April 2014-Way Ahead - Volume 18 part 2

April 2012April 2014

Volume 18 Part 2

ISSN 1466-559X

MS Awareness Week 2014: 28 April – 4 May

Inside this issue...

Effective risk communication

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When the MS Trust was founded in 1993 there were only three MS specialist nurses in the UK. There were no disease modifying treatments, and there was very little reliable and accessible information designed for people affected by MS. As MS specialist nurse Nicki Ward-Abel said in a recent issue of Open Door, the MS Trust newsletter for people with MS, “Back then it was a case of ‘diagnose and adios’”. People with MS largely had to deal with their MS alone.

There have been a lot of changes in MS support and care since then. Today, as well as around 230 MS specialist nurses, there is a whole range of both specialist and generalist health professionals involved in the care of people with MS – including district nurses, occupational therapists, continence specialists and speech and language therapists. There are a growing number of drugs and therapies available, and an increasing amount of research into potential drug treatments for progressive MS. Health information is now recognised as an intervention in its own right and can make a positive difference to health and wellbeing. The breadth of information the MS Trust offers has grown over the years and we now offer a Freephone enquiry line, publish a wide selection of free books and factsheets, and have a richly informative website, to help people living with MS make the choices that are right for them. We are also a certified holder of the Information Standard, and the kite mark is featured on our resources for people with MS and on relevant pages on the website. Our enquiry service and information is also available to all health professionals who support people with MS.

Functional neurological 8 -9 symptoms and MS

Illness narratives and MS

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This year MS Awareness Week runs from 28 April – 4 May. At the MS Trust we’ll be looking back at some of the big achievements of the last 21 years and focusing on the big challenges of the years to come. There are now many more choices for people living with MS. Sometimes this can make it feel even more confusing. But we know that knowledge is powerful. This MS Awareness Week we want to reach even more people affected by MS with our free, practical, reliable information.

But we need your help. Could you spread the word with a public information event at your workplace or at a community centre? Could you take the MS Trust 21 Challenge and introduce 21 new people affected by MS to our newsletter Open Door? Or could you organise a Be Bold in Blue event, raising funds to help us to continue to provide our services?

You can find much more information about all the ways you can get involved at the MS Awareness Week website: www.msawareness.org.uk On the website you can also find 21 scientists, health professionals and people affected by MS, talking about what they think are the big achievements of the past 21 years and the priorities for the year ahead. You can also read about our My MS Super Team campaign. This year we’re expanding our very successful Super Nurse awards to include allied MS health professionals. This a great opportunity for the people you help, living with MS, to say thanks to you, and raise the profile of the amazing work of MS health professionals. Keep an eye out for nomination forms arriving soon!

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Also inside: Research news Policy and campaigning

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Information service news

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Get involved!

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Professional development

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Research news

Availability of new DMTs Teriflunomide (Aubagio)

NICE (National Institute for Health and Care Excellence) has issued final guidance for the prescribing of teriflunomide (Aubagio) by the NHS in England and Wales.

Teriflunomide is approved as a treatment for adults with active relapsing remitting multiple sclerosis (normally defined as two clinically significant relapses in the previous two years). NICE has not approved teriflunomide for highly active relapsing MS (relapses despite beta interferon treatment) and rapidly evolving severe MS (two or more relapses a year) for which natalizumab and fingolimod are available.

Teriflunomide key facts: • Oral tablet taken once daily • Reduces relapse rate by about one-third compared to placebo • Common side effects o Nausea and diarrhoea o Transient hair thinning o Increased blood liver enzyme levels

In one of the BG-12 trials, the risk of an increase in disability, as measured by the EDSS score, lasting at least 12 weeks was reduced by one-third. However, this effect was not seen in a second study.

In February, the NICE appraisal committee announced in their preliminary recommendation that they were “minded not to recommend dimethyl fumarate…” for use in the NHS in England and Wales.

The Committee has asked the manufacturer to provide further evidence of the cost effectiveness of dimethyl fumarate compared with other disease modifying treatments. The MS Trust has reviewed the appraisal documents from NICE and has formally responded to the consultation process. The NICE appraisal committee will meet again on 21 May to review the comments received and further evidence from the manufacturer. NICE expects to publish its final guidance for the NHS later this year.

The SMC still has to determine whether dimethyl fumarate will become available on the NHS in Scotland.

Laquinimod

NICE recommendations generally take effect three months from the date of publication, so neurologists should be able to prescribe teriflunomide from April 2014.

In March, the Scottish Medicines Consortium (SMC) announced that teriflunomide is approved for use by the NHS in Scotland. In Northern Ireland, the Department of Health, Social Services and Public Safety (DHSSPS) has also confirmed that teriflunomide can be prescribed.

The MS Trust book Disease modifying drug therapies has been updated to include teriflunomide.

Dimethyl fumarate (BG-12, Tecfidera)

Laquinimod, a drug which has been in development for relapsing remitting MS, has not been recommended for a licence by European regulators.

The decision was taken by the Committee for Medicinal Products for Human Use (CHMP) which advises the EMA. CHMP concluded that the risk/benefit profile of laquinimod is not favourable at this time. This was based on animal studies which showed a higher occurrence of cancers after long-term exposure to the medicine. The Committee noted that a similar long-term cancer risk could not be excluded in humans. There was also a possible risk, again from animal studies, of effects on the unborn baby when the medicine is taken by pregnant women.

The European Medicines Agency (EMA), the European drug regulator, has granted a licence to dimethyl fumarate (BG-12, Tecfidera) as a first line treatment for relapsing remitting MS.

The manufacturers, Teva and Active Biotech, intend to appeal against this decision.

BG-12 key facts: • Oral tablet taken twice daily • Reduces relapse rate by about a half compared to placebo • Common side effects o Flushing and feeling hot o Gastrointestinal upset - nausea, diarrhoea, abdominal pain • o Headache

Laquinimod key facts: • Oral tablet taken once daily • Reduces relapse rates by about one-quarter compared to placebo • Common side effects o Back, joint and abdominal pain o Increased blood liver enzyme levels o Headache

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Laquinimod has also been shown to reduce disability progression and brain volume loss.

You can order factsheets on alemtuzumab, BG-12 and laquinimod from the back page.

Scope The guideline will cover adults who have a diagnosis of MS or possible MS, or are being investigated for MS. It will not cover children and young people under the age of 18 years.

Key clinical issues that will be covered

Cochrane review: Management of faecal incontinence and constipation in adults with central neurological diseases In January 2014, the Cochrane Library updated its review of managing faecal incontinence and constipation in people with central neurological diseases.

They concluded that there is still remarkably little research on this common and, to patients, very significant issue of bowel management. The available evidence was almost uniformly of low methodological quality.

There was very limited evidence from individual trials in favour of a bulk-forming laxative (psyllium), an isosmotic macrogol laxative, abdominal massage, electrical stimulation, or an anticholinesterase-anticholinergic drug combination (neostigmine-glycopyrrolate) compared to no treatment or controls. There was evidence in favour of transanal irrigation (compared to conservative management), oral carbonated (rather than tap) water and abdominal massage with lifestyle advice (compared to lifestyle advice alone). However, they suggest that these findings need to be confirmed by larger well-designed controlled trials which should include evaluation of the acceptability of the intervention to patients and the effect on their quality of life.

You can read the full review online by going to www. thecochranelibrary.com and searching on “constipation�.

