April 2012 October 2014
Volume 18 Part 4
ISSN 1466-559X
Anticipation builds for the new MS Clinical Guideline As we prepared this edition of Way Ahead for the printers, we were still awaiting publication of the new Clinical Guideline Multiple sclerosis: management of multiple sclerosis in primary and secondary care, which will replace the 2003 version. Expectations about the new NICE Guideline have been running high within the MS community and many have been looking forward to an updated document to support the continued development of MS services. Based on what we have seen in drafts of the Guideline, we suspect the reality may fall short of that. When you read this, we hope you will check the MS Trust website to see if the Guideline has been published and what it says. As you work your way through the document, we would encourage you to ask the following questions:
Inside this issue... Mindfulness for MS 8-9
Auditing services
10-11
Experiences of MS services
12-14
Does the Guideline help clarify what a high quality MS service should include and the principles that should guide its delivery? Does the Guideline encourage a holistic approach to care, focusing on multidisciplinary assessment which considers both pharmacological and nonpharmacological options for managing symptoms? Does the Guideline support access to symptomatic treatments that will help people with MS stay active, engaged and independent? Does the Guideline support the need for people with MS to have access to care from MS neurologists, MS specialist nurses and neuro-rehabilitation services including physiotherapists and occupational therapists? Does the Guideline recognise the importance of accurate, independent information to help people with MS make the choices that are right for them? Does the Guideline define best practice in the management of common problems in MS, such as relapses, bladder and bowel dysfunction, problems with cognition, spasticity, ataxia and fatigue? If you gave the Guideline to a service manager or commissioner, would it help them to configure and fund a service that would deliver the best outcomes for people with MS? If you gave the Guideline to a colleague new to MS would they find it a comprehensive resource to help them deliver high quality care? The MS Trust believes that to help improve evidence-based care for people with MS the Guideline will need ‘YES’ responses to most of these questions and we hope this will be the case. In the next issue of Way Ahead we will include an analysis of the Guideline and seek the views of MS health professionals on how it measures up.
www.mstrust.org.uk Call: 01462 476700
Also inside: Research news
2-3
Information news
4-6
Policy and campaigning
7
Professional 15 development Supporting the 16 MS Trust
Research news: availability of new disease modifying therapies Peginterferon beta 1a (Plegridy)
Dimethyl fumarate (BG-12, Tecfidera) NICE has recommended dimethyl fumarate as a treatment for adults with active relapsing remitting multiple sclerosis (RRMS), providing they do not have highly active RRMS or rapidly evolving severe RRMS. NICE issued the final guidance on 27 August, their recommendations are normally effective three months from the date of publication, so neurologists should be able to prescribe dimethyl fumarate from late November 2014. Dimethyl fumarate was approved for NHS treatment in Scotland in April.
Definitions:
Active RRMS - normally defined as two clinically significant relapses in the previous two years. Highly active RRMS (HA) - defined as the same relapse rate, or an increased rate of relapses, despite being on another disease modifying treatment for at least a year. Rapidly evolving severe RRMS (RES) - two or more disabling relapses in one year with signs of increasing or new lesions between two consecutive MRIs.
Peginterferon beta 1a, a new treatment for relapsing remitting MS (RRMS), has been licensed by the European Commission. This is a new treatment, formed by adding polyethylene glycol to interferon beta 1a (Avonex) to make the drug remain longer in the body. As a result, peginterferon beta 1a is injected once every two weeks rather than the more frequent injections required with the interferon beta drugs. Clinical trials have shown that peginterferon beta 1a has a similar effect to interferon beta 1a, reducing the relapse rate by about a third compared to placebo. The side effects of the new drug are also similar, with some people experiencing redness at injection sites and flu-like symptoms. The approval by the EU confirms the recommendation made in May by the Committee for Medicinal Products for Human Use (CHMP), part of the European Medicines Agency. Before the drug becomes available in the UK it will need to be assessed by NICE, the Scottish Medicines Consortium (SMC) and the regulatory bodies for Wales and Northern Ireland.
DMTs at a glance With 11 DMTs now licensed for relapsing remitting MS, the prescribing situation is becoming increasingly complicated. The following table summarises how each of the DMTs are administered, their relative activity, who is eligible for treatment and their current availability on the NHS. Drug name
↓ relapse Administration v placebo*
Eligibility
NHS availability
Interferon beta 1a (Avonex)
im – once per week
30%
ABN guidelines 2001
Yes – UK-wide
Interferon beta 1a (Rebif)
sc – three times per week
30%
ABN guidelines 2001
Yes – UK-wide
Peginterferon beta 1a (Plegridy)
sc – every two weeks
30%
Not NICE or SMC approved No – not NICE or SMC approved
Interferon beta 1b (Betaferon)
sc – every other day
30%
ABN guidelines 2001
Yes – UK-wide
Interferon beta 1b (Extavia)
sc – every other day
30%
ABN guidelines 2001
Yes – UK-wide
Glatiramer acetate (Copaxone)
sc – every day
30%
ABN guidelines 2001
Yes – UK-wide
Teriflunomide (Aubagio)
Oral – one tablet per day
30%
Active RRMS (not HA or RES)
Yes – UK-wide
Dimethyl fumarate (Tecfidera)
Oral – two tablets per day
50% England, Wales NI: not HA or RES Scotland: Active RRMS
Yes – UK-wide (England from Nov 2014)
Fingolimod (Gilenya)
Oral – one tablet per day
50% England: HA after IFN beta, GA or natalizumab Scotland, Wales, NI: HA after IFN beta
Yes – UK-wide
Natalizumab (Tysabri)
IV infusion – monthly
Alemtuzumab (Lemtrada) IV infusion – year 1: on five consecutive days; year 2: on three consecutive days. (Further courses may be needed)
70%
RES
Yes – UK-wide
70%
Active RRMS
Yes – UK-wide (England from Nov 2014)
*Relative activity of DMTs, published by Canadian Agency for Drugs and Technologies in Health (www.ncbi.nlm.nih.gov/books/NBK169740)
2
www.mstrust.org.uk
Nabiximols (Sativex)
People with MS not taking a DMT
Approved in Wales
On 15 August, the cannabis-based medicine Sativex was approved for use within NHS Wales. It can be used as a treatment for symptom improvement in adult patients with moderate to severe spasticity due to MS, who have not responded adequately to other anti-spasticity medication and who demonstrate clinically significant improvement in spasticity related symptoms during an initial trial of therapy.
Scotland
In April 2011, the Scottish Medicines Consortium (SMC) announced that it was unable to recommend Sativex within the NHS in Scotland as it had not received a submission from the holder of the marketing authorisation. However, an individual patient treatment request (IPTR) can be made.
