April 2015-Way Ahead -Volume 19 Part 2

wayahead The periodical for health professionals with an interest in MS April 2015

I S S N 1466-559x

Volume 19 Part 2

2-3 Research news

Updates on availability of Plegridy in Scotland, recruitment to the MS-SMART trial, vaccination and MS onset, and worsened fatigue with OTC sleeping tablets.

4-6 Improving treatment adherence in MS Jared Bruce

Looks at the reasons behind poor adherence to disease modifying therapies in MS, and ways that might help people with MS improve their adherence, including motivational interviewing and CBT.

6-7 Policy and campaigning

Commentary on The Invisible Patients report from the Neurological Alliance which highlights the invisibility of people with MS to their local Clinical Commissioning Groups.

10-12 Supporting people to self-manage their MS Helen Gilburt

Article discusses the concept of patient activation, how it can be measured and ultimately how it can be used to help support people with MS to adopt positive health behaviours.

13-15 Telerehabilitation to support behaviour change in MS Lorna Paul

Describes four case studies from around Europe which are successfully using telerehabilitation to deliver services and improve clinical outcomes.

15-16 Information news

Find out how to submit an article for Way Ahead and keep up to date with new information.

17-18 MS specialist nurse meeting report

Report from the March 2015 MS specialist nurse meeting. Includes information on the MS Trust Annual Conference 2015.

Call: 01462 476700

8-10 Social isolation in MS Sarah Robbens

Study which explores the issue of social isolation in people who are severely affected by their MS and identifies potential areas of intervention. www.mstrust.org.uk

2

Research news Plegridy available in Scotland The Scottish Medicines Consortium (SMC) has approved peginterferon beta 1a (Plegridy) as a treatment for relapsing remitting MS on the NHS in Scotland.

Peginterferon beta 1a is a disease modifying drug which was approved for use in the European Union in July 2014. It is a new treatment, formed by adding polyethylene glycol to interferon beta 1a to allow the drug to remain longer in the body. As a result, peginterferon beta 1a is injected under the skin once every two weeks rather than the more frequent injections required with the other interferon beta drugs.

Clinical trials have shown that peginterferon beta 1a has a similar effect to interferon beta 1a, reducing the relapse rate by about a third

compared to placebo. The side effects of the new drug are also similar, with some people experiencing redness at injection sites and flulike symptoms.

The Scottish Medicines Consortium is the first regulatory body in the UK to approve the use of Plegridy on the NHS. The regulatory bodies for England (NICE), Wales and Northern Ireland have not yet considered Plegridy.

More information about Plegridy is available in the online A to Z of MS www.mstrust.org.uk/atoz/

MS-SMART trial recruiting The MS-SMART clinical trial will test three drugs that are currently licensed for other conditions, an approach known as repurposing, in people with secondary progressive MS (SPMS). The trial design is innovative in that it will test the three drugs in parallel against a placebo, the trial drugs can then be dropped along the way if they are not showing efficacy.

The drugs being tested are fluoxetine, already used for treating depression; riluzole for motor neurone disease and amiloride for high blood pressure and heart disease. Previous studies have suggested that these drugs might be neuroprotective and so may protect nerves from further damage from MS. Studying drugs where the safety profile is already known potentially takes years off the time usually needed to test new treatments.

Researchers have begun recruiting 440 people with SPMS across the UK and anticipate that it will take approximately one year to screen people. Participants will take one of the drugs or placebo for two years. The main inclusion criteria are that participants should not be on

a DMT or taking an SSRI (selective serotonin re-uptake inhibitor), still able to walk at least 20 metres with the support of two crutches or up to 500 metres without help, and be aged 25-65 inclusive.

Further details about the study are available on the MS-SMART website www.ms-smart. org which gives details of the hospitals involved in the study, more details on taking part and the opportunity to express an interest in participating.

Information about fluoxetine, riluzole and amiloride is available in the online A to Z of MS www.mstrust.org.uk/atoz/ Information about SPMS is available from the back page.

MS Frontiers The MS Frontiers annual meeting brings together experts from around the world to speak on MS research.

The research presentations are aimed at: • researchers • neurologists • clinicians • allied health professionals • students in any of the above fields. www.mstrust.org.uk

This year’s conference takes place 29-30 June at the Sofitel London, Heathrow Airport.

For more details about the programme and how to register go to: w w w. m s s o c i e t y. o r g . u k / m s - e v e n t s / ms-frontiers-2015

No link between vaccination and onset of MS

3

There have been reports that some people have developed MS after they had been vaccinated. However, it is not clear whether this was a coincidence and they would have developed MS anyway, or if the MS was as a result of the vaccination. Two recently published papers investigated whether there could be a link between vaccination and the onset of MS.

Human papillomavirus (HPV) vaccine of electronic health records held by a In the UK, the HPV vaccine is offered to girls aged 12 to 13 as part of the national vaccination programme. The vaccine protects against cervical cancer.

In the published paper, data were examined from nearly four million Danish and Swedish girls and women from 2006 to 2013. Using national registers, the researchers analysed information on HPV vaccination (Gardasil) and diagnoses of multiple sclerosis. They found no evidence of a link between HPV vaccination and subsequent diagnosis of MS.

Scheller NM, Svanström H, Pasternak B, et al. Quadrivalent HPV vaccination and risk of multiple sclerosis and other demyelinating diseases of the central nervous system. JAMA 2015; 313: 54-61.

HPV, hepatitis B and other vaccines

Another study looked at whether vaccines, particularly those for hepatitis B and human papillomavirus (HPV), increased the risk of MS or other central nervous system demyelinating syndromes.

Information was analysed from a database

southern California health care provider. 780 people with central nervous system disorders, including MS, were identified along with five controls per case who were matched on age, sex, and postcode.

Overall, there was no long term association found between any vaccination and onset of MS within three years, suggesting there is no causal link. However, vaccination was associated with a short term increased risk of demyelinating conditions of the CNS within the first 30 days after vaccination in those under 50 years of age. The authors suggest that vaccines may accelerate the transition from subclinical to overt autoimmunity in patients with existing disease. However, they believe that there is no need for a change in vaccine policy.

Langer-Gould A, Qian L, Tartof S, et al. Vaccines and the risk of multiple sclerosis and other central nervous system demyelinating diseases. JAMA Neurol 2014; 71: 1506-13.

Information about the causes of MS, risk factors and vaccination is available online in the A to Z of MS www.mstrust.org.uk/atoz/

Over the counter sleeping tablets may worsen fatigue Sleep problems and fatigue are both common in people with MS. Previous research has shown that a lack of sleep can make fatigue and other MS symptoms worse. Therefore, in order to get a good night’s sleep, some people use sleeping tablets. However, little is known about the use of sleeping tablets in MS and the consequences for fatigue levels.

A group of 190 people with MS in the USA completed several questionnaires that explored their sleep habits, use of sleeping tablets, levels of fatigue and daytime sleepiness.