Managing your bowels: a guide for people with MS is available to order from the back page.

The practical guide to bladder and bowel for health professionals is available online at www.mstrust.org. uk/bladder-bowel. It shares the wisdom of experienced MS specialist practitioners. You can send for postcards promoting this resource on the back page.

Review of MS Clinical guideline by NICE In 2003, the National Institute for Clinical Excellence (NICE) published its Clinical guideline 8: Management of multiple sclerosis in primary and secondary care. NICE began the process of reviewing the Guideline in 2011 and the finalised Guideline should be published by the end of 2014.

The Guideline Development Group (GDG) consists of three neurologists, a GP, a physiotherapist, two occupational therapists, two MS specialist nurses, a neuropsychologist and three people who either have MS or have a family member with the condition.

Diagnostic criteria for MS and possible MS including the revised McDonald criteria, diagnostic criteria for neuromyelitis optica and the appropriate investigation for people with clinically isolated syndrome Structured review of people with MS including assessment of their disability and functional problems; the impact of disability and functional problems on carers Information and support for people with MS and their carers including advance decision making and end of life care Modifiable risk factors such as immunisations and pregnancy Non-pharmacological management programmes for fatigue, spasticity, mobility and pain Pharmacological management of fatigue including amantadine, B12 injections and selective serotonin reuptake inhibitors (SSRIs) Pharmacological management of spasticity using baclofen, tizanidine, gabapentin, dantrolene, benzodiazepines, botulinum toxin, pregabalin and Sativex Pharmacological management of mobility with fampridine Management of visual problems including nystagmus Management of ataxia and tremor Management of emotionalism, memory and cognitive impairments including the use of anti-depressants and neuropsychological rehabilitation Appropriate setting for rehabilitation Coordination of care and support including the role of the MS nurse Intravenous versus oral administration of steroids for acute relapse Vitamin D Omega-3 and omega-6 Acupuncture It will not cover the treatment of contractures at joints or the disease modifying treatments. The guideline will cross refer to other relevant NICE appraisals such as those for the DMTs and the management of bladder problems. The assessment will take into account both clinical and cost effectiveness when making recommendations involving a choice between alternative interventions.

Consultation on draft guideline From 29 April 2014, the draft guideline will be available for comments for six weeks. The final guideline should be published in October 2014. You can read more on the NICE website at http://guidance.nice.org.uk/CG/WaveR/115 The MS Trust was involved in the development of the scope of the guideline and will be commenting on the draft guideline.

Scotland NICE’s recommendations apply only in England and Wales.

NHS Quality Improvement Scotland published national standards of care for neurological conditions in October 2009.

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Policy and campaigning

MS nurse support tools update Alice Hamilton and Debbie Quinn In the last issue of Way Ahead the MS Trust reported on some tools in development to meet the challenge of MS specialist nurse posts that are under threat. Since then, working together with three other neurological charities who are also committed to specialist nursing, a web-based resource is under development. The first version of the resource is available on our website www.mstrust.org.uk/ professionals/defending-specialist-nurse-posts/default.jsp and is based around six common threats: despecialisation – where your role may change from being an MS specialist nurse to a neurology specialist nurse downbanding impending vacancy – where a post is coming vacant and there are no plans to fill it redundancy redeployment – eg being asked to work on the wards change of employer – eg where your employer changes from being an NHS Trust to an independent provider.

Each threat presents different challenges and requires a response which is tailored to it. Our resource breaks down the process of responding to a threat into a set of steps that can help you write a case that answers all the relevant points. Bear in mind that this is a work in progress: we are keen to receive your feedback and if you can’t find what you need for your specific challenge, please get in touch.

If your post comes under threat – please let us know, so we can: provide practical support paint a picture of what is happening to MS services in different parts of the country – this may help us identify where we need to concentrate our efforts in the future.

Other policy news Scotland

The Peer Approved Clinical System (PACS) will replace the Individual Patient Treatment Request from May 2014 for medicines not approved for regular use in the NHS. It’s not yet clear what the process for making a PACS request will be. The idea is that local consultants will make the final decision under the Peer Approved System.

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Additionally, the MS Trust and other patient organisations now have a voice in the decision-making process of the Scottish Medicines Consortium. Previously, our only input was to appeal if the SMC came to a negative decision.

Tecfidera was the first MS drug under the new system, where the MS Trust was invited to submit evidence on behalf of people with MS, which we hope will have a bearing on a final positive decision.

Wales

In the autumn, Wales launched a major new strategy Together for health: the neurological conditions delivery plan, which was out for consultation to the end of January.

This was the first major strategy for neurological conditions in Wales in over five years. It proposed the following six themes to improve care for people with all neurological conditions in Wales:

raising awareness of neurological conditions timely diagnosis fast and effective care living with a neurological condition improving information targeting research.

While these themes are sensible, they do not address the need for equity in access to MS services, particularly in rural Wales, and for access to specialised services such as neuropsychological services and neurorehabilitation.

Nor do they even consider issues around prompt access to treatment.

Our response, which can be found at www.mstrust.org.uk/ interactive/mstrust/wp-content/uploads/2014/01/Neurodelivery-plan-2013-MSTrust-response.docx, focused on these two issues. We will keep a watching brief to identify whether the strategy has changed at all by the time it is published.

UK-wide

A new Disability and health employment strategy is promised by the Department for Work and Pensions. If their proposals come to fruition, this would see employers of all sizes able to access a Health and Work Service, similar to Occupational Health Services available from larger employers. There are also proposals for more specialised employment support to help individuals get into, stay in, and progress in work.

www.mstrust.org.uk

Risk communication

Providing effective risk communication to patients Maria Vega Sota, Multiple Sclerosis Therapy Nurse, St George’s Hospital, London; Sarah White, Multiple Sclerosis Clinical Nurse Specialist, St George’s Hospital, London.

Introduction

This article discusses the challenge of providing effective risk communication to patients and reviews the strategies that can help healthcare professionals to explain risks to patients effectively.

Reference is made to how the MS team at St George’s Hospital, London use these strategies when explaining the risk of developing progressive multifocal leukoencephalopathy (PML) to patients considering natalizumab treatment. PML is a serious brain infection caused by the John Cunningham (JC) virus and can lead to severe disability or death1. Therefore, it is important for patients to understand the risks involved before making a decision whether to commence treatment with natalizumab or not.

Importance of communication and patient-centred models in healthcare

Communication is an important aspect in human interaction. As healthcare professionals, it is essential to understand the key role of communication when providing care and supporting patients in their decision-making2.

Communication should be delivered effectively to patients and those who care for them3.

There are different models of communication used in healthcare3. Numerous studies suggest that health professional-patient communication should be patientcentred, whereby patients actively engage in decisionmaking and the management of their care3. Furthermore, evidence from observational studies has shown that patient-centeredness is associated with increased patient trust and greater patient satisfaction4. Using this approach is particularly important when providing risk communication to patients to ensure the patient has the information they need to make an informed decision5.

Risk communication and its challenges

Communicating risk is a challenge that healthcare professionals often experience in their daily practice. It is challenging because information needs to be presented

to patients effectively to enable them to make complex decisions about their care6. According to Ahmed and colleagues7, risk communication is a two-way exchange of information and opinion about the possible harms and benefits of treatments. In other words, communicating risk involves presenting balanced, evidence based data of the risks, harms and benefits associated with a treatment.