England
Sativex has not been specifically assessed by NICE in a technology appraisal. However, it is being included in the review of the MS Clinical Guideline. A decision is expected in October 2014. Until then, funding decisions are made locally by the relevant NHS authorities according to local priorities and budgets. This means that funding is not always available. In areas where Sativex is not routinely funded, specialists may submit an individual funding request (IFR) if they can make the case that the individual will benefit. IFRs are not always granted, meaning that some people opt to pay privately for Sativex.
DMT use in fathers to be This study looked in detail at 78 pregnancies fathered by men with MS, from the Italian Pregnancy Dataset. This is a register of all pregnancies mothered or fathered by people with MS, who attend one of the 21 participating centres in Italy. Information was gathered within six months of the end of the pregnancy (delivery, miscarriage or abortion) and children were followed up for up to two years after birth, as birth defects would usually be identified within this time frame. 45 pregnancies were fathered by a man taking a DMT (39 were taking a beta-interferon; 6 glatiramer acetate) and 33 were conceived when the father was not taking any medication. The study found that there was no association between DMT use by the father at the time of conception and the risk of miscarriage, complications, length of pregnancy, number of caesareans, birth weight, birth length or birth defects. Pecori C, Giannini M, Portaccio E, et al. Paternal therapy with disease modifying drugs in multiple sclerosis and pregnancy outcomes: a prospective observational multicentric study. BMC Neurology 2014; 14(1): 114.
Flu vaccines, DMTs and MS This study reviews research to see if the disease modifying therapies (DMTs) have any impact on the effectiveness of flu vaccination in people with MS. The authors analysed the evidence for each DMT separately.
Three studies were assessed. The review found that flu vaccination was effective in people with MS not taking a DMT.
Beta-interferons
Three studies were assessed: two compared people with MS and healthy controls and the third compared people with MS taking or not taking beta interferon. Together the studies compared 200 people with MS treated with beta interferon and 500 healthy or untreated MS controls, and found that flu vaccination was effective in both groups.
Glatiramer acetate (Copaxone)
Only one study looked at flu vaccination in people with MS taking glatiramer acetate. The results suggested vaccination may offer less protection from the flu than it should but, as this was the result of one small study, more work in a larger number of people is needed to test whether this is a robust result.
Natalizumab (Tysabri)
Two studies were assessed, both compared people with MS and healthy controls. One study found less protection against flu in people with MS treated with natalizumab whilst the other found no difference in the level of protection. However both studies were in a small number of people.
Fingolimod (Gilenya)
One study compared 14 people with MS taking fingolimod and 18 healthy controls and found that flu vaccine effectiveness was similar between the two groups.
Teriflunomide (Aubagio)
One study looking at 128 people with MS taking teriflunomide found that the flu vaccination was effective and most people were protected against flu.
Mitoxantrone (Novantrone)
In the one study assessed, none of the 11 mitoxantrone treated people with MS were protected by the flu vaccination they received against the H1N1 strain of flu. Although this was a result from a very small number of people, it suggests mitoxantrone could interfere with the effectiveness of the vaccine. As mitoxantrone is a powerful suppressor of the immune system, this is not an unexpected result.
What does it mean?
The study found that although DMTs affect the immune system, most did not significantly change the effectiveness of flu vaccination. The exception was mitoxantrone, which is not often used in the UK, where no one was protected from flu by their vaccination. As there was only a small amount of research for some of the DMTs, the authors suggest further studies are needed to confirm the effectiveness of flu vaccination. Pellegrino P, Carnovale C, Perrone V, et al. Efficacy of vaccination against influenza in patients with multiple sclerosis: the role of concomitant therapies. Vaccine 2014; 32(37): 4730-5
Call: 01462 476700
3
Information news
Making Sense of MS: new resources for people recently diagnosed with MS Getting the right information around the time of diagnosis can help someone learn about MS, adjust to the news of their diagnosis and then live as well as possible with the condition.
Our research
In 2012, the MS Trust commissioned some research into the information needs of people newly diagnosed with MS1. The study found that, despite the increase in the use of the internet, people liked to access some information online and some in printed form. People with MS said that it would be helpful if they could choose as much or as little information as they wanted, or needed, on any particular topic. They preferred to have a personalised set of information and to avoid reading anything that could be upsetting if they were not yet ready to read it, or if it did not apply to them.
The workshop
The MS Trust held a follow-up workshop that included people with MS, their families, health and social care professionals and designers of health information. The workshop took the results of the research and turned them into suggestions for new resources for people with MS. Key conclusions were that everyone should be given introductory information at the point of diagnosis and that further information should be available in a flexible format to suit individual needs. The result is the new printed and online resources called Making Sense of MS.
Making Sense of MS overview The new resources aim to be positive, practical, calming and empowering and to use everyday language so that they are accessible to a wide range of people. They introduce the different symptoms, treatments and types of MS, suggest options to go forward and look at how to make good decisions about healthcare. All of the resources, except one, speak to the person with MS directly and explore different personal situations, expectations and feelings about diagnosis. The exception is A short guide to understanding my MS which is written
4
for the family, friends and work colleagues of someone newly diagnosed with MS. It explains about MS, what it can be like to be diagnosed with the condition and explores how the wider circle of family, friends and colleagues might feel about the diagnosis themselves. It also gives examples of how MS symptoms may affect people and how others can provide support.
The introductory booklet Making Sense of MS is a 20 page postcard-sized booklet (A6) which provides a brief introduction to multiple sclerosis. It answers the questions most commonly asked after diagnosis and signposts to further information. There is an order form which can be sent back to get printed copies of the new information sheets. Inside is a place to record the contact details of the MS nurse and neurologist and details of the next appointment.
We hope that the introductory booklet will be given out at the same appointment as the diagnosis is delivered by the neurologist so that no-one is left in limbo with no take-home information at all. If not, it could be included with any letter about a follow-up appointment with the MS nurse or given out during this appointment. Some services may like to stock it in information racks.
The core pack
Anyone who has read the introductory booklet, or who would like more information about MS from the start, might like to have the Making Sense of MS core pack. This is a folder with six dividers which can be used to store all of someone’s information about MS (a suggestion from the research study). It comes prefilled with a starter kit: a copy of our publications list and five of the new information sheets (see table 1). Giving someone the core pack could help them learn more about MS and support them in living well with their condition. It will also inform them about how MS services work and suggest how they could work in partnership with their health professionals.
www.mstrust.org.uk
Table 1 Information sheets available in the core pack or individually
Scope
For more on this topic we recommend:
About MS
An introduction to how symptoms occur, how MS is diagnosed and the different types of MS.