Nearly half of the participants (89 people) said they used sleeping tablets; 50 participants used prescription medication and 59 used over the counter products, some participants used both. The study found that more people who were suffering with fatigue were also using sleeping tablets. Participants taking sleeping tablets also had higher levels of fatigue.

When the researchers investigated further, they found that the higher levels of fatigue were associated with using over the counter products containing diphenhydramine, but not with prescription medications.

The researchers stress that their study cannot prove that these medications are the direct cause of the higher levels of fatigue seen in these participants. They recommend that, while the effect of these particular medications on MS fatigue are investigated further, alternative approaches and treatments should be considered to help people with MS get a good night’s sleep.

Information about sleep and MS, including tips for effective management of sleep difficulties, is available in the online A to Z of MS www.mstrust.org.uk/atoz/ There is also an article by Paula Cowen, MS Specialist Physiotherapist, on ‘Sleep disturbance and MS’ in Way Ahead 2011; 15(4): 6-7. w w w. m s t r u s t . o r g . u k / p r o f e s s i o n a l s / information/wayahead/articles/15042011_05.jsp Call: 01462 476700

4

Understanding and adherence in MS

improving

treatment

Dr Jared Bruce, Clinical Psychologist and Associate Professor and Director, Undergraduate Psychology Program; Dr Delwyn Catley, Professor of Psychology; Dr Amanda Bruce, Clinical Psychologist and Assistant Professor; Department of Psychology, University of Missouri, USA

Is adherence a problem in MS? Multiple sclerosis (MS) causes physical, emotional, and cognitive symptoms that significantly reduce patients’ quality of life.

While no cure exists, an increasing array of treatments offer hope to slow disease progression, reduce exacerbations, and improve overall quality of life.

For instance, disease modifying therapies (DMTs) can reduce relapses by as much as 68%, reduce the formation of new brain lesions, and slow overall disease progression1. There is also evidence that psychotherapy and exercise can help alleviate MS-related depression and fatigue2-5. Despite the development of these effective therapies, non-adherence to treatment remains a significant problem.

Non-adherence can take many forms.

Patients may choose not to start treatment against medical advice, may prematurely discontinue treatment, or only take doses sporadically. Research consistently shows that between 30 and 50% of MS patients may discontinue treatment with their DMTs prematurely6-8. Moreover, of those patients who continue treatment, 1 in 5 miss more than 20% of their doses9. Taken together, a growing body of evidence suggests that as many as 50% of MS patients may not receive the benefits of DMTs.

Possible causes of poor adherence in MS Poor adherence is a problem in most chronic diseases, not just MS. Patients diagnosed with a chronic medical illness are commonly prescribed longterm preventive medications that cause immediate side effects and offer uncertain distant benefits. For example, patients

with hypercholesterolemia, epilepsy, lupus, and MS are frequently instructed to take medications that cause immediate hassles, costs, and unpleasant side effects, while www.mstrust.org.uk

increasing the probability of improved future health outcomes (e.g. reduced future risk of stroke, seizure, exacerbation). These preventive medications are in direct contrast to medications like analgesics that can immediately ease suffering. Other factors that are known to be associated with poor adherence in MS include perceived lack of treatment efficacy, cost, psychiatric illness, and cognitive impairment10-12.

Adherence interventions in MS Few studies have examined ways to improve adherence to DMTs in MS. Berger and colleagues13 conducted a randomised clinical trial with the aim of increasing medication persistence among a group of MS patients initiating DMT treatment using a telephonebased counselling treatment. In this study, patients receiving motivational interviewing (MI) counselling were significantly less likely to discontinue their DMT compared to patients receiving standard care. Similarly, Turner and colleagues14 found that patients who received three telephone sessions of motivational interviewing missed fewer doses of DMT than patients who did not receive the counselling.

MI has also been used for increasing physical activity and stress management among patients with MS 15. Additional research shows that treatment of depression using cognitive behavioural therapy (CBT) improves DMT persistence and exposure therapy improves uptake of treatment among MS patients with needle phobias 16, 17.

What are motivational interviewing (MI) and cognitive behavioural therapy (CBT)?

The limited data we have suggests that MI and CBT may help MS patients adhere to their treatment regimens. MI provides the ideal

approach for an intervention targeting nonadherent MS patients in a health care setting, as it is brief, and specifically designed to foster motivation for behaviour change among individuals reluctant to change behaviour while supporting patient autonomy18. MI is a collaborative, goal-oriented style of communication with particular attention paid to the language of change. MI strengthens personal motivation for, and commitment to, a specific goal by eliciting and exploring the individual’s own reasons for change within an atmosphere of acceptance and compassion.

Counsellors use specific communication skills including reflective listening, and avoid persuasion, arguing, and confrontational approaches. MI emphasises acceptance, including respect for the patient’s autonomy and placing responsibility for the decision to change with the client. This is particularly important for taking DMTs because each patient needs to make their own evaluation of the risks, side-effects, and quality of life impact of taking medications. Research also indicates that patients are far more likely to choose and succeed with behaviour change when they have voiced their own reasons for change and made their own decision to commit. In MI, the focus of the clinician is not on pushing for the desired outcome but on facilitating a meaningful conversation that provides the greatest opportunity for patients to make a fully informed and thoughtfullyconsidered decision. Motivation is fostered through evoking consideration of behaviour change in relation to the patient’s own goals and values.

Cognitive behavioural therapy (CBT) is an amalgamation of therapeutic strategies loosely related through principles of behavioural and cognitive psychology. CBT is typically distinguished by its empirical, short-term, specific approach. CBT emphasises data collection regarding the target behaviour, including the antecedents and consequences, the development of specific coping skills or strategies for behaviour change, and homework by the client to practice and implement the skills or strategies. For example, to address the impact of negative moods on adherence, CBT might involve systematic self-monitoring of negative automatic thoughts to identify the critical factors affecting non-adherence. This data would then be used to challenge negative thoughts and develop healthy behaviours.

I’m not trained in MI or CBT, what can I do?

Research suggests that most physicians do not think adherence is a problem in MS19.

As a result, they may not always assess adherence or ask patients about treatment barriers. This problem is compounded in situations where patients may not want to disappoint their clinicians by letting them know they have not been following treatment recommendations.

Creating an open, non-judgmental clinical environment may help patients freely discuss their medication and other treatment difficulties. Moreover, regularly asking about treatment adherence and barriers demonstrates to patients that adherence is important.

Below are four questions that clinicians can ask to foster an open, non-threatening discussion about adherence in MS. Questions should be asked after obtaining permission from the patient by saying, “If it is alright with you, may I ask you some questions about your treatment?”

1. Patients sometimes have difficulty taking medications as they are prescribed, have you had any difficulty taking your medications or missed any doses in the past two weeks?

2. What kinds of barriers have prevented you from taking your medications?

3. Have you thought of any ways that you might be able to overcome those barriers?

4. If it is alright with you, can I share some ways that other people with MS have tried to overcome barriers like the ones you’re describing?

By regularly asking about adherence, actively listening to patient concerns, conveying interpersonal warmth, and working together to problem-solve common barriers, we may be able to improve treatment adherence in MS. References: 1. Castro-Borrero W, Graves D, Frohman TC, et al. Current and emerging therapies in multiple sclerosis: a systematic review. Ther Adv Neurol Disord 2012;5(4):205-20.