Ahmed et al7 also highlight the importance of providing this information in a way that improves patients’ risk perception and understanding, with the aim of promoting the patient’s participation in informed decision-making.

Risk communication involves more than translating evidence based information to patients. Healthcare professionals should consider the patient as an individual and respect patients’ values and preferences in the decision-making process7. It is also important to take into consideration individual factors such as cultural differences, age and education level5, as these factors have been associated with overall perception of risk6.

A growing body of research has shown that numeracy is one of the most common challenges to effective risk communication7. Lipkus and colleagues8 demonstrated that highly educated adults have difficulty with basic numeracy problems. For instance, only 21% could correctly identify 1 in 1000 as being equivalent to 0.1%8.

The patient’s numeracy skills need to be taken into consideration in order to provide numerical information that the patient can comprehend.

In addition, there is evidence that suggests healthcare professionals also experience difficulty interpreting health statistics. Healthcare professionals should, therefore, have a good understanding of statistics enabling them to explain the meaning of the numbers in a way the patient will understand7.

Among patients with multiple sclerosis (MS), numeracy may be affected by cognitive impairment, which can result in misinterpretation of the data presented and lead to misinformed decision-making. Studies have demonstrated that between 45-60% of people with MS have cognitive problems which range from mild to severe impairment9.

The most common areas affected are memory, attention, executive functions, speed of information processing and visual-spatial ability9. Furthermore, patients also have difficulty understanding medical terminology5,10 and do not always ask the healthcare professional for clarification.

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Strategies to improve communicating risk Before having a conversation with the patient to discuss risk, it is important to have gathered all the information needed to enable the patient to make an informed decision. In the case of explaining the risk of PML, the St George’s MS team will have the results of a recent MRI brain scan, the JC virus status of the patient, their clinical history, and in particular details of any immunosuppressant treatment the patient has been exposed to. The team also takes into consideration the patient’s own individual needs, for example the effects of fatigue which may hamper understanding evidence based information9, by choosing the best time of day for the patient to have the conversation.

Several studies have shown that using plain language when communicating risk facilitates patients’ understanding of the information presented10.

Furthermore, the use of everyday language can help patients and relatives to keep actively engaged in the decision-making process. The European Union has suggested the use of a standardised vocabulary such as “very common”, “common”, “uncommon”, “rare” and “very rare” to express an approximate probability level6.

The literature recommends using numerical data to support verbal explanations when communicating risks6.

Paling suggests presenting the numerical risks using a consistent denominator to avoid misinterpretation of the data6. The MS team at St George’s Hospital uses the same denominator (eg 1000) when presenting the risk of PML to patients who are considering natalizumab treatment.

Research has shown that using natural frequencies instead of percentages or probabilities is easier to comprehend and leads to informed decision-making11.

A natural frequency is a joint frequency of two events, for example the number of patients who are JC virus positive on natalizumab treatment who have developed PML11.

Presenting risk information based on patient’s own risk factors is known as personalised risk information7. Using personalised risk information provides a more accurate representation of risk and leads to more informed decision making7. This data can be presented as a numerical estimate of risk. The MS team at St George’s Hospital uses the Risk Stratification Tool1 provided by Biogen Idec to assess the individual estimate risk factors for PML. These are: J C virus exposure indicated by anti-JC virus antibody positive results previous use of immunosuppressant therapy natalizumab treatment duration, especially over 2 years.

If the patient declines to have the JC virus antibody test then the PML risk is presented as a general population based risk estimate.

Using visual aids as a strategy to support the numerical and verbal information help to show the numbers in perspective6. There are different types of graph that can visually illustrate the patient risk. Findings from several studies have shown that pictographs have been more effective in communicating risk than other types of

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graphs10. Literature supports the use of visual aids to maximise patients’ understanding of their risk6, enabling patients to make an informed decision about their care7.

It also helps healthcare professionals to explain risks. The visual aid used by the MS team when communicating PML risk estimation to patients taking natalizumab represents the risk as a frequency showing both those affected by PML and those not1. The pictograph is illustrated in Fig 1.

Fig 1. Paling Palette that illustrates the risk of PML for patients who are JCV positive and have been on natalizumab treatment less than 2 years (Paling Palette created by J Paling)6

JC VIRUS positive patients’ risk of PML

JC VIRUS positive patients’ risk of PML

PML nt with Tysabri your risk of developing At under two years of treatme At under twoand years treatment with of Tysabri your risk of developing PML or more years afteroftwo people) is estimated at 0.7 in 1000 (blue people). green is estimated at 0.7 in 1000 (blue people) and after two or more years of and (blue 1000 a in 5.3 at d treatment your risk is estimate d at 6.1 treatmentyour yourrisk riskisisestimate estimated at in 5.3 in a 1000 (blue and green people).

After four or more years of treatment After four or more years of treatment your risk is estimated at 6.1 in people). purple and green a 1000 (blue,

a 1000 (blue, green and purple people).

Your risk

with Tysabri your risk of developing • At under two years of treatment is the same as 1 in 1,429. which 1000, in At under twowith years of treatment PML is estimated at 0.7 • your risk is with Tysabri your risk of developing Tysabri nt of treatme • After two or more years PML is estimated atas0.7 1000, which is the same as 1 in 1,429.

1 inin189. same the is which 1000, in 5.3 at estimated • After two or more years of treatment with Tysabri your risk is risk is your Tysabri with nt treatme of • After four or more years 164. in estimated at 5.3 in 1000, which is the same as 1 in 189.

1 as which is the same estimated at 6.1 in 1000, • After four or more years ofist treatment with Tysabri your risk is nurse.

MS or neurolog your with test of this You should discuss the result estimated at 6.1 inof1000, which is the ng same as 1 in 164. nt in controlli treatme l benefits They will help you balance the potentia You should discuss the result of this test with your neurologist or MS nurse.

PML. of risk possible relapse against the

3. Leaflet3 TY-PAN-0592b(1).indd

Your risk

They will help you balance the potential benefits of treatment in controlling 09/08/2013 11:55 relapse against the possible risk of PML.

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3. Leaflet3 TY-PAN-0592b(1).indd 3

09/08/2013 11:55

This image is an example of risk communication, it is taken from the leaflet ‘JC virus: a positive test result – what does it mean for me?’ produced on behalf of Biogen Idec Ltd as part of their Risk stratification tool for patients considering whether to commence treatment with natalizumab.

After discussing communication risk with patients, researchers advise you conclude with a summary table to remind patients of the significant data, risks and benefits which may help to decrease the cognitive burden10. It is also important to allow time at the end of the consultation for the patient to ask any questions they may have.

The MS team at St George’s Hospital summarise the information presented to patients by reminding them of the benefit of natalizumab treatment, which aims to reduce the frequency of relapses and disease progression1.

It also summarises the risks of treatment including PML and hypersensitivity reactions. The MS team provides written information based on the patient’s personalised risk of developing PML.

Conclusion Communicating risk is a balanced, evidence based summary of the risks and benefits of treatment enabling patients to make an informed decision about their care.

Healthcare professionals should ensure they have accurate, up to date statistics pertaining to a particular treatment when discussing the risks and benefits of a treatment.

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Using a patient-centred approach will actively engage patients in the decision-making process. Healthcare professionals should consider the individual circumstances of each patient when communicating risk and reassure patients that the team will support them in their decision.