MS explained.
What happens after diagnosis?
This resource outlines some choices, like who to tell about the diagnosis and what support is available from health professionals.
Making the most of appointments
This resource makes suggestions about how to prepare beforehand, including diary keeping, and how to make the most of consultations.
Living well with MS
This resource explores how changes in lifestyle can make a difference after diagnosis with MS.
Sources of information and support
This resource suggests a wide range of options that may be helpful, including in print, online, by phone and face to face.
Factsheets on diet, depression. Living with fatigue.
Table 2 Information sheets only available individually
Scope
For more on this topic, we recommend:
Telling people
This resource discusses who must be told about the diagnosis and suggests ways to go about telling people more generally.
Working and studying with MS
This introductory resource will support people in employment, higher education or school.
MS and life choices
This resource looks at how people make good choices at any time in their lives and puts forward suggestions when making life choices after diagnosis with MS.
MS and your feelings
Many people experience a range of powerful emotions after diagnosis. This resource explores how feelings may be affected, both directly and indirectly by MS, and how they can be managed.
Treating symptoms
This resource outlines the range of treatments for MS symptoms and discusses when someone should seek treatment.
Disease modifying treatments: an introduction
This short guide introduces the range of DMT drugs, who may be eligible and how to weigh up any choice of treatment.
Relapsing remitting MS: an introduction
An introduction to RRMS for someone who has recently been diagnosed. It describes how to tell if it’s really a relapse plus treatments and recovery.
Primary progressive MS: an introduction
An introduction to PPMS for someone who has recently been diagnosed.
Primary progressive MS.
Secondary progressive MS: an introduction
An introduction to SPMS for someone who has been diagnosed with SPMS at the outset, rather than becoming secondary progressive after having relapsing remitting MS.
Note that our new book called Secondary progressive MS (see page 14) is for people who have become progressive after having RRMS.
Research and MS
This resource explores some of the approaches being taken in MS research and how to keep up to date with the latest findings.
A short guide to understanding my MS
This resource supports the family, friends, and colleagues of someone diagnosed with MS. It explains about MS, what it can be like to be diagnosed with the condition and explores how they might feel about it themselves.
Call: 01462 476700
At work with MS (does not cover education or school).
Factsheets on depression, cognition.
Disease modifying drug therapy.
5
The information sheets
Altogether there are 16 new information sheets in the Making Sense of MS series. All of them can be ordered individually, read online or downloaded as PDF files. They are either four or six pages long. Five of the sheets are also available as part of the core pack (Table 1). The remaining 11 are only available individually (Table 2). Together the information sheets provide a flexible resource. People with MS will be able to choose introductory information on a range of topics when they need it. This flexibility should be helpful to health professionals too, whether making them available in clinics or recommending them for people to source themselves, either in print or online.
Online edition
All of the above is available at www.mstrust.org.uk/ newlydiagnosed The online resource is structured a little differently from the printed version to suit the way people seek information online. The Fast facts options cover the most introductory information (equivalent to the booklet) and the Dig deeper links go to the information sheets. There are also videos embedded which feature people with MS, neurologists and MS nurses.
Talking about MS has been replaced by the information sheet called Telling people. References 1.Levenson R, Jeyasingham M, Smith S. Information needs of people newly diagnosed with MS. Letchworth: MS Trust; 2012. Accessed from: www.mstrust.org.uk/info-needs
The MS Trust would like to thank the Freemasons’ Grand Charity, Kirby Laing Foundation, The Drapers’ Company, and all our donors and fundraisers for making this project possible. We are also very grateful to all the people with MS and health professionals who were involved in the research, workshops or in reviewing the resource.
Managing your bowels commended at BMA awards
Managing your bowels: a guide for people with MS, has been commended in the 2014 BMA Patient Information Awards. This year judges chose fewer than 20% of the total number of resources entered. The BMA patient Fit with the NICE Guideline information awards Publication of the final NICE Guideline on the management of aim to encourage the MS is expected in October. The draft Guideline recommended production, dissemination that the consultant neurologist should ensure that people with and evaluation of MS, and their family members or carers, are offered verbal and accessible, evidencewritten information at the time of diagnosis. This might include, based and well-designed but should not be limited to, information about: patient information what MS is which will promote both treatments, including disease-modifying treatments greater awareness and symptom management understanding of health matters, and patient choice. how support groups, local services, social services and national charities are organised and how to get in touch MS Trust publications have been successful at the BMA Patient Information Awards in previous years where the MS Trust has won the Women’s Health Award for with them Sexuality and MS and been highly commended for MS and me, Move it for MS, legal requirements such as notifying the DVLA and legal Falls, MS explained and the Young person’s guide to MS with both StayingSmart rights including social care, employment rights and benefits. and the Kid’s guide to MS being commended. If the recommendations in the draft Guideline stand, the MS team could use Making Sense of MS as the basis of their information and supplement it with information on local services, social services and benefits.
Disease modifying drug therapies – new edition available
The draft NICE Guideline also recommended that health professionals ask the person with MS to specify what information they want and how it is delivered. Making Sense of MS should allow health professionals the flexibility to prepare a tailor-made offering for each person’s situation and wishes.
The 2015 edition of Disease modifying drug therapy - what you need to know is now available.
This edition has been updated to include dimethyl fumarate and alemtuzumab in addition to information on current beta interferon drugs, glatiramer acetate, teriflunomide, The not-so-newly diagnosed natalizumab and fingolimod. It includes a section on Although Making Sense of MS was prepared for people who consultation tips and questions to ask, to assist people in are recently diagnosed, some of the information may be helpful making the decision to start drug therapies. to people who have been diagnosed for a while. For example, if they avoided information straight after diagnosis, if their The aim is to provide reliable and un-biased information circumstances have changed or if they could benefit from on the treatment options that are available, to enable suggestions on a particular topic such as how to make the people with MS to make a decision in active partnership best of appointments with health professionals. 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 Going into retirement book, and the support of health professionals, it is hoped For some years, we have offered people newly diagnosed that people will become better informed about the benefits with MS our book called MS: what does it mean for me. of these treatments. This publication is heading into retirement. Our factsheet
6
www.mstrust.org.uk
Policy and campaigning
More than just the cost of treatment? Value based assessment and NICE We all know that NICE (National Institute for Health and Care Excellence) chooses which high-cost treatments for MS are ‘value for money’ and which are not. NICE approval makes the difference between treatments being available on the NHS and only being available on private prescription. You may be less aware that NICE was set up to only consider the cost-effectiveness of a treatment in terms of ‘health quality gained for the money spent’ when making their assessments. Decisions are based solely on whether the cost to the NHS, or the improvement to the individual’s health, will be greater than the cost of providing the drug treatment. Of course this model doesn’t take into account the fact that multiple sclerosis is not just about symptoms, but about its effect on the individual’s ability to participate in daily life, in family life, in friendships, to work, to access education, to travel, take part in leisure and community activities and generally to have as normal a life as possible. As an example, using the current model, NICE can take into account the cost impact on the health of an individual with MS that becoming more disabled would have, but they do not take into account whether the increase in disability may mean the individual will need social care provision and funding, or the potential loss of the individual’s ability to work – both of which are a very real cost to the state, as well as a significant life-change for the person involved. This leads to some skewed decisions.