2. Moss-Morris R, McCrone P, Yardley L, et al. A pilot randomised controlled trial of an internet-based cognitive behavioural therapy self-management programme (MS Invigor8) for multiple sclerosis fatigue. Behav Res Ther 2012;50(6):415-21.

Call: 01462 476700

5

6

3. Mohr DC, Hart SL, Julian L, et al. Telephone-administered psychotherapy for depression. Arch Gen Psychiatry 2005;62(9):1007-14.

4. Asano M, Berg E, Johnson K, et al. A scoping review of rehabilitation interventions that reduce fatigue among adults with multiple sclerosis. Disabil Rehabil 2014 Jul 28:1-10. [Epub ahead of print] 5. Ensari I, Motl RW, McAuley E, et al. Patterns and predictors of naturally occurring change in depressive symptoms over a 30-month period in multiple sclerosis.

Mult Scler 2014;20(5):602-9.

6. Wong J, Gomes T, Mamdani M, et al. Adherence to multiple sclerosis disease-modifying therapies in Ontario is low. Can J Neurol Sci 2011;38(3):429-33.

7. Reynolds MW, Stephen R, Seaman C, Rajagopalan K. Persistence and adherence to disease modifying drugs among patients with multiple sclerosis. Curr Med Res Opin 2010;26(3):663-74.

8. Halpern R, Agarwal S, Borton L, et al. Adherence and persistence among multiple sclerosis patients after one immunomodulatory therapy failure: retrospective claims analysis. Adv Ther 2011;28:761-75.

9. Bruce JM, Hancock LM, Lynch SG. Objective adherence monitoring in MS: initial validation and association with self-report. Mult Scler 2010;16(1):112-20.

10. Turner AP, Kivlahan DR, Sloan AP, Haselkorn JK. Predicting ongoing adherence to disease modifying therapies in multiple sclerosis: utility of the health beliefs model. Mult Scler 2007;13(9):1146-52.

11. Pozzilli C, Schweikert B, Ecari U, Oentrich W; BetaPlus Study group. Supportive strategies to improve adherence to IFN β-1b in multiple sclerosis - results of the βPlus observational cohort study. J Neurol Sci 2011;307(1-2):120-6.

12. Bruce JM, Hancock LM, Arnett P, Lynch S. Treatment adherence in multiple sclerosis: association with emotional status, personality, and cognition. J Behav Med 2010;33:219-27.

13. Berger BA, Liang H, Hudmon KS. Evaluation of softwarebased telephone counseling to enhance medication persistency among patients with multiple sclerosis. J Am Pharm Assoc (2003) 2005;45(4):466-72.

14. Turner AP, Sloan AP, Kivlahan DR, Haselkorn JK. Telephone counseling and home telehealth monitoring to improve medication adherence: results of a pilot trial among individuals with multiple sclerosis. Rehabil Psychol 2014;59(2):136-46.

15. Bombardier CH, Cunniffe M, Wadhwani R, et al. The efficacy of telephone counseling for health promotion in people with multiple sclerosis: a randomized controlled trial. Arch Phys Med Rehabil 2008;89(10):1849-56.

16. Mohr DC, Goodkin DE, Likosky W, et al. Treatment of depression improves adherence to interferon beta-1b therapy for multiple sclerosis. Arch Neurol 1997;54(5):531-3.

17. Mohr DC, Boudewyn AC, Likosky W, et al. Injectable medication for the treatment of multiple sclerosis: the influence of self-efficacy expectations and injection anxiety on adherence and ability to self-inject. Ann Behav Med 2001;23(2):125-32.

18. Miller WR, Rollnick S. Motivational interviewing: helping people change. 3rd ed. New York: The Guilford Press; 2013.

19. Riñon A, Buch M, Holley D, Verdun E. The MS Choices Survey: findings of a study assessing physician and patient perspectives on living with and managing multiple sclerosis. Patient Pref Adherence 2011;5:629-43.

Policy and campaigning MS patients are ‘invisible’ in most CCGs Alice Hamilton, Policy Officer, MS Trust

The Neurological Alliance (NA) works with 80 member organisations, including the MS Trust, to campaign for better services and outcomes for people with a neurological condition. In January the NA published a new report, The Invisible Patients1, which found that people with MS in England are effectively invisible to their local Clinical Commissioning Groups (CCGs), accessing and utilising local health and social care services in the absence of effective commissioning.

The NA sent freedom of information requests to all CCGs, to ascertain how aware they were of neurological conditions in their patch.

What they found was: • only 15% of CCGs have assessed local costs relating to the provision of neurology services • only 20% of CCGs have assessed the number of people using neurological services within their area • only 26% of CCGs have assessed the prevalence of neurological conditions within their area

www.mstrust.org.uk

• only 33% of CCGs obtain vital feedback from patients in regards to the neurological services they commission • these issues have a significant impact on patients’ care with 58% of patients having experienced problems in accessing the services or treatment they need.

The MS Trust has other evidence to indicate that CCGs are not interested in people with MS. In November, we published our investigation into access to MS specialist nurses, MS specialist

nursing in the UK 2014: the case for equitable provision2. We found that 74% of Clinical Commissioning Groups in England don’t have enough MS specialist nurses to provide best care for people with MS in their area; 28% don’t have nearly enough and some don’t have any. The Case for Equitable Provision made a number of recommendations, including: • commissioners should determine and fund a high quality MS specialist nurse service • service providers should ensure that every person with MS in their area has access to an MS specialist nurse who has a sustainable caseload.

with neurological conditions, underpinned by routine and rigorous assessments of the prevalence of neurological conditions and of the number of people using neurological services locally • all CCGs should ensure that mechanisms are put in place to encourage and capture patient feedback and input in regards to the quality and development of local neurology services • CCGs should work in partnership to identify clinical and research trial opportunities locally and support the appropriate sharing of information on such opportunities with patients.

These issues are becoming more important with a drive from NHS England to move responsibility for commissioning and funding more neurological services from specialised commissioning (NHS England funded) to CCG commissioning.

This process has started with a clear indication in NHS England’s Commissioning Intentions for 2015/163 document that CCGs are now responsible for commissioning all neurology outpatient appointments. The MS Trust is concerned that people with MS may not be referred to neurology services at all if CCGs are unaware of how many patients in their patch may require that service.

The Invisible Patients report expresses similar concerns, and sets out recommendations that include: • every CCG should collate up to date and accurate local neurology data, about the use and need for services specifically for people

The MS Trust strongly believes that access to specialist healthcare professionals is vital for people with MS to get the best possible care for their condition. We will continue to work with the Neurological Alliance and other organisations to ensure that Clinical Commissioning Groups are aware of their responsibility to provide people with MS access to high quality services provided by MS specialists with sustainable caseloads.

