MS Trust website
Order form For a full list of publications visit www.mstrust.org.uk/publications
Books Sexuality and MS - a guide for women NEW EDITION At work with MS Primary progressive MS exposed NEW Living with fatigue MS explained MS and me - a self-management guide to living with MS MS: what does it mean for me? Tips for living with MS
Exercise 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
Factsheets Regularly updated, we now have more than 20 titles available including Bladder problems Bowel problems Cognition Diet Fingolimod (Gilenya) Natalizumab (Tysabri) Spasticity and spasms Vitamin D
Publication leaflet The full list of titles available from the MS Trust All items are free unless stated, but if you would like to make a donation towards our costs, we would be very grateful
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Visit the MS Trust website to find more about multiple sclerosis
New look information pages The information section of the website has been redesigned to make it even easier to find what you need to know. ■ What is MS? - everything you need to know about MS when you have just been diagnosed ■ Symptoms and treatments - accessible information on the range of symptoms that MS can cause and the drugs and treatments that are available ■ Looking after yourself - ideas to help you manage the effects of MS yourself with exercise, diet and much more ■ Living with MS - a map of MS services showing what is available in your area and how you can make contact with the services you need. This section also includes sources of support for issues such as employment, finances, equipment and support for families. ■ Order books - the full range of MS Trust books, factsheets and DVDs. All titles can be ordered or read online. ■ Ask us - how to contact the MS Trust's personal information service, which can help you find the right information at the right time. Add the information pages to your bookmarks/ favourites today
Also on the MS Trust website MS drug treatments
Job title (if health professional)
Neurologist David Bates answers some of the most challenging questions people with MS ask about disease modifying drugs and looks at current treatments, potential new drugs and also the challenges of progressive forms of MS.
Address
www.mstrust.org.uk/information/webcast
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To get the week's news delivered straight to your inbox and receive a guide to the most recently published research visit www.mstrust.org.uk/about/keep_in_touch.jsp
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
May 2011
Inside this issue...
Welcome to the Spring Edition of Open Door
A new chapter
6
Mindfulness
8
The MS Trust is a relatively small charity, just 28 staff and one national office, and we focus on two main things: ■ Ensuring that everybody diagnosed with MS has the health information they need to manage life with MS and ■ Working to ensure services for people with MS are of an high standard and uniformly available across the UK We know there is a lot of information out there, how do you tell the good from the bad? The Department of Health devised the Information Standard quality mark as one way of ensuring information is accurate, based on good evidence, up to date and unbiased. Following a rigorous assessment process, the MS Trust was recently awarded the standard and you will soon start to see the logo on our publications and website. Our second objective revolves around the education and support work that we do with MS nurses and therapists and MS nurses are our particular focus at the moment. The MS Trust was founded in 1993 and for the last 18 years our belief has been that MS specialist nurses are vital and many people with MS have reinforced this view to us. There are currently around 240 MS nurses, not enough to support all of the 100,000 people with MS and with all the changes in the NHS at present, the numbers may go down, not up. That is why we run our MS nurse support programme providing resources, education opportunities, and mentoring for MS nurses, particularly those whose posts are under scrutiny. We are determined not to let the progress we have all made be in vain. Together we can ensure MS specialist nurses continue to provide the best care for people with MS. For more information on our support for MS nurses visit our website. Thank you for your support
12
Also inside:
Pam Macfarlane Chief Executive
Sexuality and MS: a guide for women - new edition A new edition of our award winning book Sexuality and MS: a guide for women is now available with revised text and updated resources. The book offers positive and practical advice together with experiences and tips for coping with sexual problems from women with MS. Order your copy from the back page.
www.mstrust.org.uk
Sportability
Call: 0800 032 38 39
What does policy mean 2 to people with MS? News
3
Research news
4
Relapses
10
MS awareness week 14 MS Trust website
16
What does policy mean to people with MS?
Nicola Russell, Director of Services, MS Trust In the last edition of Open Door I laid out the MS Trust views on what people with MS have a right to expect, and also what the MS Trust campaigning priorities were going to be for the coming year. As ever, no sooner had the newsletter hit your doormats than I was in receipt of an email from someone reminding me what it was really like to live with MS in the UK. It was an email which was touching in its sincerity to self manage, and also in its appeal for the system to be more helpful. It was not unique. I have had conversations with other people with MS who are also trying to live as normal a life as possible, making huge personal sacrifices and not getting the support that they deserve from the NHS or social services.
What can the MS Trust do to help? Clearly we will not be able to resolve every problem but I hope we can provide the following and I would like you to challenge us to deliver on these points: ■ We have good contacts with many of the specialist professionals. If you feel you are not getting the support you need, contact us and we will see if we can apply some additional pressure to the system. Maybe you are not even in touch with anyone, in which case we should be able to make suggestions as to how to access the right people.
■ We have just completed the third audit of MS services across England and Wales in conjunction with the Royal College of Physicians. If you took part in this audit, thank you for your time and effort. Once all the data is analysed we will be
2
News
Fingolimod licensed using the results to highlight both good and bad services, and asking questions of NHS managers and the government about inadequacies. ■ We will continue to campaign to ensure that everyone with MS has easy access to an MS specialist nurse. Currently there are about 240 MS specialist nurses but between 300-350 are needed to ensure that there is one near you, with enough time to help you get all the support you need. ■ We will continue to provide evidence based health information so that you can understand what is happening with your MS and have an effective, open dialogue with the health professionals you see. We will do this via personal telephone calls, emails, books, factsheets, newsletters and our website. ■ We will campaign with people with MS locally to ensure they get the services they need. Localisation of the NHS is now common and is likely to increase with the move to less central control. The MS Trust is certainly aware of examples currently of people with MS living in different parts of the country being able or unable to access certain treatments. Sativex and Functional Electrical Stimulation are good examples of this variation. Both these are niche products but can be of significant value to people with MS. The reasons for not funding vary and when and how to take action also varies. There is no standard campaign that fits the local variation in some areas a media campaign, or letters to MPs may work, in others a more subtle approach involving the clinicians and mangers may be most effective. Contact us if you are having access problems and we will see if we can help. It is very easy in the current climate to think that as resources are tight we have to accept a less than adequate service. This may be true up to a point but never forget that neurology still only gets approximately 3% of the NHS budget despite 10 million people having a neurological condition. Clearly there is a mismatch between 16% of the population being affected but only 3% of the resources being allocated to neurology. This is the ongoing national injustice we all need to fight.
www.mstrust.org.uk
European regulators have approved fingolimod (Gilenya) as a second line disease modifying treatment for relapsing remitting MS. Taken as a daily capsule, fingolimod has been approved for use with people who continue to have relapses or find their relapse rate has increased despite a year's treatment with one of the first line drugs (Avonex, Betaferon, Copaxone, Extavia, Rebif). It can also be used for people with rapidly evolving severe relapsing remitting MS, defined as two or more relapses a year. NICE will publish its decision on whether fingolimod should be funded by the NHS before the end of the year. Order the Fingolimod (Gilenya) factsheet from the back page
Welfare changes The Welfare Reform Bill began its progress through Parliament in February. Among the proposals are: ■ The combination of employment related benefits into the single Universal Credit ■ Reforms of Disability Living Allowance (DLA), which is to be replaced with the Personal Independence Payment (PIP) ■ Reform of the Employment and Support Allowance (ESA) The MS Trust has written to the Prime Minister to express our concerns that the changes should encourage independence and not just be a means to save money. We also share the concerns of many people with MS that the assessments for the reformed benefits will need to be sophisticated enough to cope with a fluctuating condition such as MS.
Mobility aid market study The Office of Fair Trading (OFT) is undertaking a study of the mobility aids market, which as well as wheelchairs and scooters also includes items such as stair lifts, bath aids and specialist seating.
The study asks: ■ Are consumers able to find appropriate information when buying equipment? ■ Are consumers being treated fairly by suppliers? ■ Is competition in the wheelchair market helping consumers? In replying to the consultation, the Therapists in MS group, in collaboration with the MS Trust, point out that unbiased professional advice is available from occupational therapists (OTs). However, they acknowledge barriers to this support as many people are never referred to an OT. The response expresses concerns that waiting lists or delays caused by limited resources often mean that people are not able to receive professional advice when they need it and instead rely on information from suppliers or from friends or family. NHS wheelchair clinics exist throughout the country but also often have long waiting lists for assessments. Standard wheelchairs are often not suitable for people with MS and the level of information about buying and using a wheelchair available to people on the NHS voucher scheme is inconsistent. The OFT aim to publish the market study in September 2011.
Natalizumab risk warning The MHRA - the drug safety agency - has issued an updated warning about the higher risks of PML, a serious brain infection, in people taking natalizumab (Tysabri) who have had previous immunosuppressant therapy, such as mitoxantrone or azathioprine. This is in addition to a previous warning that risk of PML increases in people who have been treated for more than two years.
Natalizumab has been prescribed to almost 80,000 people worldwide. As of March, 102 people have been affected by PML of whom 21 have died. As yet there have been no cases of PML in the UK. Order the Natalizumab (Tysabri) factsheet from the back page
Call: 0800 032 38 39
3
What does policy mean to people with MS?
Nicola Russell, Director of Services, MS Trust In the last edition of Open Door I laid out the MS Trust views on what people with MS have a right to expect, and also what the MS Trust campaigning priorities were going to be for the coming year. As ever, no sooner had the newsletter hit your doormats than I was in receipt of an email from someone reminding me what it was really like to live with MS in the UK. It was an email which was touching in its sincerity to self manage, and also in its appeal for the system to be more helpful. It was not unique. I have had conversations with other people with MS who are also trying to live as normal a life as possible, making huge personal sacrifices and not getting the support that they deserve from the NHS or social services.
What can the MS Trust do to help? Clearly we will not be able to resolve every problem but I hope we can provide the following and I would like you to challenge us to deliver on these points: ■ We have good contacts with many of the specialist professionals. If you feel you are not getting the support you need, contact us and we will see if we can apply some additional pressure to the system. Maybe you are not even in touch with anyone, in which case we should be able to make suggestions as to how to access the right people.