intervention to the people being treated into an estimate of the net impact on society… Impact in this context means the balance (or net effect) of the treatment on patients’ contribution to society including… working in paid or unpaid employment, or taking care of someone… and receiving something paid for …by society, such as informal care, social care or universal credit.”1 The MS Trust would like NICE to choose ‘wider societal benefit’, but as yet we don’t know which model NICE will plump for, if either. NICE’s final decision will be complicated by a need to prove that they are not being discriminatory: a model that suits a condition such as MS, which predominantly affects people of working age, may have very different outcomes when applied to medications for the very old. From the MS Trust’s experience, any broadening of the basis of calculation will be an improvement. Why does this matter? In the long term, it matters because people with MS need access to medications to keep them going. In the short term, it may change the basis for calculating the multi-technology appraisal (MTA) of disease modifying drug therapies (DMT) for MS that NICE has promised for early 2015. The MTA is designed to consider all the DMTs and assess which are value for money, and which, if any, should not be prescribed. We consider a wider basis for assessment will help NICE to make better judgements for those decisions. Reference: 1. National Institute for Health and Care Excellence: Centre for Health Technology Evaluation. Value based assessment of health technologies. London: NICE; 2014.
A recognition that NICE’s narrow assessment criteria may be creating as many problems as it solves has been doing the rounds for some time. ‘Value based assessment’ is the jargon term for broadening the model to take into account some more of what NICE calls ‘the societal benefits’ of living as normal a life as possible. In June, NICE consulted on two possible versions of value based assessment. Their preferred model is ‘wider societal impact’, which they define as the “loss (or shortfall) in a person’s capacity to engage with society as a result of living with the disease or condition.” 1 As an alternative, they offered a broader concept of ‘wider societal benefit’ “that translates the health benefit of an
Call: 01462 476700
7
Adapting mindfulness courses to the needs of people with MS
Angeliki Bogosian, Research Fellow, Health Psychology, King’s College London
Introduction
MS and mindfulness
People affected by multiple sclerosis (MS) are faced with uncertainty about the future; unpleasant and unpredictable symptoms, treatment regimens and drug side effects. People with MS have been found to exhibit a higher prevalence of mood disorders compared to individuals with other chronic medical1 or neurological2 conditions. The prevalence rate for depression in MS is 18.5% and for anxiety 44.5%3. Despite a number of upsetting and debilitating challenges, many people respond in ways that mean they can maintain an acceptable, or good, quality of life4, 5. Supporting people who have difficulties adjusting to MS challenges is important.
MS can have profound consequences including disruption of life goals, employment, income, relationships, social and leisure activities of daily living. Therefore, it is not surprising that it poses multiple challenges for psychological adjustment. Even though a lot of people manage to adjust to MS in a positive way, others face difficulties.
Mindfulness based group therapy can help people adjust to chronic illness and manage unpleasant symptoms. Acceptance is a key component of mindfulness courses. Acceptance may also be particularly important in the context of progressive illness where there is little, if anything, that can be done to halt deterioration. Mindfulness teaches us to relate to our thoughts and to accept them as passing events that do not necessarily represent reality6. Mindfulness is based on the philosophy that human suffering develops in part by efforts to struggle with, and avoid, our own psychological and emotional pain. Changing our relationship to thoughts can lead to less suffering.
Mindfulness for health Mindfulness is an increasingly popular and effective way to help people relate to their thoughts and emotions in a different way. Mindfulness teaches us to make peace with our thoughts and emotions rather than try to change them or ignore them. Research findings show that mindfulness courses reduce depression and anxiety and increase health related quality of life in people with a range of medical conditions7. During a mindfulness practice, we sit upright and focus on something straightforward, like the in- and out-flow of breath. We aim to nurture a curiosity about these sensations – not to explain them or change them, but to know them. Over a typical eight-week course participants complete a substantial amount of mindfulness practice (45 mins CD guided meditation daily) and participate in weekly group sessions (2-2.5 hours long), where they discuss and reflect on their practice.
8
A recent systematic review identified three controlled trials on mindfulness in MS8. After the eight-week course, people affected by MS showed improvements in MS quality of life, depression and fatigue9, improvements in standing balance10, and reductions in fatigue and pain11. These results suggest that mindfulness may be helpful in reducing psychological distress and helping with MS symptom management. Mindfulness meditation practice requires continuous attention and the ability to sit still in one position. For people affected by MS these requirements may be more challenging and we need to take into consideration compromised concentration, fatigue and possible problems with sitting in one posture. We can maximize the effects of mindfulness courses by adapting them to accommodate the specific needs of people with MS. In this way, mindfulness courses can not only be more relevant, but also more accessible, to people with different degrees of disease severity and disability. There are a few aspects of the eight-week mindfulness courses that could be adapted. Firstly, meditation practice in sessions and at home can be shortened to 10-20 minutes, rather than the traditional 45 minutes. Studies that examined the effectiveness of mindfulness courses, while using shorter mindfulness practices, have been successful before12, 13. The shorter length of the homework practice can make the course more attractive and people may find it easier to keep up their daily practice. Secondly, mindfulness sessions include a mixture of group mindfulness practices and discussions. These activities require a lot of focused attention, reflection and interaction with other participants and the facilitator to reach insights. The length of the sessions can make them difficult to follow, and the traditional 2.5 hours sessions may be prohibitive for people with MS, as fatigue is a frequent symptom. Sessions with a shorter duration might be a
www.mstrust.org.uk
better alternative, for example one hour sessions that retain the original structure and purposes, for people affected by MS. Given that no dose response has been found between in-class hours and effect size14, this change is unlikely to compromise the effectiveness of the course. Thirdly, face-to-face group interventions, although ideal to create a supportive environment for the mindfulness practices, exclude not only those in rural areas but also many of those most severely affected by the condition, who may have the most to gain. Therefore, alternative ways to deliver the course remotely, for example via video-conferences, are worth considering. There has been increasing use of distance delivered interventions for people with disease related barriers as technology has advanced15. Encouraging findings have been reported using tele-conferences to deliver mindfulness intervention with people who experience both epilepsy and depression13. Thus distance delivered interventions can be a useful tool in order to make potentially beneficial interventions more accessible16, 17. Skype is a free online software, which allows callers to see one another, and can involve a group of people. The visual and audio contact would make rapport with the facilitator and other group members easier than in tele-conferences and therefore can be a good alternative to face-to-face group format.
