Order form For a full list of publications visit www.mstrust.org.uk/publications
DVDs Move it for MS – a DVD of exercises for people with MS (£1) Also visit the Exercises for people with MS pages at www.mstrust.org.uk/exercises
Books Sex and MS - a guide for men NEW Sexuality and MS - a guide for women UPDATED 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
Factsheets Regularly updated, we now have more than 20 titles available including Fampridine NEW Fingolimod (Gilenya) Natalizumab (Tysabri) Spasticity and spasms Vitamin D FES Stem cells
Publication leaflet The full list of titles available from the MS Trust Exercise & MS - resources for people with MS and their health professionals 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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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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The Information Standard What is it and how will it make a difference to me? It is said that there is more information in one issue of the Sunday Times than a medieval scholar would have come across in a lifetime. There are over 50,000 producers of health and social care information in the UK alone and typing ‘multiple sclerosis’ into Google produces more than 8 million results. In all of this, how easy is it to judge what information is accurate, based on good evidence, up-to-date and unbiased? The Information Standard was devised by the Department of Health to allow people to do just this. Information providers who meet the Standard have demonstrated how information fits into the aims of the organisation, how evidence for a particular publication is identified and assessed and how the target audience and expert reviewers are included in developing information. High quality information is key to the successful management of MS. It has been shown to increase confidence and involvement in making decisions, reduce isolation and anxiety and improve clinical outcomes. Now there is an easy way to recognise health information you can trust. Evidence based information has been at the heart of the MS Trust's work since our foundation in 1993 and so we are delighted to have been certified to carry The Information Standard quality mark. You will soon see this on our publications and website pages. The assessment process is rigorous and will be ongoing, but we believe it will help us to ensure that the information we produce is accurate, evidence based and relevant to people living with MS. Would you like work with the MS Trust in developing information resources? To find out more and join our readers' panel email info@mstrust.org.uk or call the information team on 01462 476700
Return to: MS Trust, Spirella Building, Letchworth Garden City, Herts, SG6 4ET
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
August 2011
Inside this issue...
Welcome to the summer edition of Open Door
Oral MS drugs
Improving services for people with MS is one of our main aims and that comes from the education and support work we do with MS nurses and therapists and the research we commission. We have just completed our third audit of MS services in England and Wales against the NICE MS Management Guidelines. As well as people with MS, the audit collected data from those organisations who commission, provide, and monitor MS services and this time we included GPs, who will have a much bigger role in commissioning in the future. The audit is carried out in partnership with the Royal College of Physicians (RCP), where analysis is underway and the full results will be published in September. Thanks to all of you who took the trouble to take part, especially as there were some problems with the RCP survey website.
6
My Story
10
MS Trust comes of age!
12
As you can see below, we have recently launched Sex and MS a guide for men, along with an updated version of Sexuality and MS for women. Sex is not an easy topic to talk about, so our sincere thanks must go to everyone who has shared their experiences for these books and to our contributors on pages 8 & 9. We have been overwhelmed with the response to My Story on our website, from both authors and readers. Here we feature just three stories of MS from different perspectives, but there are many more personal reflections on the website and thank you to everyone who has contributed. As it’s August, it must be Christmas catalogue time and as usual we offer free post and packing during this month. Very best wishes and thank you for supporting our work.
Pam Macfarlane Chief Executive
Also inside:
New books on sex and MS The MS Trust's latest books are Sex and MS: a guide for men and a revised version of Sexuality and MS: a guide for women. Both books give a frank explanation of symptoms and a guide to treatment and management. The intention is to help people talk about their concerns, not only to healthcare professionals but also to their partners and friends. For more about the books see pages 8 and 9.
www.mstrust.org.uk
Call: 0800 032 3839
MS and access to services
2
News
3
Research news
4
Men, MS and sex
8
Me, MS and my sexuality
9
Supporting the MS Trust
14
MS and access to services
Nicola Russell, Director of Services, MS Trust In the last two editions of Open Door I have been encouraging people to contact us if they are having trouble accessing services that would help them manage their MS. Two topics have dominated the replies I have received - an inability to get funding for Functional Electrical Stimulation (FES); and a lack of support for the prescribing of Sativex for the treatment of spasticity. We are not talking about large numbers of people with MS needing either FES or Sativex. However, those people who have been assessed and had the treatments suggested as appropriate should be able to get funding and access without delay. Recently there were a couple of rays of hope which go some way to convincing me that persistence can bring about results. â– The East Midlands Specialised Commissioning Group, which had produced a negative recommendation for FES, has put that recommendation on hold (see page 3). â– A person from Devon took the time to write to me to tell me that they had been funded for Sativex after quite a long fight. In both cases the MS Trust had been campaigning on the basis of a specialist assessment and then a need for the primary care trust (PCT) to fund. Increasingly it seems to us that there is a complete inconsistency between rhetoric and practice. On the one hand, governments (of any persuasion) talk of putting people at the centre of the NHS. On the other, local NHS managers make financial decisions that are totally divorced from people's needs and taken without any knowledge of what it is like to live with multiple sclerosis.
integrated services providing appropriate, good quality care at every stage of their disease. People with a condition such as MS should not have to fight for everything they need, and they should be supported for making an effort, not penalised. 3. To ensure that continuity exists between specialist interventions and general management. The move for more services to be provided locally can make specialist interventions more difficult. 4. To ensure that people with MS can access the drugs and treatments that they clinically require. Across England at present significant resources are being spent in each PCT second guessing decisions that have been made by the Medicines and Healthcare products Regulatory Agency (MHRA) and NICE (National Institute for Health and Clinical Excellence). The coalition government should not tolerate this waste of resources. We have now seen the recommendations from the NHS Future Forum and the government response. On the positive side: commissioning will now include input from consultants and nurses, joined up services are featured and NICE will retain responsibility for advice on drug availability. On the negative side the word neurology still does not appear! When I get depressed about lack of progress I remind myself that if we never fought for anything services for MS would still be where they were in the early 1990s. At that time there were no drug therapies and only three MS specialist nurses. What a long way we have come. There are now 240 MS specialist nurses and a number of drug therapies available. But there is no room for complacency, campaigning will have to continue for some time yet.
During the recent listening exercise about the changes to the NHS in England the MS Trust called upon the coalition government to make the following commitments: 1. To ensure that neurological conditions are specifically mentioned and thus treated as important by commissioning groups. 2. To ensure that people with MS have access to fully
2
www.mstrust.org.uk
News
Neurology services not meeting needs
NICE guideline revision
A report by the Royal College of Physicians (RCP) and the Association of British Neurologists describes neurology services in the UK as poorly organised and not meeting people's needs. Neurological conditions cause disability in one in 50 people and make up about 10% of GP consultations and emergency medical admissions. However, the UK has just one neurologist per 125,000 people compared to one per 40,000 in the US and the rest of Europe. Services have mainly developed around large regional neurosciences centres, which has left local district general hospital services undertrained and understaffed. Many people are unable to access the right specialist at the right time and, if admitted urgently to hospital because of their condition, are rarely seen by a specialist neurologist. Recommendations include improving integration of local services and regional centres of excellence and a significant increase in the number of neurologists. Royal College of Physicians (RCP), Association of British Neurologists.Local adult neurology services for the next decade.London: RCP; 2011.
Conditional approval for fampridine Fampridine (Fampyra), a drug that can improve walking in MS, has been granted a conditional licence by the European Medicines Agency (EMA). The licence is conditional on results from an ongoing study of long-term efficacy and safety. Order the MS Trust's Fampridine factsheet from the back page
MS record breakers The Guinness World Record for 'the greatest distance covered by a motorised wheelchair or mobility scooter' has been set by the Red Wheelies scooter formation display team. The Red Wheelies, a team of women with MS from Kent, covered 154 miles in 24 hours over the weekend of 14/15 May.
The National Institute for Health and Clinical Excellence (NICE) has begun updating the clinical guideline for the management of MS. Originally published in 2003, the development of the guideline involved an extensive review of evidence and defined a reasonable level of care that people with MS should expect from the NHS in England. Since publication, there have been a number of advances in the management of MS that need to be assessed. NICE has suspended plans for a separate Technology Appraisal of Sativex, licensed as an add on therapy for spasticity. This will be incorporated into the guideline review. Since 2006 the MS Trust and the RCP have conducted three audits of how MS services have adopted the NICE guideline - the results of the third audit will be published soon.
NICE guidance on CCSVI NICE has begun to consider guidance on treatment for CCSVI, a narrowing in veins that it is suggested might affect MS symptoms. Provisional recommendations are being drawn up that will be put out to consultation in August and September before final guidance is issued by the end of the year. To contribute to the consultation visit NICE's website - http://guidance.nice.org.uk/IP/891
FES funding A decision to restrict funding for FES (functional electrical stimulation) by East Midlands Specialised Commissioning has been put on hold. The decision means that if a physiotherapist feels FES is suitable, people in the East Midlands can apply to have their treatment funded by their PCT. Order the FES factsheet from the back page and see the map of FES clinics at http://tinyurl.com/map-fes-clinics
Call: 0800 032 3839
3
MS and access to services
Nicola Russell, Director of Services, MS Trust In the last two editions of Open Door I have been encouraging people to contact us if they are having trouble accessing services that would help them manage their MS. Two topics have dominated the replies I have received - an inability to get funding for Functional Electrical Stimulation (FES); and a lack of support for the prescribing of Sativex for the treatment of spasticity. We are not talking about large numbers of people with MS needing either FES or Sativex. However, those people who have been assessed and had the treatments suggested as appropriate should be able to get funding and access without delay. Recently there were a couple of rays of hope which go some way to convincing me that persistence can bring about results. â– The East Midlands Specialised Commissioning Group, which had produced a negative recommendation for FES, has put that recommendation on hold (see page 3). â– A person from Devon took the time to write to me to tell me that they had been funded for Sativex after quite a long fight. In both cases the MS Trust had been campaigning on the basis of a specialist assessment and then a need for the primary care trust (PCT) to fund. Increasingly it seems to us that there is a complete inconsistency between rhetoric and practice. On the one hand, governments (of any persuasion) talk of putting people at the centre of the NHS. On the other, local NHS managers make financial decisions that are totally divorced from people's needs and taken without any knowledge of what it is like to live with multiple sclerosis.
