79-82.

Moen SM, et al.

Low bone mass in newly diagnosed multiple sclerosis and clinically isolated syndrome.

Neurology 2011;77(2):151-157.

Product note Oxybutynin pills have also been used to treat overactive bladder. A skin patch is now available which has fewer side effects.

Over 50 genes linked to MS In this large study, the genes of 9,772 people with MS of European descent were studied by 23 research groups in 15 countries, including several groups from the UK. The research identified 29 new genes associated with MS as well as confirming most of the 26 genes found previously. The majority of these genes are linked to the immune system, confirming that MS is caused by the immune system turning against itself. About a third of the genes also appear to be involved in other autoimmune conditions. This suggests that the same general processes or problems in the immune system can start a range of diseases with quite different symptoms.

International Multiple Sclerosis Genetics Consortium; Wellcome Trust Case Control Consortium 2, et al.

Genetic risk and a primary role for cell-mediated immune mechanisms in multiple sclerosis.

Nature 2011;476(7359):214-219.

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Walking to the beat MS can change the normal pattern of walking, known as gait dysfunction. This small study tested rhythmic auditory stimulation (RAS) - music with a strong rhythm to cue and regulate walking.

Ten people with MS received either RAS for four weeks or no treatment for two weeks followed by RAS for two weeks. Participants were provided with MP3 players containing songs whose tempo was 10% above the individual's natural walking pace. They were instructed to walk to the music 20 minutes daily.

In the RAS group, many aspects of gait improved significantly within one week. The programme was very popular and seems to be an easy and safe way to improve walking.

Conklyn D, et al.

A home-based walking program using rhythmic auditory stimulation improves gait performance in patients with multiple sclerosis: a pilot study.

Neurorehabilitation and Neural Repair 2010;24(9):835-842.

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Pregnancy on natalizumab

Breastfeeding and relapses

It is recommended that natalizumab (Tysabri) treatment is stopped three months prior to a planned pregnancy. However, 35 women accidentally became pregnant while still on natalizumab.

302 women were followed during pregnancy and for at least one year afterwards.

All the women stopped treatment as soon as they realised they were pregnant. They found that MS symptoms did not increase either during the remainder of the pregnancy or after giving birth.

29 of the 35 women gave birth to healthy children, although one baby had hexadactyly, a minor malformation of the fingers or toes. Five women miscarried in the first three months and one opted to terminate the pregnancy.

The researchers emphasise that it is still best to stop natalizumab treatment before a planned pregnancy. However, there is no need for a termination after accidental pregnancy on natalizumab although careful monitoring should still be carried out.

Hellwig K, et al.

Pregnancy and natalizumab: results of an observational study in 35 accidental pregnancies during natalizumab treatment.

Multiple Sclerosis 2011;17(8):958-963.

Giving birth and MS Births to 432 women with MS in Canada were monitored and compared with 2,975 women without MS. Babies born to mothers with MS had very similar birth weights and were born around the same number of weeks of pregnancy. Overall, having MS did not increase the need for either extra help with a vaginal delivery or a Caesarean section.

However, there was a small increase in risk for women with the highest levels of disability.

Women with MS should be reassured by these findings although those with a higher level of disability may need closer monitoring during pregnancy. van der Kop ML, et al.

Neonatal and delivery outcomes in women with multiple sclerosis.

Annals of Neurology 2011;70(1):41-50.

The age at which MS began, age at pregnancy, disease duration, level of disability, drug treatment and exposure to chemicals did not correspond to relapse rates. However, women who had a higher relapse rate before pregnancy or during pregnancy had a greater chance of relapsing after giving birth.

The overall rate of relapses before, during and after pregnancy was the same for the group who breastfed and the group that did not.

The results of this study differ from previous ones which showed that breastfeeding might protect women from relapses. The authors suggest that people with a high risk of relapsing after giving birth may prefer not to breastfeed but to go onto treatment for their MS. Portaccio E, et al.

Breastfeeding is not related to postpartum relapses in multiple sclerosis.

Neurology 2011;77(2):145-150.

Seasonal risk of hospitalisation Over 7,000 acute admissions of people with MS to hospital in Scotland were compared with over 6 million acute or day case admissions for people without MS. There was a significant difference between the two groups. People with MS were more often admitted in April and June compared with people with other conditions. However, they were admitted less often in March and October. The identification of the responsible environmental factors will require further work although vitamin D and infections are two possible candidates.

In another study by the same authors, it was shown that low levels of vitamin D corresponded with a greater risk of relapse in the following six months suggesting that vitamin D can help protect against relapses.

Handel AE, et al.

Seasonality of admissions with multiple sclerosis in Scotland.