9. Grossman P, Kappos L, Gensicke H, et al. MS quality of life, depression and fatigue improve after mindfulness training: a randomised trial. Neurology 2010; 75(13): 1141-9. 10. Mills N, Allen J. Mindfulness of movement as a coping strategy in multiple sclerosis. A pilot study. Gen Hosp Psychiatry 2000; 22(6): 425-31. 11. TaveeJ, Rensel M, Planchon SM, et al. Effects of meditation on pain and quality of life in multiple sclerosis and peripheral neuropathy: a pilot study. Int J MS Care 2011; 13(4): 163-8. 12. Kingston J, Chadwick P, Meron D, Skinner TC. A pilot randomized control trial investigating the effect of mindfulness practice on pain tolerance, psychological well-being, and physiological activity. J Psychosom Res 2007; 62(3): 297-300. 13. Thompson NJ, Walker ER, Obolensky N, et al. Distance delivery of mindfulness-based cognitive therapy for depression: project UPLIFT. Epilepsy Behav 2010; 19(3): 247-54. 14. Carmody J, Baer RA. How long does a mindfulness-based stress reduction program need to be? A review of class contact hours and effect sizes for psychological distress. J Clin Psychol 2009; 65(6): 627-38. 15. Boeschoten RE, Nieuwenhuis MM, Oppen P, et al. Feasibility and outcome of a web-based self-help intervention for depressive symptoms in patients with multiple sclerosis: a pilot study. J Neurol Sci 2012; 315(1-2): 104-9. 16. Mohr DC, Dick LP, Russo P, et al. The psychosocial impact of multiple sclerosis: exploring the patient’s perspective. Health Psychol 1999; 18(4): 376-82. 17. Moss-Morris R, Dennison L, Landau S, et al. A randomized controlled trial of cognitive behavioral therapy (CBT) for adjusting to multiple sclerosis (the saMS Trial): does CBT work and for whom does it work? J Consult Clin Psychol 2013; 81(2): 251-62.
Finally, in the CD instructions the facilitators need to give more details on MS specific sensations including painful sensations, lack of sensation or difficulties retaining posture. As mobility is an issue for people with MS, mindful movement and mindful walking practices that are included in the original mindfulness based interventions might not be appropriate.
Conclusion The traditional way that mindfulness courses are delivered can be prohibitive for people who may struggle with concentration, fatigue and other physical constraints. Reducing the length of the meditation practices and the weekly sessions, and also finding alternative ways to deliver the course, can make mindfulness easier to access and easier to follow through with. References 1. Patten SB, Beck CA, Williams JV, et al. Major depression in multiple sclerosis: a population-based perspective. Neurology 2003; 61(11): 1524-7. 2. Cummings JL, Arciniegas DB, Brooks BR, et al. Defining and diagnosing involuntary emotional expression disorder. CNS Spectr 2006; 11(6): 1-7. 3. Wood B, van der Mei IA, Ponsonby AL, et al. Prevalence and concurrence of anxiety, depression and fatigue over time in multiple sclerosis. Mult Scler 2013; 19(2): 217-24. 4. Olsson M, Lexell J, Söderberg S. The meaning of women’s experiences of living with multiple sclerosis. Health Care Women Int 2008; 29(4): 416-30. 5. Pakenham KI. Making sense of illness or disability: the nature of sense making in multiple sclerosis (MS). J Health Psychol 2008; 13(1): 93-105. 6. Segal ZV, Williams JMG, Teasdale JD. Mindfulness-based cognitive therapy for depression: a new approach to preventing relapse. New York: Guilford Press; 2002. 7. Grossman P, Niemann L, Schmidt S, Walach H. Mindfulness-based stress reduction and health benefits. A meta-analysis. J Psychosom Res 2004; 57(1): 35-43. 8. Simpson R, Booth J, Lawrence M, et al. Mindfulness based interventions in multiple sclerosis - a systematic review. BMC Neurol 2014; 14(1): 15.
Call: 01462 476700
9
Auditing services: development of a standardised data collection tool Olly Krouwel, Physiotherapist, Burrswood Hospital, Kent
Introduction Burrswood Hospital and the University of Brighton have successfully completed a standardised data collection audit of their physiotherapy and aquatic physiotherapy services for people with multiple sclerosis (MS). The aim of this article is to give a brief overview of how we developed the tool used for the audit and how it is intended to benefit the larger MS population.
Background Burrswood Hospital is an independent private hospital on the Kent and Sussex border. We pride ourselves on effective patient centred care. We had several motivations to complete this project including providing a quality service for our patients that empower, support and educate in a personalised way, as well as wanting to assess the effectiveness of our services. At the same time we wanted to provide evidence that the service provision (which can be replicated in other centres across the UK) is sustainable and cost effective. A standardised data collection (SDC) tool is a way of collecting and recording information relating to a patient’s assessment, treatment and treatment outcomes so that the most effective and efficient treatment approaches can be identified. The patient data collected by the clinicians
as part of the assessment and treatment can then be used to inform performance management, financial management, research, audit and clinical effectiveness. The SDC tool discussed here, the Burrswood Standardised Data Collection Tool (BSDCT), was developed to evaluate the physiotherapy service provided for people with MS as a result of a service level agreement with a local consultant neurologist. To ensure quality, a systematic process involving consultation with all stakeholders including people with MS, families, carers, specialist nurses, physiotherapists, consultant neurologists and representatives of the MS Society.