Information news

It is important to identify the barriers to effective risk communication and minimise their effect on patients’ perception of risk. Presenting verbal and written risk information is difficult; therefore it is essential to know which strategies are available to make this task easier for healthcare professionals and patients. Using everyday language, visual aids and personalised risk information helps to facilitate effective risk communication. Although many healthcare professionals have found these strategies useful, they have not been extensively tested7. Hence further research is needed in this field.

The 2014 edition of Disease modifying drug therapy what you need to know is now available.

Disease modifying drug therapy new edition

Disease modifying drug therapy

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what you need to know

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This edition has been updated to include teriflunomide in addition to information on the current beta interferon drugs, glatiramer acetate, natalizumab and fingolimod. It includes a section on consultation tips and questions to ask, to assist people in making the decision to start drug therapies.

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The aim is to provide reliable and unbiased information on the treatment options that are available, to enable people with MS to make a decision in active partnership with their health professionals. People with MS depend on information which can show the benefits and the risks of disease modifying therapies. With the information from this book, and the support of health professionals, it is hoped that people will become better informed about the benefits of these treatments.

Third Edition

Box 1. Summary of key points Use patient-centred model to actively engage patients in decision making.

Risk communication is a two-way exchange of information.

Numeracy skills and health literacy are challenges for patients and healthcare professionals when communicating risk.

Use the same denominator and natural frequencies when presenting numerical data.

Provide personalised risk information if possible.

Plain language and visual aids facilitate patients’ understanding of risk communication.

Respect patients’ own values and treatment decision.

Janice Sykes

There are several more drugs going through licensing and NHS appraisal (see page 2 for an update). The online version of the book will be reviewed and updated regularly as information changes or new options become available.

The aim is to provide information on the drug therapies that are currently available and which may form part of the treatment decision.

New publications leaflet 1. Biogen Idec. Risk stratification tool. Biogen Idec, 2013.

2. Casey A, Wallis A. Effective communication: Principle of Nursing Practice E. Nurs Stand 2011; 25(32): 35-7.

3. Timmins F. Communication skills: revisiting the fundamentals. Nurse Prescribing 2007; 5(9): 395-9.

4. Saha S, Beach MC. The impact of patient-centred communication on patient’s decision making and evaluations of physicians: a randomized study using video vignettes. Patient Educ Couns 2011; 84(3): 386-92.

5. Ghosh AK, Ghosh K. Translating evidence-based information into effective risk communication: current challenges and opportunities. J Lab Clin Med 2005; 145(4): 171-80.

6. Paling J. Strategies to help patients understand risks. BMJ 2003; 327(7417): 7458.

7. Ahmed H, Naik G, Willoughby H, Edwards AG. Communicating risk. BMJ 2012; 344: e3996.

8. Lipkus IM, Samsa G, Rimer BK. General performance on a numeracy scale among highly educated samples. Med Decis Making 2001; 21(1): 37-44.

9. Guimarães J, Sá MJ. Cognitive dysfunction in multiple sclerosis. Front Neurol 2012; 3: 74.

10. Fagerlin A, Zikmund-Fisher B, Ubel PA. Helping patients decide: ten steps to better risk communication. J Natl Cancer Inst 2011; 103(19): 1436-43.

11. Gigerenzer G, The art of risk communication. What are natural frequencies? BMJ 2011; 343: d6386.

Our publication leaflet lists all the resources the MS Trust provides for people with MS. The leaflet has been updated for 2014 to include the bladder and bowel management guides and now includes more information about each resource.

To order copies to give to your patients you can phone 01462 476700, go online, or use the order form on the back page.

Publications

References

For people with MS from the MS Trust 2014

Keep up to date Want to keep abreast of the latest research news? You can sign up to receive an email alert for the MS Trust research update. The email provides links to the latest published research in MS. You can also sign up for our news alerts which cover reports about MS on our news page and in the media.

To register for either alert service go to: www.mstrust.org.uk/about/keep_in_touch.jsp

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Functional neurological symptoms and MS

Mark Edwards, Senior Lecturer and Honorary Consultant Neurologist, Sobell Department for Motor Neuroscience and Movement Disorders, UCL Institute of Neurology, Queen Square, London

Introduction

Functional neurological symptoms can be either motor or sensory in nature and include:

Functional neurological symptoms is the umbrella term for a variety of symptoms of apparent neurological origin which can’t be medically explained, either psychologically or organically, and are not consciously produced by the patient.

Functional neurological symptoms are one of the commonest reasons for referral to neurology outpatients1.

Many patients with functional neurological symptoms do not have neurological disease, but some do: approximately 7% of patients with MS in one study had additional functional neurological symptoms2.

Many terms have been used to describe those with functional neurological symptoms including: hysterical conversion disorder psychogenic non-organic medically unexplained.

Historically, there are influential theories reflected in the terms ‘conversion disorder’ and ‘psychogenic’, that such symptoms result from underlying emotional trauma, but this suggestion is not borne out by epidemiological work.

Patients with functional motor symptoms, for example, do not have much higher rates of childhood traumatic events, recent life events, anxiety and depression than neurological disease controls3-5.

Psychological factors, particularly relating to uncertainty and worry about the presence of neurological disease, are no doubt important for many people with functional symptoms, but they are not the whole story. In addition, the suggestion that such symptoms are ‘psychological’ typically translates for patients and many health professionals that they are ‘not real’ or are unimportant.

One striking feature of those with functional neurological symptoms is that they are commonly triggered by physical precipitating events. Injury and illness (typically selflimiting problems such as migraine or flu) are common events that can trigger symptoms. This may explain the occurrence of such symptoms in those with established neurological disease – known as functional overlay.

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chronic pain speech problems weakness cognitive changes visual changes.

Case history

A 27 year old woman is seen in the relapse clinic of her local MS team. She has an established diagnosis of relapsing remitting MS, supported by three clinically typical episodes of neurological dysfunction, an abnormal MRI scan of the brain and positive oligoclonal bands in her CSF. She reports that a few days previously she developed a migrainous headache (she is a migraine sufferer) and then had an attack of shaking and muscle spasm affecting the left side of her body (the side involved in a previous relapse and with some slight residual weakness). After the attack of shaking she developed profound weakness of the left leg.

Intermittently since then she has experienced shaking and spasm of the leg.

On examination she had an intermittent tremor of the leg. She walked dragging her left leg behind her.

She was unable to generate any power in the left leg when asked to. However, when performing right hip flexion she generated full power of left hip extension (Hoover’s sign). During an episode of shaking of the left leg she was asked to perform foot taps with the other foot in time to a rhythm set by the examiner.

This caused the tremor of the left leg to stop.

The above case history illustrates a number of positive clinical features of functional neurological symptoms.

The patient has a dragging gait, different from the typical ‘circumducting’ gait of people with organic hemiplegia where the affected leg is swung out to the side when walking. She has a positive Hoover’s sign, a sign with very high sensitivity and specificity for functional weakness.

She has a distractible tremor. In addition the clinical picture is incongruent with basic physiology (intermittent tremor, the presence of tremor in a profoundly weak leg), and is atypical for MS relapse.