European Journal of Neurology 2011;18(8):1109-1111.

Disanto G, et al.

Vitamin D and multiple sclerosis hospital admissions in Scotland.

QJM 2011 Jun 29. [Epub ahead of print]

Bethany Brown

MS Trust factsheets: ■ ■ ■ ■

Pregnancy and parenthood Natalizumab (Tysabri) Vitamin D Bladder problems

Order from the back page or download from www.mstrust.org.uk/pubs

Call: 0800 032 3839

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Research activities undertaken by the MS Trust to improve services for people with MS Nicola Russell, Director of Services, MS Trust One of the key elements of good services for people with MS is access to health professionals who understand the condition and who have the capacity to support and advise people with MS as required. In this context we have recently undertaken two pieces of research and will be using the results to help us work with health professionals and to campaign for improved services.

Defining the value of MS specialist nurses scoping study This study was undertaken using desk top research along side a range of interviews and group discussions involving people from the Department of Health, primary care organisations, acute trusts and members of the specialist teams. It was undertaken by an independent research group who had had previous experience of working in the MS arena and thus understood the MS specific issues.

The results prove that specialist nursing support for people with MS varies widely across the country.

Whilst some areas have excellent services and patients are really well supported by their nurses, in others, services are stretched to breaking point or do not exist at all.

on these issues with the specialist nurses through our education programmes.

An immediate outcome of the research and a meeting with MPs in the House of Commons is that we are now mapping all the MS nurses across the UK compared to the population. This will establish exactly where people with MS are not getting the support they need and identify which nursing services are strained beyond their means. We anticipate that this will provide powerful evidence to lobby for additional nurses where necessary and to ensure existing nurses get the right support.

Currently many nurses are working alone with limited funding, limited resources and with excessive numbers of patients on their books. So far this year we have supported around a dozen nurses whose services were on the brink of collapse. Having someone to back them up and help them prioritise and fight for funding can really make the difference and help to turn things around for their patients. That is the support that our MS Nurse Advisor provides.

If you were one of the people who donated money to our recent MS nurse appeal, thank you. It has helped to fund this research and continues to fund our activities to make good use of the results.

Without your support we might not have been able to undertake this work.

For the person living with MS it is not fair that the support they receive can depend so much on where they live. Anecdotally we have been aware of this situation for some time, but in order to bring about change, it is vital that we have up to date evidence to demonstrate our fears - this research has given us that evidence.

The research has also given us a greater understanding of some of the pressures in the system - the difference between funding and contractual arrangements; the numbers of nurses working in the community versus hospital - and also some areas where MS specialist nurses could improve their working practices to be more efficient and cost effective. In the latter we are now working

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www.mstrust.org.uk

The national audit of services for people with multiple sclerosis 2011 In parallel with the nurse research, the Royal College of Physicians (RCP) and MS Trust set in motion the third national audit of services for people with multiple sclerosis. The results have recently been published and are available on our website at www.mstrust.org.uk/audit-2011

■ Mobility remains a critical issue and access to equipment was a problem, with people with MS failing to get the right equipment at the right time.

■ There was evidence of a reduction in cooperation between health and social services and this was evidenced by a lack of seamless services.

■ There was no evidence of involvement of people with MS in local commissioning.

■ Access to rehabilitation was very varied across England and Wales and there was virtually no access to vocational rehabilitation.

■ A staggering 79% of people with MS had fallen in the last 12 months with 16% of these people having more than 20 falls in the last year.

■ There was very little evidence of support to families and carers.

When the MS Trust embarked on this journey with the RCP, our intention was to assess whether the NICE Clinical Guideline CG8 for multiple sclerosis had been implemented and to use an accepted RCP audit methodology to leverage an improvement in MS services, in the same way that the stroke audit has so effectively improved stroke services. As the NICE guidance only applies to England and Wales the audit has also applied to these countries.

The audit is a 360º methodology involving commissioners of services, providers and people with MS. With the move to clinical commissioning this year we have also collected some data from GPs. It is impossible to summarise a complex audit in one page but the key messages are: ■ Specialist centres are providing good services and the standard of the services in these centres has improved over the period since the first audit in 2006.

■ Within the commissioning environment there is still little understanding of neurology or MS, and in most cases no named individual with responsibility for neurology.

■ The NICE guideline was launched in 2003 and yet the six key recommendations have yet to be implemented. NICE identified one sentinel marker, namely pressure sores, and in this latest audit 4% of people with MS reported a pressure sore within the last 12 months. Whilst this figure has fallen since the first audit, this marker does demonstrate a lack of implementation of many of the key recommendations in the NICE guideline.