Generating evidence for cost effectiveness We were approached by a local consultant neurologist, Dr Gerry Saldanha, to set up a physiotherapy service for his patients who have MS. The new service was financed by a trust fund held by Dr Saldanha which was finite and planned to last three years. The intention from the start was to produce a business case for continuing funding. We intended to prove a physiotherapy service could be Quality, Innovative, Productive and Prevent progression of secondary complications as much as possible (QIPP strategy). I was amazed to find very little evidence to show physiotherapy services are cost effective. There is however, evidence of the effectiveness of physiotherapy for people with MS and anecdotally physiotherapists are valued by the multidisciplinary team and patients. However, there was no evidence that demonstrates their worth economically. A fact that commissioners are very interested in! We therefore had to generate evidence. We decided to complete a Standardised Data Collection Tool with validated and reliable outcome measures to support the quality, productivity and prevention aspect of the service. The service in itself was innovative in many ways especially the inclusion of aquatic physiotherapy. We were delighted that the University of Brighton could help with the project and give much needed and valued advice to support the project.
10
www.mstrust.org.uk
Method Figure 1 describes the process of developing the tool. 100 completed records of people with MS who gave consent to use their anonymous data were collected and analysed. The data included records from eight physiotherapy sessions, including an initial assessment, a follow up assessment and six dedicated treatment sessions. Data included patient details, diagnosis, referral information, treatment details, outcome measures and service related details. Treatment sessions included either aquatic physiotherapy or land based physiotherapy.
Figure 1: The development trail of Burrswood’s Pilot SDCT Literature searches and discussions with academics, physiotherapists and a consultant neurologist from West Kent PCT. Decided to modify previously developed tools for Aquatic physiotherapy (HYDAT report 2010) specifically for people with MS. All available treatment options at Burrswood Hospital were considered and included in the tool. A small focus group with people who have MS also consulted. Research and discussions with specialist physiotherapist working with people who have MS. First version developed. First version piloted and presented to people with MS at Burrswood hospital with three individual interviews and written feedback. Second version piloted by Burrswood physiotherapy team and presented to academics to ensure the data collection is specific and sensitive. The SDCT was redrafted following recommendations from both physiotherapists and patients to make the form more succinct and user friendly. Second version piloted by Burrswood physiotherapy team and presented to University of Brighton to ensure the data collection is specific and sensitive. Further research and discussions with people who have MS and correspondence with the MS Society research department. Developments and modifications discussed at a meeting with consultant neurologist and people with MS to ensure all useful data is included in the tool. Third version developed which is currently being used by Burrswood Physiotherapy Team with the intent to work with other physiotherapists, who regularly see people with MS, to analyse the usability in different settings.
Main findings The process of developing the BSDCT and using it to collect the data was challenging from the start, however the information we gained has been invaluable. The tool provides a comprehensive record of patient’s details, treatment and outcomes: two-thirds of the patients had a progressive condition, with one-third diagnosed with relapsing remitting MS the majority of patients were female two-thirds of the patients were between 40 – 60 years old three-quarters of patients were seen within four weeks of referral (with one-third of patients seen within two weeks) over three-quarters of the patients completed six sessions of aquatic therapy a wide range of treatments were used with the four most common being: • balance re-education/exercise • functional exercises • weight bearing exercise • active strengthening outcome measures showed an overall percentage improvement in fatigue, quality of life, balance and gait using standardised and validated tools specific to this patient group – the Modified Fatigue Impact Scale (MFIS), the Multiple Sclerosis Impact Scale (MSIS-29) and a more general tool to measure gait and balance abilities, the Performance Oriented Mobility Assessment (POMA) fatigue and quality of life outcome measures showed similar improvements overall with few people declining in symptoms the POMA showed aquatic physiotherapy was 19% more effective than land based physiotherapy nearly 80% of patients who completed the course of eight sessions, reported motivation to continue with independent exercises, with 67% intending to continue with exercise at Burrswood Hospital that will be funded privately by the patient.
Summary We have been using the data collection tool since February 2010 and believe it is easy to use and could be easily adapted to other practices. To date it has not been trialled in other physiotherapy practices, therefore is intended as a pilot to be adapted and improved on as it is put into use in other centres. We hope that the data collected with the BSDCT will help Burrswood Hospital, and other hospitals, to continue providing on-going and long term physiotherapy services for people with MS. We would welcome communication with health professionals working with people who have MS, and would encourage the use of the BSDCT by other physiotherapy services working with people who have MS. Further information on the development of the tool is available at: www.burrswood.org.uk/news_events/news/ research_project_published
Call: 01462 476700
11
Experiences of UK health care services for people with MS: a systematic narrative review Abigail Methley, Stephen Campbell, Carolyn Chew-Graham, Sudeh Cheraghi-Sohi; Institute of Population Health – Primary Care, University of Manchester
Introduction The NHS recently implemented a policy aiming to improve patient experiences through more flexible, patient led health care services1. As part of a PhD investigating the experiences of UK health services by people with MS, a literature review was carried out on the topic. Systematic reviews on pharmacological treatments2 and rehabilitation for MS3 were located, however none had been completed on the health care experiences of people with MS in the UK and therefore that was the aim of this review.
Method Inclusion criteria: any publication date qualitative studies only (defined by the Cochrane qualitative methods group4 as those which both collected and analysed data using a qualitative method) focused on patients’ experiences, views, attitudes to and perceptions of UK health services for MS. Studies involving mixed samples of people with MS and carers or health care professionals were excluded, as were studies that used mixed patient groups e.g. MS and Huntington’s disease. Searches were conducted in four of the largest medical research databases (psychINFO, Medline, EMBASE, CINAHL), alongside the MS Society library, Multiple Sclerosis Journal and the British Journal of Neuroscience Nursing.
Data collection and analysis
Study data were independently extracted and appraised for quality by two researchers using the Critical Appraisal Skills Programme checklist for qualitative syntheses (adapted for use with qualitative syntheses)5.
Findings 459 articles were initially identified. 403 were rejected upon reading their abstract or research summary as they failed to meet the inclusion criteria and 50 articles were rejected after reading the study in full, leaving six articles6-11 (one study reported over two articles7, 8). These five studies were conducted between 2003 and 2008. Four of the studies were conducted in England6-10, one
12
in Northern Ireland11. Overall, reporting of demographic information including ethnicity, participant ages, disease duration and disability was very varied. Limited reporting contributed to low scores on the quality appraisal, as did poor justification for sample selection/size, and limited reporting of analysis process. The limited number of studies and the variety of areas covered meant that the data were too heterogeneous to use an in-depth qualitative synthesis method (for example meta-ethnography)12 and a narrative summary approach was used. Findings of the studies could be broadly divided into two areas: diagnosis and palliative care. The process of diagnosis was overall a negative and lengthy experience6, 9, 11 . Diagnosis was a very emotive experience, transcending from distress at the awareness of initial symptoms, through to fear and uncertainty during and after diagnosis, and in some cases, shock, devastation or relief when diagnosis was confirmed6, 9-11. Studies reported a lack of advice and information about MS at the time of diagnosis6, 9, 10. Lack of information and understanding could cause fear and perceptions of lessened control (e.g. when undergoing MRI scanning10). The timeliness of access to information was therefore crucial. Studies commonly reported dissatisfaction with services where information provision was limited9-10. Whilst occupational therapists, physiotherapists and community nurses were perceived to be knowledgeable sources of information, general practitioners were felt to be less knowledgeable on MS and not always able to provide appropriate information9, 11. Once a diagnosis of MS had been confirmed, studies reported difficulties accessing both treatments and services for MS care6, 11. Continuity of care was reported to be poor during both diagnosis and ongoing care, especially relational continuity of individual neurologists9. Studies reported that participants could feel “abandoned” or “isolated” by the health care system where they did not receive appropriate support9. Communication with health care professionals was often experienced negatively by participants, where it was perceived as unsympathetic and insensitive6, 11.