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Diagnosing functional symptoms

Treatment of functional symptoms

Diagnosis should be, wherever possible, based on the presence of positive clinical features. This is easiest in those with motor symptoms where distraction of attention away from movement, or accessing movement in a more implicit automatic fashion (as in Hoover’s sign), can reveal normal movement is possible. In those with sensory symptoms it is more difficult, but sometimes such symptoms break fundamental rules about neuroanatomy and physiology, for example tubular visual field defects where the size of the field defect is the same close to and far away from the patient which breaks the laws of optics.

There is, unfortunately, very little consensus on treatment of those with functional symptoms. Effective communication of the diagnosis is clearly of great importance, and some patients recover spontaneously requiring little else in terms of treatment.

It is often reasonable to perform additional investigations, especially in those with co-existing neurological disease, but ideally these should be done in one go and put in the right context before they are performed:

“I expect these tests will be normal, but we are just going to make sure that there is no evidence that your MS is active at the moment.”

Communicating the diagnosis This step is probably the most important in allowing the patient to move forward to effective treatment, but is acknowledged by many health professionals to be something they find very challenging. Some general guidance is:

In general, a broad rehabilitation approach to symptoms is most effective. Triggering factors should be treated, including neurological illness, addressing fatigue, controlling pain. For those with prominent psychological triggers such as anxiety, depression or stressors, a cognitive behavioural or psychotherapeutic approach can help, particularly if one can access help from psychologists with a specific understanding of functional neurological symptoms7. Medication can help for some patients, including anti-depressants.

For those with motor symptoms, physiotherapy with a physiotherapist who has an interest in treatment of those with functional symptoms can be very effective8. This therapy is based on re-accessing automatic movement and avoiding attention towards movement. However, as with psychological input, it can sometimes be difficult to find a therapist with a specific interest and experience.

1. Reach a stage where you are confident in the diagnosis based on positive clinical signs, and if you can’t do this refer them on

For those with severe ongoing symptoms, inpatient rehabilitation can be the best option, and there are a few specialist programs around the UK offering such treatment, though often with long waiting lists. General neurorehabilitation units will also sometimes offer admission for such patients providing the diagnosis has been made clearly and clear goals can be established for the admission.

2. Tell the patient what they have: “You have a functional weakness.”

Conclusion

3. Tell the patient what they don’t have: “I’m confident this is not due to your MS playing up.”

4. Give the diagnosis credibility: “This is a very common problem that many people with MS have.”

5. Show them how you have made the diagnosis6: “Do you see how when you raise up your good leg, your weak leg pushes down strongly. This shows me that the basic wiring to move your leg is working, it is just that you are having trouble accessing it.”

6. Emphasise reversibility: “This is good news, because it means that we should be able to help you get back in control of your leg.”

7. Explore triggering factors: “Sometimes these symptoms are triggered by physical events like migraine, fatigue or injury...sometimes more psychological factors seem to be important like stress, anxiety or difficult events in peoples’ lives – do you think that has any relevance to you?”

Functional overlay is a common situation for patients with neurological disease, including MS. The key is early positive diagnosis and effective communication of the diagnosis to the patient and other health professionals.

An over-reliance on simplistic models for functional symptoms based on ‘stress’ can hinder this process.

Evidence regarding treatment is limited, but many patients do improve with a broad rehabilitation approach once the diagnosis has been communicated effectively.

References 1. Stone J, Carson A, Duncan R, et al. Who is referred to neurology clinics?--the diagnoses made in 3781 new patients. Clin Neurol Neurosurg 2010; 112(9): 74751.

2. Stone J, Carson A, Duncan R, et al. Which neurological diseases are most likely to be associated with “symptoms unexplained by organic disease”. J Neurol 2012; 259(1): 33-8.

3. Kranick S, Ekanayake V, Martinez V, et al. Psychopathology and psychogenic movement disorders. Mov Disord 2011; 26(10): 1844-50.

4. Stone J, Edwards MJ. How “psychogenic” are psychogenic movement disorders? Mov Disord 2011; 26(10): 1787-8.

5. Edwards MJ, Fotopoulou A, Pareés I. The neurobiology of functional (psychogenic) movement disorders. Curr Opinion Neurol 2013; 26(4): 442-7.

8. Direct patients to good sources of information, for example www.neurosymptoms.org

6. Stone J, Edwards M. Trick or treat? Showing patients with functional (psychogenic) motor symptoms their physical signs. Neurology 2012; 79(3): 2824.

9. Generate a management plan based on the nature of the patient’s symptoms and any relevant triggering factors

7. Sharpe M, Walker J, Williams C, et al. Guided self-help for functional (psychogenic) symptoms: a randomized controlled efficacy trial. Neurology 2011; 77(6): 564-72.

10. Copy the letter with the diagnosis and explanation to the patient, as well as all those involved in care of the patient.

8. Nielsen G, Stone J, Edwards MJ. Physiotherapy for functional (psychogenic) motor symptoms: a systematic review. J Psychosom Res 2013; 75(2): 93-102.

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Do you hear what your patient is telling you?

Understanding the meaning behind the narrative Andrew Soundy, University of Birmingham; Carolyn Roskell, University of Birmingham; Brendon Stubbs, University of Greenwich; Johnathan Collett, Oxford Brookes University; Helen Dawes, Oxford Brookes University; Brett Smith, Loughborough University

Introduction Illness narratives are the stories of health and illness, and their effect on an individual’s life. Typically they are the story of the person with the condition, but they can include the narratives of relatives about the effects the illness has had on their own life and their relationship with the person who is ill1.

For the patient, illness narratives provide a way of attaching meaning to their experience of illness. The need to tell others our stories is part of the human need to be understood2. There is therapeutic value in telling your story and being heard by someone else. It allows the teller to be accepted and valued, but it also provides them with an opportunity to express and (re)consider how they view their own illness. It also lets the individual identify and clarify the meaning their illness has to them, with the potential for revising the meaning. Illness narratives are continually revised and reordered as the individual expresses biographical revisions to their life3.

Patients frequently share their illness narratives with physiotherapists. Valuing and listening to a patient’s story can directly impact on all aspects of the rehabilitation process; for instance without feeling valued by the physiotherapist, a patient may become non-compliant, concealing important details about themselves, who they are and why their goals are important. Ultimately a patient who feels devalued may feel disillusioned by the service and reject it.

Listening to different illness narratives also has great value for healthcare professionals as they provide an insight into the different ways that individuals adjust to illness, highlighting important psychological distinctions around adjustment, hope and coping with an illness. Illness narratives are often shared in practice by physiotherapists; they represent a currency for inter-professional and patient-professional communication4.

Illness narratives within neurological physiotherapy Neurological physiotherapy may value certain types of patient narratives or stories over others due to time pressures, the cultural acceptance of different narratives, or the perceived purpose of the narrative within the rehabilitation process5. This has the potential to create a

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culture of reduced empathy6 where the importance of listening to patients is undervalued. This can be particularly problematic if the physiotherapist has a limited understanding of why it is important to hear, acknowledge and value a certain narrative, and can mean that the patient is not truly heard. Thus, there is a need for neurological physiotherapists to become competent with illness narratives so they can improve the quality of their interactions with patients.

A narrative-competent physiotherapist is a practitioner who can recognise the structure of a story, consider different and possible endings, and value the stories for their content – especially those that are difficult to tell4.

Illness narratives for patients Illness narratives are a way to express loss and to come to terms with events. In the neurological rehabilitation setting, patients simultaneously express loss whilst considering the possibilities for the future. The physiotherapist can act as a guide to this process, supporting loss and identifying limits, asking questions and making suggestions that can affect the patients’ view or story, particularly through the use of goal setting7. This process often takes place when a patient is vulnerable, if the interaction is of poor quality it can have a lasting and negative influence on the patient8.