■ People with MS reported that pain, cognition, and fatigue were still not well managed and all had a large impact on their life.

Are we surprised by these results? To be honest no, but it is depressing to have evidence to show that eight years after the launch of the NICE MS guideline and six years after the launch of the National Service Framework for long-term neurological conditions improvement has not been greater.

The MS Trust and the RCP remain committed to the audit process as a way of improving services and also capturing data about what does and doesn’t work. We will be undertaking a further audit in due course. We will of course take on board the new NHS architecture and also the new NICE guideline when it is published. Let's hope that with the next guideline more focus is given to implementation otherwise we might all ask is NICE worth the financial investment?

Conclusion The MS Trust will be using these results to campaign for changes and to generate coverage in the media about these research projects and the implications of the research for people with MS. Whilst much progress has been made in the last decade it is frustrating that there is so little understanding of MS amongst decision makers. It is also frustrating that the variability of MS is so often underestimated.

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Intrathecal baclofen who for and when?

Val Stevenson Consultant Neurologist and Lead of the Spasticity Service The National Hospital for Neurology and Neurosurgery, London Intrathecal baclofen (ITB) is an invasive treatment for spasticity and spasms. It used to be thought of as a last resort but more recently both health professionals and people with MS are realising it can help to keep people mobile and well without the side effects often experienced by oral medications.

Types of spasms Flexor spasms The limb bends upwards towards the person's body

What is spasticity?

Extensor spasms

Spasticity means there is an increase in muscle tone.

In other words, when the muscle is moved, there is more resistance to this movement than there normally would be. This stiffness can interfere with fine control causing a loss of fluidity of movement.

The limb extends away from the person's body

Spasms are also a common feature causing a limb to suddenly jerk out straight (extensor spasm), flex up towards the body (flexor) or cause the legs to come together (adductor). These spasms can be painful or even dangerous if they occur during transferring or walking.

The limb pulls inwards towards the person's body. Commonly a person experiences this as difficultly separating their thighs

Clonus or a repetitive tapping of the feet can also be a problem.

Spasms affecting the trunk

How common is spasticity?

The back or trunk can arch off a bed or away from the back of a chair

Unfortunately spasticity and spasms are an extremely common and troublesome feature of living with MS. In a survey, 84% of 18,727 patients with MS reported at least some symptoms of spasticity, and 30% reported moderate to severe symptoms1.

Does it always need treating?

Symptoms of spasticity can be unpleasant but sometimes it can actually be helpful; if a person's legs are very weak the stiffness spasticity causes may help in transferring from bed to chair or even in walking. However, even if this is the case, it is still important to see a physiotherapist to ensure movement patterns are optimal and to prevent complications such picture: as contractures (shortening XhyraGraf of muscles or permanent joint changes).

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Adductor spasms

How can spasticity be treated?

The mainstay for managing spasticity is through physical measures. It is important to keep muscles, ligaments and joints as flexible as possible. A physiotherapist can advise on how to maintain flexibility, teach specific stretches and strengthening exercises and advise on different ways of moving and positioning the body.

It is also essential that the person with MS is knowledgeable about spasticity, its associated features and possible trigger factors. Urinary problems, constipation, skin breakdown, infection, picture: Noyes inappropriate seating, ill fitting clothes or splints can

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all exacerbate spasticity or spasms. Attention to these may prevent the need to escalate drug treatments.

Sometimes however, exercise and managing trigger factors are not enough and drug treatments also need to be used.

The baclofen is delivered by an implanted pump in the lower abdomen; this is connected to the intrathecal space via a catheter (very thin tube) which runs under the skin round to the back and into the spine. Implantation requires an operation under general anaesthetic.

Which drugs are used to treat Intrathecal baclofen in spasticity? multiple sclerosis The commonly prescribed drugs for spasticity include baclofen, tizanidine, gabapentin, clonazepam (or diazepam) and dantrolene. Occasionally pregabalin may also be trialled.

Which drug is tried first depends on the specific problem and any other relevant features. For example general stiffness could be treated with baclofen first line, spasticity with associated neuropathic pain may respond well to gabapentin or pregabalin, nocturnal spasms disturbing sleep often respond very well to clonazepam.

Whichever drug is used first should be started at a low dose and slowly increased until the goal of treatment is reached. This may be improvement in walking or transfers, less pain or perhaps a good night's sleep. Unfortunately all of the drugs can cause side effects, the commonest of which are drowsiness and light headedness. If side effects are experienced before the goal is reached it may mean a second drug needs to be added in.

What if the tablets don’t help?

If it is not possible to control the spasticity or spasms with these drugs without intolerable side effects, Sativex (cannabis extract spray) can be helpful.