integrated services providing appropriate, good quality care at every stage of their disease. People with a condition such as MS should not have to fight for everything they need, and they should be supported for making an effort, not penalised. 3. To ensure that continuity exists between specialist interventions and general management. The move for more services to be provided locally can make specialist interventions more difficult. 4. To ensure that people with MS can access the drugs and treatments that they clinically require. Across England at present significant resources are being spent in each PCT second guessing decisions that have been made by the Medicines and Healthcare products Regulatory Agency (MHRA) and NICE (National Institute for Health and Clinical Excellence). The coalition government should not tolerate this waste of resources. We have now seen the recommendations from the NHS Future Forum and the government response. On the positive side: commissioning will now include input from consultants and nurses, joined up services are featured and NICE will retain responsibility for advice on drug availability. On the negative side the word neurology still does not appear! When I get depressed about lack of progress I remind myself that if we never fought for anything services for MS would still be where they were in the early 1990s. At that time there were no drug therapies and only three MS specialist nurses. What a long way we have come. There are now 240 MS specialist nurses and a number of drug therapies available. But there is no room for complacency, campaigning will have to continue for some time yet.
During the recent listening exercise about the changes to the NHS in England the MS Trust called upon the coalition government to make the following commitments: 1. To ensure that neurological conditions are specifically mentioned and thus treated as important by commissioning groups. 2. To ensure that people with MS have access to fully
2
www.mstrust.org.uk
News
Neurology services not meeting needs
NICE guideline revision
A report by the Royal College of Physicians (RCP) and the Association of British Neurologists describes neurology services in the UK as poorly organised and not meeting people's needs. Neurological conditions cause disability in one in 50 people and make up about 10% of GP consultations and emergency medical admissions. However, the UK has just one neurologist per 125,000 people compared to one per 40,000 in the US and the rest of Europe. Services have mainly developed around large regional neurosciences centres, which has left local district general hospital services undertrained and understaffed. Many people are unable to access the right specialist at the right time and, if admitted urgently to hospital because of their condition, are rarely seen by a specialist neurologist. Recommendations include improving integration of local services and regional centres of excellence and a significant increase in the number of neurologists. Royal College of Physicians (RCP), Association of British Neurologists.Local adult neurology services for the next decade.London: RCP; 2011.
Conditional approval for fampridine Fampridine (Fampyra), a drug that can improve walking in MS, has been granted a conditional licence by the European Medicines Agency (EMA). The licence is conditional on results from an ongoing study of long-term efficacy and safety. Order the MS Trust's Fampridine factsheet from the back page
MS record breakers The Guinness World Record for 'the greatest distance covered by a motorised wheelchair or mobility scooter' has been set by the Red Wheelies scooter formation display team. The Red Wheelies, a team of women with MS from Kent, covered 154 miles in 24 hours over the weekend of 14/15 May.
The National Institute for Health and Clinical Excellence (NICE) has begun updating the clinical guideline for the management of MS. Originally published in 2003, the development of the guideline involved an extensive review of evidence and defined a reasonable level of care that people with MS should expect from the NHS in England. Since publication, there have been a number of advances in the management of MS that need to be assessed. NICE has suspended plans for a separate Technology Appraisal of Sativex, licensed as an add on therapy for spasticity. This will be incorporated into the guideline review. Since 2006 the MS Trust and the RCP have conducted three audits of how MS services have adopted the NICE guideline - the results of the third audit will be published soon.
NICE guidance on CCSVI NICE has begun to consider guidance on treatment for CCSVI, a narrowing in veins that it is suggested might affect MS symptoms. Provisional recommendations are being drawn up that will be put out to consultation in August and September before final guidance is issued by the end of the year. To contribute to the consultation visit NICE's website - http://guidance.nice.org.uk/IP/891
FES funding A decision to restrict funding for FES (functional electrical stimulation) by East Midlands Specialised Commissioning has been put on hold. The decision means that if a physiotherapist feels FES is suitable, people in the East Midlands can apply to have their treatment funded by their PCT. Order the FES factsheet from the back page and see the map of FES clinics at http://tinyurl.com/map-fes-clinics
Call: 0800 032 3839
3
Risk of MS: sunlight and EBV Why do some people get MS and not others? A recent study suggests that the combination of a common virus and low levels of sunlight may increase the risk. Researchers examined hospital admissions for the seven years up to 2005 for people with MS and also for people who had had glandular fever, which is caused by EBV (Epstein Barr virus). They compared this information with data on sunlight levels, particularly the UVB component. They found that the UVB levels in sunlight explained 61% of the difference between high and low rates of MS across the country. Combining this with glandular fever increased this to 72%. UVB is involved in making vitamin D in the skin when exposed to sunlight. Consequently, lower vitamin D levels seem the most likely reason for the link between low UVB in sunlight and increased risk of MS. Further research is needed to determine how vitamin D and EBV might interact to alter the risk of MS. Ramagopalan SV, et al. Relationship of UV exposure to prevalence of multiple sclerosis in England. Neurology 2011;76(16):1410-1414.
Broken bones risk People with MS have a greater risk of falling and a lower bone density than most people. This study examined whether this gave them a greater risk of bone fractures. Researchers found that there was an almost three fold increased risk of hip fracture and a 1.4-fold increase in the risk of fracture associated with osteoporosis. The risk was greatest for anyone who had been taking steroids or antidepressants in the previous six months or who was over 60 years old. Bazelier MT, et al. The risk of fracture in patients with multiple sclerosis: the UK general practice research database. Journal of Bone and Mineral Research 2011 May 6. [Epub ahead of print]
The MS Trust is involved in the development of guidelines for the management of osteoporosis in MS. Specialists in biomedicine, bone medicine and rheumatology together with MS specialists will be meeting to draw up a consensus document on best practice.
Heat and MS symptoms Many people with MS find that heat causes their symptoms, especially fatigue, to get worse. Of the 256 people with MS in Sweden who responded to a questionnaire, 58% reported heat sensitivity. It affected not only their fatigue but also pain, urinary urgency and cognitive problems such as concentration and memory. The researchers concluded that heat sensitivity is a key symptom in MS. More work is required to understand what causes it and to find ways to treat it. Flensner G, et al. Sensitivity to heat in MS patients: a factor strongly influencing symptomology an explorative survey. BMC Neurology 2011;11:27.
Alfred Hermida
4
Sativex for spasticity
Restless leg syndrome
Research news
www.mstrust.org.uk
Restless leg syndrome (RLS) is a neurological disorder where there is an irritating, non-painful sensation in the legs and an uncontrollable urge to move them. Symptoms occur, or are worse, when resting and particularly from the evening onwards making sleep difficult. In a Brazilian study, 80 people with MS and 180 people without MS were assessed for symptoms and the severity of any RLS. They found that RLS was more common and frequently more severe in people with MS. They also compared their results with previous studies and concluded that there was a four fold higher chance of having RLS for people with MS. Fragoso YD, et al. Restless legs syndrome and multiple sclerosis: a Brazilian multicenter study and meta-analysis of the literature. Arquivos de Neuro-psiquiatria 201;69(2):180-183.
Long-term effects of stem cell treatment There has been much media interest in stem cell treatments, which can give the impression that an effective therapy is close. In reality, stem cell research is in its infancy and the longer-term effects are unknown. In this study, 35 people had their bone marrow stem cells extracted, treated and then re-infused after chemotherapy had suppressed their immune system. It was hoped that the treated stem cells would reboot the immune system. Recipients were followed for between two and 15 years. The results were mixed. 16 people improved by an average of one point on the EDSS disability scale, with improvements lasting for an average of two years. For two of these people improvement lasted for over seven years. Seven people worsened during follow-up but remained better than their disability level at the start of treatment. Seven others only worsened and two died as a result of the treatment. Those who had evidence of active MS on MRI scans benefitted most. Other groups responding more favourably were younger people (35 years or less), those with recent diagnoses, and those with highly inflammatory MS. People with progressive MS responded less favourably. This is the only study to look at the effects of stem cell treatment in the longer-term. Although there are some promising results, the therapy is still under development. Fassas A et al. Long-term results of stem cell transplantation for MS: A single-center experience. Neurology 2011;76(12):1066-1070.