Indeed when patients don’t feel valued, or heard, their ability to heal psychologically is likely to be limited.

Narrative types and a narrative typology Regardless of the content, research has shown that patients’ stories are structured with elements that conform to a common framework, these are referred to as ‘master plots’9 or ‘macro-structures’. Different types of narratives can be used, or offered, in clinical practice to help patients and physiotherapists alike. They can act as a bridge to engage the patient with the rehabilitation service. Some narratives enable the teller to embrace the present and future situations. Others allow them to express loss and be reconciled with their past identity. An awareness of the meaning of different narrative types can be beneficial for physiotherapists. Research has identified that illness narratives can be associated together by hope, adjustment, and identity in time8. By taking a pre-existing typology of narratives8, a table has been created that identifies the strengths, dangers and important characteristics of the different narrative types in order to help physiotherapists use narratives within the rehabilitation setting.

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A complete table describing the 13 different narrative types, their characteristics and the dangers and strengths associated with them is available with the online version of this article: www.mstrust.org.uk/professionals/ information/wayahead/ A few examples are shown below.

Narrative type

Definition

Characteristics that relate to time, hope and adjustment

Dangers

Strengths

Restitution

Expressed as a desire to be restored back to a previous state of health and identity.

Hope - Concrete hope of being restored.

Reliance on medicine.

The belief of being restored influences engagement in therapy.

Adjustment - Possible denial of reality and inability to accept the situation.

The patient defies the situation in a similar way ie. through the denial of it.

Limited ability to consider alternative future scenarios.

Identity in time - Located in the future and denies the present identity.

Comic

Comedy provides the patient with an opportunity to observe illness in a different light.

Hope - There may be a lack of hope or a realistic hope.

It may be culturally sensitive.

Allows the patient to view the illness differently.

Adjustment - It may represent an acceptance of what has happened by an expression of defiance through mocking the illness or situation.

The patient may repress their desire to get well.

It can represent a means of coping with the situation.

Patient becomes a victim of the illness.

A chance to express loss and begin a process of healing.

Identity in time - It recognises the present identity and compares to the past or future identity.

Tragedy

The tragic narrative illustrates an overwhelming or inevitable outcome with an inability to overcome the situation.

Hope - Little hope or a loss of hope.

Adjustment - Acceptance is identified but defiance is recognised as not possible.

Identity in time - This narrative focuses on the change and loss of identity from the past. There is an acknowledgement of the present identity.

The changing narrative – a case study Different illness narratives can emerge across time, either because something critical occurs in the patients’ life which strikes at the heart of their identity causing a ‘fracture’ in their narrative, or simply because, as part of the process of living with a long-term condition, the individual re-evaluates how they view their illness. More than one narrative type can co-exist at any one time.

The following case study, which has been reported previously10, provides an example of how the narrative type can change over the course of the life of an individual who has lived with MS for a considerable time as they look back at their experience.

Lynn, a retired single female, was 61 at the time she was interviewed. 27 years after being diagnosed with relapsing remitting MS, of which she had been in remission for 17 years, Lynn transitioned into secondary progressive MS following a car accident.

These events acted as a fracture in her narrative, a point in time where she viewed the MS had taken control as her condition became one of steady deterioration. MS struck at her identity of herself as a physical person with a strong athletic identity, which directly affected her sense of self.

There is limited ability to engage physically with rehabilitation.

Adjustment Initially Lynn told both a restitution narrative and heroic narrative. She wanted to be restored and this defiance was never lost:

“Early on (during the relapsing remitting stage) I just wanted to get better, and I did.”

However, the loss was eventually acknowledged, although this took a great deal of time. During the interview it was clear that Lynn could accept what had happened with a detached and objective view of illness, which was tinged with chronic sorrow:

“I was in denial of secondary progressive MS for about three years… I didn’t want to think I was secondary progressive because that was too awful…

I knew it was slow disintegration.”

“It’s just been steady downhill. Yes it has taken 10 years, but I’ve not been doing in those 10 years what I wanted to do.”

Lynn also acknowledged the loss of control, but at the same time battles against it:

“I don’t feel I have very much control and it’s got less as the disease has progressed, the control gets less.”

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“I accept, I know it happened. I rail against it all the time, there’s not a minute of the day that goes by that I don’t want to change it… I just want to have control back again, I want to be able to walk. I want to be able to get up in the morning and run down the stairs.”

Identity Lynn had a strong athletic identity, and so the effect of transitioning to secondary progressive MS was a devastating tragedy:

“I’m a very physical person…it affects me totally…

I mean I was a gymnast, I was a runner… nothing else takes the place of it, no matter what else you try.”

“If you’re a couch potato to start with… there will be problems but it won’t be so devastating.”

Hope Lynn identified that she had no hope of improvement in the future, but showed defiance against the illness.

Implicitly she is telling a heroic narrative, even though she recognises it is a lost battle. She identifies the narrative fracture point as the car accident:

“You’re just working hard to stand still or get worse, because it’s progressive… it’s all downhill… so you just use up a lot of effort to get somewhere that you don’t want to be.”

“I had a car accident and I went into secondary progressive… there’s just nothing that has taken me out of that… before that one day I was normal and the next I was dragging my foot… then I started to have bladder problems and all the other problems.”

The different narrative typologies illustrate the wide variation in stories individuals with a neurological disorder may tell. Within the rehabilitation setting, there may be more fluctuations or changes to stories initially, or they may come later as the patient comes to terms with what has happened. The neurological physiotherapist needs to recognise this, as they are in a prime position to influence the narrative in the future.

There may be a core set of illness narratives that embrace the future and, as part of this embracement, welcome rehabilitation. At the same time there may be other narratives that focus on loss, or reconciliation with the past, and these narrative types may mean the patient has a reduced capacity to consider and engage in rehabilitation. When a narrative appears less useful for rehabilitation, it is still important that the physiotherapist is able to listen and value the story.

By offering and sharing stories, the physiotherapist is able to influence how a patient adjusts to their illness and how they respond to the challenge of their situation.

By offering alternative narratives the physiotherapist can create the conditions that allow the individual to change.

This is because the patient’s narrative represents their position regarding adjustment, as well as their hope and expectations - or lack of. Thus, the sharing of stories can mean a great deal. Rather than being the ‘director’ of a patient’s story, physiotherapists need to become the coauthor and have a shared knowledge of what it is like to live with a neurological condition11.

Summary

Location in time Due to her time spent with the condition, Lynn is able to look at the past, present and future. She acknowledges a sense of loss, a past time when she could retain a sense of her physical/athletic identity. Looking at the present and future she understands the disease course and the probable outcome. The following is a summary of Lynn’s narrative types in relation to her disease course and the location in time:

MS

Discussion

In summary, by sharing, listening and valuing different narratives, neurological physiotherapists are able to assist their patients’ psychological recovery alongside their physical recovery.

Relapsing remitting

TIME

Secondary progressive

Fracture point

Restitution NARRATIVE TYPE

Detached

Heroic

Tragedy

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Present and known future

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References 1. Hydén L-C. Illness narrative. In Ritzer G, editor. Blackwell Encyclopedia of Sociology. Cambridge: Blackwell; 2007.

