November 2012 Open door by MS Trust

MS Trust publications

Order form For a full list of publications visit www.mstrust.org.uk/pubs where items can be read, downloaded or ordered.

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

Books Living with fatigue MS and me - a self-management guide to living with MS MS explained Primary progressive MS exposed Talking with your kids about MS Kids’ guide to MS The young person’s guide to MS

Factsheets Regularly updated, we now have more than 20 titles available including

The MS Trust publishes a range of books, factsheets, DVDs and web based resources on a wide variety of topics. A selection is shown in the order form and the full list can be seen at www.mstrust.org.uk/pubs, where items can be read online, downloaded or ordered.

Books for families MS affects the whole family but it can sometimes be difficult to discuss the changes that MS brings when a parent has MS. These MS Trust books may help.

Kids’ guide to MS (for under 10s) Follow two cartoon characters as they find out about MS and some of its symptoms.

Depression Pregnancy and parenthood Stem cells Talking about MS Vitamin D

Chatroom transcript Secondary progressive MS - managing the transition

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

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The young person’s guide to MS (10-16 year olds) Includes information about MS and its effects as well as some of the questions, concerns and emotions that a teenager may experience and have difficulty discussing.

Talking with your kids about MS (for parents)

Name Job title (if health professional) Address

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

Discussing MS with children may seem daunting and how and when you decide to do this will differ from family to family. Neuropsychologist Jo Johnson looks at some of the concerns parents may have and suggests how to approach the discussion, some of the things children may want to know and what other parents’ experiences have been.

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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Inside this issue...

November 2012

Welcome to the autumn edition of Open Door

Psychology and MS

This edition of Open Door has a theme based around coping with the challenges of living with MS, including at diagnosis (page 10). This can range from knowing which questions to ask when considering drugs or therapies, to more complex issues such as finding ways of dealing with changes in mood using mindfulness or cognitive behavioural therapy. One of the more difficult challenges is the transition from relapsing remitting to secondary progressive MS and the articles on pages 8 and 9 discuss this topic. We know from people with MS and health professionals that there is very little research on the impact of this transition and even less in the way of information resources. Therefore we have launched an appeal to carry out some research to help us develop information and education resources to support people whose MS has become progressive (see page 8 and the enclosed copy of Make a Difference). We have recently funded the MRI scanning for a phase II study in Bristol into a stem cell therapy that aims to reduce the build up in disability that often accompanies progressive MS. Encouraging results from the phase I study suggested that using a person’s own stem cells may help to achieve this aim. It’s very early days for the research, but we have chosen to support it as we believe it offers real hope for the future (see page 3).

Volunteering

C2C - coast to coast

I know many people were inspired by the volunteer games makers at the Olympics and Paralympics and this quarter we are delighted to feature Anne Radcliffe’s story of how rewarding she finds volunteering in her local community. We are always pleased to receive personal stories for our website or Open Door and if you would like to write something please get in touch. Very best wishes and thank you for supporting our work,

Also inside: Making treatment choices

News

Santa’s on his way

Research update

It’s not too late to order your Christmas cards from the MS Trust. Not only will you be supporting our work, but you will also be raising awareness of MS and the help we can offer. Our full range is available at www.mstrust.org.uk/christmas

Secondary progressive MS

Transition to SPMS

Info needs research

Pam Macfarlane Chief Executive

MS Trust publications 16 www.mstrust.org.uk

Freephone: 0800 032 3839

Making choices about treatments

Choice has become something of a watchword for the NHS in recent years. Initially this focussed on choosing your own GP or hospital if you are referred to a specialist. Increasingly, the emphasis has shifted to encouraging you to be more involved in choices about your healthcare and ensuring that you have the information you need to do this.

Making treatment choices Research has shown treatments are more effective if you can choose, understand and control your care1. Ideally a decision about what treatment is right for you will be reached through considering the benefits you might expect and any potential associated risks. This includes effects on lifestyle such as when and how a course of treatment is taken. Whilst a neurologist may be an expert in MS, you are the expert in your MS and how it affects your life; your own goals for the treatment and your commitment to stick to the course are also important factors. An NHS campaign launched earlier this year recommends three questions to ask your doctor or MS nurse to help you make choices and give you more say in your own healthcare:

Ask 3 Questions 1. What are my options? 2. What are the pros and cons of each option? 3. How do I get support to help me make a decision that is right for me? For example: ■ if you are continuing to have relapses, you may need to decide whether to continue with your current disease modifying treatment or switch to a different one ■ you might want to talk through ways to tackle MS fatigue ■ if a drug for pain relief is causing side effects, what are the alternatives?

Shared decision making There may be times when you would like more support in making decisions and others when you want to be more independent.

News

You may decide that the time is not yet right for you to start on a course of treatment. However, make sure that you know the consequences of this choice and remember that ‘no’ is not forever - a time may come when you wish to change your decision. Of course, you are only one side of the equation. Some doctors are very willing to discuss the most appropriate course of action, whereas others prefer to give clear-cut advice about what they think is right for you. The same initiative that has developed the Ask 3 Questions campaign is also working with clinicians to encourage them to be more open to sharing decisions. Encouraging people to ask the three questions has been shown to prompt clinicians to provide better information about treatment options and their benefits and risks2.

Self-management Shared decision making is just one aspect of coping with the challenges of living with MS. Living effectively with MS means using all the resources available. This might involve keeping track of your MS in a diary; setting yourself goals and working with family, friends or health professionals to achieve them; or investigating options for managing a symptom. Every day you use problem solving skills - getting a meal ready or sorting out after school activities for the children. You set goals and manage your energy and your time - this is self-management. MS is unpredictable but you can learn to understand what affects your condition, how to make the most effective use of medication and build good relationships with the health professionals that work with you. Self-management can enable you to control the things you can control and better deal with the things you can’t. Order the MS Trust book MS and Me: a guide to self-management from the back page or visit www.mstrust.org.uk/ms-and-me 1. Coulter A. Do patients want a choice and does it work? British Medical Journal 2010;341:c4989. 2. Shepherd HL, et al. Three questions that patients can ask to improve the quality of information physicians give about treatment options: a cross-over trial. Patient Education and Counselling 2011;84(3):379-385.

www.mstrust.org.uk

Bristol stem cell study

NICE consultations

Researchers in Bristol are starting a study of stem cells derived from bone marrow as a treatment in people with progressive MS, with a substantial part of the funding coming from the MS Trust.