References: 1. Neurological Alliance. The invisible patients: revealing the state of neurology services. London: Neurological Alliance; 2015. Available at: www.neural.org.uk 2. Mynors G, Bowen A. MS specialist nursing in the UK: the case for equitable provision. Letchworth: MS Trust; 2014.

Available at: http://www.mstrust.org.uk/downloads/casefor-equitable-provision-v7hr.pdf 3. NHS England. Commissioning intentions 2015/16 for prescribed specialised services. London: NHS England; 2014. Available at: http://www.england.nhs.uk/wpcontent/uploads/2014/10/comms-intents-2015-16.pdf

Publication orders for health professionals – order by 10 am on a Wednesday Since January this year we have been introducing some changes to the way in which we despatch orders for our publications. By and large we are now fulfilling the bigger orders made by health professionals once a week, which is allowing us to turn around smaller individual orders a little more quickly, whilst still trying to keep our costs under control.

Placing your order by 10 am on a Wednesday will ensure the speediest delivery. Orders can be placed through the website or by phone - the packages go to the courier on a Friday so should arrive by Monday/Tuesday the following week.

In an emergency it is always worth getting in touch with Ally, Kiersten or Jo in the Services Support Team by email info@mstrust.org.uk or phone 01462 476700, and we can try to arrange an urgent delivery, but to keep our costs down it really helps if people plan ahead when they can.

Call: 01462 476700

7

8

Social isolation amongst people severely affected by multiple sclerosis Sarah Robens, Hilary Gunn, Andrew Kemp, Esther Fox, Jenny Freeman; University of Plymouth and the MS Society

Introduction People with MS who live with severe impairment, and in particular the 20% who are estimated to be confined to their homes, consistently report feelings of isolation. Because these individuals are unable to leave their home easily, it can be extremely difficult for third sector organisations to engage with them and discover how they can best provide support or services. The MS Society collaborated with the University of Plymouth to explore this issue and identify potential solutions. The study objectives were to explore: • the definition and understanding of isolation • the lived experience of ‘if’ and ‘how’ people are affected by isolation • the reasons why people feel they have become isolated • whether they feel this isolation could be minimised, and how this might be achieved • the type of support and/or services that could help reduce isolation.

Method Purposive sampling was used to achieve maximum variation between the participants chosen for the study. In total, 16 participants were recruited whose severe levels of impairment limited their access to, and engagement in, activities and who were confined to their homes for long periods. We targeted people scoring ≥ 6.5 on the Expanded Disability Status Scale (EDSS), i.e. those restricted to walking 20 metres with a walking aid without resting.

Participants were excluded if they could not effectively give informed consent, or had severe communication difficulties.

Data collection and analysis

In-depth interviews were undertaken within the participants’ homes. The interviews were structured using a topic guide which was developed in close collaboration with people affected by MS. The interviews were conducted with sufficient flexibility to enable participants to raise issues they considered important. Thematic analysis of the interviews was carried out using frameworks.

Results The study found a spectrum of both definitions and experiences of isolation, but with the following uniting themes: • choice • control • identity. www.mstrust.org.uk

Overall, feelings of social isolation were heightened by a constant reliance on others.

The data suggested the impact of MS on self-identity heightens this sense of isolation, particularly when ‘normal’ roles and interactions are restricted by disability.

Defining social isolation

Participants’ descriptions highlighted that isolation is not just about being on your own.

Overall, the definitions could be grouped into five key themes: • being on your own • being cut off/out of reach • finding it difficult to go out/not able to do anything • being reliant on others • not having the usual interaction/activity/ participation with the world.

These definitions cover aspects of ‘personal agency’ and the ‘agency of others’. Personal agency includes issues such as being reliant on others, for example, it was apparent that many participants felt they did not have the power, control, or ability to be able to do what they wanted to. In contrast, the agency of others relates to issues such as being on one’s own, being out-of-reach, or not having the usual personal and social interactions. There is also an implication that the actions of others can impact on the isolation experienced, for example, other people make decisions as to when and whether the person with MS is on their own.

“ It’s finding that you are probably of your own volition, um, a non-person to the rest of the world. Because you are committed to your own relatively small environment, so most of the world doesn’t… because you’re not out there and of it… the isolation is actually more of an enclosure. You’re not part of that great outside world.” Participant 1 There is a sense of powerlessness, lack of choice and control over daily life, and also a discourse around changes in self-identity.

Whilst isolation is about being on one’s own, it is often expressed in terms of changes in how a person lives. Not seeing people and being on one’s own occurs because the individual is no longer able to do what they used to do, in the way they used to do it, creating a change in their self-identity.

Causes of social isolation

The definitions of social isolation point towards multiple causes which are individually interlinked in personal and complex ways.

They describe isolation in terms of: • physical separation • social separation • separation from self • separation from agency.

Physical separation relates to the social isolation that occurs as a result of reduced physical ability (movement and function).

Mobility was viewed as a major issue, with people reporting that, despite mobility aids, “It is just such hard work to get out.” In most cases, people were reliant on others to use hoists, lift wheelchairs in and out of cars, or enable the use of adapted cars; all of which required immense effort. Access to shops, the state of pavements, or difficulties using disabled toilets were also reported as causing considerable challenges, which in turn impacted on people’s desire to leave home. A key physical issue was continence problems, particularly for women, some of whom reported staying at home because of this, even when mobility was feasible. Fatigue was another important consideration, with all participants reporting that too much activity made them tired and that their day was limited by the need to rest. “ Would I want to do the same things as before? I couldn’t. Even if I had the freedom of being able to take myself where I wanted to, I wouldn’t do it anymore.” Participant 3

Social separation is about separation from society and social roles. People describe feeling different in a social context, which impacts on their ability to interact with others. “ It’s kind of like sometimes I feel I’m making excuses… so that I don’t go out. So I don’t get pitied. So I don’t get ignored and I don’t get doors slammed in my face, or I don’t get somebody saying “You now, can you do this, can you do that?”” Participant 2 Participants reported losing contact with friends because they felt they were not understood, or just simply that it was too difficult to meet up. They also noted that social embarrassment or shame limited their social interactions, particularly in relation to eating, movement and toileting.

Separation from self refers to changes in someone’s perception of their own identity.

People’s life roles may change because of physical disability, they find themselves unable to work, to cook, to look after family members or attend community activities.

Activities such as these give people a sense of their place in society, in their family and in their relationships, and our participants provided clear stories about how such separation from their own identity created social isolation. “ I’ve spent an awful lot of time just sat doing not much… I suppose it’s because I’ve always been able to do all of that, whether it’s DIY or work, or making things, whatever, the not being able to do it is in itself isolating.”

Participant 1 Separation from one’s own agency is about how people become unable to do what they want. Issues relating to lack of independence, choice and control were mentioned by most participants, with one describing social isolation as: “Having to be with somebody else all of the time.” This issue can result in people losing motivation, which in turn can lead to increased isolation. Faced with an inability to interact on one’s own terms, and with ease, people reported ‘self-isolation’ - withdrawing themselves from possible social interaction.