2. Mattingley C. Healing dramas and clinical plots: the narrative of experience.

Cambridge: Cambridge University Press; 1998.

3. Williams B, Corlettt J, Dowell S, et al. I’ve never not had it so I don’t really know what it’s like not to: nondifference and biographical disruption among children and young people with cystic fibrosis. Qual Health Res 2009; 19(10): 1443-55.

4. Alcauskas M, Charon R. Right brain: reading, writing and reflecting: making a case for narrative medicine in neurology. Neurology 2008; 70(11): 891-4.

5. Soundy A, Smith B, Butler M, et al. A qualitative study in neurological physiotherapy and hope: beyond physical improvement. Physiother Theory Pract 2010; 26(2): 79-88.

6. Soundy A, Smith B, Cressy F, Webb L. The experience of spinal cord injury: using Frank’s narrative type to enhance physiotherapy undergraduates’ understanding. Physiotherapy 2010; 96(1): 52-8.

7. Rosewilliam S, Roskell CA, Pandyan AD. A systematic review and synthesis of the quantitative and qualitative evidence behind patient-centred goal setting in stroke rehabilitation. Clin Rehabil 2011; 25(6): 501-14.

8. Soundy A, Smith B, Dawes H, et al. Patients expression of hope and illness narratives in three neurological conditions: a meta-ethnography. Health Psychol Rev 2013; 7(2): 177-201.

9. Paley J. Narrative machinery. In: Oliviere YCD, editor. Narrative stories in health care: illness, dying and bereavement. Oxford: Oxford University Press; 2009.

10. Soundy A, Benson J, Dawes H, et al. Understanding hope in patients with multiple sclerosis. Physiotherapy 2012; 98(4): 344-50.

11. Engel JD, Zarconi J, Pethel LL, Missimi SA. Narrative in health care: healing patients, practitioners, profession and community. London: Ratcliffe Publishing; 2008.

Using narratives in nursing practice Lou Jarrett, Multiple Sclerosis Clinical Nurse Specialist, Royal Devon and Exeter Hospital, NHS Foundation Trust, Devon ‘Stories are as ubiquitous as water or air, and as essential.

There is not a single person who is not touched by the silent presence of stories.’1.

We live storied lives. Nursing and medicine traditionally use oral stories to share information about the people they are caring for. Using narrative in my practice and lectures allows me to share with others the nuances of individual practice that often go unrecorded, and as such are not viewed as important. Yet it is often these aspects of care that make the difference to people and are at the heart of compassionate practice.

Narrative is a form of research that sits alongside qualitative and quantitative methods and as such uses different methodologies and analysis2. I have researched my own practice3,4 using guided reflection as a process of self inquiry and transformation5. This methodology has two defining methodological issues; the text is left whole rather than themes elicited. This preserves the context and allows a holistic reading of the situation. Secondly outcomes are not generalizable, but the aim is that the text will resonate with the reader or listener, they will reflect on their own practice and ultimately consider if they need, or want, to change their own practice. Resonance can be described as, a striking, moving experience that is deeply apprehended, the ‘felt effect’ by a reader when reading a text or ‘the sudden perception or intuitive grasp of the life meaning of something’6.

To promote resonance the challenge for narrative writers is to provide a text that is engaging and understandable to the reader or listener. This requires a text to be authentic and coherent. This often involves writing rich descriptions of events, editing and carefully shaping the text so that the meaning can be shared. Narrative aims to ‘show’ meaning rather than to ‘tell’ or list recommendations.

There can be concern about individuals in texts being identifiable. Care needs to be taken to promote confidentiality, this can involve discussing the content with those involved, identifying their wishes about identification and gaining their agreement for publication. Commonly characters in narratives are fictionalised, yet the insights, the meaning is left intact: ‘Real stories are about actual people. True stories reflect real life situations that people encounter’7. In the words of Fairbairn7 narrative aims to create true as opposed to real stories.

When constructing narrative my insights are by their nature always tentative. Through guided reflection I have tested and refined my insights, they have evolved and continue to do so. I view knowledge as always unfolding.

My intent when sharing sections of narrative is not to prompt people to grasp at my understanding as concrete, but for my texts to resonate with their experiences which may prompt their own interpretations.

When planning for the recent MS Trust study days on end of life, the steering group wanted to provide resources for attendees to review before they came on the day. The aim was to set the scene and to help the attendees focus their thoughts. From my research I provided an audio recording of a section of narrative www.mstrust.org.uk/ wayahead/using-narratives. Attendees on the study day fed back that it had made them think about their practice.

One person shared that it was so powerful to listen to, but also so familiar, and it helped her to realise the importance of the small things we do such as ensuring someone is comfortable in bed.

There is great skill and knowledge in the human encounters that we, as nurses and other practitioners working with people with MS, are involved in each day. At its simplest level narrative helps us to see and value what we do.

References 1. Okri B. A way of being free. London: Phoenix; 2007.

2. Holloway I, Freshwater D. Narrative Research in Nursing. Oxford: Blackwell Publishing; 2007.

3. Jarrett L. Being and becoming a nurse specialist in spasticity management.

Unpublished PhD thesis: City University: London; 2009.

4. Jarrett, L. From significance to insights. In: Delmar C, Johns C, editors. The good, the wise and the right clinical nursing practice. Denmark: Aalborg Hospital, Arhus University Hospital; 2008. p.59-73.

5. Johns C. Becoming a reflective practitioner. 3rd ed. Oxford: Wiley-Blackwell; 2009.

6. van Manen M. From meaning to method. Qual Health Res 2007; 7(3): 345-69.

7. Fairbairn G. Ethics, empathy and storytelling in professional development. Learn Health Soc Care 2002; 1(1):22-32.

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Supporting the MS Trust

MS won’t stop me

Get involved

Hannah Mark from Tyne and Wear took on the Tough Mudder challenge last September and, encouraged by her MS nurse, raised over £1,000 for the MS Trust.

Hannah tells us how she got through the challenge.

We have lots of great fundraising events coming up for you to get involved with, here are just a few:

Tough Mudder is a 10-12 mile long military assault course, with obstacles designed to push you to your limits. My bootcamp instructor, Tanya, approached me one cold and wet November evening and said, “Do you fancy doing it with me?” When my MS nurse Barbara suggested I could do it to raise money for the MS Trust, I was in!

A great day out for the whole family on 18 May at the famous motor circuit in West Sussex www.mstrust.org.uk/goodwood

The training was hard, but with the support of my team mates, Tanya and my partner Paul, I was able to keep going. Before we knew it the event came around and we were standing on the starting line. Looking over at the side-lines and seeing my Dad and our friends, I knew there was no going back.

DIFC Super Hero Run

Fancy dress 5K or 10K fun run in London’s Regent’s Park on 18 May www.mstrust.org.uk/superhero

Jump in June

Shake off the cobwebs with an exhilarating tandem skydive at an airfield near you! www.mstrust.org.uk/jump

London to Paris Cycle Ride

Paul, Hannah and Tanya after the Tough Mudder

Each obstacle we came to was worse than the last, and seeing the three mile mark I was sure we had gone much further. Tough Mudder promotes such camaraderie between participants and having this support certainly helped, after all, no Mudder is left behind.

I think the most memorable part was when a lady ran up to me and said “You don’t know me, but can I give you a hug?” She was a consultant neurologist at one of the hospitals local to where I live. She couldn’t believe that as someone with MS I was doing such a challenge, and she knew how much the money would directly help people.