Spasticity is a common symptom in MS. Sativex, a cannabis-based mouth spray, has been licensed as an add on treatment for spasticity if other treatments have not worked or the side effects are unbearable. In a phase III trial, 572 people took Sativex for four weeks. 241 people who responded to the drug went on to the second stage where they received either Sativex or placebo for 12 weeks. Those taking Sativex showed a highly significant improvement in spasticity compared to those taking placebo. Use of Sativex is currently limited to those people who respond to the first four weeks of treatment and this study confirms that this is appropriate. Novotna A, et al. A randomized, double-blind, placebo-controlled, parallel-group, enriched-design study of nabiximols (Sativex), as add-on therapy, in subjects with refractory spasticity caused by multiple sclerosis. European Journal of Neurology 2011 Mar 1 [Epub ahead of print]
Can vaccines trigger MS? There has been concern that vaccinations could increase the risk of developing MS or increase the risk of relapses. Vaccinations are important, not only to protect from infections in this country, but also to protect us on holidays abroad. This makes it important to know if there is any particular risk associated with MS. In a recent investigation, the results of previous studies were combined to allow a more powerful analysis. It was shown that there was: ■ no significant change in the risk of developing MS after vaccination for BCG, hepatitis B, influenza, MMR, polio or typhoid fever ■ decreased risk of developing MS following diphtheria or tetanus immunisations ■ no change in risk of MS relapse following influenza immunization. These results support the NICE guidelines which recommend that people with MS should have all the vaccinations that are required both for the UK and when travelling abroad. Farez MF, Correale J. Immunizations and risk of multiple sclerosis: systematic review and meta-analysis. Journal of Neurology 2011 Mar 24. [Epub ahead of print]
Call: 0800 032 3839
5
Risk of MS: sunlight and EBV Why do some people get MS and not others? A recent study suggests that the combination of a common virus and low levels of sunlight may increase the risk. Researchers examined hospital admissions for the seven years up to 2005 for people with MS and also for people who had had glandular fever, which is caused by EBV (Epstein Barr virus). They compared this information with data on sunlight levels, particularly the UVB component. They found that the UVB levels in sunlight explained 61% of the difference between high and low rates of MS across the country. Combining this with glandular fever increased this to 72%. UVB is involved in making vitamin D in the skin when exposed to sunlight. Consequently, lower vitamin D levels seem the most likely reason for the link between low UVB in sunlight and increased risk of MS. Further research is needed to determine how vitamin D and EBV might interact to alter the risk of MS. Ramagopalan SV, et al. Relationship of UV exposure to prevalence of multiple sclerosis in England. Neurology 2011;76(16):1410-1414.
Broken bones risk People with MS have a greater risk of falling and a lower bone density than most people. This study examined whether this gave them a greater risk of bone fractures. Researchers found that there was an almost three fold increased risk of hip fracture and a 1.4-fold increase in the risk of fracture associated with osteoporosis. The risk was greatest for anyone who had been taking steroids or antidepressants in the previous six months or who was over 60 years old. Bazelier MT, et al. The risk of fracture in patients with multiple sclerosis: the UK general practice research database. Journal of Bone and Mineral Research 2011 May 6. [Epub ahead of print]
The MS Trust is involved in the development of guidelines for the management of osteoporosis in MS. Specialists in biomedicine, bone medicine and rheumatology together with MS specialists will be meeting to draw up a consensus document on best practice.
Heat and MS symptoms Many people with MS find that heat causes their symptoms, especially fatigue, to get worse. Of the 256 people with MS in Sweden who responded to a questionnaire, 58% reported heat sensitivity. It affected not only their fatigue but also pain, urinary urgency and cognitive problems such as concentration and memory. The researchers concluded that heat sensitivity is a key symptom in MS. More work is required to understand what causes it and to find ways to treat it. Flensner G, et al. Sensitivity to heat in MS patients: a factor strongly influencing symptomology an explorative survey. BMC Neurology 2011;11:27.
Alfred Hermida
4
Sativex for spasticity
Restless leg syndrome
Research news
www.mstrust.org.uk
Restless leg syndrome (RLS) is a neurological disorder where there is an irritating, non-painful sensation in the legs and an uncontrollable urge to move them. Symptoms occur, or are worse, when resting and particularly from the evening onwards making sleep difficult. In a Brazilian study, 80 people with MS and 180 people without MS were assessed for symptoms and the severity of any RLS. They found that RLS was more common and frequently more severe in people with MS. They also compared their results with previous studies and concluded that there was a four fold higher chance of having RLS for people with MS. Fragoso YD, et al. Restless legs syndrome and multiple sclerosis: a Brazilian multicenter study and meta-analysis of the literature. Arquivos de Neuro-psiquiatria 201;69(2):180-183.
Long-term effects of stem cell treatment There has been much media interest in stem cell treatments, which can give the impression that an effective therapy is close. In reality, stem cell research is in its infancy and the longer-term effects are unknown. In this study, 35 people had their bone marrow stem cells extracted, treated and then re-infused after chemotherapy had suppressed their immune system. It was hoped that the treated stem cells would reboot the immune system. Recipients were followed for between two and 15 years. The results were mixed. 16 people improved by an average of one point on the EDSS disability scale, with improvements lasting for an average of two years. For two of these people improvement lasted for over seven years. Seven people worsened during follow-up but remained better than their disability level at the start of treatment. Seven others only worsened and two died as a result of the treatment. Those who had evidence of active MS on MRI scans benefitted most. Other groups responding more favourably were younger people (35 years or less), those with recent diagnoses, and those with highly inflammatory MS. People with progressive MS responded less favourably. This is the only study to look at the effects of stem cell treatment in the longer-term. Although there are some promising results, the therapy is still under development. Fassas A et al. Long-term results of stem cell transplantation for MS: A single-center experience. Neurology 2011;76(12):1066-1070.
Spasticity is a common symptom in MS. Sativex, a cannabis-based mouth spray, has been licensed as an add on treatment for spasticity if other treatments have not worked or the side effects are unbearable. In a phase III trial, 572 people took Sativex for four weeks. 241 people who responded to the drug went on to the second stage where they received either Sativex or placebo for 12 weeks. Those taking Sativex showed a highly significant improvement in spasticity compared to those taking placebo. Use of Sativex is currently limited to those people who respond to the first four weeks of treatment and this study confirms that this is appropriate. Novotna A, et al. A randomized, double-blind, placebo-controlled, parallel-group, enriched-design study of nabiximols (Sativex), as add-on therapy, in subjects with refractory spasticity caused by multiple sclerosis. European Journal of Neurology 2011 Mar 1 [Epub ahead of print]
Can vaccines trigger MS? There has been concern that vaccinations could increase the risk of developing MS or increase the risk of relapses. Vaccinations are important, not only to protect from infections in this country, but also to protect us on holidays abroad. This makes it important to know if there is any particular risk associated with MS. In a recent investigation, the results of previous studies were combined to allow a more powerful analysis. It was shown that there was: ■ no significant change in the risk of developing MS after vaccination for BCG, hepatitis B, influenza, MMR, polio or typhoid fever ■ decreased risk of developing MS following diphtheria or tetanus immunisations ■ no change in risk of MS relapse following influenza immunization. These results support the NICE guidelines which recommend that people with MS should have all the vaccinations that are required both for the UK and when travelling abroad. Farez MF, Correale J. Immunizations and risk of multiple sclerosis: systematic review and meta-analysis. Journal of Neurology 2011 Mar 24. [Epub ahead of print]
Call: 0800 032 3839
5
Oral disease modifying treatments in the management of MS
Richard Nicholas, neurologist, Imperial Healthcare Trust, David Wilkie, trial administrator, Imperial College London The development of disease modifying treatments (DMTs) for people with relapsing remitting multiple sclerosis has revolutionised its management in the last 15 years. Until April 2011, all licensed treatments were injectable. Now the first oral therapy, fingolimod (Gilenya), is available in Europe, and three further oral drugs have completed their final trials (BG12, laquinimod, teriflunomide) and may be licensed in the near future. Though promising, how these oral medications will be used in the newly diagnosed and those already on therapy is unclear and raises many questions for doctors and people with MS considering treatment options.
Why start a DMT at all? There are two events of concern in MS: ■ Relapses - an acute worsening of function lasting more than 24 hours, followed by an improvement. ■ Accumulation of disability - where MS affects not just day to day function but becomes increasingly problematic over time. DMT treatment can potentially stop these events occurring.
Why does starting a DMT need some thought? There are two issues with starting DMTs. Firstly, 1015% of people with MS will never experience any disability and, secondly, the aim of DMTs is to prevent relapses and ultimately prevent further disability that may or may not occur in the future. As there may not be any perceived benefits and as MS is a long lasting and often very variable condition, any side effects can become a major issue.
6
When should you be thinking about starting a DMT? DMTs have been shown to reduce relapses, and it is increasingly evident that DMTs started after disability begins to accumulate do not stop the progress of further disability. Thus ideally they should be started early on.
Why should you continue to take them? It is currently believed for DMTs to be effective that they need to be taken for many years. Current DMTs are not perfect and unfortunately occasional relapses can occur, but DMTs may still have a benefit on the condition.
Should you be thinking about switching treatments? Changing treatment is increasingly common as options for treatment widen. The aim of starting effective DMTs early on means that if a DMT does not work for you or causes significant side effects, you should discuss changing sooner rather than later. The challenge is that each DMT has its own benefits and risks.
Benefits and risks of DMTs Our knowledge about the benefits of DMTs comes from trials performed over one to three years, a relatively short time in the lifespan of MS, whereas knowledge of side effects accumulates over years as the drug is used. We know about side effects of first line DMTs (interferons and Copaxone) and have increasing knowledge about side effects of natalizumab, but we have less knowledge about fingolimod.
www.mstrust.org.uk
First line DMTs:
have more knowledge of the new DMTs.
■ Cut relapses by about 30%. ■ They help some people with MS a lot and some not at all. ■ It takes six months to a year to see if they are being helpful. ■ They have significant day to day side effects causing flu-like symptoms and injection site problems and as a result about 35% of people do not take them long-term. ■ They are generally safe with no major issues when taken for more than 15 years.
Natalizumab (Tysabri) ■ Cuts relapses by about 68% and can improve function for some with MS. ■ Natalizumab takes about six months to work. ■ Natalizumab has to be given into the vein every 28 days and can cause allergic reactions. ■ The main risk is that of PML (progressive multifocal leukoencephalopathy): a severe, potentially fatal condition caused by a virus, the JC virus, entering the brain. This risk is being understood more as blood tests have been developed to check if people have ever had the JC virus infection. We also better understand the warning signs so treatment can be stopped if required.
Fingolimod (Gilenya) ■ Cuts relapses by 55% and has few issues day to day. ■ Potentially it can cause more infections, slow the heart rate when it is first given and cause macular oedema (a swelling at the back of the eye) affecting vision. It may also upset the liver enzymes. ■ It has in rare instances been associated with serious herpes infections but we need to gather more data to get a better understanding as we use the drug.