Relieving social isolation

The participants found it difficult to identify what would ease their isolation due to seemingly immense barriers. MS support groups tended to be viewed unfavourably, Call: 01462 476700

9

10

largely because people did not feel their experiences of MS were comparable, and did not like to see people in a ‘worse state’ than themselves. This reluctance also related to control and choice; they felt they were obliged to relate to people because they had MS, even if they had nothing else in common. Having a ‘normal’ friendship or social interaction around an interest, rather than an illness, was very hard.

Access to services was very varied, some had access to ‘on-call’ support, and some received direct payments, whilst others had fought for years to receive limited services. Support for carers was also very limited and the pressures immense; no carers of those interviewed had received a needs assessment, and the lack of support clearly impacted on them and the person they care for.

Potential areas of intervention Our findings suggest that individual personcentred approaches are needed to help reduce the feelings of isolation. A range of strategies and support mechanisms could potentially minimise this isolation, including: • use of personal health budgets • easing mobility difficulties • access to services such as depression and anxiety services.

For these to be effective, our findings suggest that there is a need to ensure that choice, control and identity are central to the intervention.

Supporting people to self-manage – the role of patient activation Helen Gilburt, Fellow, Health Policy, The King’s Fund

Introduction The development of medical treatments for multiple sclerosis (MS) continues to progress, however it remains the case that much of the day to day management of the condition comes down to how an individual deals with their symptoms, and the activities they undertake to stay healthy. Some patients see this as a central part of living with MS, and with information and advice from health professionals, they are able to take on this often considerable role. But for those that don’t, is there more that professionals can do to support them and how can existing approaches be modified to improve the outcomes of people with MS overall?

The question of what it means to be an active and engaged patient is at the core of The King’s Fund’s recent report ‘Supporting people to manage their own health: an introduction to patient activation’1. Patient activation is defined as ‘an individual’s knowledge, skills, and confidence in managing their health and health care’2. Developed through a process of understanding the key differences between those who take an active role and those who do not, Professor Judith Hibbard found that underlying this difference was the ‘self-concept’ individuals had as capable and effective agents in managing their health. Ultimately, people who are good at self-management understand the importance of playing their part, know what to do, and feel capable of fulfilling that role.

Measuring patient activation The development of the patient activation measure (PAM) has enabled researchers and clinicians to apply this knowledge in www.mstrust.org.uk

practice. The measure comprises a 13 item questionnaire which is filled out by the individual and has been validated in people with multiple sclerosis3. However, because it captures how they see their role in relation to managing their health overall, it is not specific

to any particular condition or symptom.

While the measure provides a score between 0 and 100, repeated studies have found that four groups or ‘levels of activation’ arise ranging from low activation to high

activation, which characterise the individuals’ capabilities, beliefs and likely behaviours at different points of the scale. Table 1 provides an illustration of how individuals at each level of activation differ.

Table 1. The four levels of patient activation Level 1

Individuals tend to be passive and feel overwhelmed by managing their own health. They may not understand their role in the care process.

Level 2

Individuals may lack the knowledge and confidence to manage their health.

Level 3

Individuals appear to be taking action but may still lack the confidence and skill to support their behaviours.

Level 4

Individuals have adopted many of the behaviours needed to support their health but may not be able to maintain them in the face of life stressors.

Patient activation and outcomes The characteristics of individuals at each of these levels may resonate with health professionals but the use of PAM at a population level highlights why this is so important. Numerous studies have demonstrated that patient activation scores are associated with the adoption of a number of different health behaviours, clinical outcomes, patient experience, and with the cost of care. People with higher activation scores are more likely to adopt positive health behaviours, have positive clinical outcomes, experience greater satisfaction with care, and are less likely to use A&E or require hospitalisation. In addition, low activation in people with MS has been correlated with depression and quality of life4. As such, patient activation provides a mechanism of understanding how likely an individual is to be successful at managing their MS and identify those who are likely to require greater support to achieve positive outcomes.

Using PAM to support self-management While educational programmes have proven effective at improving health behaviours and outcomes, those who attend are often the most engaged and capable. However,

understanding the capabilities of individuals using PAM is enabling practitioners to address this by tailoring interventions to individuals at different levels of activation.

One of the applications which has proven most effective is tailored health coaching. Clinicians have found that measuring an individuals’ activation level helps them to not only identify who needs additional support, but knowing where they fall on the PAM scale provides guidance on the type and amount of support that is likely to be helpful to the person. In practice, patient activation is not about categorising patients, but about enabling clinicians to ‘meet people where they are’, putting patients at the centre of care. So even though an individual may benefit from making multiple changes, this is likely to overwhelm and discourage someone with a low level of activation. Instead the clinician and patient focus together on one issue that is most important to the patient, and then the clinician supports them to break down that behavioural goal into small, manageable steps. The clinician then checks back in with the patient to see how they are doing, work out the next step and overcome barriers along the way. Tailored coaching approaches have been demonstrated to not only support the adoption of health behaviours but also increase levels of activation. Routine use of the PAM therefore not only serves as a means to tailor care, but provides a mechanism to track the progress of an individual or a group of patients in managing their condition.

Call: 01462 476700

11

12

Tailoring care pathways A second application of patient activation takes this approach further, tailoring care pathways to patient activation levels. This involves taking the capabilities and beliefs of patients into account in order to deliver care more effectively. For example, in some clinics this has resulted in patients with low levels of activation being encouraged to attend routine appointments to detect and treat urinary tract infections, while those with high levels of activation, who are more capable and likely to monitor their condition, are provided with a home test kit. This approach does little to improve health behaviours or raise levels of activation at an individual level, however it does provide a means of improving outcomes for larger groups of people and maximising the allocation of resources.

From the US to the UK Although there is a growing evidence base to support patient activation, much of the research has been conducted in the United States. It is unlikely that people with MS differ significantly between the two countries, however, the application of PAM within the UK health system requires further consideration.

Work in the UK using patient activation began in 2008 with the Health Foundation’s Cocreating Health Programme which explored a whole-systems approach to supporting people with long term conditions on a journey to become more engaged in managing their own condition5. Sites found a real benefit to using patient activation to support their work, not least in recognising that the underlying assumptions that are made about patients’ capabilities are often incorrect and much of the current system of care is not designed for people with low levels of activation.

With positive results and an increased focus on models such as the House of Care6, the appetite for creating a system which better meets the needs of people with long term conditions is strengthening. A systematic pilot of patient activation spanning five Clinical Commissioning Groups and the UK Renal Registry, funded by NHS England, will examine how PAM could be systematised as part of a strategy to support people with long term conditions; while a number of other groups are exploring what this could mean in the support of individuals with specific conditions including cancer and multiple sclerosis. www.mstrust.org.uk

Conclusion

Much emphasis has been placed on the selfmanagement of long term conditions in meeting the future aims and demands of the NHS. However a one-size-fits-all approach which fails to take into consideration the capabilities of patients presents a significant challenge to achieving this. Patient activation provides a unique insight into the capabilities and beliefs of patients. Used in combination with existing MS measures and the expertise of professionals, it offers new opportunities for putting people with MS at the centre of care.