■ We have just completed the third audit of MS services across England and Wales in conjunction with the Royal College of Physicians. If you took part in this audit, thank you for your time and effort. Once all the data is analysed we will be
2
News
Fingolimod licensed using the results to highlight both good and bad services, and asking questions of NHS managers and the government about inadequacies. ■ We will continue to campaign to ensure that everyone with MS has easy access to an MS specialist nurse. Currently there are about 240 MS specialist nurses but between 300-350 are needed to ensure that there is one near you, with enough time to help you get all the support you need. ■ We will continue to provide evidence based health information so that you can understand what is happening with your MS and have an effective, open dialogue with the health professionals you see. We will do this via personal telephone calls, emails, books, factsheets, newsletters and our website. ■ We will campaign with people with MS locally to ensure they get the services they need. Localisation of the NHS is now common and is likely to increase with the move to less central control. The MS Trust is certainly aware of examples currently of people with MS living in different parts of the country being able or unable to access certain treatments. Sativex and Functional Electrical Stimulation are good examples of this variation. Both these are niche products but can be of significant value to people with MS. The reasons for not funding vary and when and how to take action also varies. There is no standard campaign that fits the local variation in some areas a media campaign, or letters to MPs may work, in others a more subtle approach involving the clinicians and mangers may be most effective. Contact us if you are having access problems and we will see if we can help. It is very easy in the current climate to think that as resources are tight we have to accept a less than adequate service. This may be true up to a point but never forget that neurology still only gets approximately 3% of the NHS budget despite 10 million people having a neurological condition. Clearly there is a mismatch between 16% of the population being affected but only 3% of the resources being allocated to neurology. This is the ongoing national injustice we all need to fight.
www.mstrust.org.uk
European regulators have approved fingolimod (Gilenya) as a second line disease modifying treatment for relapsing remitting MS. Taken as a daily capsule, fingolimod has been approved for use with people who continue to have relapses or find their relapse rate has increased despite a year's treatment with one of the first line drugs (Avonex, Betaferon, Copaxone, Extavia, Rebif). It can also be used for people with rapidly evolving severe relapsing remitting MS, defined as two or more relapses a year. NICE will publish its decision on whether fingolimod should be funded by the NHS before the end of the year. Order the Fingolimod (Gilenya) factsheet from the back page
Welfare changes The Welfare Reform Bill began its progress through Parliament in February. Among the proposals are: ■ The combination of employment related benefits into the single Universal Credit ■ Reforms of Disability Living Allowance (DLA), which is to be replaced with the Personal Independence Payment (PIP) ■ Reform of the Employment and Support Allowance (ESA) The MS Trust has written to the Prime Minister to express our concerns that the changes should encourage independence and not just be a means to save money. We also share the concerns of many people with MS that the assessments for the reformed benefits will need to be sophisticated enough to cope with a fluctuating condition such as MS.
Mobility aid market study The Office of Fair Trading (OFT) is undertaking a study of the mobility aids market, which as well as wheelchairs and scooters also includes items such as stair lifts, bath aids and specialist seating.
The study asks: ■ Are consumers able to find appropriate information when buying equipment? ■ Are consumers being treated fairly by suppliers? ■ Is competition in the wheelchair market helping consumers? In replying to the consultation, the Therapists in MS group, in collaboration with the MS Trust, point out that unbiased professional advice is available from occupational therapists (OTs). However, they acknowledge barriers to this support as many people are never referred to an OT. The response expresses concerns that waiting lists or delays caused by limited resources often mean that people are not able to receive professional advice when they need it and instead rely on information from suppliers or from friends or family. NHS wheelchair clinics exist throughout the country but also often have long waiting lists for assessments. Standard wheelchairs are often not suitable for people with MS and the level of information about buying and using a wheelchair available to people on the NHS voucher scheme is inconsistent. The OFT aim to publish the market study in September 2011.
Natalizumab risk warning The MHRA - the drug safety agency - has issued an updated warning about the higher risks of PML, a serious brain infection, in people taking natalizumab (Tysabri) who have had previous immunosuppressant therapy, such as mitoxantrone or azathioprine. This is in addition to a previous warning that risk of PML increases in people who have been treated for more than two years.
Natalizumab has been prescribed to almost 80,000 people worldwide. As of March, 102 people have been affected by PML of whom 21 have died. As yet there have been no cases of PML in the UK. Order the Natalizumab (Tysabri) factsheet from the back page
Call: 0800 032 38 39
3
Botox for overactive bladder
Research news
Botulinum toxin A (Botox), injected directly into the bladder wall has been found to be very effective at treating the symptoms of urgency and frequency due to overactive bladder.
Is more strenuous exercise beneficial? It is well established that exercise can be beneficial to people with MS. This study attempted to find out what level of exercise would give the most benefit. 61 participants were assigned to one of three different cycling routines for 20 minutes twice a week for 12 weeks. The distance walked in two minutes was measured at the beginning, half way through, and at the end of the study period and then 12 weeks later. All three groups had improved after six weeks of exercise and did not change significantly at further assessments. Further analysis suggested that the higher intensity cycling exercise might improve walking distance the most but that low intensity exercise seemed to be better tolerated, with fewer people dropping out or reporting leg pain. Collett J, et al. Exercise for multiple sclerosis: a single-blind randomized trial comparing three exercise intensities. Multiple Sclerosis 2011 Jan 19. [Epub ahead of print]
Stress - does it play a role in MS onset or relapses? Many people feel that stress has an impact on their health but is there evidence that it might be a trigger for MS onset or for relapses? In an attempt to answer this question, this review analysed 17 studies, five for onset and 12 for relapses. The variety of methods used to measure stress and limitations of the studies made it difficult to compare results. However, with the exception of two studies, the authors consider that there is evidence that stress can influence MS onset and trigger relapses and they encourage researchers to investigate the role of stress management techniques in people with MS. Artemiadis AK, et al. Stress as a risk factor for multiple sclerosis onset or relapse: a systematic review. Neuroepidemiology 2011;36(2):109-120.
This study recorded treatment with botulinum toxin over six years in 137 people with overactive bladder due to MS. Before the first treatment, 83% were incontinent but four weeks after treatment 76% had become completely dry. Repeat treatments are required: in this study the interval between treatments averaged 12-13 months. For most people, self-catheterisation was required. The investigators concluded that repeated botulinum toxin injections were effective at controlling overactive bladder symptoms, resulting in a lasting improvement in quality of life. Khan S, et al. Long-term effect on quality of life of repeat detrusor injections of botulinum neurotoxin-A for detrusor overactivity in patients with multiple sclerosis. Journal of Urology 2011;185(4):1344-1349.
MS and coeliac disease Coeliac disease is a gastrointestinal disorder caused by intolerance to gluten. This study looked for markers of coeliac disease in 72 people with MS and in a matched group from the general population. Evidence of coeliac disease was found in seven of the MS group (10%) compared to three of the control group (2.4%). The researchers further report that early detection and dietary treatment of coeliac disease in people with MS can result in a significant improvement in both intestinal and neurological symptoms. Rodrigo L, et al. Prevalence of celiac disease in multiple sclerosis. BMC Neurology 2011;11:31.
Access to exercise classes and gyms Although people with MS may benefit from exercise, it is not always easy to access. People might have difficulty finding appropriate gyms or staff who know about MS, have problems arranging transport or lack confidence in using facilities once they get there. Researchers at Oxford Brookes and Birmingham Universities have developed and studied a support package called the Physical Activity Support Scheme (PASS) to enable people to become more active. The system has five components; access and transport advice, the fitness instructor, the gym, health professional support and how to exercise safely. 99 people with MS and other conditions took part. Average gym attendance was one session per week for 12 weeks. Participants required an average of three one hour physiotherapy sessions
4
to achieve this. The overall cost for the support scheme was ÂŁ275. The study highlighted the positive effect of community exercise on body function, health and well-being measures. The researchers conclude that the scheme achieved comparable results to standard GP exercise referral schemes and offers a relatively cheap, practical and feasible system for supporting people who wish to make use of community exercise facilities. The Life Group, Winward C. Supporting community-based exercise in long-term neurological conditions: experience from the Long-Term Individual Fitness Enablement (LIFE) project Clinical Rehabilitation 2011 March 14. [Epub ahead of print]
Order the DVD Move it for MS from the back page or visit www.mstrust.org.uk/exercises
www.mstrust.org.uk
Vitamin D and risk of relapses after giving birth While there is a lower risk of having a relapse during the last three months of pregnancy, there is an increased risk in the months after giving birth. To determine whether low blood levels of vitamin D may contribute to this, 28 women were monitored for vitamin D levels, breastfeeding and relapses during the last three months of pregnancy and the first six months following delivery. 12 women (43%) had a relapse within six months of giving birth. Pregnancy and exclusive breastfeeding were strongly associated with low vitamin D levels. However, these lower vitamin D levels were not associated with an increased risk of MS relapses after childbirth. Langer-Gould A, et al. Vitamin D, pregnancy, breastfeeding, and postpartum multiple sclerosis relapses
Does MS affect body image? Long-term conditions are known to affect body image, but there has been little study of the impact of MS on perception of physical appearance. 40 people with MS and 28 without MS completed questionnaires assessing attractiveness and self-confidence, worries about possible physical deficits, sexual problems, and mood. Those with MS, although only mildly disabled, reported significantly higher worries about physical deficits, described a significantly worse body appraisal and significantly more sexual problems. Women with MS were mainly concerned with physical shortcomings and feelings of being less attractive, while sexual problems were of particular concern in men with MS. The researchers conclude that even those mildly affected by MS who are not markedly depressed have concerns about body image. They propose further research aimed at improving body image in people with MS, taking account of gender differences. Pfaffenberger N, et al. Impaired body image in patients with multiple sclerosis. Acta Neurologica Scandinavica 2011 Jan 4. [Epub ahead of print]
Intrathecal baclofen: an underused treatment for spasticity In high doses, oral baclofen, widely used as a treatment for spasticity, can be hard to tolerate because of side effects. A baclofen pump allows significantly lower doses to be delivered intrathecally - directly into the fluid filled space surrounding the spinal cord. An expert panel on the use of intrathecal baclofen (ITB) has concluded that ITB is underused by clinicians because the focus on disease modifying treatments can lead to neglect of symptom control, an underestimation of the impact of spasticity on quality of life, and concerns about the cost and safety of ITB. They propose that ITB should be considered before walking has been significantly affected and identify a number of measures to improve awareness of the potential of ITB therapy. Erwin A, et al. Intrathecal baclofen in multiple sclerosis: Too little, too late? Multiple Sclerosis 2011 Jan 31. [Epub ahead of print]
Archives of Neurology 2011;68:310-313.
Order the Vitamin D factsheet from the back page
Order the Spasticity and spasms factsheet from the back page
Call: 0800 032 38 39
5
Botox for overactive bladder
Research news
Botulinum toxin A (Botox), injected directly into the bladder wall has been found to be very effective at treating the symptoms of urgency and frequency due to overactive bladder.