Where does fingolimod fit in? First line DMTs all have similar potency but fingolimod appears to be more effective and natalizumab - at least on paper - is more effective than fingolimod. Currently in the UK our use of the drugs and who will get access to these is determined by their licence and by the views of The National Institute for Health and Clinical Excellence (NICE) who are due to report on fingolimod in December 2011.
Your decision about DMTs You need to consider the day to day impact of the condition and the potential side effects of treatment. There are other considerations in choosing or changing a DMT. If you are stable on a therapy it may be that the DMT you are using suits you and changing may not be the best option. You may want to reconsider when we
If you are considering having children in the future, our knowledge from first line DMTs and natalizumab means that they can be used prior to pregnancy. In the case of fingolimod we have little knowledge so far about its effects in pregnancy and it is recommended that it is stopped at least two months before conception.
A shared decision with your neurologist MS is different for everyone and to identify the best strategy for your particular circumstances you need to consider the options and discuss them with your neurologist. Importantly, a decision about DMTs is not final and with our increasing choice of DMTs any decision should be reviewed in the future.
Fingolimod factfile What is fingolimod? Fingolimod (Gilenya) is a disease modifying treatment for people with relapsing remitting MS. It is also undergoing trials as a potential treatment for primary progressive MS.
How does fingolimod work? Fingolimod binds to lymphocytes (white blood cells) causing a large proportion of them to be retained in the lymph glands. The number of lymphocytes reaching the brain is decreased, resulting in reduced immune attack on nerve cells in the brain and spinal cord.
How is fingolimod taken? Fingolimod is taken as a capsule 0.5mg daily. The first dose is taken under medical supervision to check for side effects.
Who can be treated with fingolimod? Fingolimod is licensed for 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 - two or more relapses a year.
Side effects of fingolimod Common side effects include headache, liver enzyme increases, influenza, diarrhoea, back pain, and cough. Fingolimod can cause temporary changes in heart rate, blood pressure, shortness of breath and macular oedema (a swelling in the eye affecting vision).
Call: 0800 032 3839
7
Oral disease modifying treatments in the management of MS
Richard Nicholas, neurologist, Imperial Healthcare Trust, David Wilkie, trial administrator, Imperial College London The development of disease modifying treatments (DMTs) for people with relapsing remitting multiple sclerosis has revolutionised its management in the last 15 years. Until April 2011, all licensed treatments were injectable. Now the first oral therapy, fingolimod (Gilenya), is available in Europe, and three further oral drugs have completed their final trials (BG12, laquinimod, teriflunomide) and may be licensed in the near future. Though promising, how these oral medications will be used in the newly diagnosed and those already on therapy is unclear and raises many questions for doctors and people with MS considering treatment options.
Why start a DMT at all? There are two events of concern in MS: ■ Relapses - an acute worsening of function lasting more than 24 hours, followed by an improvement. ■ Accumulation of disability - where MS affects not just day to day function but becomes increasingly problematic over time. DMT treatment can potentially stop these events occurring.
Why does starting a DMT need some thought? There are two issues with starting DMTs. Firstly, 1015% of people with MS will never experience any disability and, secondly, the aim of DMTs is to prevent relapses and ultimately prevent further disability that may or may not occur in the future. As there may not be any perceived benefits and as MS is a long lasting and often very variable condition, any side effects can become a major issue.
6
When should you be thinking about starting a DMT? DMTs have been shown to reduce relapses, and it is increasingly evident that DMTs started after disability begins to accumulate do not stop the progress of further disability. Thus ideally they should be started early on.
Why should you continue to take them? It is currently believed for DMTs to be effective that they need to be taken for many years. Current DMTs are not perfect and unfortunately occasional relapses can occur, but DMTs may still have a benefit on the condition.
Should you be thinking about switching treatments? Changing treatment is increasingly common as options for treatment widen. The aim of starting effective DMTs early on means that if a DMT does not work for you or causes significant side effects, you should discuss changing sooner rather than later. The challenge is that each DMT has its own benefits and risks.
Benefits and risks of DMTs Our knowledge about the benefits of DMTs comes from trials performed over one to three years, a relatively short time in the lifespan of MS, whereas knowledge of side effects accumulates over years as the drug is used. We know about side effects of first line DMTs (interferons and Copaxone) and have increasing knowledge about side effects of natalizumab, but we have less knowledge about fingolimod.
www.mstrust.org.uk
First line DMTs:
have more knowledge of the new DMTs.
■ Cut relapses by about 30%. ■ They help some people with MS a lot and some not at all. ■ It takes six months to a year to see if they are being helpful. ■ They have significant day to day side effects causing flu-like symptoms and injection site problems and as a result about 35% of people do not take them long-term. ■ They are generally safe with no major issues when taken for more than 15 years.
Natalizumab (Tysabri) ■ Cuts relapses by about 68% and can improve function for some with MS. ■ Natalizumab takes about six months to work. ■ Natalizumab has to be given into the vein every 28 days and can cause allergic reactions. ■ The main risk is that of PML (progressive multifocal leukoencephalopathy): a severe, potentially fatal condition caused by a virus, the JC virus, entering the brain. This risk is being understood more as blood tests have been developed to check if people have ever had the JC virus infection. We also better understand the warning signs so treatment can be stopped if required.
Fingolimod (Gilenya) ■ Cuts relapses by 55% and has few issues day to day. ■ Potentially it can cause more infections, slow the heart rate when it is first given and cause macular oedema (a swelling at the back of the eye) affecting vision. It may also upset the liver enzymes. ■ It has in rare instances been associated with serious herpes infections but we need to gather more data to get a better understanding as we use the drug.
Where does fingolimod fit in? First line DMTs all have similar potency but fingolimod appears to be more effective and natalizumab - at least on paper - is more effective than fingolimod. Currently in the UK our use of the drugs and who will get access to these is determined by their licence and by the views of The National Institute for Health and Clinical Excellence (NICE) who are due to report on fingolimod in December 2011.
Your decision about DMTs You need to consider the day to day impact of the condition and the potential side effects of treatment. There are other considerations in choosing or changing a DMT. If you are stable on a therapy it may be that the DMT you are using suits you and changing may not be the best option. You may want to reconsider when we
If you are considering having children in the future, our knowledge from first line DMTs and natalizumab means that they can be used prior to pregnancy. In the case of fingolimod we have little knowledge so far about its effects in pregnancy and it is recommended that it is stopped at least two months before conception.
A shared decision with your neurologist MS is different for everyone and to identify the best strategy for your particular circumstances you need to consider the options and discuss them with your neurologist. Importantly, a decision about DMTs is not final and with our increasing choice of DMTs any decision should be reviewed in the future.
Fingolimod factfile What is fingolimod? Fingolimod (Gilenya) is a disease modifying treatment for people with relapsing remitting MS. It is also undergoing trials as a potential treatment for primary progressive MS.
How does fingolimod work? Fingolimod binds to lymphocytes (white blood cells) causing a large proportion of them to be retained in the lymph glands. The number of lymphocytes reaching the brain is decreased, resulting in reduced immune attack on nerve cells in the brain and spinal cord.
How is fingolimod taken? Fingolimod is taken as a capsule 0.5mg daily. The first dose is taken under medical supervision to check for side effects.
Who can be treated with fingolimod? Fingolimod is licensed for 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 - two or more relapses a year.
Side effects of fingolimod Common side effects include headache, liver enzyme increases, influenza, diarrhoea, back pain, and cough. Fingolimod can cause temporary changes in heart rate, blood pressure, shortness of breath and macular oedema (a swelling in the eye affecting vision).
Call: 0800 032 3839
7
Men, MS and sex
Me, MS and my sexuality
Alan Beevers Although sex seems to be all around us in the modern age we still don't talk about it well, and men are often the worst culprits. Before MS edged me into retirement I worked as a Relate-trained psychosexual therapist. It was an odd job, not easy to talk about in casual conversation. It either shut people up or produced nudge-nudge, wink-wink responses. But what it gave me was the privilege of sharing men and women's difficult, painful but often joyous struggles with the complexities of human sexuality.
organisations like Relate or the College of Sexual and Relationship Therapists. Talking - to your partner if you have one, or to friends - can be the biggest step forward, but it's not always easy to know what to say. In my own journey with MS I've had to face a host of losses and changes, including the image of myself as a sexual man. Although the subject continues to be taboo for some I'm very grateful for all the help that is out there and would urge all men to use this book. It's a valuable resource.
For almost all of us our sexuality is a key part of our identity and the source of much pleasure and not a little pain. When things go right, all is well but when things go wrong (as they so often do) our worlds can be turned upside down. When it comes to sex one thing is clear - MS doesn't help! Fatigue, numbness, pain, loss of mobility, incontinence can all get in the way of pleasurable sexual experiences, with or without a partner. Despite many changes in attitudes over the past 30 years there is still pressure on men to be sexual performers - to be ever ready to leap into action. But those of us living with MS know that leaping into action isn't our strong suit. There is a danger that MS can double the difficulties we may have by prompting feelings of failure.
"The book helps by putting sexual problems in context, offering basic information about sexual functioning and passing on tips from men with MS on how to make sex an enjoyable experience." Sex and MS: a guide for men is free and can be ordered from the back page.
8
www.mstrust.org.uk
While addressing all the issues thrown up by my previously ignoring the situation - attending counselling and getting back in touch with an MS nurse - I became aware how patchy awareness is of the psychological and physical damage MS can inflict on our sexuality. I had mentioned vaginal numbness to the specialist and she replied, "It takes about six months to recover completely from a relapse. Any numbness left at the end of that is likely to be permanent." I felt like I was asking too much to be regarded both as a person with MS and a normal woman who wanted her body to work properly. Not long after that I started dating an old friend. We began to discover that there were lasting problems caused by my MS. I struggled to explain that what might feel nice one night could hurt the next. Even stroking my side and my back could cause pain if I was tired. The terrible suddenness of my fatigue and the need to rest left him feeling unloved, unsexy and unwanted.