About half of people with MS and moderate to severe spasticity will respond to Sativex; whether someone is a responder can be identified after a four week trial of the drug2. The dose is then controlled by varying the number of sprays taken each day. Sativex is usually prescribed by an MS or spasticity specialist who will monitor the effects over the trial period and then continue prescribing for those people who have responded. However access to Sativex is variable throughout the UK.

What next?

If spasticity and spasms continue to be a problem then intrathecal baclofen should be considered. Intrathecal refers to the space surrounding the spinal cord; this space is filled with cerebrospinal fluid (CSF). Delivering the baclofen into the CSF allows it to act directly on the nerve receptors of the spinal cord. This means tiny doses are used (approximately 100th of the oral dose), thus avoiding the commonly seen side effects of oral baclofen such as drowsiness.

The use of intrathecal baclofen (ITB) for severe spasticity was licensed in 1992. Small trials have shown it to be both safe and effective in MS and a more recent study demonstrated its usefulness in people with MS who are walking3. However, despite this, it is not as widely used as expected given the number of people with MS and the frequency of spasticity. This appears to be due to a combination of several factors. Firstly an underestimation by neurologists of the impact of spasticity on quality of life; secondly concerns by doctors over the costs and safety of ITB; and thirdly a lack of awareness by patients, carers and health professionals of the potential benefits of treatment4.

Does intrathecal baclofen help everyone?

Not everyone responds or is appropriate for ITB. After careful assessment by a multidisciplinary team including a physiotherapist, therapeutic goals are defined and a trial of ITB is planned. Goals may be around walking, transfers, seating or comfort.

The trial is carried out in hospital. Baclofen is injected into the CSF by performing a lumbar puncture. The peak effect of this is seen after four hours and the assessment and measures are repeated by the team. Goals are reviewed and a decision made between the team and the individual as to whether goals are achievable and whether to proceed to pump implantation. If it is not clear whether ITB is appropriate a second trial can be performed at a higher or lower dose.

How is the dose of intrathecal baclofen monitored?

Once the pump is in place it is necessary to adjust (titrate) the dose for the individual. The aim is to find the dose that decreases spasticity enough to achieve the goals and allows for the oral drugs to be tailed off, without causing unwanted side effects.

This process can take a few weeks.

The dose is changed by telemetry; a handheld programmer is positioned close over the pump site.

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Doses can be changed by minute amounts as well as being varied throughout the day to fit with the person's lifestyle. For example, in someone who is walking, the dose may be slightly lower in the daytime to help with walking and higher at night to ensure they sleep well with no spasms or discomfort.

The pump needs to be refilled by the specialist team every four to six months; this is a simple procedure that involves placing a needle through the skin of the abdomen and into the pump reservoir. In addition, the battery life of the pump is about seven years so it is necessary to change the pump through another operation every seven years5.

How can people find out if intrathecal baclofen is for them?

Anyone with troublesome spasticity or spasms that are not helped by oral medication, or who is experiencing side effects, should consider ITB. In the past people with MS who are walking were often told “you're not bad enough for that” or “it's not possible to walk with ITB, it will take you off your feet”. Although both of these may be true, it is important to discuss this and have a detailed assessment with a neurophysiotherapist and neurologist or rehabilitation physician to look at whether spasticity is being best managed and whether it is helping or hindering mobility.

Often with people who are walking it is impossible to say for sure whether ITB could help until the trial is performed. Around the UK there are many neurological or rehabilitation centres who offer a spasticity service; asking to be referred is the first step to assessment for ITB. References 1.

Rizzo MA, et al.

Prevalence and treatment of spasticity reported by multiple sclerosis patients.

Multiple Sclerosis 2004;10:589-595.

2.

Novotna A, et al.

A randomized, double blind, placebo-controlled, parallel-group, enriched-design study of Nabiximols (Sativex) as add-on therapy, in subjects with refractory spasticity caused by multiple sclerosis.

Eur J Neurol. 2011;18(9):1122-1131.

3.

Sadiq SA, Wang GC. Long-term intrathecal baclofen therapy in ambulatory patients with spasticity.

Journal of Neurology 2006;253:563-569.

4.

Erwin A, et al.

Intrathecal baclofen in multiple sclerosis: Too little, too late?

Multiple Sclerosis 2011;17(5):623-629.

5.

Jarrett L. Intrathecal therapies, including baclofen and phenol.

In Stevenson VL, Jarrett L. eds.

Spasticity management: a practical multidisciplinary guide.

London, Informa Healthcare, 2006, 85-105.