Is more strenuous exercise beneficial? It is well established that exercise can be beneficial to people with MS. This study attempted to find out what level of exercise would give the most benefit. 61 participants were assigned to one of three different cycling routines for 20 minutes twice a week for 12 weeks. The distance walked in two minutes was measured at the beginning, half way through, and at the end of the study period and then 12 weeks later. All three groups had improved after six weeks of exercise and did not change significantly at further assessments. Further analysis suggested that the higher intensity cycling exercise might improve walking distance the most but that low intensity exercise seemed to be better tolerated, with fewer people dropping out or reporting leg pain. Collett J, et al. Exercise for multiple sclerosis: a single-blind randomized trial comparing three exercise intensities. Multiple Sclerosis 2011 Jan 19. [Epub ahead of print]
Stress - does it play a role in MS onset or relapses? Many people feel that stress has an impact on their health but is there evidence that it might be a trigger for MS onset or for relapses? In an attempt to answer this question, this review analysed 17 studies, five for onset and 12 for relapses. The variety of methods used to measure stress and limitations of the studies made it difficult to compare results. However, with the exception of two studies, the authors consider that there is evidence that stress can influence MS onset and trigger relapses and they encourage researchers to investigate the role of stress management techniques in people with MS. Artemiadis AK, et al. Stress as a risk factor for multiple sclerosis onset or relapse: a systematic review. Neuroepidemiology 2011;36(2):109-120.
This study recorded treatment with botulinum toxin over six years in 137 people with overactive bladder due to MS. Before the first treatment, 83% were incontinent but four weeks after treatment 76% had become completely dry. Repeat treatments are required: in this study the interval between treatments averaged 12-13 months. For most people, self-catheterisation was required. The investigators concluded that repeated botulinum toxin injections were effective at controlling overactive bladder symptoms, resulting in a lasting improvement in quality of life. Khan S, et al. Long-term effect on quality of life of repeat detrusor injections of botulinum neurotoxin-A for detrusor overactivity in patients with multiple sclerosis. Journal of Urology 2011;185(4):1344-1349.
MS and coeliac disease Coeliac disease is a gastrointestinal disorder caused by intolerance to gluten. This study looked for markers of coeliac disease in 72 people with MS and in a matched group from the general population. Evidence of coeliac disease was found in seven of the MS group (10%) compared to three of the control group (2.4%). The researchers further report that early detection and dietary treatment of coeliac disease in people with MS can result in a significant improvement in both intestinal and neurological symptoms. Rodrigo L, et al. Prevalence of celiac disease in multiple sclerosis. BMC Neurology 2011;11:31.
Access to exercise classes and gyms Although people with MS may benefit from exercise, it is not always easy to access. People might have difficulty finding appropriate gyms or staff who know about MS, have problems arranging transport or lack confidence in using facilities once they get there. Researchers at Oxford Brookes and Birmingham Universities have developed and studied a support package called the Physical Activity Support Scheme (PASS) to enable people to become more active. The system has five components; access and transport advice, the fitness instructor, the gym, health professional support and how to exercise safely. 99 people with MS and other conditions took part. Average gym attendance was one session per week for 12 weeks. Participants required an average of three one hour physiotherapy sessions
4
to achieve this. The overall cost for the support scheme was ÂŁ275. The study highlighted the positive effect of community exercise on body function, health and well-being measures. The researchers conclude that the scheme achieved comparable results to standard GP exercise referral schemes and offers a relatively cheap, practical and feasible system for supporting people who wish to make use of community exercise facilities. The Life Group, Winward C. Supporting community-based exercise in long-term neurological conditions: experience from the Long-Term Individual Fitness Enablement (LIFE) project Clinical Rehabilitation 2011 March 14. [Epub ahead of print]
Order the DVD Move it for MS from the back page or visit www.mstrust.org.uk/exercises
www.mstrust.org.uk
Vitamin D and risk of relapses after giving birth While there is a lower risk of having a relapse during the last three months of pregnancy, there is an increased risk in the months after giving birth. To determine whether low blood levels of vitamin D may contribute to this, 28 women were monitored for vitamin D levels, breastfeeding and relapses during the last three months of pregnancy and the first six months following delivery. 12 women (43%) had a relapse within six months of giving birth. Pregnancy and exclusive breastfeeding were strongly associated with low vitamin D levels. However, these lower vitamin D levels were not associated with an increased risk of MS relapses after childbirth. Langer-Gould A, et al. Vitamin D, pregnancy, breastfeeding, and postpartum multiple sclerosis relapses
Does MS affect body image? Long-term conditions are known to affect body image, but there has been little study of the impact of MS on perception of physical appearance. 40 people with MS and 28 without MS completed questionnaires assessing attractiveness and self-confidence, worries about possible physical deficits, sexual problems, and mood. Those with MS, although only mildly disabled, reported significantly higher worries about physical deficits, described a significantly worse body appraisal and significantly more sexual problems. Women with MS were mainly concerned with physical shortcomings and feelings of being less attractive, while sexual problems were of particular concern in men with MS. The researchers conclude that even those mildly affected by MS who are not markedly depressed have concerns about body image. They propose further research aimed at improving body image in people with MS, taking account of gender differences. Pfaffenberger N, et al. Impaired body image in patients with multiple sclerosis. Acta Neurologica Scandinavica 2011 Jan 4. [Epub ahead of print]
Intrathecal baclofen: an underused treatment for spasticity In high doses, oral baclofen, widely used as a treatment for spasticity, can be hard to tolerate because of side effects. A baclofen pump allows significantly lower doses to be delivered intrathecally - directly into the fluid filled space surrounding the spinal cord. An expert panel on the use of intrathecal baclofen (ITB) has concluded that ITB is underused by clinicians because the focus on disease modifying treatments can lead to neglect of symptom control, an underestimation of the impact of spasticity on quality of life, and concerns about the cost and safety of ITB. They propose that ITB should be considered before walking has been significantly affected and identify a number of measures to improve awareness of the potential of ITB therapy. Erwin A, et al. Intrathecal baclofen in multiple sclerosis: Too little, too late? Multiple Sclerosis 2011 Jan 31. [Epub ahead of print]
Archives of Neurology 2011;68:310-313.
Order the Vitamin D factsheet from the back page
Order the Spasticity and spasms factsheet from the back page
Call: 0800 032 38 39
5
Suddenly I was seeing a different mix of people most were retired, some were between jobs, others had health conditions or disabilities - each of them with their own story. It was a world I hadn't been aware of and hadn't expected to see for almost another 30 years, yet it was such a relief not to feel that I was an unreliable employee any more. I began to learn that although my brain had become a liability when it came to numerical matters, when I put pen to paper or fingers to keyboard, I was left with a comforting pattern of words and letters that would still be there next time I looked at them. The more I wrote, the more I wanted to write, and the better I felt about myself.
A new chapter
Leonie Martin
1991 should have been the year I left uncertainty and stigma behind. Newly married and living in a lovely, modern home in Derbyshire, I had more than I'd ever dared to hope for during my teens spent in foster care. With a secure home life and a promising career in financial services, I finally felt safe and balanced. But balanced is not a word I'd use to describe how I felt that April morning when I woke to discover that my right leg felt strangely disconnected from the rest of my body. Several weeks and many tests later, brain tumour and multiple sclerosis were ruled out; stroke was named as the likely culprit. I remember feeling bizarrely relieved - my leg was almost back to normal by then and at least our dreams of starting a family had not been shattered.
Diagnosis Eight years later, when our daughter and son were 7 and 4, I was earning a good salary as a business manager in a large secondary school. It had been such a long time since the 'leg incident' that I'd managed to bury it in the same deep recesses of my mind as my troubled childhood - which is probably why I ignored the odd sensations in my back and the tops of my legs, the stabbing pains and blurred vision in my right eye, the elusive numbers that kept moving and disappearing on my computer screen, and worst of all, the overwhelming tiredness that would take over my mind and body without warning. Fearing the stigma of 'being different' again, the only symptoms I dared to talk openly about were the problems with my vision. These ultimately forced me to seek help from my GP. I was referred to an eye specialist, and following a protracted series of tests including an MRI scan, I was finally given a diagnosis of MS in September 2000. The episode in 1991 had not been a stroke after all. At work, I tried to appear unfazed by my diagnosis. I didn't want to be treated any differently. But the act backfired: my increasing anxiety, mood swings and forgetfulness were taken out of context and resentments began to run high in my department. I tried desperately to introduce measures to help me cope better, but the following two years became a
6
relentless downhill struggle. On top of increasing cognitive problems and fatigue, I experienced frequent relapses, including double vision and vertigo, loss of sensations and dexterity in my right hand and painful trigeminal neuralgia. At home I spent evenings and weekends trying to catch up but feeling as though I was drowning. I couldn't sleep, my energy levels and mood had reached an all time low and my family life began to suffer. Unable to face the idea that I might lose my job, I slipped into depression and was signed off work. I had become so paranoid about things - just the thought of entering the school building would send me into paroxysms of anxiety and floods of tears. I was eventually retired on the grounds of ill health and simply wanted to crawl away into the woodwork where nobody would treat me like I was 'different' or a 'failure'.
Writing Over the next year, with the support of family, friends and health professionals, the fog of depression began to ease, and when I saw an advertisement for a new creative writing class near my home I plucked up the courage to register. Sitting there in that first class so many thoughts and emotions ran through my head. Would I be able to take in what the tutor was saying? Would people think I was a fraud for not being at work? Was I being deluded?
www.mstrust.org.uk
My self esteem was given an additional boost when I was invited to be the patient representative on a clinical trial researching the benefits of computerised CBT (cognitive behavioural therapy) for people with MS who experience low mood. Most of the work could be done from home, so I was able to work around my fatigue and other symptoms. The role involved a fair amount of reading, writing and feedback and I learnt a lot more about MS and how it can affect mood and emotions. At the conclusion of the pilot study my name was included as a co-author in a paper published by the journal Psychology and Health! Three years ago I was also invited to become a volunteer newsletter editor. Through this role I came into contact with many other people whose lives were affected by MS and other disabilities. Little by little, I began to feel 'normal' again. I started to submit writing to magazines and health related charity publications and received encouraging feedback. Then a friend told me about a UK publisher that was inviting submissions for a new range of health and lifestyle related essential guides - written by people with direct experience of living or working with particular conditions or issues. I thought how much I'd learnt over the previous seven years or so and decided it was worth a try. I wanted it to be the sort of easy to read book that would have helped me and those in my life at the time I was first diagnosed. I can't deny it was hard to stay focused on such a long project. I couldn't have done it without friends and family. My husband took over all the cooking and cleaning and a good friend invited me to her house for a week so I could write without distractions. Seeing the book in print was incredible. It sold over 1,000 copies nationally in the first few months and the best moment for me was when someone posted a review on my publisher's website saying, 'At last, a book about MS that's not all scientific and geeky - but not patronising either.' I've never met the lady who wrote it, but I'll always be grateful to her.