MS has taken a lot from me, but it has forced me to learn the gifts of communication and consideration. I try to rest enough, not to drink too much or stay up too late, and to tell him how I am feeling instead of expecting him to guess. We are very close and we enjoy an active sex life, more imaginative I think than many able bodied couples since I’m not always awake enough to have full sex. We enjoy all sexual behaviour we engage in and are very happy together. We got married in January and have decided to try for our first baby, which I’m sure will bring its own challenges. Whatever happens, I have a great husband and a very happy sex life - it is possible! "MS requires us to overcome barriers and to discuss issues which are intensely personal. I would urge everyone to be more open to solutions and to discussion." Sexuality and MS: a guide for women is free and can be ordered from the back page.
We had rows about this. He would be angry if I changed my mind about going to bed early one night so that we could have sex the next because I wanted to meet up with a friend or watch a film. I could understand his frustration - there is never enough energy left with MS.
I've struggled hard to accept the changes that MS has brought to my sexual functioning and it hasn't been easy, especially when I turn inwards and flirt with the idea that feeling sorry for myself or blaming others might actually help. As with other impacts of MS, taking responsibility for changing and adapting, concentrating on what I can do rather than on what I can't, is the only useful show in town. The new book from the MS Trust - Sex and MS: a guide for men - is a great help. As well as simply bringing the subject to the fore and acknowledging the difficulties, it is packed with ideas for turning crisis into opportunity. There are many ways to be sensual and intimate, to give and receive pleasure, without the need for sexual gymnastics. If you are struggling, picture: XhyraGraf there is help out there - from GPs, specialist nurses,
For a long time after my diagnosis in 2003 I tried to carry on as normal. Things came to a head in 2005 when a serious relapse left me with permanent pins and needles and burning sensations down my right hand side.
In the end we have solved our issues. It has involved an enormous amount of give on his part but he has learned that if he pushes me, I feel less like having sex. I have learned to take one day at a time and to enjoy evenings where we do not always have full sex but do get intimate. His understanding and distance have made a positive impact and I now do not feel pressured or a failure if I am too tired to have sex.
picture: Noyes
I have learned that talking is the best recipe. If something is uncomfortable, I tell him. He has learned to ask how I am feeling and not to take it personally if I do not want him to touch my arm or kiss my neck, but to ask what else I might like!
Call: 0800 032 3839
9
Men, MS and sex
Me, MS and my sexuality
Alan Beevers Although sex seems to be all around us in the modern age we still don't talk about it well, and men are often the worst culprits. Before MS edged me into retirement I worked as a Relate-trained psychosexual therapist. It was an odd job, not easy to talk about in casual conversation. It either shut people up or produced nudge-nudge, wink-wink responses. But what it gave me was the privilege of sharing men and women's difficult, painful but often joyous struggles with the complexities of human sexuality.
organisations like Relate or the College of Sexual and Relationship Therapists. Talking - to your partner if you have one, or to friends - can be the biggest step forward, but it's not always easy to know what to say. In my own journey with MS I've had to face a host of losses and changes, including the image of myself as a sexual man. Although the subject continues to be taboo for some I'm very grateful for all the help that is out there and would urge all men to use this book. It's a valuable resource.
For almost all of us our sexuality is a key part of our identity and the source of much pleasure and not a little pain. When things go right, all is well but when things go wrong (as they so often do) our worlds can be turned upside down. When it comes to sex one thing is clear - MS doesn't help! Fatigue, numbness, pain, loss of mobility, incontinence can all get in the way of pleasurable sexual experiences, with or without a partner. Despite many changes in attitudes over the past 30 years there is still pressure on men to be sexual performers - to be ever ready to leap into action. But those of us living with MS know that leaping into action isn't our strong suit. There is a danger that MS can double the difficulties we may have by prompting feelings of failure.
"The book helps by putting sexual problems in context, offering basic information about sexual functioning and passing on tips from men with MS on how to make sex an enjoyable experience." Sex and MS: a guide for men is free and can be ordered from the back page.
8
www.mstrust.org.uk
While addressing all the issues thrown up by my previously ignoring the situation - attending counselling and getting back in touch with an MS nurse - I became aware how patchy awareness is of the psychological and physical damage MS can inflict on our sexuality. I had mentioned vaginal numbness to the specialist and she replied, "It takes about six months to recover completely from a relapse. Any numbness left at the end of that is likely to be permanent." I felt like I was asking too much to be regarded both as a person with MS and a normal woman who wanted her body to work properly. Not long after that I started dating an old friend. We began to discover that there were lasting problems caused by my MS. I struggled to explain that what might feel nice one night could hurt the next. Even stroking my side and my back could cause pain if I was tired. The terrible suddenness of my fatigue and the need to rest left him feeling unloved, unsexy and unwanted.
MS has taken a lot from me, but it has forced me to learn the gifts of communication and consideration. I try to rest enough, not to drink too much or stay up too late, and to tell him how I am feeling instead of expecting him to guess. We are very close and we enjoy an active sex life, more imaginative I think than many able bodied couples since I’m not always awake enough to have full sex. We enjoy all sexual behaviour we engage in and are very happy together. We got married in January and have decided to try for our first baby, which I’m sure will bring its own challenges. Whatever happens, I have a great husband and a very happy sex life - it is possible! "MS requires us to overcome barriers and to discuss issues which are intensely personal. I would urge everyone to be more open to solutions and to discussion." Sexuality and MS: a guide for women is free and can be ordered from the back page.
We had rows about this. He would be angry if I changed my mind about going to bed early one night so that we could have sex the next because I wanted to meet up with a friend or watch a film. I could understand his frustration - there is never enough energy left with MS.
I've struggled hard to accept the changes that MS has brought to my sexual functioning and it hasn't been easy, especially when I turn inwards and flirt with the idea that feeling sorry for myself or blaming others might actually help. As with other impacts of MS, taking responsibility for changing and adapting, concentrating on what I can do rather than on what I can't, is the only useful show in town. The new book from the MS Trust - Sex and MS: a guide for men - is a great help. As well as simply bringing the subject to the fore and acknowledging the difficulties, it is packed with ideas for turning crisis into opportunity. There are many ways to be sensual and intimate, to give and receive pleasure, without the need for sexual gymnastics. If you are struggling, picture: XhyraGraf there is help out there - from GPs, specialist nurses,
For a long time after my diagnosis in 2003 I tried to carry on as normal. Things came to a head in 2005 when a serious relapse left me with permanent pins and needles and burning sensations down my right hand side.
In the end we have solved our issues. It has involved an enormous amount of give on his part but he has learned that if he pushes me, I feel less like having sex. I have learned to take one day at a time and to enjoy evenings where we do not always have full sex but do get intimate. His understanding and distance have made a positive impact and I now do not feel pressured or a failure if I am too tired to have sex.
picture: Noyes
I have learned that talking is the best recipe. If something is uncomfortable, I tell him. He has learned to ask how I am feeling and not to take it personally if I do not want him to touch my arm or kiss my neck, but to ask what else I might like!
Call: 0800 032 3839
9
My Story
How I cope with my mum's condition
I work hard to keep my life as full as possible
Sam Taylor
Jackie Smith I have had MS for most of my life. I was diagnosed at 21 - back in the bad old days and I am now 53. I know my MS well and it, unfortunately, knows me. Things have changed a lot over the past thirty odd years. There is now much better support for people with MS, the level and quality of information is infinitely better, we have MS nurses and specialist units, no-one is left to stew anymore as used to happen.
Earlier this year we launched My Story pages on our website. Each person's experience of MS is unique and people find many different ways to cope with the ups and downs. The stories you have been sending us show all the aspects of life with MS - good, bad and everything in between.
I am a firm believer in the benefits of regular physio for all who have MS and am a great fan of the MS Trust's Mr Motivator DVD. My initially relapsing remitting MS began to assert itself strongly in my mid 30s and is now secondary progressive.
We welcome stories from anyone affected by MS - people with MS, partners, parents, children, health professionals or carers. If you would like to share your own experiences of MS go to www.mstrust.org.uk/mystory Being 17 years old and having a parent with MS isn't easy. It can affect your social life, your studies and even at times your personality.
The day I told my parents Gavin Lehman So here I sit, three years, five months and two days (not that I'm counting) since the day that nothing changed. The world keeps on spinning and my hair line carries on retreating. I was 23 when I was diagnosed, although for me it was just the inevitable conclusion of an unpredictable 20 months. I know I've got MS, but I still haven't dealt with the emotional impact of the loss that my MS has brought me. I may never. I still remember the moments that I told my parents I had MS and their reactions, both markedly different yet at the same time identical in their own ways. While I was being diagnosed I hadn't told them anything was wrong as I didn't want them to worry. To make matters worse, I had to have the same conversation twice as they're divorced. I was probably more nervous about telling them I had MS, how to phrase it, how they'd react than I ever was going for my neurologist appointment. What he had to tell me was just a fact, what my parents reactions would be was an unknown to me. My dad being my dad had a typically bloke-ish type reaction, "Are you taking the piss?" His sister, who had had MS as well, had died from complications relating to it earlier that year. She
10
had quickly developed disabilities and was in chronic pain. No matter how many times I told him that each person's MS is different, he was still convinced I would end up like his sister.
I remember the first day of a vicious relapse my mother had in 2010. The day before, she was fine. The day after, she was completely unable to walk. The shock of what was happening, the confusion and guilt instantly sank in and left me feeling, at times, almost isolated and afraid of the future - her recovery was not certain. I constantly read 'horror' stories on the internet which left me feeling even more afraid. For ages I couldn't relate to anyone around me and soon became bitter and furious that my mum had this horrific illness. It put great pressure on us all, particularly my dad, whom I respect and admire so much for caring for my mother all throughout their marriage.