References: 1. Hibbard J, Gilburt H. Supporting people to manage their health: an introduction to patient activation. London: The King’s Fund; 2014.

2. Hibbard JH, Mahoney ER, Stockard J, Tusler M. Development and testing of a short form of the Patient Activation Measure. Health Serv Res 2005;40(6 Pt1):1918-30.

3. Stepleman L, Rutter MC, Hibbard J, et al. Validation of the patient activation measure in a multiple sclerosis clinic sample and implications for care. Disabil Rehabil 2010;32(19):1558-67.

4. Goodworth MC, Stepleman L, Hibbard J, et al. Variables associated with patient activation in persons with multiple sclerosis. J Health Psychol 2014; Mar 3. [Epub ahead of print] 5. Wallace LM, Turner A, Kosmala-Anderson J, et al. Cocreating health: evaluation of first phase. London: The Health Foundation; 2012.

6. Coulter A, Roberts S, Dixon A. Delivering better services for people with long-term conditions: building the house of care. London: The King’s Fund; 2013.

Information about self-managing MS can be found in the recently revised book ‘MS and me’ available from the back page.

Using telerehabilitation to support behaviour change Dr Lorna Paul, School of Medicine, University of Glasgow; Dr Alexander Tallner, Department for Sport Science and Sport, Friedrich-Alexander-Universität Erlangen-Nürnberg, Germany; Dr Daphne Kos, Department of Rehabilitation Research, KU Leuven & AP University College Antwerp, Belgium; Dr Marta Renom, Cemcat, Barcelona, Spain

Introduction Multiple sclerosis (MS) is a progressive long term condition which requires lifelong treatment and rehabilitation. However, with finite health care resources and competing demands on ever stretched health care budgets, long term rehabilitation for people with MS is becoming increasingly difficult to access. Furthermore, people with MS, like those with other long term conditions, often find it hard to access traditional face to face rehabilitation services due to their physical condition and limitations, work and family commitments, lack of transport or due to living in rural locations1.

In Europe over 500 million people, around 63% of the population, have access to the internet (www.internetworldstats.com/stats.htm) and this figure is set to increase. In 2010, the Multiple Sclerosis Society undertook a survey of its members to inform their Web Accessibility Policy (v1.0)2. This survey reported that 92% of people with MS who responded to the survey used the internet three times or more per week, only 20% had problems in using the internet and generally no modifications or ‘access technologies’ were required, although many increased the font size. So could the internet provide the platform for an alternative model of rehabilitation delivery?

What is telerehabilitation?

‘Telehealth’, ‘ehealth’, ‘mhealth’, ‘telecare’ and ‘telehealthcare’ are terms which are often used interchangeably, but which describe the use of mobile and/or wireless technologies to support/provide some aspect of health or social care. ‘Telerehabilitation’, is a more recent term and describes the provision of rehabilitation services at a distance using telecommunications technology3.

Telerehabilitation is a model of service delivery which can be used at most stages in a patient’s pathway, including assessment, consultation, treatment, education and review. Telerehabilitation is also reported as being as effective in improving clinical outcomes as conventional rehabilitation4.

Telerehabiliation is being used by an increasing number of nurses and allied health professionals (e.g. physiotherapy, speech therapy, occupational therapy, psychology) in the UK, throughout Europe and beyond.

One of the fundamental aspects of rehabilitation is to support people to make positive changes in their behaviour on a long term basis, for example to exercise more, stop smoking, or eat less. But how effective

are internet interventions in encouraging long term behaviour change? There are no review papers focusing specifically on MS, though in the general population internet delivered interventions have been shown to have small effects on health behaviours4, 5. This field of rehabilitation is relatively new and we are still learning how to use the technology to ensure we deliver the best possible care and support to our patients. Evidence now suggests that internet delivered interventions, including many forms of telerehabilitation, are more effective if the intervention: • is tailored to the needs of the particular patient6 • includes educational material5 • is based on a theoretical model of behaviour change, e.g. social cognitive theory or the theory of planned behaviour • incorporates techniques known to be effective in supporting behaviour change such as goal setting, action planning and feedback4 • is not completely automated, i.e. there is some contact with a health care professional and/or others, e.g. peers • it uses other forms of communication, e.g. email, telephone.

Call: 01462 476700

13

14

Case studies The case studies below are some examples of positive and exciting ways in which telerehabilitation is being developed and delivered by allied health care professionals in different parts of Europe. Whilst the number of randomised controlled trials of telerehabilitation is relatively small, feedback from patients has been very positive.

There are, however, a number of issues and challenges which need to be addressed before telerehabilitation can be considered as an acceptable and sustainable model of rehabilitation delivery. In terms of cost, whilst telerehabilitation may be more cost effective to deliver than traditional face to face rehabilitation, the development and set up costs can be significant. Also, not all those with MS have access to the internet or the skills to use it.

Similarly some health care staff may have issues with access and skills, and staff may also have a negative attitude towards telerehabilitation and its effect on traditional roles and models of care. In addition, confidentiality and data security needs to be addressed at local and national levels.

Whatever challenges need to be addressed, as internet use becomes more ubiquitous and mobile devices more sophisticated, we, as health care professionals, should look at the opportunities telerehabilitation can offer our patients and our service. Telerehabilitation will grow and develop, and we must work with our own organisations and private and social enterprise companies to help guide the strategic development of telerehabilitation, and support the development of products and systems to ensure telerehabilitation programmes are of high quality and fit for purpose.

Physiotherapy – Case study 1

Dr Lorna Paul and her team at the University of Glasgow worked with NHS Ayrshire and Arran and people with MS to develop www. webbasedphysio.com. The website contains a library of exercise pages, and each exercise page consists of a video and audio description of the exercise, as well as text describing the exercise. The website also has an advice section for people with MS who are using the programme. Following a face to face assessment by the physiotherapist, exercises are selected to help address the patient’s problems and then, when the patient logs in at home with their unique log in details, they see

www.mstrust.org.uk

their programme. After doing each exercise the patient completes a diary entry which is seen remotely by the physiotherapist, who can then alter the programme depending on progress. The results of the first pilot study, over 12 weeks, were promising and funding has just been secured for a multicentre feasibility study7.

Fatigue management – Case study 2

Fatigue is one of the commonest and most disabling symptoms of MS. In Belgium, Dr Daphne Kos and her group in Antwerp and Leuven (AP University College Antwerp & KU Leuven) are using the MS TeleCoach mobile device. The device, developed by Teva Pharma Belgium, supports people with MS to be more physically active whilst using effective strategies to manage fatigue. The MS TeleCoach has two components: • telemonitoring - where the individual’s physical activity is measured using the device’s integrated accelerometers and users record their levels of fatigue three times per day on a visual analogue scale • telecoaching - is delivered three times a week providing advice to the user to increase their physical activity. In addition, users receive daily feedback on goal setting, tips on energy management and motivational texts.

The pilot study showed encouraging results regarding the feasibility and effectiveness of the device8.