The MS Trust is contributing to several consultations organised by NICE (National Institute for Health and Clinical Excellence)

The two year double blind, randomised, placebocontrolled study will involve 80 people with primary or secondary progressive MS. Stem cells will be collected from participants’ bone marrow. In the first year, one group will have their stem cells reintroduced by infusion into a vein whilst the placebo group will receive a blood transfusion. In the second year, the groups will be reversed. The study will look for changes in nerve conduction inside the brain and spinal cord. It will also use a range of measures to study any alterations in disease progression, in particular, extensive and innovative MRI techniques in collaboration with colleagues in Nottingham. The study builds on a previous small safety trial in Bristol that suggested this approach to treatment with stem cells might have an effect on progression. This study is already oversubscribed. Researchers are not looking for more participants. Visit http://tinyurl.com/stem-cell-study for more information Working with the Charles Wolfson Charitable Trust, the MS Trust has been able to provide £150,000 towards the MRI scanning that is vital to this research. For the latest published research, subscribe to the MS Trust's weekly MS research update www.mstrust.org.uk/research-updates

New vitamin D guidance The European Food Safety Authority (EFSA) has recommended that the European Union raise the Tolerable Upper Limits (UL) for vitamin D in adults to 4,000 IU or 100µg per day. The Tolerable Upper Limit is the highest daily dose shown to cause no side effects. As such it is a higher figure than the recommended daily allowance (RDA) which in the UK is currently 400 IU or 10µg per day.

New disease modifying therapies The European Medicines Agency is currently considering licences for four disease modifying drugs for relapsing remitting MS - alemtuzumab (Lemtrada previously known as Campath), teriflunomide, BG-12 (dimethyl fumarate) and laquinimod. Decisions are expected in 2013. NICE will appraise the drugs once licences have been granted. We have commented on the scope of the appraisal and will continue to contribute throughout the process.

Management of MS NICE has started to review the clinical guideline on the management of MS. The process will involve an extensive review of the research evidence, from diagnosis to the treatment of symptoms and the revised guideline is expected in 2014. We contributed to the scope of the guideline review.

Neuropathic pain A revision of the clinical guideline on neuropathic (nerve) pain is underway. The revised guideline is due in August 2013. We have made a submission to this review.

Urinary incontinence A new clinical guideline on bladder problems and urinary tract infections in neurological disease was issued in August. We were a contributor during the review of the guideline. Read the MS Trust responses to NICE consultations on the Action For MS pages of our website - www.mstrust.org.uk/action-for-ms/

MS Trust factsheets Order the MS Trust's from the back page or visit www.mstrust.org.uk/pubs ■ Stem cells ■ Vitamin D

Freephone: 0800 032 3839

Making choices about treatments

Shared decision making There may be times when you would like more support in making decisions and others when you want to be more independent.

News

www.mstrust.org.uk

Bristol stem cell study

NICE consultations

Researchers in Bristol are starting a study of stem cells derived from bone marrow as a treatment in people with progressive MS, with a substantial part of the funding coming from the MS Trust.

The MS Trust is contributing to several consultations organised by NICE (National Institute for Health and Clinical Excellence)

Neuropathic pain A revision of the clinical guideline on neuropathic (nerve) pain is underway. The revised guideline is due in August 2013. We have made a submission to this review.

MS Trust factsheets Order the MS Trust's from the back page or visit www.mstrust.org.uk/pubs ■ Stem cells ■ Vitamin D

Freephone: 0800 032 3839

Anxiety and depression

Research update

MS is a fluctuating condition, even when relapses are discounted, as people with all types of MS experience some better weeks and months. This study looked at whether spontaneous improvements in disability occur over one or two year periods. The researchers found that improvement does occur and was more likely in people who fell into one or more of the following groups: women, younger people, those whose MS had begun relatively recently, those whose MS began with relapses, people with moderate disability (rather than mild or advanced levels of disability), people with a previous worsening of disability that was not due to a relapse. Almost a quarter (24%) of people with primary progressive MS experienced improvements over one or two years and half of these experienced a longer improvement. The researchers concluded that improvements in MS are not unusual although the majority of people showed no change in their level of disability over one or two years. They suggest that these improvements are most likely due to the body’s natural ability to repair itself.

More details of the study This research used the British Columbian database which holds information spanning 30 years about a large number of people with MS who were not receiving any disease modifying treatment. They had been repeatedly assessed using the ten point EDSS scale, a commonly used measure of disability in MS. Looking back over one or two years, about one person in seven showed an improvement of at least half a point on the EDSS scale, one in 12 showed an improvement of at least one point and one in 45 showed an improvement of at least two points on the scale. Almost half of people experiencing an improvement retained this improvement for more than one reassessment. Tremlett H, et al. Natural, innate improvements in multiple sclerosis disability. Multiple Sclerosis Journal 2012;18(10):1412-1421.