My mum's reaction was exactly what you'd expect, tears and lots of them. She was half way through cooking the Sunday roast when I told her, but like a true mum, she didn't let the bad news ruin a wonderful lunch. She told me a few months later that had I not had my then girlfriend (and now my wife) with me, she wouldn't have let me go back to my flat.
The thing that helped me most through this dark period, and other times when my mum's condition worsens, is talking to friends I trust with my life. It sometimes takes a tremendous amount of courage for me to do it but I'm glad I do - all it takes is one text or one secret conversation to bring about a lifetime of support.
Don't think that I told them my news as soon as I came through the door. No, I wanted to show them both that I was still the same old me, shortly before I crushed that idea with my news.
Another way that has helped me is by helping and meeting others in a similar position to myself and by raising an awareness of MS through fundraising.
I'm still here, I'm still me and hopefully, I will be for many more years yet.
MS is an illness that can beat you - but you can beat it just as easily.
www.mstrust.org.uk
My mobility has decreased markedly and I now use a wheelchair a lot of the time. I still walk as much as I can but am fairly dangerous without my FES - still not available on the NHS in Scotland, where I live. I have more or less lost the use of my right hand - a bit of a downer for a right handed artist - but still manage to work with my computer, a camera and some assistance. I still have a social life, am a member of a book group and can, thankfully, still drive and like to travel. I get fed up with the MS sometimes - who wouldn't after 32 years - but generally remain positive. I work hard to keep my life as full as possible and try to maintain an optimistic outlook. I could tell you all about my symptoms, my falls, the challenges to my confidence but that's not me.
Call: 0800 032 3839
11
My Story
How I cope with my mum's condition
I work hard to keep my life as full as possible
Sam Taylor
Jackie Smith I have had MS for most of my life. I was diagnosed at 21 - back in the bad old days and I am now 53. I know my MS well and it, unfortunately, knows me. Things have changed a lot over the past thirty odd years. There is now much better support for people with MS, the level and quality of information is infinitely better, we have MS nurses and specialist units, no-one is left to stew anymore as used to happen.
Earlier this year we launched My Story pages on our website. Each person's experience of MS is unique and people find many different ways to cope with the ups and downs. The stories you have been sending us show all the aspects of life with MS - good, bad and everything in between.
I am a firm believer in the benefits of regular physio for all who have MS and am a great fan of the MS Trust's Mr Motivator DVD. My initially relapsing remitting MS began to assert itself strongly in my mid 30s and is now secondary progressive.
We welcome stories from anyone affected by MS - people with MS, partners, parents, children, health professionals or carers. If you would like to share your own experiences of MS go to www.mstrust.org.uk/mystory Being 17 years old and having a parent with MS isn't easy. It can affect your social life, your studies and even at times your personality.
The day I told my parents Gavin Lehman So here I sit, three years, five months and two days (not that I'm counting) since the day that nothing changed. The world keeps on spinning and my hair line carries on retreating. I was 23 when I was diagnosed, although for me it was just the inevitable conclusion of an unpredictable 20 months. I know I've got MS, but I still haven't dealt with the emotional impact of the loss that my MS has brought me. I may never. I still remember the moments that I told my parents I had MS and their reactions, both markedly different yet at the same time identical in their own ways. While I was being diagnosed I hadn't told them anything was wrong as I didn't want them to worry. To make matters worse, I had to have the same conversation twice as they're divorced. I was probably more nervous about telling them I had MS, how to phrase it, how they'd react than I ever was going for my neurologist appointment. What he had to tell me was just a fact, what my parents reactions would be was an unknown to me. My dad being my dad had a typically bloke-ish type reaction, "Are you taking the piss?" His sister, who had had MS as well, had died from complications relating to it earlier that year. She
10
had quickly developed disabilities and was in chronic pain. No matter how many times I told him that each person's MS is different, he was still convinced I would end up like his sister.
I remember the first day of a vicious relapse my mother had in 2010. The day before, she was fine. The day after, she was completely unable to walk. The shock of what was happening, the confusion and guilt instantly sank in and left me feeling, at times, almost isolated and afraid of the future - her recovery was not certain. I constantly read 'horror' stories on the internet which left me feeling even more afraid. For ages I couldn't relate to anyone around me and soon became bitter and furious that my mum had this horrific illness. It put great pressure on us all, particularly my dad, whom I respect and admire so much for caring for my mother all throughout their marriage.
My mum's reaction was exactly what you'd expect, tears and lots of them. She was half way through cooking the Sunday roast when I told her, but like a true mum, she didn't let the bad news ruin a wonderful lunch. She told me a few months later that had I not had my then girlfriend (and now my wife) with me, she wouldn't have let me go back to my flat.
The thing that helped me most through this dark period, and other times when my mum's condition worsens, is talking to friends I trust with my life. It sometimes takes a tremendous amount of courage for me to do it but I'm glad I do - all it takes is one text or one secret conversation to bring about a lifetime of support.
Don't think that I told them my news as soon as I came through the door. No, I wanted to show them both that I was still the same old me, shortly before I crushed that idea with my news.
Another way that has helped me is by helping and meeting others in a similar position to myself and by raising an awareness of MS through fundraising.
I'm still here, I'm still me and hopefully, I will be for many more years yet.
MS is an illness that can beat you - but you can beat it just as easily.
www.mstrust.org.uk
My mobility has decreased markedly and I now use a wheelchair a lot of the time. I still walk as much as I can but am fairly dangerous without my FES - still not available on the NHS in Scotland, where I live. I have more or less lost the use of my right hand - a bit of a downer for a right handed artist - but still manage to work with my computer, a camera and some assistance. I still have a social life, am a member of a book group and can, thankfully, still drive and like to travel. I get fed up with the MS sometimes - who wouldn't after 32 years - but generally remain positive. I work hard to keep my life as full as possible and try to maintain an optimistic outlook. I could tell you all about my symptoms, my falls, the challenges to my confidence but that's not me.
Call: 0800 032 3839
11
MS Trust comes of age!
Pam Macfarlane, Chief Executive, MS Trust The MS Trust is about to celebrate its 18th birthday - one of those milestones where it's good to take a look back and also to think about the future. Many charities are the result of personal experiences. The MS Trust was started in 1993 by Jill Holt and Chris Jones. Jill had seen both her mother and aunt struggle with MS, whilst Chris, then a mother to two young children, had been diagnosed with MS in her 30s. Both had become increasingly frustrated that the needs of people with MS were not being met: ■ Information, especially for the newly diagnosed, was woefully inadequate ■ Applied research was under funded ■ NHS services were poor ■ The image of MS was unduly negative It is their shared commitment to address these issues that has shaped the work of the MS Trust throughout the last 18 years.
with MS and their families, we have been able to develop a range of trusted, accessible and attractive books and factsheets that provide the information that people need. Life has changed significantly in the last 18 years. We are now in the age of the instant response. There is certainly not a lack of information about MS today a single search on the web will bring up millions of results and social networks allow for instant sharing of personal experiences. It is often difficult to separate the facts from the fiction and the challenge is filtering all this information into something meaningful. Today, our Information Service is more important than ever; here to help by distilling the hope from the hype and researching the answers to your questions about MS.
Research The MS Trust has always believed in funding practical research to help people living with MS now. We were unique in this belief in 1993. Projects we have supported over the years have demonstrated the value of physiotherapy, of exercise, of keeping people in work and of devices such as FES, which helps with walking. We continue to fund good quality, practical studies which are often pilot studies for larger trials. We also recognised that in order to get more specialised MS services, we would need to prove the worth of specific roles and so we commissioned research to prove the value of specialist nurses. As a result of our funding of initial projects such as these, we have been able to influence the way everyone looks at the treatment and the services offered to people with MS.
Information The Information Service has been at the heart of what we do since we began. Since 1997, Open Door has been central to this, bringing together the latest news and research along with views from the experts - people who live and work with MS. The feedback and questions received by the Information Service have helped us identify the areas of real concern for people with MS. By working closely with health professionals, people
12
Improved services Improving NHS services for people with MS is a huge challenge. Our three audits with the Royal College of Physicians have demonstrated considerable shortcomings in MS services. The MS Trust has used this evidence to influence on a number of fronts. We know many people still do not have access to
www.mstrust.org.uk
specialist nurses or physiotherapy services, but we believe we have made some progress. A core belief of the MS Trust is that the best results happen when the clinical expertise of health professionals is combined with the personal expertise of people living with MS on a daily basis. It is our job to help make that partnership work by providing all the information and support we can to both parties. Our work with MS nurses began in the mid 1990s. At the time there were just three MS nurses but it was obvious that they could greatly improve care for everyone with MS. At a joint meeting of the Royal College of Nursing, Department of Health, MS Society and MS Trust, it was agreed that the MS Trust was best placed to develop a network for MS nurses across the UK. This led to an accredited education programme to increase their knowledge so that they could really make a difference for all people with MS. Today this programme enables all new MS nurses and therapists to learn in detail about the diagnosis and assessment of MS, management of symptoms the input of other specialities and therapists. The course includes a session with a person with MS talking about their day to day life. Feedback often highlights this session as the one that really brings home the reality of MS to the group. Our education programme also includes a specialist nurse meeting, an annual conference attended by over 350 MS health professionals, and study days throughout the UK. Our MS nurse support programme provides resources, education opportunities, and mentoring for MS nurses, particularly those whose posts are under threat. The work we have done to support MS nurses has led us to specialist training for therapists and we now support a Therapists in MS network across the UK. These education programmes are supplemented by Way Ahead, a quarterly journal for health and social care professionals working with people with MS.
Your support For its size - currently 28 staff, many part time - the MS Trust has achieved a lot over the last 18 years, but our achievements wouldn't happen without your support and input to our work. ■ You call our Information Service and challenge them with questions and tell us where there are gaps in information. And your fundraising and donations enable us to provide all our information free to those who need it. ■ You've supported our campaigning to get more nurses, our help for people in posts under threat and our education programme which adds to their understanding of the challenges of living with MS. ■ You have helped us change the attitude of others to life with a long-term condition - it's not about what you can't do, it's all about what you CAN do.