Speech and Case study 3

language

therapy

–

Approximately 32% of people with MS have dysphagia, for which the main treatment is education and rehabilitation. In Spain, Dr Marta Renom and others in the Cemcat group have developed TRHLAB, which is a website to remotely provide speech therapy to people with MS who have dysphagia and spasticity. In TRHLAB, the patient watches a video where a doctor or a therapist demonstrates a task and gives specific instructions for its correct execution - the website contains over 82 tasks.

The patient then performs the task, records it using a webcam and sends it to the therapist through the TRHLAB system. The therapist watches the video and sends feedback with his/her evaluation and comments. The programme also contains visual and written information on dysphagia for patients, their family or carers and health care professionals.

Sport and exercise science – Case study 4

Dr Alexander Tallner and his colleagues at the Institute of Sport Science and Sport in Erlangen-Nürnberg, Germany, have developed an internet based exercise intervention for people with MS, ms-intakt Study Erlangen9, which comprises e-training supervision and coaching. Using ms-intakt, people with MS exercise at home and their programme is monitored and updated remotely by a sports therapist. Behaviour change elements like structured provision of information, planning tools, prompts, feedback of results and rewards, aim to improve compliance to the programme.

The results of the first trial, the largest telerehabilitation trial in MS to date, showed the internet based programme to be as effective in improving leg strength and lung function as supervised exercise interventions.

The e-training intervention was very well accepted and could be delivered to people living in a 250 mile radius of the study centre.

References 1. Brennan DM, Barker LM. Human factors in the development and implementation of telerehabilitation systems. J Telemed Telecare 2008;14:55-8.

2. Multiple Sclerosis Society. Web Accessibility Policy (v 1.0).

London: Multiple Sclerosis Society; 2010.

3. Kairy D, Lehoux P, Vincent C, Visintin M. A systematic review of clinical outcomes, clinical process, healthcare utilization and costs associated with telerehabilitation.

Disabil Rehabil 2009;31(6):427-47.

4. Webb T, Joseph J, Yardley L, Michie S. Using the internet to promote health behavior change: a systematic review and meta-analysis of the impact of theoretical basis, use of behavior change techniques, and mode of delivery on efficacy. J Med Internet Res 2010;12(1):e4.

5. Davies CA, Spence J, Vandelanotte C, et al. Meta-analysis of internet-delivered interventions to increase physical activity levels. Int J Behav Nutr Phys Act 2012;9:52.

6. Aalbers T, Baars MA, Rikkert MG. Characteristics of effective internet-mediated interventions to change lifestyle in people aged 50 and older: a systematic review.

Ageing Res Rev 2011;10(4):487–97.

7. Paul L, Coulter EH, Miller L, et al. Web-based physiotherapy for people moderately affected with multiple sclerosis; quantitative and qualitative data from a randomized, controlled pilot study. Clin Rehabil 2014;28(9):924-35.

8. D’hooghe MB, Van Gassen G, Kos D, et al. Evaluating the effect of enhanced physical activity and energy management on fatigue in patients suffering from multiple sclerosis: the MS TeleCoach study. Proceedings of the 29th Congress of the European Committee for Treatment and Research in Multiple Sclerosis/18th Annual Conference of Rehabilitation in MS; 2013 Oct 2-5; Copenhagen, Denmark. Mult Scler 2013;19:11(Suppl):554.

9. Tallner A, Tzschoppe R, Peters S, et al. Web-based physical activity enhancement in persons with multiple sclerosis [Article in German]. Neurologie Rehabil 2013;19(1):35–46.

Information news Submitting articles for Way Ahead “The moment a man sets his thoughts down on paper, however secretly, he is in a sense writing for publication.” Raymond Chandler Have you ever thought you’d like to share an aspect of your work with colleagues in the wider MS professional community but didn’t quite know where to start? We’d like to invite you to submit an article to Way Ahead.

Way Ahead aims to highlight best practice, explore areas of clinical management and share findings from local pilots and projects.

The remit of Way Ahead is wide. Professionals have shared their experiences of working as part of a NICE Guideline Development Group, preparing a poster to present at a conference, running a specialist MS support group and developing self-management courses. Your work will also sit alongside our international contributors which have included Professor Christoph Heesen, Professor Wolfgang Gaissmaier, and Professor Jared Bruce, to name but a few. We are delighted to welcome

first time authors and are happy to give you all the help and support you need.

As well as sharing your work, a published article looks great on your CV, provides an opportunity to get your service noticed, and will demonstrate your worth to your manager.

The periodical has a readership of around 4,000 health and social care professionals working to support people with MS and they range from generalist to specialist practitioners. Articles are usually 1,000 to 1,200 words in length and we can include any relevant figures, diagrams or photographs which illustrate your work.

We look forward to hearing from you and will consider articles on any relevant topic.

Please contact Lynn Fox, commissioning editor at lynn.fox@mstrust.org.uk or call 01462 476700.

Call: 01462 476700

15

16

Current awareness - keeping up to date with new information It can be difficult to remain up to date with what’s happening in the field of MS without your inbox being swamped by journal contents pages and RSS feeds. The MS Trust aims to make this easier. The Quarterly MS Research Update is enclosed with your copy of Way Ahead.

This is a digest of articles selected by the Information Team that have been published in peer reviewed journals over the last quarter and are selected as being of particular interest to health and social care professionals working to support people with multiple sclerosis.

If you would like a weekly email update

of MS related articles selected from the Medline database you can sign up for the Weekly Research Update www.mstrust.org. uk/research/updates Each issue explores one major article in depth, whilst original abstracts or full text of all others can be accessed via the links provided.

Can you help us - would you be willing to review and comment on MS Trust publications?

The MS Trust Information Team are constantly reviewing and expanding our range of written and online information and input from health professionals is vital.

Currently the MS Trust produces over 40 books and factsheets for people living with MS and their families, in addition to information that exists only online. All our information is reviewed every three years to ensure that it remains accurate, relevant, up to date and based on the best available evidence. This allows us to comply with NHS England’s Information Standard.

The MS Trust has been certified as a producer of reliable health and social care

information by The Information Standard for the past four years. This quality mark, established by the Department of Health, aims to help people identify information that is clear, accurate, impartial, evidence-based and up to date.

To ensure our information remains relevant and based on best practice we need your help. If you would be willing to comment on any of our publications, please get in touch infoteam@mstrust.org.uk Thank you.

Celebrate the difference your service makes for people with MS The MS Trust is pleased to be working in partnership with pharmaphorum to introduce a new awards programme for MS services. QuDoS in MS (Quality in Delivery of Services in MS) awards will highlight innovation and excellence in MS services from across the UK. There are awards for individual practitioners and for teams. Whether you are working in a major centre or providing an MS service in a rural community setting, QuDoS is a chance to gain recognition for the difference you make to people with MS. You don’t have to be an MS specialist to be eligible.

Applications open on 20 April 2015. Awards will be presented at a special event at the MS Trust annual conference on 7 November 2015.

Visit www.qudos-ms.com for details of categories and how to enter. You can nominate yourself or a colleague/team.

www.mstrust.org.uk

There are 10 awards categories. Whether you are a nurse, physiotherapist, neurologist, OT, pharmacist, GP or practice nurse, there is a QuDoS in MS award to help recognise, celebrate and promote your work for people with MS.