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My baclofen pump Carmel Mackey In 2006, I developed a gastric ulcer which the gastrologist said was a result of the baclofen I was taking to manage the stiffness and spasticity in my legs. I came off the drug but within six months I started to experience pain and spasm in my right leg.

I was given an alternative drug, tizanidine, but with very limited results.

The pain in my right leg was stopping me sleeping properly and the muscle stiffness made it extremely difficult to get into the car or drive, even with an automatic car converted to hand controls. I started using a walker and eventually a wheelchair. Unable to walk, I retired from work. Life was very difficult.

I started to research any treatment I could find. I tried the hyperbaric oxygen chamber in my local MS Therapy Centre, which helped my bladder symptoms but not my spasms. I also had physiotherapy, but the spasms were so bad that the local NHS physio was unable to help.

Then I came across intrathecal baclofen therapy in information from the MS Trust. I was seen by the team at the National Hospital in London, who gave me the trial dose. The result was excellent, so I had the operation to insert the pump in 2009.

I stayed in hospital for three or four weeks to have intensive physiotherapy to improve my mobility and then returned weekly for follow up physiotherapy until I was able to gain more strength in my legs. If it is possible, I would recommend that anyone having the pump inserted remain in hospital for physio.

I'm happy to report that the procedure is 100% successful. I'm generally not aware of the pump which sits quite deep and does not feel heavy. I don't wear tight fitting clothes. If I did, I guess you might see the bump. I still use a T-Roll in bed and therefore sleep on my back rather than on my right side where the pump is. I carry a card when going through scanning machines at airports, though as yet I have never set off the alarm. I love gardening and when kneeling I can only get down so far on that side as the pump is in the way. That is the only time I am aware of it. Due to position of pump, I need to have a high fibre diet.

Every six months I return to have pump refilled by the Spasticity Nurse. This is a very simple, pain free procedure. The nurse and the doctor discuss how things are going and set the new dose. The team are always available to answer any questions no matter how small. The battery life is about six years and it will be necessary to have another operation to replace the battery.

These are small inconveniences that are worth putting up for the better quality of life.

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Exercise resources

Keeping as fit and active as possible is important. As well as maintaining general health, the benefits of exercise for people with MS include reduced fatigue, better posture, more strength and improved mood. But how do you find exercises specifically planned for your needs?

The MS Trust has brought together all of our exercise resources into a new section of our website - www.mstrust.org.uk/exercises

Exercises for people with MS Simple but effective exercises with something suitable for people of all abilities.

The exercises are grouped both by starting position sitting, standing, kneeling or lying - and by the specific areas where they can help, such as balance, posture and strength.

Core stability exercises Core stability is the ability to maintain a steady trunk whilst moving a limb. This keeps the body stable and improves balance and movement.

Training programmes such as Pilates improve trunk stability by exercising the core muscles in a precise, controlled manner.

The exercises available on the MS Trust website were developed by the Therapists in MS group as part of a research study that demonstrated the value of core stability for people with MS. It is important to discuss the best approach to using these exercises with your physiotherapist before you start. Together you can develop a programme that best suits your needs.

Each exercise includes a clear explanation and an animation of the movement. The exercises can be downloaded individually to help you build up your own personal routine.

Exercise videos Our popular DVD Move It For MS is now also available to view as video clips on the MS Trust website. There is something for everyone with MS. After a warm up session, Mr Motivator leads you through a series of fun routines in his own unique style. Clips include stretch and tone, bums and tums, and posture and balance.

Relaxation Sometimes it's great to relax whether at the end of an exercise session or just to take time out from the pressures of the day. MS nurse Vicki Matthews has created a relaxing, calming session specifically for people with MS. Watch the video of the relaxation session online, or download the audio version to listen to where and when you want.

There are also clips which discuss getting the most from going to a gym and matching exercises to what you feel comfortable doing.

To try out the exercises, visit www.mstrust.org.uk/exercises Move It For MS is still available as a DVD. Order your copy from the back page

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Tremor in MS

Angela Davies Smith, Research Physiotherapist, MS Research Unit, Tania Burge MS Specialist Physiotherapist. Bristol and Avon MS (BrAMS) Unit, Frenchay Hospital, Bristol

What is tremor in MS?

Living with MS related tremor

Tremor is the name given to a rhythmical involuntary movement of the arm during purposeful movements, for example when reaching forward to pick up a cup.

The tremor can be seen most at the hand and is frequently accompanied by broader uncoordinated movements of the whole arm called ataxia. For simplicity the term tremor will be used in this article to encompass the range of complex movement disorders that can occur together.