After that there was no way I was backing out.

After what I believe was 11.5 miles, it’s all a bit hazy, we crossed the finishing line! Without a doubt it was my biggest achievement and a huge reminder to myself that although I may have MS, it won’t stop me from doing anything.

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MS Circuit Challenge at Goodwood

Classic cycle challenge connecting two stylish capital cities. Various dates available between June and September www.mstrust.org.uk/londontoparis

British 10K London Run

Wear your MS Trust T-shirt with pride and run 10K through the streets of London on 13 July www.mstrust.org.uk/british10k

Prudential RideLondon - Surrey 100 Cycle 100 miles along closed roads on 10 August, following a route from the London 2012 Olympics www.mstrust.org.uk/ridelondon

Bupa Great North Run

Run the famous 13.1 miles from Newcastle to the coast at South Shields on 7 September www.mstrust.org.uk/greatnorth To find out more about supporting the work of the MS Trust call 01462 476707 or visit www.mstrust.org.uk/fundraising

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Professional development

Rehabilitation in MS Conference, 2014

MS Trust Annual Conference 9 -11 November, 2014 Kenilworth, Warwickshire

6-7 June, 2014 Brighton

Don’t miss this flagship event for:

The RIMS 2014 annual conference will be held in the UK in Brighton on 6 – 7 June 2014, in partnership with the MS Trust and University College London Hospitals.

This year’s conference theme is “Supporting behaviour change, linking science to clinical practice”. The conference offers an opportunity for delegates to learn, share best practice, network, and hear key clinical and opinion leaders in multiple sclerosis from Europe and beyond.

Topics include: Adjustment, acceptance and adherence Resistance to change Impact of cognition on behaviour change Fatigue management Behaviour change and the family Community exercise programmes for people with MS Current research themes in MS rehabilitation.

Rehabilitation in MS is a vital element of care across the whole of the disease trajectory and relies on a multidisciplinary approach. The programme is aimed at health and social care professionals, academics and students interested in rehabilitation in MS.

Special event at RIMS 2014

MS Masterclass at the National Hospital for Neurology and Neurosurgery 5 June, 2014 - London A unique opportunity is available to a limited number of RIMS delegates to attend a comprehensive programme of MS Masterclasses run by the MS team at the National Hospital for Neurology and Neurosurgery at Queen Square, London. This is one of the premiere MS services internationally, a hub of innovation and an academic research centre leading the development of new treatments and interventions for multiple sclerosis at all stages of the disease. The Masterclass is only £50 and spaces are limited so book early!

MS specialist nurses and MS specialist therapists Hospital or community based nurses who care for people with MS Allied health professionals with an interest in MS, neurology or rehabilitation Students Researchers GPs. Topics for 2014 include: Paediatric MS Law and ethics of advance care planning Posture and positioning Cognition Bladder and bowel problems in MS. Keynote plenary speakers include: Professor Dawn Langdon, Royal Holloway University of London Dr Dana Horakova, University Hospital Prague, Czech Republic Dr Evangeline Wassmer, Birmingham Children’s Hospital Dr Paul Molyneux, West Suffolk Hospital NHS Trust.

The MS Trust administers professional development bursaries of up to 75% for health professionals who are working in a clinical role with people with MS. This means that, with a bursary, the cost would be less than £150 (plus VAT), which is great value for a three day residential conference. Further details on how to apply can be found on the MS Trust website.

The conference website www.mstrust.org.uk/conference will go live during April. You will be able to book your place online and find the most up-to-date programme and poster submission information on the website.

For more information and to book your place, for the conference and masterclass go to www.rims2014.org

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Study Days MS Study Day in partnership with Hobbs Rehabilitation 15 May, 2014 - Berkshire | £65+ VAT, including lunch A study day for any health or social care professional with an interest in MS. Topics include: Diagnosis of MS and latest drug management Management of spasticity The importance of standing and positioning for people with severe MS Medical management of pain for people with MS Fatigue management in MS Ataxia.

MS Study Day in partnership with Association of Chartered Physiotherapists in Neurology (ACPIN) 17 September, 2014 - Leeds | £55 + VAT for ACPIN members, £65 + VAT for non-members, including lunch Following the success of a number of joint study days with other ACPIN regions, the MS Trust is now planning an MS study day in Yorkshire. Make a note of the date in your calendar – further details will follow in the next edition of Way Ahead and on the MS Trust website www.mstrust. org.uk/studydays Masterclass on sexual dysfunction in people with MS and other neurological disorders 29 September, 2014 - National Hospital for Neurology and Neurosurgery, London We are delighted to be working with Dr. Jalesh Panicker and Collette Haslam from the National Hospital to organise a masterclass on sexual dysfunction. Gila Bronner who is an expert in MS-related sexual dysfunction from the Sexual Medicine Center in Israel has agreed to speak.

Topics include: Neurology of sexual function and dysfunction following neurological disease An andrologist’s perspective of sexual dysfunction A gynaecologist’s perspective of sexual dysfunction Practical management of sexual dysfunction in neurological patients Involving the partner.

Publications For a complete listing of all our publications and factsheets visit our website at www.mstrust.org.uk

Publications for health and social care professionals MS information for health and social care professionals 4th EDITION Spasticity care pathway

Publications for people with MS – (a sample) Managing your bladder: a guide for people with MS Managing your bowels: a guide for people with MS Disease modifying drug therapy REVISED Publications leaflet 2014 NEW

Postcards At work with MS

Posture Practical guide: to bladder and bowel in MS StayingActive StayingSmart

Factsheets – (a sample)

Alemtuzumab

BG-12

Laquinimod Cognition REVISED Diet REVISED Pregnancy and parenthood REVISED All items are free, but if you would like to make a donation towards our costs, we would be very grateful.

I enclose a cheque made payable to the MS Trust I want 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. Date:___/____/____ Signed_____________________ I confirm that I will pay an amount of Income Tax and/or Capital Gains Tax in each tax year (6th April to 5th April) that is at least equal to the amount of tax that all the charities or CASCs that I donate to will reclaim on my gifts for that tax year. I understand that other taxes such as VAT and Council Tax do not qualify. I understand the charity will reclaim 25p of tax on every £1 that I give on or after 6 April 2008. Please notify us if you change your name or address.

Name Job title

To register your interest in this meeting please contact the education team education@mstrust.org.uk

Address

Development of MS care and management for specialists 6-10 October, 2014 – Hitchin, Hertfordshire A week-long residential course for new in post MS specialists and other health professionals who specialise in supporting people with MS. This is the essential foundation level course for MS practitioners, run by the MS Trust and accredited by Birmingham City University.

Telephone number

MS specialist nurses can receive a fully funded place on the course and bursaries are available for Allied Health Professionals. For more information contact Delia Britter: delia.britter@mstrust.org.uk

Postcode

I am happy to be contacted by email:

email address Return to: MS Trust, Spirella Building, Letchworth Garden City, Herts, SG6 4ET The MS Trust will use your details: to keep you informed about our work, including our fundraising to pass to our wholly owned subsidiary companies MS Trust (Education) Ltd and MS Trust (Trading) Ltd which exist only to carry out our educational objectives and to raise funds for the MS Trust.

We will not sell or pass your details to anyone else (unless we are required to by law). If you object to either use of your details, please let us know.

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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