My MS continues to be unpredictable, but with disease modifying drugs and a better knowledge of how to pace myself, the relapses have reduced considerably. I'm a much happier person to be around and the only numbers I get involved with now are page numbers - I'm now working on a new book about volunteering which is due out next year. Leonie's book: Multiple sclerosis - the essential guide, can be purchased from Need2Know Books at http://tinyurl.com/need2know-ms or by ringing 01733 898103
StayingSmart Like Leonie, many people living with MS experience some problems with memory, attention span or concentration at some time. For most people these symptoms are relatively mild and like other symptoms of MS can come and go. StayingSmart - www.stayingsmart.org.uk - is a website for people who want to know (or know more) about how MS can affect thinking and build confidence in managing these problems. StayingSmart starts with everyday problems. A click on the most relevant problem, which might be memory, attention, wayfinding, finding things, language, or executive skills, will lead to information which is helpful for that type of problem and features a useful tips and tricks section where people are invited to share their own experiences. On StayingSmart, Leonie shares her experiences of losing the words during important presentations at work and stresses the importance of being positive and acknowledging success. Watch this clip at http://tinyurl.com/stayingsmart-leonie
Call: 0800 032 38 39
7
Suddenly I was seeing a different mix of people most were retired, some were between jobs, others had health conditions or disabilities - each of them with their own story. It was a world I hadn't been aware of and hadn't expected to see for almost another 30 years, yet it was such a relief not to feel that I was an unreliable employee any more. I began to learn that although my brain had become a liability when it came to numerical matters, when I put pen to paper or fingers to keyboard, I was left with a comforting pattern of words and letters that would still be there next time I looked at them. The more I wrote, the more I wanted to write, and the better I felt about myself.
A new chapter
Leonie Martin
1991 should have been the year I left uncertainty and stigma behind. Newly married and living in a lovely, modern home in Derbyshire, I had more than I'd ever dared to hope for during my teens spent in foster care. With a secure home life and a promising career in financial services, I finally felt safe and balanced. But balanced is not a word I'd use to describe how I felt that April morning when I woke to discover that my right leg felt strangely disconnected from the rest of my body. Several weeks and many tests later, brain tumour and multiple sclerosis were ruled out; stroke was named as the likely culprit. I remember feeling bizarrely relieved - my leg was almost back to normal by then and at least our dreams of starting a family had not been shattered.
Diagnosis Eight years later, when our daughter and son were 7 and 4, I was earning a good salary as a business manager in a large secondary school. It had been such a long time since the 'leg incident' that I'd managed to bury it in the same deep recesses of my mind as my troubled childhood - which is probably why I ignored the odd sensations in my back and the tops of my legs, the stabbing pains and blurred vision in my right eye, the elusive numbers that kept moving and disappearing on my computer screen, and worst of all, the overwhelming tiredness that would take over my mind and body without warning. Fearing the stigma of 'being different' again, the only symptoms I dared to talk openly about were the problems with my vision. These ultimately forced me to seek help from my GP. I was referred to an eye specialist, and following a protracted series of tests including an MRI scan, I was finally given a diagnosis of MS in September 2000. The episode in 1991 had not been a stroke after all. At work, I tried to appear unfazed by my diagnosis. I didn't want to be treated any differently. But the act backfired: my increasing anxiety, mood swings and forgetfulness were taken out of context and resentments began to run high in my department. I tried desperately to introduce measures to help me cope better, but the following two years became a
6
relentless downhill struggle. On top of increasing cognitive problems and fatigue, I experienced frequent relapses, including double vision and vertigo, loss of sensations and dexterity in my right hand and painful trigeminal neuralgia. At home I spent evenings and weekends trying to catch up but feeling as though I was drowning. I couldn't sleep, my energy levels and mood had reached an all time low and my family life began to suffer. Unable to face the idea that I might lose my job, I slipped into depression and was signed off work. I had become so paranoid about things - just the thought of entering the school building would send me into paroxysms of anxiety and floods of tears. I was eventually retired on the grounds of ill health and simply wanted to crawl away into the woodwork where nobody would treat me like I was 'different' or a 'failure'.
Writing Over the next year, with the support of family, friends and health professionals, the fog of depression began to ease, and when I saw an advertisement for a new creative writing class near my home I plucked up the courage to register. Sitting there in that first class so many thoughts and emotions ran through my head. Would I be able to take in what the tutor was saying? Would people think I was a fraud for not being at work? Was I being deluded?
www.mstrust.org.uk
My self esteem was given an additional boost when I was invited to be the patient representative on a clinical trial researching the benefits of computerised CBT (cognitive behavioural therapy) for people with MS who experience low mood. Most of the work could be done from home, so I was able to work around my fatigue and other symptoms. The role involved a fair amount of reading, writing and feedback and I learnt a lot more about MS and how it can affect mood and emotions. At the conclusion of the pilot study my name was included as a co-author in a paper published by the journal Psychology and Health! Three years ago I was also invited to become a volunteer newsletter editor. Through this role I came into contact with many other people whose lives were affected by MS and other disabilities. Little by little, I began to feel 'normal' again. I started to submit writing to magazines and health related charity publications and received encouraging feedback. Then a friend told me about a UK publisher that was inviting submissions for a new range of health and lifestyle related essential guides - written by people with direct experience of living or working with particular conditions or issues. I thought how much I'd learnt over the previous seven years or so and decided it was worth a try. I wanted it to be the sort of easy to read book that would have helped me and those in my life at the time I was first diagnosed. I can't deny it was hard to stay focused on such a long project. I couldn't have done it without friends and family. My husband took over all the cooking and cleaning and a good friend invited me to her house for a week so I could write without distractions. Seeing the book in print was incredible. It sold over 1,000 copies nationally in the first few months and the best moment for me was when someone posted a review on my publisher's website saying, 'At last, a book about MS that's not all scientific and geeky - but not patronising either.' I've never met the lady who wrote it, but I'll always be grateful to her.
My MS continues to be unpredictable, but with disease modifying drugs and a better knowledge of how to pace myself, the relapses have reduced considerably. I'm a much happier person to be around and the only numbers I get involved with now are page numbers - I'm now working on a new book about volunteering which is due out next year. Leonie's book: Multiple sclerosis - the essential guide, can be purchased from Need2Know Books at http://tinyurl.com/need2know-ms or by ringing 01733 898103
StayingSmart Like Leonie, many people living with MS experience some problems with memory, attention span or concentration at some time. For most people these symptoms are relatively mild and like other symptoms of MS can come and go. StayingSmart - www.stayingsmart.org.uk - is a website for people who want to know (or know more) about how MS can affect thinking and build confidence in managing these problems. StayingSmart starts with everyday problems. A click on the most relevant problem, which might be memory, attention, wayfinding, finding things, language, or executive skills, will lead to information which is helpful for that type of problem and features a useful tips and tricks section where people are invited to share their own experiences. On StayingSmart, Leonie shares her experiences of losing the words during important presentations at work and stresses the importance of being positive and acknowledging success. Watch this clip at http://tinyurl.com/stayingsmart-leonie
Call: 0800 032 38 39
7
A simple mindfulness exercise to try
Mindfulness training for people with multiple sclerosis and their carers
Vanessa Hope, Centre for Mindfulness Research and Practice, Bangor University Mindfulness is a skill that we all have and, like any skill, it takes practice. It involves learning to bring our full attention to our experience moment by moment in a kind and non-judgemental way so that we can be aware of what is really happening in our bodies, our minds and emotions and our environment. Mindfulness practices come from the Buddhist meditative tradition. They not only teach ways of developing calm and concentration but also ways of investigating what happens in our minds and hearts as the backdrop and driving force of our daily lives. I have taught the eight-week mindfulness programme for the last ten years to a wide variety of people including those with stress, depression and anxiety, chronic fatigue syndrome and other chronic health conditions (including some with MS) and also to carers. I therefore found it most interesting that a recent research study conducted in Switzerland by Grossman1 and colleagues suggests that there is now scientific evidence that mindfulness training may be of help to people with MS in easing fatigue and depression and improving quality of life. This is certainly my experience.
which is recommended as a treatment in the NICE Guidelines4. Another programme is the Breathworks course for people experiencing chronic pain, whose co-founder, Vidyamala Burch, has had to work with her own chronic pain for over 30 years5. More recently, developments in cognitive neuroscience have shown that mindfulness meditation can interrupt negative thinking patterns and help strengthen more positive neural pathways in our brains6. Often, when we are experiencing low mood or difficulties in our lives, we get caught up in rumination and spiral downwards in increasingly desperate thoughts and emotions. By bringing mindful awareness to our negative patterns, we can develop the ability to clearly see that we are buying into a 'story' of our own creation and to step back from it, which can prevent it from driving our lives. The same research also suggests that mindfulness helps to strengthen the immune system, which could be welcome news to anyone with a chronic illness.
www.mstrust.org.uk
Over the eight weeks of a mindfulness course, we investigate our experience in great detail, just as you did as you ate the raisin. This can help us to enjoy the pleasurable moments of our lives more fully. It also gives us the opportunity to become aware of difficult feelings and unhelpful thought patterns with the same gentle curiosity. Participants learn to incorporate mindfulness into their lives and continue to take care of themselves after the course is over.
Firstly, being more fully in the present moment helps us to step out of the regret for the past and worries about the future that are so powerful for those who have a chronic illness and those who care for them. This allows us to find joy in the simple things of life that are always available to us, such as the breeze against our skin or the sound of birdsong or the smile of a friend. This can greatly increase the quality of our life.
The growth of mindfulness training
8
The eight-week course
How mindfulness can help people with MS and their carers
So how is it that this 2,500 year old practice from an eastern tradition has found its way into modern medicine?