Tremor in MS can affect any movement requiring precision. It often occurs in people who have difficulty in keeping an upright stable posture thus making arm movements even more difficult. Tremor is more noticeable when:

Tremor occurs mainly during voluntary movement (kinetic tremor) and especially during target directed movement (intention tremor) where the tremor increases the closer the person gets towards their target. For example, when drinking there is an increase in tremor when trying to pick up the cup and when placing the cup to the mouth. It is uncommon in MS to experience tremor when the body is at rest, although head and neck tremor can be present and sometimes people have difficulties with speech and with controlling eye movements. Living with intention tremor can be both frustrating and fatiguing. Tremor can occur gradually or can appear rapidly. It may occur in one arm only but frequently occurs in both.

■ Insufficient trunk support

What causes tremor in MS? The exact mechanism of tremor is unknown but is thought to be due to damage in the area of the brain called the cerebellum, which is responsible for coordinating movement. Damage to other parts of the brain called the thalamus and basal ganglia can also cause tremor but the exact mechanism is unclear.

Who is affected?

At least one third of people with MS will have tremor1 and 5-10% of these will experience severe tremor that limits activities. Mild tremor - small, shaking movements - will affect fine hand control such as the ability to write.

Severe tremor - large, uncontrolled movements - can be one of the most disabling symptoms of MS, making daily activities such as feeding, dressing and personal care difficult to perform independently.

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■ Reaching out away from the body ■ Making increased effort ■ Tired/ fatigued ■ Movement is goal directed ■ Emotionally upset

Helpful strategies It is useful to find out what aggravates and what eases tremor. Keeping a diary, or an audio diary when writing is difficult, can be very helpful. In this way you can develop your own best approach. The more you know about your condition the easier it is to work with a health professional in finding the best ways to manage your tremor.

Here are some ideas to help with tremor - you will need to try them and see what's best for you.

Eating and drinking ■ Stopping in front of a target object eg a cup, and then sliding the hand forward to grasp it may reduce the impact of tremor.

■ Weighted cutlery may dampen down tremor and allow you to feed yourself. This can be tiring, so use with caution.

■ Wrist splints and neck collars when eating can stabilise extremities. Rest your arm on the table and slide your forearm across to manipulate food onto utensils.

■ For more severe tremor ask your occupational therapist (OT) about 'adaptive' feeding tools such as the Neater Eater, which uses a resisted feeder arm to dampen down the tremor.

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Personal care ■ Find ways to reduce effort and improve stable position in everyday tasks. For example when cleaning your teeth - hold the sink when putting toothpaste on a toothbrush to give the wrists and hands more stability, lean against the wall when brushing your teeth and use an electric toothbrush to reduce effort.

■ Try to reduce the number of joints involved in any movement. For instance, stabilise your arm by bracing it against the body during hand movements.

Seating (positioning) ■ Good sitting position stabilises the trunk. A high backed chair can help. For some people who have more severe symptoms with poor sitting posture or extreme fatigue, a semi reclined posture will provide more head support.

Orthoses (appliances) ■ Try splints to stabilise the wrist into a good functional position of extension to improve picking up objects.

■ Trunk support, such as corsets, Lycra splinting, clothes containing Lycra or Tubigrip, can provide improved postural control.

■ Weighted bracelets can reduce tremor during tasks, but can cause fatigue. It is better to use lighter weights for shorter periods. The tremor may be initially worse when weights are removed.

Cooling Two experimental studies have shown that cooling of the arms markedly reduced intention tremor severity in people with MS. The benefit lasts for 30-45 minutes and therefore may be beneficial prior to performing specific tasks2.

Exercise

try to keep a good range of movement at the joints and to keep the muscles flexible as this will allow better posture and movement.

Adaptations Computer use often replaces writing by hand.

Where this is difficult, voice activation, keyboard modifications and dedicated software programs can enable independent use of a computer3. Adaptive technologies are constantly advancing and charities such as AbilityNet (www.abilitynet.org.uk) can be a useful resource.

Drug treatments There are no drugs that are specific for tremor.

Some people have found limited benefit from drugs licensed for other conditions (isoniazid, carbamazepine, propranolol, glutethimide)4 but published evidence of effectiveness is very limited and these drugs have not been evaluated for tremor in MS in clinical trials. Cannabinoids appear ineffective. Possible options should be discussed with a doctor as some find no benefit and others respond to a combination of drugs.

Surgery There are surgical options for severe tremor in MS. The outcomes of these approaches are continuing to be evaluated and are not suitable for everyone5.

Who can help?

A range of health care professionals may be able to help and advise how you can best manage tremor.

The physiotherapist, OT, MS specialist nurse, speech and language therapist, psychologist, neurologist and neurosurgeon may all be involved at some time.