Lower overall cancer risk MS is generally thought to be an autoimmune condition. This means that the immune system, which should protect us from infection, turns on the body’s own tissues and, in the case of MS, attacks myelin which forms the insulating covering of nerves. As the immune system is behaving unusually in people with MS, there has been some debate around whether people with MS are more likely to get other conditions or, perhaps, could be more protected. This study in Canada looked at whether people with MS were more or less likely to get cancer. 6,820 people with MS were followed for up to 27 years and compared with the general population. The researchers found that people with MS were, overall, less likely to get cancer than people matched for age and sex from the general population. The risk was the same for men and women with MS and for people with either relapsing remitting or primary progressive MS. The risk of bowel cancer was particularly low. However, in people whose MS began with relapses, the risk for non-melanoma skin cancer was significantly greater. The risks for brain cancer and bladder cancer were slightly higher. An unexpected finding was that the size of the tumour found when diagnosed with breast, prostate, bowel or lung cancer, was larger in people with MS compared with the general population. This may be because people with MS experience a wide range of symptoms including fatigue so the early symptoms of cancer may not be noticed. The researchers suggest that it is still important for people with MS to follow cancer screening guidelines to ensure that any cancer is caught early, even though the overall risk of cancer is lower. Kingwell E, et al. Cancer risk in multiple sclerosis: findings from British Columbia, Canada. Brain 2012 Jun 21. [Epub ahead of print]

www.mstrust.org.uk

7,786 adults with MS in the UK took part in a study to examine levels of anxiety and depression in MS. 14% had primary progressive MS, 62% had relapsing remitting MS, 9% had secondary progressive MS and 15% did not know their type of MS. The average age was 51. The average time since diagnosis by a neurologist was 12 years but the average time since first symptoms was 17 years. 70% were women.

Benign MS is defined as occasional, very mild attacks separated by long periods with minimal symptoms. As the defining characteristic is the long-term absence of symptoms, it can only be diagnosed looking back after ten or more years. This study examined the clinical records of 874 people whose MS began with relapses to see how many could be classified as having benign MS after ten, 20 or 30 years.

picture: iriss.org.uk

Spontaneous improvements

How common is benign MS?

Everyone has times when it is difficult to deal emotionally with some aspects of life. However, sometimes, these feelings do not pass after a reasonable period of time and turn into a deeper depressive illness which interferes with daily living.

The participants completed a questionnaire which asked whether they experienced certain thoughts and feelings often, sometimes, rarely or not at all. Examples included “I feel miserable and sad” and “I have lost interest in things”. The answers were scored and the scores gave a measure of anxiety and depression. The researchers found that just over half (54%) had anxiety and almost half (47%) had depression which is higher than the general population. Being both anxious and depressed was common. The results were also analysed for various groups of participants. Amongst people with relapsing remitting MS, women were more anxious than men. These women were also more anxious than women with other types of MS. Both men and women with secondary progressive MS were more depressed than men and women with other types of MS. Jones KH, et al. A large-scale study of anxiety and depression in people with multiple sclerosis: a survey via the web portal of the UK MS register. PLoS One 2012;7(7):e41910.

Disability was assessed using the ten point Disability Status Scale (DSS), which is similar to the commonly used EDSS scale. Two different definitions of benign MS were used: either a DSS score of two or less or a DSS score of three or less, ten years after symptoms began. Overall, the researchers found that just over half (58%) had a score of two or less after ten years of symptoms. Out of this group, nearly half (42%) still had benign MS ten years later (20 years in total since symptoms began) and almost half of those (41%) were still classified as having benign MS after 30 years. Overall, three quarters (74%) had a score of three or less after ten years of symptoms. Out of this group, just over half (54%) were still classified as having benign MS after a total of 20 years and 60% of these remained in that category after 30 years. Overall, the proportion of people whose MS remained benign was halved every ten years. Consequently, having a DSS score of two or three after ten years cannot predict whether the MS will remain benign. Therefore, benign MS may not be a helpful diagnosis as it is not possible to predict whose MS will stay benign in the longer-term. Leray E, et al. ‘Clinically definite benign multiple sclerosis’, an unwarranted conceptual hodgepodge: evidence from a 30-year observational study. Multiple Sclerosis 2012 Aug 2. [Epub ahead of print]

MS Trust factsheets

A to Z of MS

MS research update

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

A guide to symptoms, treatment and more www.mstrust.org.uk/atoz/

For the latest published research, subscribe to the MS Trust's weekly MS research update www.mstrust.org.uk/ research-updates

■ Depression

■ Anxiety ■ Depression ■ EDSS

Freephone: 0800 032 3839

Anxiety and depression

Research update

www.mstrust.org.uk

picture: iriss.org.uk

Spontaneous improvements

How common is benign MS?

MS Trust factsheets

A to Z of MS

MS research update

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

A guide to symptoms, treatment and more www.mstrust.org.uk/atoz/

For the latest published research, subscribe to the MS Trust's weekly MS research update www.mstrust.org.uk/ research-updates

■ Depression

■ Anxiety ■ Depression ■ EDSS

Freephone: 0800 032 3839

picture: Lesley Wheat

Living well with MS: a role for psychology?

Lorraine Maher-Edwards, counselling psychologist, Liz Wilkinson, MS nurse, Annette F Schwartz, consultant clinical neuropsychologist, Central Surrey Health When we think about the effects that a condition such as MS can have on people’s lives, it is not surprising that mood problems are common. Over the last year, we set up a psychology service in Surrey offering two frequently used approaches (CBT and MBCT) that research has shown can improve mood and help people adapt to and cope with living with MS. In this article we describe these two approaches and include some of the comments made by our clients who took part.

What is cognitive behavioural therapy (CBT)? CBT is a short-term talking therapy where the client and therapist work together to help the client to overcome their difficulties by changing thoughts (cognitive) and what they do (behaviour). The central idea is that the way a given situation affects us emotionally will be influenced by how we think about it and what we do in response to it. Our behaviour and thoughts will influence our body. Take the following example: Imagine you wake up feeling tired and a little low. You walk to the shops and pass someone you know, who apparently ignores you (situation). Imagine how you might feel. If you were to think ‘how dare she/he, how rude!’ (thoughts), you might feel angry and irritated (emotions), you might notice your shoulders hunch and jaw clench (physical), and you might avoid contacting this person (behaviour). But this is only one possible interpretation. You could instead think, ‘she must be in her own world, how funny!’, which of course will lead to different feelings, physical sensations and behaviours. When we are distressed or low we may not think clearly. We probably all know someone who tends to see the glass as half full, or someone who makes a mountain out a molehill. Importantly, the

more we think in a given way, the more likely we are to think this way in the future. Ways of thinking can become habits. Moreover, the more we think a certain way, the less aware we become of these thinking patterns. It is similar to when we learn a new skill like driving. We start off all too aware of the complex sequence of actions we need to coordinate in order to drive but the more skilled we become the more automatic this becomes. Importantly, it has become clear that we can change these thinking patterns with a bit of practice. In CBT, you can look at your thinking patterns with your therapist and learn to challenge unhelpful thoughts. Seeing situations from a number of perspectives can lead to a shift in how you look at yourself and the world.