The future In the last 18 years we've just scratched the surface. ■ Of the UK population, 16% has a neurological condition, yet the NHS spends just 3% of its budget on neurology and MS gets just a tiny proportion of that. ■ We need to understand what the changes to the NHS will mean for people with MS. We need to protect the role of MS nurses and ensure they continue to get the support and education they need. And we need more of them. ■ We need to increase the investment in practical research - so that we can prove to the people who control the NHS budget the benefits of practical help for people with MS now. ■ We need to continue campaigning for better MS services, access to new drugs and treatments and joined up health and social care services. ■ Information presents many challenges. We all like our information presented in different ways. We want the MS Trust information available to the widest possible audience so we need to look at all of those ways. Print, website, phone, Facebook, Twitter, YouTube, email - we will be there. Some of you will have been on the whole 18 year journey with us, some of you have joined us along the way. Our thanks to all of you who have - and continue to - inform, inspire and support our work.
Call: 0800 032 3839
13
MS Trust comes of age!
Pam Macfarlane, Chief Executive, MS Trust The MS Trust is about to celebrate its 18th birthday - one of those milestones where it's good to take a look back and also to think about the future. Many charities are the result of personal experiences. The MS Trust was started in 1993 by Jill Holt and Chris Jones. Jill had seen both her mother and aunt struggle with MS, whilst Chris, then a mother to two young children, had been diagnosed with MS in her 30s. Both had become increasingly frustrated that the needs of people with MS were not being met: ■ Information, especially for the newly diagnosed, was woefully inadequate ■ Applied research was under funded ■ NHS services were poor ■ The image of MS was unduly negative It is their shared commitment to address these issues that has shaped the work of the MS Trust throughout the last 18 years.
with MS and their families, we have been able to develop a range of trusted, accessible and attractive books and factsheets that provide the information that people need. Life has changed significantly in the last 18 years. We are now in the age of the instant response. There is certainly not a lack of information about MS today a single search on the web will bring up millions of results and social networks allow for instant sharing of personal experiences. It is often difficult to separate the facts from the fiction and the challenge is filtering all this information into something meaningful. Today, our Information Service is more important than ever; here to help by distilling the hope from the hype and researching the answers to your questions about MS.
Research The MS Trust has always believed in funding practical research to help people living with MS now. We were unique in this belief in 1993. Projects we have supported over the years have demonstrated the value of physiotherapy, of exercise, of keeping people in work and of devices such as FES, which helps with walking. We continue to fund good quality, practical studies which are often pilot studies for larger trials. We also recognised that in order to get more specialised MS services, we would need to prove the worth of specific roles and so we commissioned research to prove the value of specialist nurses. As a result of our funding of initial projects such as these, we have been able to influence the way everyone looks at the treatment and the services offered to people with MS.
Information The Information Service has been at the heart of what we do since we began. Since 1997, Open Door has been central to this, bringing together the latest news and research along with views from the experts - people who live and work with MS. The feedback and questions received by the Information Service have helped us identify the areas of real concern for people with MS. By working closely with health professionals, people
12
Improved services Improving NHS services for people with MS is a huge challenge. Our three audits with the Royal College of Physicians have demonstrated considerable shortcomings in MS services. The MS Trust has used this evidence to influence on a number of fronts. We know many people still do not have access to
www.mstrust.org.uk
specialist nurses or physiotherapy services, but we believe we have made some progress. A core belief of the MS Trust is that the best results happen when the clinical expertise of health professionals is combined with the personal expertise of people living with MS on a daily basis. It is our job to help make that partnership work by providing all the information and support we can to both parties. Our work with MS nurses began in the mid 1990s. At the time there were just three MS nurses but it was obvious that they could greatly improve care for everyone with MS. At a joint meeting of the Royal College of Nursing, Department of Health, MS Society and MS Trust, it was agreed that the MS Trust was best placed to develop a network for MS nurses across the UK. This led to an accredited education programme to increase their knowledge so that they could really make a difference for all people with MS. Today this programme enables all new MS nurses and therapists to learn in detail about the diagnosis and assessment of MS, management of symptoms the input of other specialities and therapists. The course includes a session with a person with MS talking about their day to day life. Feedback often highlights this session as the one that really brings home the reality of MS to the group. Our education programme also includes a specialist nurse meeting, an annual conference attended by over 350 MS health professionals, and study days throughout the UK. Our MS nurse support programme provides resources, education opportunities, and mentoring for MS nurses, particularly those whose posts are under threat. The work we have done to support MS nurses has led us to specialist training for therapists and we now support a Therapists in MS network across the UK. These education programmes are supplemented by Way Ahead, a quarterly journal for health and social care professionals working with people with MS.
Your support For its size - currently 28 staff, many part time - the MS Trust has achieved a lot over the last 18 years, but our achievements wouldn't happen without your support and input to our work. ■ You call our Information Service and challenge them with questions and tell us where there are gaps in information. And your fundraising and donations enable us to provide all our information free to those who need it. ■ You've supported our campaigning to get more nurses, our help for people in posts under threat and our education programme which adds to their understanding of the challenges of living with MS. ■ You have helped us change the attitude of others to life with a long-term condition - it's not about what you can't do, it's all about what you CAN do.
The future In the last 18 years we've just scratched the surface. ■ Of the UK population, 16% has a neurological condition, yet the NHS spends just 3% of its budget on neurology and MS gets just a tiny proportion of that. ■ We need to understand what the changes to the NHS will mean for people with MS. We need to protect the role of MS nurses and ensure they continue to get the support and education they need. And we need more of them. ■ We need to increase the investment in practical research - so that we can prove to the people who control the NHS budget the benefits of practical help for people with MS now. ■ We need to continue campaigning for better MS services, access to new drugs and treatments and joined up health and social care services. ■ Information presents many challenges. We all like our information presented in different ways. We want the MS Trust information available to the widest possible audience so we need to look at all of those ways. Print, website, phone, Facebook, Twitter, YouTube, email - we will be there. Some of you will have been on the whole 18 year journey with us, some of you have joined us along the way. Our thanks to all of you who have - and continue to - inform, inspire and support our work.
Call: 0800 032 3839
13
Supporting the MS Trust
Make pay day extra special!
Remember A Charity Week
Giving a donation to the MS Trust from your pay or company/personal pension is a simple and effective way to make a difference for people with MS, every time you get paid.
12 - 18 September 2011
By donating to the MS Trust, you will be helping to provide vital information and support for people affected by MS and their families. You may even find that by using a Payroll Giving scheme, your company will match your donation, meaning your gift is worth even more. Your payments will be deducted before tax, so a donation of £10 only costs you £8 if you pay basic rate tax; £6 if you pay the 40% rate or just £5 if you pay the highest rate. This also means that your taxable income is reduced. Speak to your employer about donating through your payroll to the MS Trust. If your company is not currently offering Payroll Giving, it is very simple to set up and you can find more information on our website at www.mstrust.org.uk/payroll
£10
Gifts in wills (or legacies) are vital to the MS Trust's very survival, a fact that most of our supporters don't realise. To raise some much needed awareness, we've joined forces with Remember A Charity, the largest consortium of its kind in the UK working to promote legacy giving. The MS Trust is again taking part in Remember A Charity Week this year to help raise awareness of gifts in wills and why they are so important to our work. We will be keeping you updated with our planned activities for the week and how you can get involved via our website at www.mstrust.org.uk/racweek
Bon voyage! Since 2008, over one hundred MS Trust supporters have cycled from London to Paris to raise vital funds. We would like to make next June's ride one of our major fundraising events in 2012. This fantastic cycle challenge takes you through lovely English villages and into the stunning countryside of rural France before arriving at your destination Paris's iconic Eiffel Tower! Book early for our London to Paris cycle ride, which takes place from 13 to 17 June 2012, and give yourself plenty of time to train and fundraise. All you need to pay on booking is a deposit of £139 and then you have lots of time to raise the minimum sponsorship of £1,400. Why not see if you can get a team of friends or colleagues to take part together and share the fundraising and training? For more information please get in touch or visit our website - www.mstrust.org.uk/londontoparis If this challenge isn't for you then perhaps you could help us by displaying the enclosed poster.
The first ever International Legacy Giving Day will be held on Tuesday 13 September during Remember A Charity Week. An international alliance of charities from Australia, Belgium, Canada, Ireland, Spain, Switzerland and Norway will join the UK's Remember A Charity to mark International Legacy Giving Day.
Do you know any skiers or snowboarders who might like to try something different for their next ski trip? We are looking for around 20 people to join us in Tignes, France for our fifth Monster Ski challenge, which will take place from 22 to 26 March 2012. Participants need to be fairly experienced on the slopes and confident on a red run as they will be skiing the height of Mount Everest every day! Our last Monster Ski event raised over £80,000 to help fund our work and four members of our team had MS themselves. Robin was one of them and he told us, “I found the whole experience amazing and uplifting in terms of my journey in life since being diagnosed - certainly a challenge and one I cannot believe I completed with my MS. The support and encouragement of the group during the trip was superb.”
To find out more about gifts in wills and how they enable the MS Trust to help people affected by MS, visit www.mstrust.org.uk/wills
will provide essential information to someone newly diagnosed with MS
For more information, please get in touch or visit www.mstrust.org.uk/monsterski. We would also love to hear from you if you are able to display a poster to help us promote the event.
£5 will provide
Could you volunteer this Christmas?
four people with a copy of Open Door
“A very enjoyable and practical way of supporting the MS Trust.” Mrs Williams, Oxford
Thank you for helping us to support MS nurses We would like to say a big thank you to everyone who responded to our recent appeal for our MS Nurse Support Programme, helping to raise over £34,000 so far. We are still raising funds for this project and you can read more about it and donate on our website at www.mstrust.org.uk/nurses If you would like to donate £3 to support MS nurses right now, you can do so using Justgiving's free text donation service. Simply text MSNS35 £3 to 70070 and the payment will be made via your mobile phone. We have lots of work still to do and every donation helps!