Mindfulness training began in the USA 35 years ago when Jon Kabat-Zinn started his MindfulnessBased Stress Reduction programme (MBSR) at a hospital in Massachusetts. Here he taught skills based on his own experience of yoga and meditation to patients whom the healthcare system was failing to help, especially those with chronic health problems2. The results, endorsed by research trials, were remarkable and the programme is now used in a variety of settings worldwide. There is also a programme in Britain adapted for people experiencingpicture: depression in the form of XhyraGraf Mindfulness-Based Cognitive Therapy (MBCT)3,
Find yourself a quiet place to sit and have with you a raisin. See if you can let go of 'knowing' that this is a raisin and see it with 'fresh' eyes, much as a child does... being, as far as possible, with the direct experience moment to moment. Bringing an attitude of curiosity and interest, slowly explore the raisin through each of your senses... seeing it from different angles, noticing how the light catches it, throws shadows on it... feeling it with your fingers... smelling it and perhaps noticing the build up of saliva as you anticipate eating it... eventually, putting it into your mouth... exploring it with your tongue and teeth... biting into it and finally chewing and tasting it... seeing how it feels to swallow... and sensing the remaining flavour once the raisin has gone. Pausing and savouring this moment before you move into the next moment of your day.
picture: Noyes
Allowing ourselves to be honestly aware of what is happening in the moment also gives us the opportunity to see things as they really are. We begin to understand ourselves better and are able to step back and look at the bigger picture. It is then possible to respond more wisely to people and to situations rather than react in habitual and often unhelpful ways.
The course also emphasises learning to take care of ourselves - recognising when we are narrowing our world and becoming isolated or when we are doing too much. For example, one participant with chronic pain learned to alert herself every half hour to do some gentle movement to stop herself becoming stiff and uncomfortable. Mindfulness helps us to know our limits and to honour our needs - a vital skill for people whose health problems leave them vulnerable to fatigue and pain.
Useful information about mindfulness Books ■ Jon Kabat-Zinn. Full catastrophe living: how to cope with stress, pain and illness using mindfulness meditation. London: Piatkus; 1996. ■ Mark Williams, et al. The mindful way through depression: freeing yourself from chronic unhappiness. New York: Guilford Press; 2007. ■ Vidyamala Burch. Living well with pain and illness: the mindful way to free yourself from suffering. London: Piatkus; 2008.
Websites ■ Mental Health Foundation mindfulness website www.bemindful.co.uk - includes details of courses around the country ■ Bangor University Centre for Mindfulness Research and Practice www.bangor.ac.uk/mindfulness ■ Mindfulness for health website www.mindfulnessforhealth.co.uk References 1. Grossman, P, et al. MS quality of life, depression, and fatigue improve after mindfulness training: a randomized trial. Neurology 2010;75(13):1141-1149. 2. Kabat-Zinn J. Full catastrophe living: how to cope with stress, pain and illness using mindfulness meditation. London: Piatkus; 1996. 3. Williams M, et al. The mindful way through depression: freeing yourself from chronic unhappiness. New York: Guilford Press; 2007. 4. National Institute for Clinical Excellence (NICE). Depression: management in primary and secondary care. Guideline 23. London: NICE; 2004. 5. Burch V. Living well with pain and illness: the mindful way to free yourself from suffering. London: Piatkus; 2008. 6. Davidson RJ, et al. Alterations in brain and immune function produced by mindfulness meditation. Psychosomatic Medicine 2003;65(4):564-570.
Call: 0800 032 38 39
9
A simple mindfulness exercise to try
Mindfulness training for people with multiple sclerosis and their carers
Vanessa Hope, Centre for Mindfulness Research and Practice, Bangor University Mindfulness is a skill that we all have and, like any skill, it takes practice. It involves learning to bring our full attention to our experience moment by moment in a kind and non-judgemental way so that we can be aware of what is really happening in our bodies, our minds and emotions and our environment. Mindfulness practices come from the Buddhist meditative tradition. They not only teach ways of developing calm and concentration but also ways of investigating what happens in our minds and hearts as the backdrop and driving force of our daily lives. I have taught the eight-week mindfulness programme for the last ten years to a wide variety of people including those with stress, depression and anxiety, chronic fatigue syndrome and other chronic health conditions (including some with MS) and also to carers. I therefore found it most interesting that a recent research study conducted in Switzerland by Grossman1 and colleagues suggests that there is now scientific evidence that mindfulness training may be of help to people with MS in easing fatigue and depression and improving quality of life. This is certainly my experience.
which is recommended as a treatment in the NICE Guidelines4. Another programme is the Breathworks course for people experiencing chronic pain, whose co-founder, Vidyamala Burch, has had to work with her own chronic pain for over 30 years5. More recently, developments in cognitive neuroscience have shown that mindfulness meditation can interrupt negative thinking patterns and help strengthen more positive neural pathways in our brains6. Often, when we are experiencing low mood or difficulties in our lives, we get caught up in rumination and spiral downwards in increasingly desperate thoughts and emotions. By bringing mindful awareness to our negative patterns, we can develop the ability to clearly see that we are buying into a 'story' of our own creation and to step back from it, which can prevent it from driving our lives. The same research also suggests that mindfulness helps to strengthen the immune system, which could be welcome news to anyone with a chronic illness.
www.mstrust.org.uk
Over the eight weeks of a mindfulness course, we investigate our experience in great detail, just as you did as you ate the raisin. This can help us to enjoy the pleasurable moments of our lives more fully. It also gives us the opportunity to become aware of difficult feelings and unhelpful thought patterns with the same gentle curiosity. Participants learn to incorporate mindfulness into their lives and continue to take care of themselves after the course is over.
Firstly, being more fully in the present moment helps us to step out of the regret for the past and worries about the future that are so powerful for those who have a chronic illness and those who care for them. This allows us to find joy in the simple things of life that are always available to us, such as the breeze against our skin or the sound of birdsong or the smile of a friend. This can greatly increase the quality of our life.
The growth of mindfulness training
8
The eight-week course
How mindfulness can help people with MS and their carers
So how is it that this 2,500 year old practice from an eastern tradition has found its way into modern medicine?
Mindfulness training began in the USA 35 years ago when Jon Kabat-Zinn started his MindfulnessBased Stress Reduction programme (MBSR) at a hospital in Massachusetts. Here he taught skills based on his own experience of yoga and meditation to patients whom the healthcare system was failing to help, especially those with chronic health problems2. The results, endorsed by research trials, were remarkable and the programme is now used in a variety of settings worldwide. There is also a programme in Britain adapted for people experiencingpicture: depression in the form of XhyraGraf Mindfulness-Based Cognitive Therapy (MBCT)3,
Find yourself a quiet place to sit and have with you a raisin. See if you can let go of 'knowing' that this is a raisin and see it with 'fresh' eyes, much as a child does... being, as far as possible, with the direct experience moment to moment. Bringing an attitude of curiosity and interest, slowly explore the raisin through each of your senses... seeing it from different angles, noticing how the light catches it, throws shadows on it... feeling it with your fingers... smelling it and perhaps noticing the build up of saliva as you anticipate eating it... eventually, putting it into your mouth... exploring it with your tongue and teeth... biting into it and finally chewing and tasting it... seeing how it feels to swallow... and sensing the remaining flavour once the raisin has gone. Pausing and savouring this moment before you move into the next moment of your day.
picture: Noyes
Allowing ourselves to be honestly aware of what is happening in the moment also gives us the opportunity to see things as they really are. We begin to understand ourselves better and are able to step back and look at the bigger picture. It is then possible to respond more wisely to people and to situations rather than react in habitual and often unhelpful ways.
The course also emphasises learning to take care of ourselves - recognising when we are narrowing our world and becoming isolated or when we are doing too much. For example, one participant with chronic pain learned to alert herself every half hour to do some gentle movement to stop herself becoming stiff and uncomfortable. Mindfulness helps us to know our limits and to honour our needs - a vital skill for people whose health problems leave them vulnerable to fatigue and pain.
Useful information about mindfulness Books ■ Jon Kabat-Zinn. Full catastrophe living: how to cope with stress, pain and illness using mindfulness meditation. London: Piatkus; 1996. ■ Mark Williams, et al. The mindful way through depression: freeing yourself from chronic unhappiness. New York: Guilford Press; 2007. ■ Vidyamala Burch. Living well with pain and illness: the mindful way to free yourself from suffering. London: Piatkus; 2008.
Websites ■ Mental Health Foundation mindfulness website www.bemindful.co.uk - includes details of courses around the country ■ Bangor University Centre for Mindfulness Research and Practice www.bangor.ac.uk/mindfulness ■ Mindfulness for health website www.mindfulnessforhealth.co.uk References 1. Grossman, P, et al. MS quality of life, depression, and fatigue improve after mindfulness training: a randomized trial. Neurology 2010;75(13):1141-1149. 2. Kabat-Zinn J. Full catastrophe living: how to cope with stress, pain and illness using mindfulness meditation. London: Piatkus; 1996. 3. Williams M, et al. The mindful way through depression: freeing yourself from chronic unhappiness. New York: Guilford Press; 2007. 4. National Institute for Clinical Excellence (NICE). Depression: management in primary and secondary care. Guideline 23. London: NICE; 2004. 5. Burch V. Living well with pain and illness: the mindful way to free yourself from suffering. London: Piatkus; 2008. 6. Davidson RJ, et al. Alterations in brain and immune function produced by mindfulness meditation. Psychosomatic Medicine 2003;65(4):564-570.
Call: 0800 032 38 39
9
If there is no infection, the new symptoms are probably due to a relapse. This will recover spontaneously over time or steroids may be given to speed up recovery. The decision whether or not to treat with steroids will be made through discussion between the person having the relapse and their health professionals.
Relapses
Steroids Fiona Barnes, MS Nurse Specialist, Southwark Provider Services
Relapses are a common feature of multiple sclerosis for many people, especially in the early stages. This article will consider what a relapse is, relapse management and how to reduce the risk of relapses.
What is a relapse?
When do relapses occur?
People call relapses by different names including an attack, a flare up, an episode or exacerbation.
Relapses are a common feature of MS, particularly early on, and the majority of people newly diagnosed with MS have relapsing remitting MS. A small number of people who have progressive MS, either primary or secondary progressive, will also have relapses.
A relapse is a sudden episode of symptoms or disability. It lasts at least 24 hours but more commonly weeks to months. To be considered a new relapse, it must occur at least 30 days since the start of a previous episode and not be caused by infection or other cause1. A relapse is caused by inflammation of the myelin covering the nerve fibres. This delays or blocks the passage of messages along the nerve fibre which in turn results in physical symptoms. The symptoms experienced depend on the area of the brain or spinal cord affected. Common symptoms are visual problems, numbness and tingling and difficulty walking. Some relapses are relatively mild while others may cause more serious problems. Symptoms similar to those of a relapse can occur when there is an infection, often a urine or respiratory infection. Always consider whether there are signs of infection, for example a cough, cold, raised temperature or chest infection. A urine infection commonly causes a worsening of MS symptoms. It may cause discoloured urine and the need to go to the toilet more frequently but sometimes is only detected when a urine sample is tested.