“I went from being someone who beat themselves up over things I couldn’t do, believing that nobody thought I had any worth, to someone who realises this is not the case. I was being unfair on myself and others by making these assumptions. I feel like I have gone from focussing on what I cannot do to what I can. I feel better in myself, less tired, less emotional.” The CBT approach also focuses on problem solving, experimenting with how you act or respond in situations, and how you communicate in relationships. We aim to teach people skills to manage their mood in the future and clients undertake (a little) real life homework outside sessions.

“I could not believe how far I have come. I now feel I have the tools and knowledge to cope with the future even when life gets stressful. I once again feel I have self worth and look at things in a positive way not a negative way.”

www.mstrust.org.uk

Have you ever pulled up outside your house only to realise you were supposed to be somewhere else? Or arrived at your destination and found you have no recollection of the journey? When mood is low, it’s easy to get absorbed in brooding about the past or worrying about the future. This tendency to get pulled into our heads is called automatic pilot. Existing in automatic pilot robs us of the present moment, the sound of birds singing, a moment of connection with a loved one. Moreover, we don’t notice our mood becoming low. MBCT marries mindfulness meditative practice with cognitive therapy principles. Mindfulness is a means to get back in touch with the experience of being fully alive. We learn to pay full attention to our experience, moment to moment, without judging it. As for our thoughts, we learn to recognise them for what they are, mental events. We can observe negative thoughts and feelings without getting sucked in to them.

“I was very tearful before I started the course and my thoughts controlled me. By using the meditation techniques I am now in control. I still have negative thoughts, but I can see thoughts as thoughts, not facts.” Becoming more aware of the patterns of the mind, we are much better placed to recognise when mood is becoming lower and hence nip these patterns in the bud.

“I have found I am in a lighter mood more often than a low mood now. It has changed my sleeping pattern for the better. I can now laugh or ignore things that used to make me tense or stressed.” In mindfulness we bring awareness to our experience, whatever it is - we can apply mindfulness to any moment of our daily lives. Take the following example

tea. Now pick up the cup and feel the warmth in your hands. Bring the cup to your nostrils and inhale deeply the smell of the tea. Feel the warmth of the steam against your face, watch it rise from the cup. When you are ready, slowly bring the cup to your lips. Feel the hot liquid as it contacts your lips. Is it too hot or just right? What does it taste like? When your mind wanders (as it surely will), don’t tell yourself off, just gently notice where it has gone and escort it back to the tea. If you don’t like tea, notice this dislike, its strength and quality. Try to note your experiences without judging them. Adapted from Smith & Hayes. Get out of your mind and into your life. Oakland: New Harbinger Publications; 2012

picture: Patrick George

What is mindfulness-based cognitive therapy (MBCT)?

So does it work? Of 28 people with MS who took part in CBT or MBCT in our service, 76% rated their mental health as either ‘much better’ or ‘very much better’ (from a range of options ranging from very much worse to very much better). People reported a range of benefits from improvements in sleep and more energy, to less stress at work and better relationships. When we looked at how people changed as a result of therapy, we found that people tended to show lower levels of anxiety and depression, less fatigue and improved quality of life. Confronting mood problems and getting help is a positive step and we like to see the therapy as a first step in a journey that continues long after.

How can I access these therapies?

Make a cup of tea As the tea steeps, watch the colour of the water change, perhaps to green, light brown, or red (depending on your choice of tea). Explore the tea as if for the first time. What do you notice about the changing colour? Add the milk (if you wish) and again observe, as it mixes with the

Contact your GP or MS nurse to find out what’s available on the NHS in your area. Your local library should be able to advise you on charities that might offer therapy, or look on the British Psychological Society’s website for registered psychologists near you - www.bps.org.uk. For MBCT courses, visit www.bemindful.co.uk.

Freephone: 0800 032 3839

picture: Lesley Wheat

Living well with MS: a role for psychology?

www.mstrust.org.uk

picture: Patrick George

What is mindfulness-based cognitive therapy (MBCT)?

How can I access these therapies?

Freephone: 0800 032 3839

The transition to secondary progressive multiple sclerosis picture: Brandy

Secondary progressive MS

Studies indicate that after 20 years about half of those diagnosed with relapsing remitting MS (RRMS) will have found that the frequency of relapses has decreased but disability has gradually increased1. This is known as secondary progressive MS (SPMS). As with RRMS, people’s experience of SPMS can vary widely. Some people find that the change in disability is very gradual, whilst for others it can occur more quickly. The change to SPMS reflects changes in the damage that is being caused to nerves in the brain and spine (the central nervous system). In MS, for reasons that are not yet understood, cells in the immune system attack the layer of myelin that surrounds nerves and the oligodendrocyte cells that make and maintain the myelin. This causes inflammation around the nerves leading to the particular symptoms of MS. Once the inflammation is over, it is possible for damaged myelin to be replaced, a process known as remyelination. Over time, damaged myelin will not be repaired, leaving nerve fibres (axons) exposed and vulnerable to damage or destruction. Nerve fibres are not replaced by the body and these broken connections will lead to the gradual increase of symptoms seen in progressive MS. All of the currently available disease modifying drugs work by reducing or preventing inflammation and so are only effective in people still experiencing relapses. Research is exploring approaches to reduce the rate of progression, either by protecting the nerves (neuroprotection) or by finding ways to repair damage that has occurred (stem cells may have a role in this the MS trust is funding research in this area, see page 3), but there is much work still to be done. However, this does not mean there is no support available for people with SPMS. Management will be based on three key areas: ■ symptom management - depending on the symptom, this may involve medication, rehabilitation or a combination of the two ■ preventing complications - such as finding ways to avoid bladder infections or factors that trigger spasticity ■ promoting general health and wellbeing (see the next article)