14
Skiers needed for our 2012 Monster Ski challenge
www.mstrust.org.uk
The MS Trust needs your help! We are looking for volunteers to help sell our Christmas cards in Cards for Good Causes shops. These temporary shops are located in churches, libraries, museums and community centres all over the country. They run from October to December and ideally you would need to be available for either one morning or
afternoon per week during this time. Volunteering with Cards for Good Causes is a great opportunity to meet people, support the MS Trust and choose your cards early without the crowds! “I sell the charity cards listening to the choir and orchestra rehearsing for Christmas concerts and it is just the best start to my festivities every year.” Mrs Newlands, St Albans
To find out more about any of our activities, please call 01462 476707 email fundraising@mstrust.org.uk or visit www.mstrust.org.uk/fundraising
Call: 0800 032 3839
15
Supporting the MS Trust
Make pay day extra special!
Remember A Charity Week
Giving a donation to the MS Trust from your pay or company/personal pension is a simple and effective way to make a difference for people with MS, every time you get paid.
12 - 18 September 2011
By donating to the MS Trust, you will be helping to provide vital information and support for people affected by MS and their families. You may even find that by using a Payroll Giving scheme, your company will match your donation, meaning your gift is worth even more. Your payments will be deducted before tax, so a donation of £10 only costs you £8 if you pay basic rate tax; £6 if you pay the 40% rate or just £5 if you pay the highest rate. This also means that your taxable income is reduced. Speak to your employer about donating through your payroll to the MS Trust. If your company is not currently offering Payroll Giving, it is very simple to set up and you can find more information on our website at www.mstrust.org.uk/payroll
£10
Gifts in wills (or legacies) are vital to the MS Trust's very survival, a fact that most of our supporters don't realise. To raise some much needed awareness, we've joined forces with Remember A Charity, the largest consortium of its kind in the UK working to promote legacy giving. The MS Trust is again taking part in Remember A Charity Week this year to help raise awareness of gifts in wills and why they are so important to our work. We will be keeping you updated with our planned activities for the week and how you can get involved via our website at www.mstrust.org.uk/racweek
Bon voyage! Since 2008, over one hundred MS Trust supporters have cycled from London to Paris to raise vital funds. We would like to make next June's ride one of our major fundraising events in 2012. This fantastic cycle challenge takes you through lovely English villages and into the stunning countryside of rural France before arriving at your destination Paris's iconic Eiffel Tower! Book early for our London to Paris cycle ride, which takes place from 13 to 17 June 2012, and give yourself plenty of time to train and fundraise. All you need to pay on booking is a deposit of £139 and then you have lots of time to raise the minimum sponsorship of £1,400. Why not see if you can get a team of friends or colleagues to take part together and share the fundraising and training? For more information please get in touch or visit our website - www.mstrust.org.uk/londontoparis If this challenge isn't for you then perhaps you could help us by displaying the enclosed poster.
The first ever International Legacy Giving Day will be held on Tuesday 13 September during Remember A Charity Week. An international alliance of charities from Australia, Belgium, Canada, Ireland, Spain, Switzerland and Norway will join the UK's Remember A Charity to mark International Legacy Giving Day.
Do you know any skiers or snowboarders who might like to try something different for their next ski trip? We are looking for around 20 people to join us in Tignes, France for our fifth Monster Ski challenge, which will take place from 22 to 26 March 2012. Participants need to be fairly experienced on the slopes and confident on a red run as they will be skiing the height of Mount Everest every day! Our last Monster Ski event raised over £80,000 to help fund our work and four members of our team had MS themselves. Robin was one of them and he told us, “I found the whole experience amazing and uplifting in terms of my journey in life since being diagnosed - certainly a challenge and one I cannot believe I completed with my MS. The support and encouragement of the group during the trip was superb.”
To find out more about gifts in wills and how they enable the MS Trust to help people affected by MS, visit www.mstrust.org.uk/wills
will provide essential information to someone newly diagnosed with MS
For more information, please get in touch or visit www.mstrust.org.uk/monsterski. We would also love to hear from you if you are able to display a poster to help us promote the event.
£5 will provide
Could you volunteer this Christmas?
four people with a copy of Open Door
“A very enjoyable and practical way of supporting the MS Trust.” Mrs Williams, Oxford
Thank you for helping us to support MS nurses We would like to say a big thank you to everyone who responded to our recent appeal for our MS Nurse Support Programme, helping to raise over £34,000 so far. We are still raising funds for this project and you can read more about it and donate on our website at www.mstrust.org.uk/nurses If you would like to donate £3 to support MS nurses right now, you can do so using Justgiving's free text donation service. Simply text MSNS35 £3 to 70070 and the payment will be made via your mobile phone. We have lots of work still to do and every donation helps!
14
Skiers needed for our 2012 Monster Ski challenge
www.mstrust.org.uk
The MS Trust needs your help! We are looking for volunteers to help sell our Christmas cards in Cards for Good Causes shops. These temporary shops are located in churches, libraries, museums and community centres all over the country. They run from October to December and ideally you would need to be available for either one morning or
afternoon per week during this time. Volunteering with Cards for Good Causes is a great opportunity to meet people, support the MS Trust and choose your cards early without the crowds! “I sell the charity cards listening to the choir and orchestra rehearsing for Christmas concerts and it is just the best start to my festivities every year.” Mrs Newlands, St Albans
To find out more about any of our activities, please call 01462 476707 email fundraising@mstrust.org.uk or visit www.mstrust.org.uk/fundraising
Call: 0800 032 3839
15
Order form For a full list of publications visit www.mstrust.org.uk/publications
DVDs Move it for MS – a DVD of exercises for people with MS (£1) Also visit the Exercises for people with MS pages at www.mstrust.org.uk/exercises
Books Sex and MS - a guide for men NEW Sexuality and MS - a guide for women UPDATED 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
Factsheets Regularly updated, we now have more than 20 titles available including Fampridine NEW Fingolimod (Gilenya) Natalizumab (Tysabri) Spasticity and spasms Vitamin D FES Stem cells
Publication leaflet The full list of titles available from the MS Trust Exercise & MS - resources for people with MS and their health professionals 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
Date
/
/
You must pay an amount of Income Tax and/or Capital Gains Tax in each tax year (6 April 2011 to 5 April 2012) at least equal to the tax that the MS Trust will claim from HM Revenue and Customs on your Gift Aid donation(s) for that tax year. Please notify us if you change your name or address.
Name Job title (if health professional) Address
Postcode Telephone number A copy of the MS Trust’s data protection policy is available on request
The Information Standard What is it and how will it make a difference to me? It is said that there is more information in one issue of the Sunday Times than a medieval scholar would have come across in a lifetime. There are over 50,000 producers of health and social care information in the UK alone and typing ‘multiple sclerosis’ into Google produces more than 8 million results. In all of this, how easy is it to judge what information is accurate, based on good evidence, up-to-date and unbiased? The Information Standard was devised by the Department of Health to allow people to do just this. Information providers who meet the Standard have demonstrated how information fits into the aims of the organisation, how evidence for a particular publication is identified and assessed and how the target audience and expert reviewers are included in developing information. High quality information is key to the successful management of MS. It has been shown to increase confidence and involvement in making decisions, reduce isolation and anxiety and improve clinical outcomes. Now there is an easy way to recognise health information you can trust. Evidence based information has been at the heart of the MS Trust's work since our foundation in 1993 and so we are delighted to have been certified to carry The Information Standard quality mark. You will soon see this on our publications and website pages. The assessment process is rigorous and will be ongoing, but we believe it will help us to ensure that the information we produce is accurate, evidence based and relevant to people living with MS. Would you like work with the MS Trust in developing information resources? To find out more and join our readers' panel email info@mstrust.org.uk or call the information team on 01462 476700
Return to: MS Trust, Spirella Building, Letchworth Garden City, Herts, SG6 4ET
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
August 2011
Inside this issue...
Welcome to the summer edition of Open Door
Oral MS drugs
Improving services for people with MS is one of our main aims and that comes from the education and support work we do with MS nurses and therapists and the research we commission. We have just completed our third audit of MS services in England and Wales against the NICE MS Management Guidelines. As well as people with MS, the audit collected data from those organisations who commission, provide, and monitor MS services and this time we included GPs, who will have a much bigger role in commissioning in the future. The audit is carried out in partnership with the Royal College of Physicians (RCP), where analysis is underway and the full results will be published in September. Thanks to all of you who took the trouble to take part, especially as there were some problems with the RCP survey website.
6
My Story
10
MS Trust comes of age!
12
As you can see below, we have recently launched Sex and MS a guide for men, along with an updated version of Sexuality and MS for women. Sex is not an easy topic to talk about, so our sincere thanks must go to everyone who has shared their experiences for these books and to our contributors on pages 8 & 9. We have been overwhelmed with the response to My Story on our website, from both authors and readers. Here we feature just three stories of MS from different perspectives, but there are many more personal reflections on the website and thank you to everyone who has contributed. As it’s August, it must be Christmas catalogue time and as usual we offer free post and packing during this month. Very best wishes and thank you for supporting our work.
Pam Macfarlane Chief Executive
Also inside:
New books on sex and MS The MS Trust's latest books are Sex and MS: a guide for men and a revised version of Sexuality and MS: a guide for women. Both books give a frank explanation of symptoms and a guide to treatment and management. The intention is to help people talk about their concerns, not only to healthcare professionals but also to their partners and friends. For more about the books see pages 8 and 9.
www.mstrust.org.uk
Call: 0800 032 3839
MS and access to services
2
News
3
Research news
4
Men, MS and sex
8
Me, MS and my sexuality
9
Supporting the MS Trust
14