The regime of treatment with steroids recommended by NICE is a high dose started as soon as possible after the onset of symptoms. This is either high dose oral methylprednisolone 500mg-2g daily for three to five days or IV (intravenous) methylprednisolone 500mg-1g daily for three to five days2. Both regimes are considered equally effective and safe.
There are some potential 'triggers', for example stress or being overtired. An infection can not only cause symptoms but may subsequently trigger a relapse and so it is important to rule out infection before thinking that new symptoms are definitely due to a relapse.
The potential short-term side effects of steroids include indigestion, altered mood, altered sleep pattern, increased appetite and a metallic taste in the mouth. Special attention is needed for people who have diabetes, as there can be an increase in blood sugars, and for those with previous gastric problems who may need medication to protect the stomach. These side effects are temporary and resolve shortly after the treatment finishes. However, if repeated courses of steroids are given there is a potential risk of osteoporosis (thinning of the bones). It is recommended, therefore, that courses of steroids are limited to three a year.
The likelihood of a relapse decreases during pregnancy but this is balanced by an increased risk in the first three months after childbirth.
Steroids do not always improve symptoms and long-term recovery from a relapse is the same whether or not steroids are used.
Relapses occur spontaneously as part of the disease process. The frequency is variable - some people have several in a year whilst others have gaps of many years between relapses.
Managing relapses Different centres have different approaches to managing relapses. Following diagnosis, it is good if the person with MS is able to have a discussion with their health professionals in order to know what to do if they think they may be having a relapse. For many people their MS or neurology specialist nurse will be the first point of contact. For others it could be their neurologist or GP. Over time people often become experts in recognising relapses and knowing how they may be best managed. When new symptoms occur it is important firstly to rule out infection as the cause.If this is the case, the symptoms will improve when the infection clears.
10
When used to treat relapses, steroids reduce inflammation and therefore speed up the recovery time. They are generally used if the symptoms of the relapse are not due to infection and are affecting day to day function, for example walking or use of the hands.
www.mstrust.org.uk
Other treatments There are many other management considerations apart from possible treatment with steroids. Depending on the symptoms, their severity and how they are affecting daily life, various adjustments and equipment may be useful. For example, a mother with sensory symptoms in her hands might require help to care for her young baby and to cook. Someone experiencing problems with walking may benefit from a walking stick. It may be necessary to take some time off work and/or temporarily reduce activities. The interdisciplinary team, which might include physiotherapists, occupational therapists and/or speech and language therapists, may be able to offer help.
Recovery from a relapse Recovery occurs as inflammation subsides. There may also be repair of some of the myelin and messages re-routed to undamaged nerves. It is not possible to predict the time it will take to recover from a relapse - it could be days, weeks or many months. Whilst many relapses result in a full recovery there are some which leave lasting symptoms.
Reducing the risk of relapses In order to consider possible treatment in the future it is useful to keep a record of relapses, noting the date, symptoms, any treatments and the outcome. This will help in making decisions about whether to consider disease modifying drugs (DMDs) and, if already taking DMDs, whether they are being effective. DMDs may be considered if someone has had two or more relapses in two years. The drugs reduce the frequency and severity of relapses. Lifestyle issues are also important in reducing the risk of relapses. A well balanced diet and regular exercise will promote good health and can help reduce the risk of relapse triggers such as infection. It is recommended that people with MS have an annual flu vaccination3. In summary, relapses are a common feature of MS, particularly in the early stages. They vary enormously in how they present and affect day to day life. Recovery, either complete or partial, occurs over days to months. Management in the meantime may include some short-term lifestyle adjustments and possible treatment with steroids. References 1. McDonald WI, et al. Recommended diagnostic criteria for multiple sclerosis: guidelines from the international panel on the diagnosis of multiple sclerosis. Annals of Neurology 2001;50(1):121-127. 2. National Institute for Clinical Excellence. Multiple sclerosis: management of multiple sclerosis in primary and secondary care. Clinical Guideline 8. London: NICE; 2003. 3. Department of Health. Seasonal flu vaccination: who should have it and why (January 2011). Crown copyright 2011, produced by COI for the Department of Health.
Call: 0800 032 38 39
11
If there is no infection, the new symptoms are probably due to a relapse. This will recover spontaneously over time or steroids may be given to speed up recovery. The decision whether or not to treat with steroids will be made through discussion between the person having the relapse and their health professionals.
Relapses
Steroids Fiona Barnes, MS Nurse Specialist, Southwark Provider Services
Relapses are a common feature of multiple sclerosis for many people, especially in the early stages. This article will consider what a relapse is, relapse management and how to reduce the risk of relapses.
What is a relapse?
When do relapses occur?
People call relapses by different names including an attack, a flare up, an episode or exacerbation.
Relapses are a common feature of MS, particularly early on, and the majority of people newly diagnosed with MS have relapsing remitting MS. A small number of people who have progressive MS, either primary or secondary progressive, will also have relapses.
A relapse is a sudden episode of symptoms or disability. It lasts at least 24 hours but more commonly weeks to months. To be considered a new relapse, it must occur at least 30 days since the start of a previous episode and not be caused by infection or other cause1. A relapse is caused by inflammation of the myelin covering the nerve fibres. This delays or blocks the passage of messages along the nerve fibre which in turn results in physical symptoms. The symptoms experienced depend on the area of the brain or spinal cord affected. Common symptoms are visual problems, numbness and tingling and difficulty walking. Some relapses are relatively mild while others may cause more serious problems. Symptoms similar to those of a relapse can occur when there is an infection, often a urine or respiratory infection. Always consider whether there are signs of infection, for example a cough, cold, raised temperature or chest infection. A urine infection commonly causes a worsening of MS symptoms. It may cause discoloured urine and the need to go to the toilet more frequently but sometimes is only detected when a urine sample is tested.
The regime of treatment with steroids recommended by NICE is a high dose started as soon as possible after the onset of symptoms. This is either high dose oral methylprednisolone 500mg-2g daily for three to five days or IV (intravenous) methylprednisolone 500mg-1g daily for three to five days2. Both regimes are considered equally effective and safe.
There are some potential 'triggers', for example stress or being overtired. An infection can not only cause symptoms but may subsequently trigger a relapse and so it is important to rule out infection before thinking that new symptoms are definitely due to a relapse.
The potential short-term side effects of steroids include indigestion, altered mood, altered sleep pattern, increased appetite and a metallic taste in the mouth. Special attention is needed for people who have diabetes, as there can be an increase in blood sugars, and for those with previous gastric problems who may need medication to protect the stomach. These side effects are temporary and resolve shortly after the treatment finishes. However, if repeated courses of steroids are given there is a potential risk of osteoporosis (thinning of the bones). It is recommended, therefore, that courses of steroids are limited to three a year.
The likelihood of a relapse decreases during pregnancy but this is balanced by an increased risk in the first three months after childbirth.
Steroids do not always improve symptoms and long-term recovery from a relapse is the same whether or not steroids are used.
Relapses occur spontaneously as part of the disease process. The frequency is variable - some people have several in a year whilst others have gaps of many years between relapses.
Managing relapses Different centres have different approaches to managing relapses. Following diagnosis, it is good if the person with MS is able to have a discussion with their health professionals in order to know what to do if they think they may be having a relapse. For many people their MS or neurology specialist nurse will be the first point of contact. For others it could be their neurologist or GP. Over time people often become experts in recognising relapses and knowing how they may be best managed. When new symptoms occur it is important firstly to rule out infection as the cause.If this is the case, the symptoms will improve when the infection clears.
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When used to treat relapses, steroids reduce inflammation and therefore speed up the recovery time. They are generally used if the symptoms of the relapse are not due to infection and are affecting day to day function, for example walking or use of the hands.
www.mstrust.org.uk
Other treatments There are many other management considerations apart from possible treatment with steroids. Depending on the symptoms, their severity and how they are affecting daily life, various adjustments and equipment may be useful. For example, a mother with sensory symptoms in her hands might require help to care for her young baby and to cook. Someone experiencing problems with walking may benefit from a walking stick. It may be necessary to take some time off work and/or temporarily reduce activities. The interdisciplinary team, which might include physiotherapists, occupational therapists and/or speech and language therapists, may be able to offer help.
Recovery from a relapse Recovery occurs as inflammation subsides. There may also be repair of some of the myelin and messages re-routed to undamaged nerves. It is not possible to predict the time it will take to recover from a relapse - it could be days, weeks or many months. Whilst many relapses result in a full recovery there are some which leave lasting symptoms.
Reducing the risk of relapses In order to consider possible treatment in the future it is useful to keep a record of relapses, noting the date, symptoms, any treatments and the outcome. This will help in making decisions about whether to consider disease modifying drugs (DMDs) and, if already taking DMDs, whether they are being effective. DMDs may be considered if someone has had two or more relapses in two years. The drugs reduce the frequency and severity of relapses. Lifestyle issues are also important in reducing the risk of relapses. A well balanced diet and regular exercise will promote good health and can help reduce the risk of relapse triggers such as infection. It is recommended that people with MS have an annual flu vaccination3. In summary, relapses are a common feature of MS, particularly in the early stages. They vary enormously in how they present and affect day to day life. Recovery, either complete or partial, occurs over days to months. Management in the meantime may include some short-term lifestyle adjustments and possible treatment with steroids. References 1. McDonald WI, et al. Recommended diagnostic criteria for multiple sclerosis: guidelines from the international panel on the diagnosis of multiple sclerosis. Annals of Neurology 2001;50(1):121-127. 2. National Institute for Clinical Excellence. Multiple sclerosis: management of multiple sclerosis in primary and secondary care. Clinical Guideline 8. London: NICE; 2003. 3. Department of Health. Seasonal flu vaccination: who should have it and why (January 2011). Crown copyright 2011, produced by COI for the Department of Health.
Call: 0800 032 38 39
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Jill had heard about Sportability at her local MS drop-in group, and along with a few other daredevils decided to give it a go.
Sportability
picture: Ralph Norman
David Heard, Chief Executive of Sportability, explains how the Charity's programme of sports and challenging pursuits can impact on people's lives.
After an initial trial run, supervised one-on-one with an instructor, the group were ready to go off in convoy for an hour's motorised ramble that would take them through the apple orchards, across the wide open fields, into the woodlands and dirt tracks that make up this varied and testing terrain. A short break for lunch and the afternoon would see them out in 4x4 vehicles riding the steeps and navigating the gullies and ravines; and also in the Maxicat - a six wheel, all-terrain vehicle that drives like a tank and can even float! Jill's husband and her teenage daughter were glowing with pride (and not a little envy) when she finally got back. With a smile that could have lit up the whole of South East England, she was bubbling, “That was one of the most exhilarating and exciting things I've ever done, I can't wait to get back”. Get back she did on several more Saturdays, and now she's planning to go sailing.