The change of type of MS will only become apparent over time. Sometimes this can lead to differences of opinion between the person living with MS and their neurologist observing it in a clinical setting. Some people feel their MS is progressive whilst the neurologist takes a more cautious view and wishes to observe symptoms over a longer period. Similarly, some people fear their disease modifying drugs might be stopped if it is decided that they no longer have relapsing MS. Although there are potentially both positive and negative aspects to this transition, it is not unusual for people with MS to feel that progressive MS is worse than relapsing. The medical terminology is probably unhelpful in this regard. Relapsing remitting and secondary progressive simply describe the clinical nature of MS, not the experience of a person living with the condition. The fact that one follows the other does not necessarily mean that it has become worse. Some neurologists may prefer to refer to ‘active’ or ‘less active’ MS as this better reflects the experiences of the individual. For a person with RRMS, the realisation that they are moving towards a secondary progressive phase can be very challenging. Life with SPMS provides different challenges to that with RRMS, but this should not mean there is no support available. 1.Vukusic S, Confavreux C. Prognostic factors for progression of disability in the secondary progressive phase of multiple sclerosis. Journal of Neurological Science 2003;206(2):135-137.

The MS Trust wants to ensure that people with progressive MS are receiving the highest levels of care and support. We are launching an appeal to raise funds for research into the needs of people with MS as their condition progresses. The results of this research will be used to improve our resources for this group of individuals. If you would like to make a donation towards this research, please visit www.mstrust.org.uk/hope, call us on 01462 476700 or return the donation slip in the enclosed edition of Make A Difference. Thank you for your support.

www.mstrust.org.uk

Stephen Wilson, cognitive behavioural psychotherapist Wendy Hartland, MS specialist nurse, Coventry & Warwickshire NHS Trust Some people live in fear of the word ‘progression’ and for some, being told they have secondary progressive MS (SPMS) can be as much of a shock as the initial diagnosis. But it is possible to cope with the transition and still have an optimistic view of the future. The limited information on SPMS often says that onset of progression is accompanied by an increase in physical and cognitive symptoms. Treatments with disease modifying therapies may be stopped, which could result in fewer review appointments with the neurology team or a lack of continuity of care. Some people can start to feel that their MS is untreatable, as well as incurable, that they have to ‘fight for everything’, or that they are ‘out of control’. This might sound extremely daunting, and it is hardly surprising that rates of emotional distress and anxiety are considered to be greater than in other forms of MS. However, people with SPMS are often able to cope with these fearful and difficult circumstances extremely well. “The mind and body are one and should not be treated separately” - Plato Cognitive behavioural therapy (CBT) has been shown to improve the emotional problems associated with MS. Similarly, mindfulness, which encourages people to live in the moment in a non-judgmental way, has also proved beneficial and can improve quality of life (see page 6). Whether with a therapist or by following CBT and mindfulness principles oneself, there are adjustments that can be made that can make a real difference. One major way is by having a realistic attitude.

Accepting things as they are - the path to positive transition ■ Avoid spending time worrying about things that can’t be changed, but accept the situation and look for ways to adjust. ■ Try not to waste today worrying about things that may or may not happen in the future. ■ Check the accuracy of thought processes and assumptions - thoughts aren’t necessarily facts. ■ Recognise positives and avoid judging yourself too harshly.

■ Confront potentially anxious situations by thinking about: - Is the threat being over-estimated? - Is the ability to cope being under-estimated? - What could improve the situation if the worst were to happen? ■ Try to reframe things with less emotive language. Instead of thinking ‘I’m scared about...’ reframe it as ‘I’m concerned about...’ How people think or describe situations will affect the way they feel, which in turn may affect how they behave. ■ Don’t just concentrate on parts of the body that don’t work well but pay attention and be mindful of the ones that do. ■ Develop a proactive approach: - Remain socially active, maintaining interests and friendships. - Ask for information. People with knowledge and information about a situation can begin to develop and plan their own strategies for coping. - Exercise or stay as active as possible - and do the home exercises taught by a physiotherapist. - Eat well. If cooking or eating is difficult, an occupational therapist can advise on equipment or a dietitian can help with a special diet to lose or gain weight.

Knowledge is power For some people with RRMS, their condition will eventually become SPMS. If this is happening, try adopting a proactive approach to seeking out the support you need. Health care professionals, such as neurologists, MS nurses, occupational therapists and physiotherapists, can help by assessing and advising on symptoms and activities that may be more troublesome. People with SPMS are able to live well and enjoy life despite their condition. This is an abridged version of this article. The authors also took part in the chatroom Secondary progressive MS - managing the transition in May 2012. The transcript can be ordered from the back page or read online at www.mstrust.org.uk/spms-chat

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The transition to secondary progressive multiple sclerosis picture: Brandy

Secondary progressive MS

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were overwhelmed by what they termed ‘doom and gloom’, particularly from unmoderated sources on the internet.

picture: Pavlo Boyko

The information needs of people newly diagnosed

Providing practical, positive and reliable information is at the heart of the MS Trust. In the past, we have funded research into the information needed by people with MS1. Our latest project focuses on those who are newly diagnosed, their friends and family and the health professionals who support them. We wanted to understand more about what people who are newly diagnosed need and to use this to improve our services, including online and printed information, and the support our information team provides over the phone.

At diagnosis “I have an 8 year old son and I did not know what to tell him. But there were flowers all over the place and my mum was always here, and a neighbour came round as she was worried about me. I was worried he’d think I was dying. The booklet really helped him. Now he reads it and uses it as a way to talk to me.” The right information around the time of diagnosis is particularly important as many people know little or nothing about MS when they, or a loved one, are diagnosed. Alternatively, they may know someone who has MS and assume that everyone’s experience is the same. “My mum has MS so I was aware of therapy centres, but my understanding from mum, what she’d been told for 25 years, was there was nothing you could do about it.”