Whilst tremor remains one of the most difficult MS symptoms to manage, there are techniques that can help and people often find their own strategies.

References

■ Exercises for the core or central muscles of the trunk, can improve sitting postures and alignment of the trunk.

1.

Alusi SH, et al.

A study of tremor in multiple sclerosis.

Brain 2001;124(4):720-730.

■ Pilates can be a good way to develop postural control.

2.

Feys P, et al.

Effects of peripheral cooling on intention tremor in multiple sclerosis.

Journal of Neurology, Neurosurgery and Psychiatry 2005;76(3):373-379.

■ Mentally practicing or visualising a movement before attempting it can reduce tremor for some people.

3.

Feys, P, et al.

Assistive technology to improve PC interaction for people with intention tremor.

Journal of Rehabilitation Research and Development 2001;38(2):235-243.

4.

Koch M, et al.

Tremor in multiple sclerosis.

Journal of Neurology 2007;254(2):133-145.

5.

Yap L, et al.

Stereotactic neurosurgery for disabling tremor in multiple sclerosis: thalamotomy or deep brain stimulation?

British Journal of Neurosurgery 2007;21(4):349-354.

Physiotherapy can help to manage tremor. It is better to practice exercises and techniques little and often to avoid the effects of fatigue. Gradually the ability to cope with exercise will improve and this in turn can have a positive impact on fatigue. It is important to

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Audrey’s story

Audrey Finlayson Wiesbaden in Germany. We have a wonderful hospital there.” My first trip abroad and I was flat on my back!

The Russian pavilion at the 1958 World's Fair - Chrissy Hunt

I was taken to Lakenheath air base as my husband and parents were being informed. Arrangements were made for my mother to take care of my son, Nicolas, as she had been since my hospitalisation.

Only as my plane was leaving the ground did my family arrive to see the plane soaring above them.

I had the plane all to myself with the exception of one male and one female nurse and the pilots. It was a B54, I remember. It was 1958 and the World’s

I was 81 years old in June and have lived with MS for 53 years. It paralysed me from the waist down initially when I was 28 years old, married to an American airman, and with a small son of 14 months.

We were stationed at Chicksands in Bedfordshire, occupying a small rented cottage in a nearby village. We were all very happy, until one morning, when rising from my bed, I felt a strange sensation of having 'spongy' soles on my feet.

The following day, having recovered from this phenomenon, I noticed once again something was wrong with my feet - they felt as though I had anklesocks. As the week passed the socks grew until the feeling became 'stockings' and my balance was impaired. And then my 'water works' packed up and I could no longer 'pee' without effort.

My husband, Richard, drove me to see the base doctor who ordered me an ambulance at once to take me to the US military hospital at Wimpole Park.

Here, after an attempt to leave my bed, I fell to the floor denied of all feeling from my waist down.

In the meantime, the nursing sister had catheterised me and asked for my passport. “I don't have one yet”, I told her, “I have never been abroad before”.

Puzzled by this odd request I asked her why?

“Never mind,” she soothed, “we're sending you to

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Frankfurt airport in the 1950s - Henrik Schröder

Fair was in Brussels. I saw it by moonlight as the nurses lifted me to observe from the windows, the Russian stand gleaming below where a huge 'pawnbrokers' sign of three balls shone eerily like a film-set. “Something to tell your grandchildren,” said the nurses.

We arrived at Frankfurt where the crew said goodbye and wished me well. An ambulance waited to whisk me to Wiesbaden, where Major Turpin, my neurosurgeon, had been called from a party to meet me. It was 2am. I had myeodil (a red dye) injected into my spine, which allowed him to see if any obstruction was present in my spine through an xray plate.

Six weeks later, bedridden, missing my family and wondering why I was not being treated for this strange illness, I was examined and placed in another, brighter ward, where I 'pretended' to drive

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again and, after many 'adventures', to resume my life. A year and a half later, and still not understanding fully why I had been so ill, my English doctor (Roger) told me that he had received my American medical records. Major Turpin's opinion was that I had multiple sclerosis, but only time and observation would be able to confirm this.

And so it proved to be, as I went on to experience several of the usual symptoms in later years (loss of balance, double vision, exhaustion and so on).

And yet, I consider myself so lucky. Once having understood my illness, I was (and am) able to cope, and manage it in my own way. As far as I was concerned, I didn't have it, didn't want it except when it came at me once in a while, like an intruder taking control of my moods and well being. I developed an 'attitude' and would not allow it to dominate my life (as far as I could).

Audrey with Nicholas after her return from Germany

Yet I do know that how MS affected me is not the same with everyone with the condition. It depends where and how it attacks the individual. People with MS are damaged in different areas of the nervous system and like me, can live for years.