Some of the participants have taken a more active role in the charity, and three of our regions are organised and run by people with MS - participants who got so hooked on the excitement that they are now helping to bring it to other people. Sophie Turley, Area Organiser for Kent & East Sussex says, “It's fantastic fun and we offer a huge variety of sport. So people can dip in and out, and participate as much, or as little, as they like. But it's also a great opportunity to meet other people with similar situations and problems and discuss issues in an informal environment.” Back at Bough Beech, Patrick, who had never been in a sailing boat before the onset of his MS, was cutting through the waves with the wind and the sun on his face, with his forgotten wheelchair marooned on the jetty. At the end of his second session of the day he was confidently manoeuvring the boat back to shore. We got him back onto dry land and a welcome cup of something hot. I waited on the jetty to thank Fleur, and it was only then that I noticed her gait. You see Fleur has, as she says, “A mild form of CP”. More importantly Fleur is not only an advanced sailing instructor, but has raced at the top level around the world, even representing GB in two world championships. The thing that all these people have in common is not their condition but their willingness to overcome that condition and try something new, exciting and different. It is the heart of the Sportability Experience. For sure it's about the fun, the social mix, new friends, new sports, new challenges and new experiences. But the best part of it is the magical ability to turn people back onto life.
Getting Patrick Woods, in his electric wheelchair, onto the jetty was no problem. Now the sailing club volunteers were busy getting him into a harness and onto the hoist. The Access two-seater dinghy had been expertly moored just below the hoist drop zone, and a smiling 'skipper', Fleur, waited patiently.
you'd never have got me into this aircraft, I would have been chicken. But strangely since I was diagnosed I have become less inhibited”.
Patrick was lowered into the vessel and helping hands saw him comfortably settled in. Then, within minutes, they were off and scything across the water on the beautiful lake at Bough Beech.
This new perspective and hunger for life had seen her, just a few weeks earlier, sky-diving with some other members of her MS group from Witney near Oxford. Now she was preparing a maiden flight, in a fragile looking microlight, that would take her some 4,000 feet above the rolling Oxfordshire countryside.
Another day at a small private airfield in Oxfordshire and Jo Hardiman was being helped into a bulky, weatherproof flying suit. She could manage, with the aid of her stick, to walk across the grass, but had to be assisted into the tiny two-seater cockpit of the aircraft for her first microlight flying experience. Jo readily admits “I used to be petrified of flying, even in a giant jumbo jet. Before my MS
In a meadow beside an orchard in the heart of Kent, Jill Cook and her friend Tracey Wakeling were seated apprehensively on quadbikes - four-wheel, all terrain motorbikes - along with eight other novice riders, receiving their safety briefing. Like Patrick and Jo, they were about to experience a Sportability event that would bring excitement and challenge into lives corralled by MS and other disabilities.
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www.mstrust.org.uk
Sportability was founded 22 years ago in an effort to get people with spinal cord injury back into sport. However, we found that the Sportability Experience was just as effective for people with other forms of paralysis and neurological deficiency, such as stroke survivors and people with MS.
As Patrick puts it, “I went out this morning as a man with MS, but I came back home a sailor.” picture: Ralph Norman
Now the charity operates in eight regions around the UK - Surrey, East Anglia, East Midlands, West Midlands, Oxfordshire, Gloucestershire & Bristol, Dorset & Hants, Kent & East Sussex and the North West. With sports as diverse as quadbiking, archery, clay pigeon shooting, sailing, canoeing, microlight flying, scuba diving, blokarting (a form of land yacht), fishing, falconry, gliding, wheelchair tennis and martial arts. Want to find the right sport or pastime for you? Staying Active is our collection of links and pages covering a wide range of sports and activities - www.mstrust.org.uk/stayactive For more information about Sportability, visit www.sportability.org.uk or contact them at info@sportability.co.uk or 0208 959 0089.
Call: 0800 032 38 39
13
Jill had heard about Sportability at her local MS drop-in group, and along with a few other daredevils decided to give it a go.
Sportability
picture: Ralph Norman
David Heard, Chief Executive of Sportability, explains how the Charity's programme of sports and challenging pursuits can impact on people's lives.
After an initial trial run, supervised one-on-one with an instructor, the group were ready to go off in convoy for an hour's motorised ramble that would take them through the apple orchards, across the wide open fields, into the woodlands and dirt tracks that make up this varied and testing terrain. A short break for lunch and the afternoon would see them out in 4x4 vehicles riding the steeps and navigating the gullies and ravines; and also in the Maxicat - a six wheel, all-terrain vehicle that drives like a tank and can even float! Jill's husband and her teenage daughter were glowing with pride (and not a little envy) when she finally got back. With a smile that could have lit up the whole of South East England, she was bubbling, “That was one of the most exhilarating and exciting things I've ever done, I can't wait to get back”. Get back she did on several more Saturdays, and now she's planning to go sailing.
Some of the participants have taken a more active role in the charity, and three of our regions are organised and run by people with MS - participants who got so hooked on the excitement that they are now helping to bring it to other people. Sophie Turley, Area Organiser for Kent & East Sussex says, “It's fantastic fun and we offer a huge variety of sport. So people can dip in and out, and participate as much, or as little, as they like. But it's also a great opportunity to meet other people with similar situations and problems and discuss issues in an informal environment.” Back at Bough Beech, Patrick, who had never been in a sailing boat before the onset of his MS, was cutting through the waves with the wind and the sun on his face, with his forgotten wheelchair marooned on the jetty. At the end of his second session of the day he was confidently manoeuvring the boat back to shore. We got him back onto dry land and a welcome cup of something hot. I waited on the jetty to thank Fleur, and it was only then that I noticed her gait. You see Fleur has, as she says, “A mild form of CP”. More importantly Fleur is not only an advanced sailing instructor, but has raced at the top level around the world, even representing GB in two world championships. The thing that all these people have in common is not their condition but their willingness to overcome that condition and try something new, exciting and different. It is the heart of the Sportability Experience. For sure it's about the fun, the social mix, new friends, new sports, new challenges and new experiences. But the best part of it is the magical ability to turn people back onto life.
Getting Patrick Woods, in his electric wheelchair, onto the jetty was no problem. Now the sailing club volunteers were busy getting him into a harness and onto the hoist. The Access two-seater dinghy had been expertly moored just below the hoist drop zone, and a smiling 'skipper', Fleur, waited patiently.
you'd never have got me into this aircraft, I would have been chicken. But strangely since I was diagnosed I have become less inhibited”.
Patrick was lowered into the vessel and helping hands saw him comfortably settled in. Then, within minutes, they were off and scything across the water on the beautiful lake at Bough Beech.
This new perspective and hunger for life had seen her, just a few weeks earlier, sky-diving with some other members of her MS group from Witney near Oxford. Now she was preparing a maiden flight, in a fragile looking microlight, that would take her some 4,000 feet above the rolling Oxfordshire countryside.
Another day at a small private airfield in Oxfordshire and Jo Hardiman was being helped into a bulky, weatherproof flying suit. She could manage, with the aid of her stick, to walk across the grass, but had to be assisted into the tiny two-seater cockpit of the aircraft for her first microlight flying experience. Jo readily admits “I used to be petrified of flying, even in a giant jumbo jet. Before my MS
In a meadow beside an orchard in the heart of Kent, Jill Cook and her friend Tracey Wakeling were seated apprehensively on quadbikes - four-wheel, all terrain motorbikes - along with eight other novice riders, receiving their safety briefing. Like Patrick and Jo, they were about to experience a Sportability event that would bring excitement and challenge into lives corralled by MS and other disabilities.
12
www.mstrust.org.uk
Sportability was founded 22 years ago in an effort to get people with spinal cord injury back into sport. However, we found that the Sportability Experience was just as effective for people with other forms of paralysis and neurological deficiency, such as stroke survivors and people with MS.
As Patrick puts it, “I went out this morning as a man with MS, but I came back home a sailor.” picture: Ralph Norman
Now the charity operates in eight regions around the UK - Surrey, East Anglia, East Midlands, West Midlands, Oxfordshire, Gloucestershire & Bristol, Dorset & Hants, Kent & East Sussex and the North West. With sports as diverse as quadbiking, archery, clay pigeon shooting, sailing, canoeing, microlight flying, scuba diving, blokarting (a form of land yacht), fishing, falconry, gliding, wheelchair tennis and martial arts. Want to find the right sport or pastime for you? Staying Active is our collection of links and pages covering a wide range of sports and activities - www.mstrust.org.uk/stayactive For more information about Sportability, visit www.sportability.org.uk or contact them at info@sportability.co.uk or 0208 959 0089.
Call: 0800 032 38 39
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MS Awareness Week events
MS Awareness Week 21 - 27 May 2011
This year the theme is Be Bold in Blue! with a number of activities taking place that you can use to raise awareness of MS. You can also raise money for the MS Trust to help us to continue providing our vital services for people affected by multiple sclerosis.
Secret Art Show: Sunday 22 May
MS Awareness Week gives us a real opportunity to help people understand what it means to have MS.
Bag a mini-masterpiece for only £45! Pieces have been contributed by people ranging from well known international artists and celebrities, right through to aspiring students. Choose your artwork online from www.mstrust.org.uk/artshop and find out if you have hit the jackpot
Photo competition: Monday 23 May Be Bold in Blue in our photo competition. Send us photos of you, your friends and family being Bold in Blue and you could be in with the chance of winning some fantastic prizes. You can submit your photos from Monday 23 May, so get snapping right away!
Share your story: Wednesday 25 May The new My Story webpages www.mstrust.org.uk/mystory - are devoted to personal stories of living with MS. Everyone's story is different and they show all aspects of life with MS, good, bad and everything in between. Some people are newly diagnosed, others have been living with MS for a long time and these are their personal reflections. Thank you to all those people who have already shared their story. This is also a place for you to share YOUR story of MS. We welcome contributions from anyone affected by MS - people with MS, partners, parents, children, carers and health professionals working with people with MS. Submit your story at www.mstrust.org.uk/mystory
How can I help raise awareness of MS? ■ Set up an information stand or hold an information event You could set up an information stand at work, in your local library, your GP’s surgery or anywhere that you think might get people's attention. We can provide you with materials and information to display. Rehabilitation Sister Angela Parker and staff at Mold Community Hospital raised awareness of MS over several years and in 2010 they were able to raise a staggering £662.52! Angela said "I think that is a remarkable amount from a community hospital. We surpassed all my expectations; the enthusiasm from the whole of the hospital was second to none." Activities included a Wii challenge, a cake stall, a waxing challenge and a guess the weight of the cake and jar of sweets competition. Angela told us, “It was wonderful to see the whole hospital and the community taking part, with staff wearing the MS Trust t-shirts all week. The bringing together of all those participating and the feeling of 'doing something good' was an experience not to miss.”