Gathering the information After a competitive tendering process, the MS Trust commissioned a consortium of three independent researchers. The research was overseen by a steering group composed of people with MS, people with MS in their family and health professionals with a specialist interest in MS. In February 2012, an appeal for participants was launched in Open Door and on our website. Almost 200 people got in touch. 49 people with MS who had been diagnosed in the last five years were selected to take part and also ten family members. The aim was to have a range of participants

with different types of MS, from different areas of the UK, of varying ages, gender, ethnicity and time since diagnosis. People were interviewed face to face or by telephone or took part in one of four focus groups in Edinburgh, Sheffield, Bournemouth and London. Those not selected were invited to send in their views in brief.

Overall, participants thought that information provision could include alternative and complementary approaches as long as the strength, or not, of the evidence was made clear.

“There could be more cohesion via an information pack for newly diagnosed, with local information. If you join a bank, the first thing they give you is an information pack. You still have the choice of what you want to access.”

3. Personalisation

7. Empowerment

General information has its place but information tailored towards individual needs is particularly valued. There is scope to develop ways of delivering more personalised information including through modern technologies.

Many people newly diagnosed with MS are extremely motivated to look after themselves and to take an active role in obtaining information. Information can be empowering and give people a feeling of more control. However, too much information, or information at the wrong time, can be detrimental.

Key findings MS specialist nurses and neurologists were the main providers of information to people with MS as they were most closely involved around the time of diagnosis.

“Came home and found [husband’s name] reading the MS website and he said he was really embarrassed and I said why - ‘because I’m reading the one for kids. I started with the other and couldn’t cope’.”

Seven major themes emerged from the research, each reflecting the varied needs, preferences and experiences of those newly diagnosed.

4. Format

People with long-term conditions are often described as being on an unpredictable journey. The journey may begin even before a definite diagnosis, as the possibility of MS may be suggested or presumed before a formal diagnosis is given. The experience of coming to terms with diagnosis varies and some people can feel as though they are newly diagnosed for some time. Also, information needs change over time and not always in a predictable way. People reported fluctuations in their appetite for information, ranging from going on an ‘information bender’ to avoiding all mention of MS. Different kinds of information are important at different times. This suggests that information should be offered repeatedly, in stages or layers, to allow someone to choose how much they want at any point. “At the beginning I wanted to know everything. Now I go back to it for what I need. But initially I did scare myself stupid while I was in hospital.” 2. Trust and authenticity People with MS and their families want to know that the information is reliable. The MS Trust is seen as a trusted source and its material is seen as realistic, while still offering hope. Many newly diagnosed people

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While most areas of information needs were met, at least in part, information about financial benefits and local services was not always provided comprehensively.

“The neurologist told me about the MS Trust, therefore trusted information. There are a lot of things on the internet - for example the use of spider venom - so [you] have to be careful.”

It is important that people with cognitive difficulties, such as concentration and memory, have access to appropriate information.

1. Uncertainty and change

information around the time of diagnosis and, occasionally, people received no information at all.

Many people see the internet as their natural source for information, but printed information and information given in person by a known and trusted individual remain important. “I quite like both online and booklets. I tend to look online and then order the booklet to browse through, and I put it in my MS folder. If I am just looking casually, online is great. If I want it for reference I prefer it in a folder.”

What’s next? The MS Trust is working with people with MS and health professionals to translate the findings of this research into better information for people newly diagnosed with MS in the future. More information about this research is available on our website at www.mstrust.org.uk/info-needs. The researchers’ full report is also available to download. 1. Box V, et al. Identifying information needs of people with multiple sclerosis. Nursing Times 2003; 99(49): 32-36.

Acknowledgements

Support may be needed to make use of information, for example, when choosing the most appropriate disease modifying treatment.

The Trust would like to thank the members of the MS community and health professionals who helped with this research, either by being interviewed or through membership of the steering group.

“It was ‘you pick the one you fancy and we’ll go along with it’. I felt like it is at the bank with ISAs when they say they can’t possibly recommend one!”

The MS Trust would also like to thank the Tony Bloom Charitable Trust and the generous donors and fundraisers who made this research possible.

For many people, MS is not their only concern. Information about MS needs to fit into the whole picture of their life.

If you would like to support the MS Trust by fundraising or donating, please get in touch on 01462 476700 or fundraising@mstrust.org.uk.

5. Support

6. Coordination Healthcare professionals and voluntary organisations have a major role to play in providing information to people who are newly diagnosed and to their families. This can include signposting people towards other sources of information that may be useful. There was considerable variation in people’s experience. Some people received a great deal of

Information about MS is available on our website at www.mstrust.org.uk/information. If you have a question about MS, the Information Team can be contacted on 0800 032 3839 or email infoteam@mstrust.org.uk

Freephone: 0800 032 3839

were overwhelmed by what they termed ‘doom and gloom’, particularly from unmoderated sources on the internet.

picture: Pavlo Boyko

The information needs of people newly diagnosed

Overall, participants thought that information provision could include alternative and complementary approaches as long as the strength, or not, of the evidence was made clear.

3. Personalisation

7. Empowerment

Key findings MS specialist nurses and neurologists were the main providers of information to people with MS as they were most closely involved around the time of diagnosis.

Seven major themes emerged from the research, each reflecting the varied needs, preferences and experiences of those newly diagnosed.

4. Format

www.mstrust.org.uk

While most areas of information needs were met, at least in part, information about financial benefits and local services was not always provided comprehensively.

“The neurologist told me about the MS Trust, therefore trusted information. There are a lot of things on the internet - for example the use of spider venom - so [you] have to be careful.”

It is important that people with cognitive difficulties, such as concentration and memory, have access to appropriate information.

1. Uncertainty and change

information around the time of diagnosis and, occasionally, people received no information at all.

Acknowledgements

Support may be needed to make use of information, for example, when choosing the most appropriate disease modifying treatment.

The Trust would like to thank the members of the MS community and health professionals who helped with this research, either by being interviewed or through membership of the steering group.

“It was ‘you pick the one you fancy and we’ll go along with it’. I felt like it is at the bank with ISAs when they say they can’t possibly recommend one!”