www.mstrust.org.uk
Embrey7, 8 was the only study to report the experiences of palliative care of people with MS. This study found that therapeutic interventions resulted in many benefits including symptom relief, a sense of achievement, and opportunities for health promotion. Additional benefits were friendship, reduced carer burden and positive experiences with staff. Perceived negatives were the infrequency of interventions and concerns over the long term continuity of the service.
of the four Strategic Clinical Networks is hoped to improve the continuity of care across primary and secondary care services18. However, a service audit of MS care in 2011 revealed difficulties accessing relevant services dependent on local funding priorities, referrals and availability of services, therefore further variety may be displayed due to the differing priorities of clinical commissioning groups19. It will therefore be necessary for further research to investigate these issues within the new NHS structure.
Discussion
Strengths and limitations of the study
Included studies investigated experiences of diagnosis and palliative care, with limited information on experiences in the middle of the care pathway. Overall themes which transcended the care pathway were: the emotional experience of care perceived support from health care professionals the importance of continuous and accessible care services. The issues resulting in negative experiences of services are unfortunately well established in the literature on this topic. However, this review suggests that despite increased awareness and policy, these topics still require addressing in primary, secondary and community services for people with MS across the UK, although more current evidence is needed.
Implications for practice, research and commissioning
As previously discussed in research on MS, communication with health care staff is key to the experiences of people with MS of health care13. Findings from included studies suggest that poor interpersonal communication is still a significant issue in clinical practice, despite the introduction of the 2003 NICE guideline14. A priority should be to improve professionalpatient communication, through raising awareness of the impact of negative interactions, and providing training if necessary, similar to oncology services15.
The conclusions presented are drawn from a limited body of research, on limited aspects of the care pathway and where the quality of reporting was mixed. There is a need to increase the quality of reporting in qualitative research to gain a more thorough understanding of the full health care experience for people with MS. From the limited demographic data it appears that more participants under the age of 35 should be included in research to represent young adults with MS. Additionally, only one study reported ethnicity data, so despite wellestablished difficulties in help seeking and barriers to accessing health care reported by people from ethnic minority backgrounds20, the experiences of these people with MS are unknown.
Summary This review provides an overview of qualitative literature investigating the experiences of people with MS of UK health care services. Identified studies focused on diagnosis and palliative care, suggesting the need for up to date information on the whole of the care pathway, for service delivery and commissioning. Emotional experiences of health care, access and continuity of care and support from health care professionals are key to the health care experiences of people with MS. However current literature reflects a limited sample, neglecting younger people and people from ethnic minorities, whose experiences remain unknown.
Studies reported negative experiences where lack of information caused distress and uncertainty. The NHS has previously acknowledged the need to improve the emotional experiences of patients, and this is clearly applicable to people with MS16. Providing timely and credible information may assist in this area. The included studies also suggest that experiences of both diagnosis and ongoing care could be improved by better responsiveness and increased continuity of care between primary, community and specialist care. All studies included in this review were published in the last decade, however, many participants had been diagnosed for a long period of time before the study took place. Therefore, experiences may have improved due to the increased role of MS specialist nurses and improved diagnostic technology, but it has not been possible to evaluate that in this review.
Implications for commissioning
Patient concerns over the continuity and quality of care services in the UK are a pertinent issue due to the closure or restriction of some NHS and charity facilities17. The inclusion of neurological conditions (including MS) in one
Call: 01462 476700
13
References 1. Department of Health. Equity and excellence: liberating the NHS. London: The Stationary Office Limited; 2010. 2. Rice GP, Incorvaia B, Munari LM, et al. Interferon in relapsing-remitting multiple sclerosis. Cochrane Database Syst Rev 2009; 4: CD002002. 3. Rosti-Otajärvi EM, Hämäläinen PI. Neuropsychological rehabilitation for multiple sclerosis. Cochrane Database Syst Rev 2014; 2: CD009131. 4. Noyes J, Popay J, Pearson A, et al. Chapter 20: Qualitative research and Cochrane reviews. In: Higgins JPT, Green S (editors) Cochrane Handbook for Systematic Reviews of Interventions Version 5.1.0 (updated March 2011). The Cochrane Collaboration; 2011. Available from www.cochrane-handbook.org 5. Campbell R, Pound P, Morgan M, et al. Evaluating meta-ethnography: systematic analysis and synthesis of qualitative research. Health Technol Assess 2011; 15(43): 1-64. 6. Edwards RG, Barlow JH, Turner AP. Experiences of diagnosis and treatment among people with multiple sclerosis. J Eval Clin Pract 2008; 14: 460-4. 7. Embrey N. Exploring the lived experience of palliative care for people with MS, 2: therapeutic interventions. British J Neurosci Nurs 2009; 5(7): 311-8. 8. Embrey N. Exploring the lived experience of palliative care for people with MS, 3: group support. British J Neurosci Nurs 2009; 5: 402-8. 9. Johnson J. On receiving the diagnosis of multiple sclerosis: managing the transition. Mult Scler 2003; 9(1): 82-8. 10. Laidlaw A, Henwood S. Patients with multiple sclerosis: their experiences and perceptions of the MRI investigation. J Diagnost Radiog Imag 2003; 5(1): 19-25. 11. Malcomson KS, Lowe-Strong AS, Dunwoody L. What can we learn from the personal insights of individuals living and coping with multiple sclerosis? Disabil Rehabil 2008; 30(9): 662-74. 12. Sandelowski M, Docherty S, Emden C. Focus on qualitative methods. Qualitative metasynthesis: issues and techniques. Res Nurs Health 1997; 20(4): 365-71. 13. Edmonds P, Vivat B, Burman R, et al. ‘Fighting for everything’: service experiences of people severely affected by multiple sclerosis. Mult Scler 2007; 13(5): 660-7. 14. National Institute of Clinical Excellence. Multiple sclerosis: management of multiple sclerosis in primary and secondary care. NICE Clinical Guideline 8. London: NICE; 2003. 15. Schofield NG, Green C, Creed F. Communication skills of health-care professionals working in oncology - can they be improved? Eur J Oncol Nurs 2008; 12(1): 4-13. 16. Department of Health. Now I feel tall: what a patient led NHS feels like. London: Department of Health; 2005. 17. The King’s Fund. How is the NHS performing? Quarterly monitoring report. London: The King’s Fund; 2012. 18. NHS Commissioning Board. The way forward: Strategic Clinical Networks. NHS Commissioning Board Authority website. (July 2012). Accessed from www.commissioningboard.nhs.uk/wp-content/uploads/2012/07/way-forwardscn.pdf 19. Royal College of Physicians. The national audit of services for people with multiple sclerosis. London: Royal College of Physicians; 2011. 20. Szczepura A. Access to health care for ethnic minority populations. Postgrad Med J 2005; 81(953): 141-7.