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■ Put up a poster Display the enclosed poster to help get information to the people that need it ■ Give a talk Give a talk about your experience of MS at a school, at work, to local clubs and groups such as the Women's Institute, or even to friends and family to help them understand the condition better. We can provide you with a DVD to explain the work the MS Trust carries out to support people with MS. ■ Write to your local newspaper Write a letter to the editor of your local newspaper. The local press are always looking for good letters to print, and the Letters to the Editor is a mustread section. You could share your MS story, let readers know how great your MS nurse is, or just spread some facts about MS and the help the MS Trust has to offer. ■ Get networking Why not use Facebook and Twitter to help raise awareness of MS? You could post facts about MS or turn your profile photo blue for the week to show your support. And don't forget to join the MS Trust's pages on Facebook and Twitter
www.mstrust.org.uk
Focus on work: Thursday 26 May One place where MS is not always well understood is the workplace. This is why the MS Trust is using the week to highlight work and MS. On Thursday 26 May, our website will feature people who have found innovative ways to manage the changes brought about by MS.
Work and MS chatroom Tuesday 24 May 2011, 10am to 7pm
Order the MS Trust book At work with MS from the back page
What does the Equality Act mean for me? I’m being made redundant - is it because I have MS? Should I tell my boss about my diagnosis?
Be Bold in Blue: Friday 27 May
If you have questions about work, visit the MS Trust chatroom and talk to professionals with expertise in employment issues or share thoughts and experiences with others in a similar situation.
Take part in our Be Bold in Blue fundraising day where you can do anything from holding a blue themed dress down day or party to selling blue iced cakes. Our Be Bold in Blue fundraising pack is full of blue ideas for you to get involved.
If you are unable to make it to the chatroom on the day, you can send your questions or comments in advance to info@mstrust.org.uk
For full details of all these events and more, visit the MS Awareness Week website www.mstrust.org.uk/msawareness
Call: 0800 032 38 39
15
MS Awareness Week events
MS Awareness Week 21 - 27 May 2011
This year the theme is Be Bold in Blue! with a number of activities taking place that you can use to raise awareness of MS. You can also raise money for the MS Trust to help us to continue providing our vital services for people affected by multiple sclerosis.
Secret Art Show: Sunday 22 May
MS Awareness Week gives us a real opportunity to help people understand what it means to have MS.
Bag a mini-masterpiece for only £45! Pieces have been contributed by people ranging from well known international artists and celebrities, right through to aspiring students. Choose your artwork online from www.mstrust.org.uk/artshop and find out if you have hit the jackpot
Photo competition: Monday 23 May Be Bold in Blue in our photo competition. Send us photos of you, your friends and family being Bold in Blue and you could be in with the chance of winning some fantastic prizes. You can submit your photos from Monday 23 May, so get snapping right away!
Share your story: Wednesday 25 May The new My Story webpages www.mstrust.org.uk/mystory - are devoted to personal stories of living with MS. Everyone's story is different and they show all aspects of life with MS, good, bad and everything in between. Some people are newly diagnosed, others have been living with MS for a long time and these are their personal reflections. Thank you to all those people who have already shared their story. This is also a place for you to share YOUR story of MS. We welcome contributions from anyone affected by MS - people with MS, partners, parents, children, carers and health professionals working with people with MS. Submit your story at www.mstrust.org.uk/mystory
How can I help raise awareness of MS? ■ Set up an information stand or hold an information event You could set up an information stand at work, in your local library, your GP’s surgery or anywhere that you think might get people's attention. We can provide you with materials and information to display. Rehabilitation Sister Angela Parker and staff at Mold Community Hospital raised awareness of MS over several years and in 2010 they were able to raise a staggering £662.52! Angela said "I think that is a remarkable amount from a community hospital. We surpassed all my expectations; the enthusiasm from the whole of the hospital was second to none." Activities included a Wii challenge, a cake stall, a waxing challenge and a guess the weight of the cake and jar of sweets competition. Angela told us, “It was wonderful to see the whole hospital and the community taking part, with staff wearing the MS Trust t-shirts all week. The bringing together of all those participating and the feeling of 'doing something good' was an experience not to miss.”
14
■ Put up a poster Display the enclosed poster to help get information to the people that need it ■ Give a talk Give a talk about your experience of MS at a school, at work, to local clubs and groups such as the Women's Institute, or even to friends and family to help them understand the condition better. We can provide you with a DVD to explain the work the MS Trust carries out to support people with MS. ■ Write to your local newspaper Write a letter to the editor of your local newspaper. The local press are always looking for good letters to print, and the Letters to the Editor is a mustread section. You could share your MS story, let readers know how great your MS nurse is, or just spread some facts about MS and the help the MS Trust has to offer. ■ Get networking Why not use Facebook and Twitter to help raise awareness of MS? You could post facts about MS or turn your profile photo blue for the week to show your support. And don't forget to join the MS Trust's pages on Facebook and Twitter
www.mstrust.org.uk
Focus on work: Thursday 26 May One place where MS is not always well understood is the workplace. This is why the MS Trust is using the week to highlight work and MS. On Thursday 26 May, our website will feature people who have found innovative ways to manage the changes brought about by MS.
Work and MS chatroom Tuesday 24 May 2011, 10am to 7pm
Order the MS Trust book At work with MS from the back page
What does the Equality Act mean for me? I’m being made redundant - is it because I have MS? Should I tell my boss about my diagnosis?
Be Bold in Blue: Friday 27 May
If you have questions about work, visit the MS Trust chatroom and talk to professionals with expertise in employment issues or share thoughts and experiences with others in a similar situation.
Take part in our Be Bold in Blue fundraising day where you can do anything from holding a blue themed dress down day or party to selling blue iced cakes. Our Be Bold in Blue fundraising pack is full of blue ideas for you to get involved.
If you are unable to make it to the chatroom on the day, you can send your questions or comments in advance to info@mstrust.org.uk
For full details of all these events and more, visit the MS Awareness Week website www.mstrust.org.uk/msawareness
Call: 0800 032 38 39
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MS Trust website
Order form For a full list of publications visit www.mstrust.org.uk/publications
Books Sexuality and MS - a guide for women NEW EDITION At work with MS Primary progressive MS exposed NEW Living with fatigue MS explained MS and me - a self-management guide to living with MS MS: what does it mean for me? Tips for living with MS
Exercise 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
Factsheets Regularly updated, we now have more than 20 titles available including Bladder problems Bowel problems Cognition Diet Fingolimod (Gilenya) Natalizumab (Tysabri) Spasticity and spasms Vitamin D
Publication leaflet The full list of titles available from the MS Trust All items are free unless stated, but if you would like to make a donation towards our costs, we would be very grateful
I enclose a cheque payable to the MS Trust If you Gift Aid your donation, we can reclaim the tax! I would like the MS Trust to treat this donation and all donations I have made for the four years prior to this year and all donations I make from the date of this declaration until I notify you otherwise, as Gift Aid donations.
Signed
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Visit the MS Trust website to find more about multiple sclerosis
New look information pages The information section of the website has been redesigned to make it even easier to find what you need to know. ■ What is MS? - everything you need to know about MS when you have just been diagnosed ■ Symptoms and treatments - accessible information on the range of symptoms that MS can cause and the drugs and treatments that are available ■ Looking after yourself - ideas to help you manage the effects of MS yourself with exercise, diet and much more ■ Living with MS - a map of MS services showing what is available in your area and how you can make contact with the services you need. This section also includes sources of support for issues such as employment, finances, equipment and support for families. ■ Order books - the full range of MS Trust books, factsheets and DVDs. All titles can be ordered or read online. ■ Ask us - how to contact the MS Trust's personal information service, which can help you find the right information at the right time. Add the information pages to your bookmarks/ favourites today
Also on the MS Trust website MS drug treatments
Job title (if health professional)
Neurologist David Bates answers some of the most challenging questions people with MS ask about disease modifying drugs and looks at current treatments, potential new drugs and also the challenges of progressive forms of MS.
Address
www.mstrust.org.uk/information/webcast
You must pay an amount of Income Tax and/or Capital Gains Tax in each tax year (6 April 2011 to 5 April 2012) at least equal to the tax that the MS Trust will claim from HM Revenue and Customs on your Gift Aid donation(s) for that tax year. Please notify us if you change your name or address.
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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
To get the week's news delivered straight to your inbox and receive a guide to the most recently published research visit www.mstrust.org.uk/about/keep_in_touch.jsp
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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www.mstrust.org.uk
May 2011
Inside this issue...
Welcome to the Spring Edition of Open Door
A new chapter
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Mindfulness
8
The MS Trust is a relatively small charity, just 28 staff and one national office, and we focus on two main things: ■ Ensuring that everybody diagnosed with MS has the health information they need to manage life with MS and ■ Working to ensure services for people with MS are of an high standard and uniformly available across the UK We know there is a lot of information out there, how do you tell the good from the bad? The Department of Health devised the Information Standard quality mark as one way of ensuring information is accurate, based on good evidence, up to date and unbiased. Following a rigorous assessment process, the MS Trust was recently awarded the standard and you will soon start to see the logo on our publications and website. Our second objective revolves around the education and support work that we do with MS nurses and therapists and MS nurses are our particular focus at the moment. The MS Trust was founded in 1993 and for the last 18 years our belief has been that MS specialist nurses are vital and many people with MS have reinforced this view to us. There are currently around 240 MS nurses, not enough to support all of the 100,000 people with MS and with all the changes in the NHS at present, the numbers may go down, not up. That is why we run our MS nurse support programme providing resources, education opportunities, and mentoring for MS nurses, particularly those whose posts are under scrutiny. We are determined not to let the progress we have all made be in vain. Together we can ensure MS specialist nurses continue to provide the best care for people with MS. For more information on our support for MS nurses visit our website. Thank you for your support
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Also inside:
Pam Macfarlane Chief Executive
Sexuality and MS: a guide for women - new edition A new edition of our award winning book Sexuality and MS: a guide for women is now available with revised text and updated resources. The book offers positive and practical advice together with experiences and tips for coping with sexual problems from women with MS. Order your copy from the back page.
www.mstrust.org.uk
Sportability
Call: 0800 032 38 39
What does policy mean 2 to people with MS? News
3
Research news
4
Relapses
10
MS awareness week 14 MS Trust website
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