The MS Trust would also like to thank the Tony Bloom Charitable Trust and the generous donors and fundraisers who made this research possible.

For many people, MS is not their only concern. Information about MS needs to fit into the whole picture of their life.

If you would like to support the MS Trust by fundraising or donating, please get in touch on 01462 476700 or fundraising@mstrust.org.uk.

5. Support

Freephone: 0800 032 3839

to close the local Brampton branch down to cut costs. After a local appeal, over 30 people responded and we have managed to keep it going on a volunteer basis. Brampton is a very important centre as we are so close to Hadrian’s Wall. It is an extremely interesting job, as you meet such a variety of travellers, each with a story to tell.

Volunteering

Anne Radcliffe I had trained as a primary school teacher in the 80s and done a few years teaching when I met and married my husband (also a teacher, secondary range). We decided not to spend the rest of our lives teaching and in 1991, following a lot of talking and thinking, we decided to run a coffee shop on the Isle of Arran. I had always been fit and active, but in 1994 (aged 32), my right leg suddenly got weaker, and began giving way under me, so my balance became uncertain. This is not a good thing when you are trying to carry a tray of coffee cups over an uneven stone floor. I also developed a tendency to veer sideways and collide with door jambs. I had a word with my GP on Arran. He sent me up to Glasgow Infirmary for a lumbar puncture and an MRI scan. In November my GP called me in to tell me that MS had been diagnosed. Although my symptoms gradually eased off over time, we sold the coffee shop and moved back to Cumbria. My husband took up a job in the School Music Service (15 years later he is still teaching the guitar) and I started work at a local private children’s nursery. I told nobody about the MS as it was not obvious and was being no problem at all then. I even cycled into work and back, a round trip of about 18 miles. After our daughter was born in 1999, there were a couple of periods of severe double vision (so no car driving until I could get a prism fitted to the right lens in my glasses). The first time lasted about five months and my eyes suddenly changed back to normal in the space of three or four days. The second time was weird. I had given up hope and thought that I would have to wear the prism for ever, when almost a year to the day later, my vision became straight again for no apparent reason at all. It only took a day and was very strange to experience. Around five years later I began to have MS symptoms again - awful balance, very weak legs, slight incontinence. These have continued to develop and the MS is, year on year, getting slowly

worse. I can feel badly fatigued so easily now. It simply means that I have to spread the vacuuming of the house out over four different days, use a stick to walk over a few hundred metres, I can’t run or walk fast or even cycle anymore as my balance is so bad. That is the thing that I miss the most. As I haven’t the physical stamina and strength to walk around a classroom any more or to work in a shop or cafe, I thought hard as to what I could do with my time instead. I got in touch with the local Community Service Volunteers (CSV) who sent me a list of groups and businesses that were always looking for volunteers to help. I was interested in health, cancer (my brother had died of cancer when he was only 27) and children (due to my teaching experience). Within two months I was sorted, and two and a half years on I still feel immense satisfaction that I had opted to go down this route. I have the option to do volunteering full-time, but I keep two afternoons each week for the housework etc. The rest of my time is taken up with volunteering for: 1. Carlisle Carers I do two respite sits a week in people’s homes, so that the carer can have a couple of hours break. 2. Barnardo’s I hadn’t realised what a huge number of roles Barnardo’s had when I started with them. In the last year or so I have done adult literacy work, adult numeracy work (both with qualified tutors already there), lots of playgroup and nursery sessions, and most recently helping with ESOL (English as a Second or Other Language) classes. 3. Macmillan Cancer Advice and Information Centre at Carlisle Infirmary There are 12 volunteers who between them cover almost a full week, answering phone calls and letters, or just talking with people who drop in patients, friends or relatives. 4. Tourist Information Centre Carlisle TIC were thinking that they would have

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5. Marie Curie Cancer Care March is the busiest month, when the daffodil boxes appear in shops and businesses. I have done this for over seven years now, and am responsible for delivering and then collecting the boxes local to me - 25 this year. I also volunteer for supermarket collections. This year I banked over £1,800 from both the supermarket collections and all the daffodil boxes. Volunteering has changed my entire life for the better. My travel expenses are covered, so all it takes is my time, of which I have plenty now. I can wholeheartedly recommend volunteering. You can choose exactly what you want to do, and how much. I do what I do because it is all sitting down jobs with which I can cope. I have chosen the times and days that I volunteer and so it all dovetails very well. But most of all, it is so rewarding and fulfilling. I had been at the lowest point, convinced that I was worthless, useless and not needed. Now, nearly every day, someone says to me how much they value my time and input, or that I make their lives easier simply by being there. That’s a wonderful feeling to have. I also support the MS Trust with a monthly donation. They give me so much information when I need it. I read Open Door cover to cover and it’s made me see how very varied and individual people’s experiences are, and the different ways in which people can adapt and cope. I find it very heartening and it gives me much reassurance as to all the people who are going through the same things as me. I don’t feel so alone now and wish for everyone else to feel the same.

Other sources of information on volunteering UK ■ Do It www.do-it.org.uk ■ Timebank www.timebank.org.uk / 0845 456 1668

England ■ Community Service Volunteers www.csv.org.uk / 020 7278 6601 ■ Volunteering England www.volunteering.org.uk / 020 7520 8900 ■ Most English counties have a Council for Voluntary Service (CVS)

Scotland ■ Community Service Volunteers www.csv.org.uk / 0131 622 7766 ■ Volunteer Scotland www.volunteerscotland.org.uk / 01786 479593

Wales ■ Community Service Volunteers www.csv.org.uk / 02920 415 700 ■ Volunteering Wales www.volunteering-wales.net ■ Wales Council for Voluntary Action www.wcva.org.uk / 0800 2888 329

Northern Ireland ■ Volunteer Now www.volunteering-ni.org / 028 9023 2020

Could you volunteer for the MS Trust? The MS Trust is looking for volunteers to help us by raising awareness and funds in their local communities. For more information on how you can get involved, please contact Donna on 01462 476707 or fundraising@mstrust.org.uk

Freephone: 0800 032 3839

Volunteering

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Other sources of information on volunteering UK ■ Do It www.do-it.org.uk ■ Timebank www.timebank.org.uk / 0845 456 1668

Scotland ■ Community Service Volunteers www.csv.org.uk / 0131 622 7766 ■ Volunteer Scotland www.volunteerscotland.org.uk / 01786 479593

Wales ■ Community Service Volunteers www.csv.org.uk / 02920 415 700 ■ Volunteering Wales www.volunteering-wales.net ■ Wales Council for Voluntary Action www.wcva.org.uk / 0800 2888 329

Northern Ireland ■ Volunteer Now www.volunteering-ni.org / 028 9023 2020

Freephone: 0800 032 3839

state of the art - swimming pool, hydrotherapy pool, gym. More than anything else, I find my mindset is better - it keeps me feeling positive.