Understanding it is what counts. Not dwelling on it or allowing it to become an obsession is what is important if one is to continue one's life without the self pity it can often evoke.

my car, although nothing was moving at all, regarding my feet. Then one morning I saw to my amazement a slight movement in one of my big toes. Major Turpin was sent for. He threw back the bed covers. “How is dear Mrs Hood this morning?” he asked (which was my then married name) “Oh jumping with joy” (we had this repartee), I said.

“Right,” said he, “lets see you jump”. I willed my big toe to move again and to my astonishment both digits moved together on both feet! Throwing back the bed covers he looked at me, then turning on his heel he left the ward without another word, but I had also noticed his tears of satisfaction as he turned away.

I do not belong to MS clubs or gatherings and I do not mix much with MS people. I do not want to know MS and its intrusive and uninvited presence, and when my hands tremble or pain makes me miserable or I fall over when losing my balance, I divert my attention to other things, such as what can I do to get rid of the osteoporosis that has taken priority over my inability to walk once again, and music, and books, and life.

My recovery from the paralysis progressed gradually after that. A reverse of how it began. After treatment and therapy I eventually recovered enough to walk

Having said all that, I do appreciate Open Door and all the hard work put in by those who care enough to give so much of themselves in its publication.

My Story Audrey's story appears in the My Story pages on the MS Trust website.

Each person's experience of MS is unique and people find many different ways to cope with the ups and downs. The stories you have been sending us show all the aspects of life with MS - good, bad and everything in between. We welcome stories from anyone affected by MS - people with MS, partners, parents, children, health professionals or carers.

If you would like to share your own experiences of MS visit the My Story pages at www.mstrust.org.uk/mystory/

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Information service news

Order form For a full list of publications visit www.mstrust.org.uk/pubs

DVDs Move it for MS – a DVD of exercises for people with MS (£1) Also visit the Exercises for people with MS pages at www.mstrust.org.uk/exercises

Books At work with MS NEW EDITION MS and me - a self-management guide to living with MS MS explained MS: what does it mean for me?

Living with fatigue Primary progressive MS exposed Sex and MS - a guide for men Sexuality and MS - a guide for women

Factsheets Regularly updated, we now have more than 20 titles available including Bladder problems Cognition Fampridine (Fampyra) Fingolimod (Gilenya) Natalizumab (Tysabri) Pregnancy and parenthood Spasticity and spasms Vitamin D

Publication leaflet The full list of titles available from the MS Trust All items are free unless stated, but if you would like to make a donation towards our costs, we would be very grateful

I enclose a cheque payable to the MS Trust

British Medical Association awards MS and me: a selfmanagement guide for living with MS has been Highly Commended in the 2011 BMA awards.

The judges described MS and me as, “a very practical and supportive book written in a friendly, positive and reassuring tone and includes a helpful mix of practical tools, tips and quotes from people living with MS. It's an attractive and weighty resource that will be a useful reference tool for people with MS, offering encouraging words that people managing long-term conditions need to hear” The BMA awards encourage the production of accessible, evidence-based and well-designed patient information that promotes greater awareness and understanding of health matters and choice.

If you Gift Aid your donation, we can reclaim the tax! I would like the MS Trust to treat this donation and all donations I have made for the four years prior to this year and all donations I make from the date of this declaration until I notify you otherwise, as Gift Aid donations.

Signed

Date / /

You must pay an amount of Income Tax and/or Capital Gains Tax in each tax year (6 April 2011 to 5 April 2012) at least equal to the tax that the MS Trust will claim from HM Revenue and Customs on your Gift Aid donation(s) for that tax year. Please notify us if you change your name or address.

Name Job title (if health professional)

Spasticity and spasms webcast The MS Trust has identified some of the most challenging questions people with MS ask about spasticity and spasms and put them to Dr Val Stevenson who leads the Spasticity Service at the National Hospital for Neurology and Neurosurgery.

In a webcast available on the MS Trust website, Dr Stevenson discusses the causes of spasticity and spasms, factors that can worsen or trigger symptoms and the treatments that are available.

Address

An online Q&A board will allow you to submit any questions that have not been answered during the webcast.

Postcode Telephone number A copy of the MS Trust’s data protection policy is available on request Return to: MS Trust, Spirella Building, Letchworth Garden City, Herts, SG6 4ET

Visit www.mstrust.org.uk/spasticity-webcast

Multiple Sclerosis Trust Spirella Building, Bridge Road, Letchworth Garden City, Hertfordshire SG6 4ET T 01462 476700 F 01462 476710 E info@mstrust.org.uk www.mstrust.org.uk Registered charity no. 1088353

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