Endnote This paper has been written up in full and published in the journal Health Expectations as: Methley AM, ChewGraham C, Campbell S, Cheraghi-Sohi S. Experiences of UK health-care services for people with multiple sclerosis: a systematic narrative review. Health Expect 2014; Jul 2 [Epub ahead of print]
Acknowledgements This project was fully funded by a National Institute of Health Research School for Primary Care Studentship. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.
14
Secondary progressive multiple sclerosis: new book now available Our new book on secondary progressive MS is now available to order. The book explains: the processes that are happening as the pattern of someone’s MS changes and why it can take time for the new diagnosis to be confirmed approaches to treating secondary progressive MS – both symptomatic and rehabilitation strategies the emotional side of the transition to secondary progressive MS and ways to manage this the growing level of research into progressive forms of MS. It also looks at how to stay healthy and independent with secondary progressive MS and the health professionals who may be involved in supporting the individual.
New look Way Ahead The first edition of Way Ahead was published in January 2007. Back then it was a simple four-page newsletter. The aim of Way Ahead was to share articles about current research, best practice and inform health professionals about various projects the MS Trust was working on. Although the aim of Way Ahead hasn’t changed, the design has gone through several iterations through to the current 16-page offering you are reading today which was introduced in 2008. We felt it was time for a change and will be introducing a new design in the next issue (January 2015). Many of our contributors have mentioned that writing for Way Ahead was a good stepping stone before embarking on writing for a fully-fledged journal. We hope that the more sophisticated style of the new look Way Ahead periodical will encourage even more of you to do the same!
www.mstrust.org.uk
Professional development
Don’t miss out on our Annual Conference
The GEMSS Patient Survey Service for MS specialist nurses
9 - 11 November 2014 A few places remain for this flagship event for nurses and allied health professionals working with people with MS. The MS Trust Annual Conference runs from 9 - 11 November at Chesford Grange, Kenilworth. The programme is varied, current and aims to offer something for everyone, whether acute or community based, generalist or specialist. We are looking forward to a fantastic event. If you are planning to attend book your place now to avoid disappointment www. mstrust.org.uk/conference. The MS Trust offers bursaries of up to 75% for health professionals working in a clinical role with people with MS. You don’t have to be a specialist to be eligible www.mstrust.org.uk/bursaries.
MS Study Day in partnership with Devon ACPIN
Want to understand how your patients perceive your service and find out their suggestions for improving it? Need to gather evidence of the value you bring to people with MS? Making use of the MS Trust GEMSS patient survey service will enable you to obtain the data you need and learn from the results. You send out the surveys to a sample of your caseload (we provide all the guidance and materials you need) Patients can respond online or on paper, returning their completed surveys to the MS Trust We input and analyse the results and go through these with you You get a PowerPoint presentation of your data, ready to share and discuss with colleagues.
Venue: Ivybridge, Devon Date: Tuesday 24 February, 2015 Price: £50 + VAT for ACPIN members £65 + VAT for non-members
To find out more, email Debbie Weber: gemss@mstrust.org.uk
Planned topics to include: update on MS including treatments forthcoming research fatigue management the importance of exercise. To register your interest please contact education@mstrust.org.uk
SAVE THE DATE - Annual MS Specialist Nurse Meeting 10 - 11 March 2015, Crewe Hold the date! This annual two day meeting aimed specifically at UK MS specialist nurses will provide opportunities to learn new extended skills and hear the latest clinical updates. Invitations will be sent out in due course. Look out for programme details in the next edition of Way Ahead
Call: 01462 476700
GEMSS
Generating Evidence in Multiple Sclerosis Services
15
Publications For a complete listing of all our publications and factsheets visit our website at www.mstrust.org.uk
Making sense of MS resources for the newly diagnosed Making Sense of MS introductory booklet NEW Making Sense of MS core folder containing: NEW • About MS • What happens after diagnosis? • Making the most of appointments • Living well with MS • Sources of information and support
Winter fundraising ideas for all the family Santa Run Victoria Park, London Sunday 7 December, 2014
A
• Publications for people with MS from the MS Trust Please note: The six elements of the Making Sense of MS Core pack can also be ordered individually.
Making Sense of MS optional information: Telling people NEW Working and studying with MS NEW
Join over 2,000 people taking part in this fun run and be Santa for the day! You can run, jog or walk either the 5K or 10K route. The event is open to anybody aged eight and above and wheelchair entrants are welcome too.
MS and life choices NEW MS and your feelings NEW Treating symptoms NEW Disease modifying treatments: an introduction NEW
Registration fee: £22 Minimum sponsorship: £100
Relapsing remitting MS: an introduction NEW Primary progressive MS: an introduction NEW Secondary progressive MS: an introduction NEW
z
Research and MS NEW A short guide to understanding my MS (to give to others) NEW 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
Register now at mstrust.org.uk/santarun
Get the kids involved with Reindeer Rally! There’s lots of fun to be had at your local school or club this December with the MS Trust’s Reindeer Rally. We will provide everything you need for a successful rally, including reindeer masks which the children can decorate and then wear for a short sponsored race! Contact us for your free Reindeer Rally pack or visit: www.mstrust.org.uk/reindeer
Christmas cards now on sale
Job title
We have a great selection of Christmas cards available with all profits going directly to help our work. Free gift for all orders of £25 and over! Choose your cards now at www.mstrust.org.uk/christmas
Address Postcode Telephone number 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
16
www.mstrust.org.uk