C2C - coast to coast or sea to sea

The challenge

Chris Kerins I’ve always been a fit guy, did lots of running, weight training, football. I first noticed something wasn’t right when I was picking up the kids from school. One foot kept tripping on the pavement, it was like I was wearing lead boots. On the football pitch it felt like there were two people - one knew what to do, the other one didn’t. When I mentioned it to my wife, she persuaded me to go to the GP. So in 2008 I was referred to the Walton Centre in Liverpool and went through all the usual tests. MRI scan showed lesions on my brain and spine but the lumbar puncture was the clincher. I was diagnosed in October that year. I was treated with mitoxantrone, but after 12 months there wasn’t much change, so I was taken off the treatment and haven’t really been on anything since. It’s mainly my walking that is affected - my left leg is a lazy bugger, making walking difficult. My left hand isn’t as strong as it used to be either. I use a stick now and move more slowly and carefully. I try to plan my routes to make sure the ground is even as I have had a few falls. I exercise as much as I can weight training in my garage, swimming. I work for the British Transport Police. I’ve been a police officer for 23 years, 14 years as a dog handler. I’m doing more desk duties now. After my diagnosis I just told senior management in the force and they’ve been very supportive from the start. I

didn’t tell anyone else. It was difficult to tell other people as I just wanted to get on with things with as little fuss as possible. But you get to the point where you have to tell people. I had a long session with a counsellor at St Andrews who was really helpful and suggested that I tell a couple of people and let the news get out that way. That’s worked really well for me. I felt a huge sense of relief after telling people. I have had tremendous support and love, not just from my wife Kathy and kids, Andrew and Libby, but from all my family and friends. St Andrews, the Police Convalescent Home in Harrogate, has helped me a lot. St Andrews is one of three police treatment centres. These are run as charities supported by voluntary donations from serving police officers. The centres offer intensive rehabilitation, physiotherapy, hydrotherapy, psychological support and counselling and stress management for serving and retired police officers who contribute to the charity. I go to St Andrews twice a year, for one or two weeks at a time. I have one-to-one sessions with the physio, go to different classes for yoga, Pilates etc and there’s plenty of opportunity to relax. The facilities are

Earlier this year, shortly after I’d gone public with my MS, my mate Richard Hague suggested we organise a fundraising event for multiple sclerosis. He’s done the famous C2C Coast-to-Coast cycle route several times (as well as lots of other tough cycle rides, triathlons etc) and we thought this would be a good challenge. A few emails later we’d assembled our team of 15 brave souls and budding cyclists - made up of police colleagues, family members and friends, with ages ranging from 66 (one of the fittest in the team) down to a sprightly 27, all from around the North West. We chose the MS Trust as we were aware of the good work they do for people with MS and their families.

Training The 140 mile Coast-to-Coast route starts in the west at Whitehaven, goes through the Lake District, up and over the Pennines - ‘the roof of England’ - and down the other side, ending in Sunderland. All in all, a spectacular route, taking in some of the most stunning sights in England, as well as some of the biggest hills! This is a challenging cycle ride, so Richard gave the riders a stiff training programme to follow. Some did it, some didn’t. Those that didn’t later wished they did!

Planning Richard sorted out the logistics of the trip with input from me at a later stage. Having done it six times already, he knew how much we could reasonably manage each day, knew the good places to stop overnight, hired the minibuses to transport equipment and organised check points along the route so we could make sure no one got lost and if necessary go back to look for stragglers.

Achieving On 11 May we set off from the beach in Whitehaven, with a quick compulsory dip of bike tyres in the sea. Day 1 allowed everyone’s legs and frame of mind to bed in. The hills were hard, the wind unreal and the guys were really struggling but they all made it and we arrived in Penrith for the night. Day 2 was epic - as we all agreed later that day over a few light ales - and the most challenging with a total of 5147ft climbing throughout the day. The high point, in more ways then one, was reaching the famous Hartside Top Café, which at 1906ft, is the highest cafe in England. A very welcome homemade rhubarb crumble and custard with a big mug of coffee topped up the fuel tanks before we set off for an overnight stop at Stanhope. After the gruelling climbs of the previous day, we all started Day 3 thinking this was just a gentle push home to the finish line. How wrong could we be? We set off into yet another series of hills, but grateful for the fact that what goes up must come down, kept going for a rapid descent into Sunderland and the big finish. Our destination, Roker Beach, for a final celebratory dip of bike tyres in the sea (and one or two of the lads jumped in too). It was an emotional time for me. I felt really proud of the guys and I would have loved to have been riding a bike myself. I was driving one of the support vehicles and it was tremendous being part of the team, but it would have been good to have been actually doing it too. Everyone managed to complete the ride with the aid of the support team. I’d like to thank everybody who took part and raised or donated funds. Wherever we stopped we collected more for the cause. Altogether we raised an amazing £4292.50 for the MS Trust. The MS Trust is looking for cyclists to take part in two fundraising rides in June and August next year: the 3 Cities cycle ride (London Amsterdam - Brussels) and the London to Paris cycle ride. Visit www.mstrust.org.uk/overseas or call 01462 476707 to find out more. We can also support you if you wish to organise your own cycle ride, so please get in touch.