MS specialist nurse meeting report 2015 In March 2015, the annual MS specialist nurse meeting took place in Crewe, Cheshire.

The conference gave the 110 nurses in attendance the opportunity to learn new skills, share their experience and hear the latest clinical updates, as well as network with colleagues from around the country. Here are just some of the highlights.

Plenary sessions Early treatment

In the opening teaching session Rev Dr Alasdair Coles, Honorary Consultant Neurologist, Addenbrooke’s Hospital, Cambridge provided an excellent overview of the published evidence for early treatment. He considered how early treatment can be defined, what it is hoped can be achieved, and the evidence for induction versus escalation treatment strategies and the risks associated with each. He highlighted the lack of available evidence for early treatment and the need for trials to examine this further.

Alongside Prof Neil Scolding, Consultant Neurologist, University of Bristol, the evidence for radiological and clinical assessment of disease activity was also considered.

Working with CCGs to reconfigure services

Juliet Ashton, Sapphire Nurse Consultant, Epilepsy Commissioning, presented her experience of reconfiguring neurology services in York. She guided the audience through the project objectives and process, as well as the barriers and risks encountered and lessons learned. She highlighted the key issues for commissioners and the importance of commissioning for outcomes. She stressed the importance of hearing the patient voice, including having patients involved throughout the process and the involvement of the voluntary sector to help facilitate this.

Experiences of MS health care services

Dr Abigail Methley, Trainee Clinical Psychologist, University of Manchester and Manchester Mental Health and Social Care Trust, presented the results from her qualitative research investigating the experiences of people with MS receiving care, and from those providing care, including MS specialist nurses, GPs and practice nurses. People with MS found navigating and accessing services a challenge, and were more likely to continue to apply effort to access services if they felt they would receive a benefit from it, for example people with primary progressive MS often felt

there was very little available for them. Health professionals believe in patient centred care, but GPs felt they did not have the time or expertise to help their patients in the best way.

MS specialist nurses highlighted the need for more psychological services to support and complement the service they provide.

Nurse led MS services

Dr David Rog, Consultant Neurologist, Salford Royal NHS Foundation Trust, provided a neurologist’s perspective of nurse led MS services. He highlighted the opportunities for nurse led services, although he acknowledged there would be a variation by area based on need, existing service structure and demand. It was highlighted that with the planned integration of health and social care there is the potential to reposition the nurse at the interface between the two.

This prospect may be an attractive option for commissioners if cost-effectiveness and improvement of care could be demonstrated.

For those considering developing more nurse led services it would be important to understand the local health economy, the key stakeholders and if key priorities are aligned. The increasing number of new disease modifying therapies will facilitate service development and the GEMMS project enables the gathering of data to support the case for the next generation of MS services.

The NHS Rehabilitation Board

Dr Joanne Fillingham is a speech and language therapist, but presented her secondment work as Regional Rehabilitation Lead, Midlands and East, NHS England.

Since 2012, the rehabilitation programme within NHS England has developed. The lack of evidence around rehabilitation means there is a real need to collect data to determine if rehabilitation interventions are effective or not as there is no NICE guideline concerning rehabilitation that constitutes what a good service is. Several principles have been developed and incorporated into a self-assessment document for rehabilitation services that will help to inform future work.

Call: 01462 476700

17

18

These principles include: services centred on people’s needs, vocational outcomes, interdisciplinary working, integration of specialist and generalist services and providing an active and enabling process. Joanne highlighted the Adult Ability Team in East Staffordshire and considered this community based interdisciplinary team an excellent example of a good rehabilitation service.

Other plenary sessions

Prof Neil Scolding provided an update on the development of the new ABN prescribing guidelines for disease modifying therapies.

Del Thomas and Sam Colhoun, Co-Chairs, UKMSSNA, provided an update on UKMSSA activities, including the launch of the new care manual.

Geraldine Mynors and Jane Suppiah, GEMSS Programme Facilitators, provided an update on the second phase of the GEMSS project.

Dr Sarah Robens, Research Fellow, Plymouth University presented her research investigating social isolation in people severely affected by MS. For more information on Sarah’s research see her article on pages 8-10 of this issue of Way Ahead.

MS nursing in practice – short presentations Rosie Grove, Clinical MS Specialist (Policy Development), UKMSSNA, outlined the opportunities that are available in 2015 for increasing the visibility of MS services, and collecting data and evidence to support services that may be under consideration by commissioners.

Rachel Morrison, The Health Centre, Stornoway, provided an introduction to the MS nurse service she has established in the Western Isles.

Carmel Wilkinson, Royal Victoria Infirmary, Newcastle upon Tyne, outlined the development of a care pathway for children with MS, to ensure that their move from paediatric to adult MS services is structured, coordinated and provides the necessary support to them and their families.

Workshops

Three facilitated periods were available to enable delegates to share experience, practice and solutions including: work and MS, MS Decisions, and switching DMTs.

MS Trust Annual Conference 2015 8–10 November, Beaumont Estate, Nr. Windsor “What can I say - it has been an amazing experience on so many levels! Being my first ever conference, I came along with an open mind and have learnt so much. It has re-energised me and given me a new enthusiasm to take forward a number of ideas / projects / approaches in my dayto-day work with pwMS. So much time and effort has obviously been put into the organising of such a great event - well done to all involved and a very big thank you!”

This residential conference is the leading event for MS specialist nurses, allied health professionals and neurologists. Non-specialists are particularly welcome and there are excellent bursaries available for nurses and AHPs. The programme offers clinical updates, seminars run by MS experts from a range of disciplines, research updates, excellent networking opportunities and the whole event has a big focus on improving practice for MS and skills that transfer to other neurological conditions.

To find out more visit www.mstrust.org.uk/conference or call 01462 476704

Programme highlights:

issues in caring for people with advanced MS accidental falls relapse management interventions for spasticity and tremor vertigo and dizziness managing respiratory problems in MS co-morbidies and MS exercise and MS trigeminal neuralgia abnormal mental states and behaviours.

Multiple Sclerosis Trust, Spirella Building, Letchworth Garden City SG6 4ET Registered charity no. 1088353

www.mstrust.org.uk

Supporting the MS Trust

19

Join us for a fun day out at Goodwood

Cycle from London to Brussels via Amsterdam

Sunday 17 May, 2015 Goodwood Motor Circuit, Chichester

27-31 May or 26-30 August, 2015

There’s something for everyone at the MS Circuit Challenge! The day kicks off with a sponsored 50 mile cycle challenge: 21 laps of the famous 2.38 mile circuit.

In the afternoon we invite you to get round the circuit “by any means”, being as inventive as you wish. Yes, you could dress up, walk or cycle, but why not try something different? You could do a three legged circuit or get round on a space hopper, pogo stick or roller skates!

The afternoon Family Fun event is suitable for all ages and abilities and it’s easily accessible for users of wheelchairs or mobility scooters. You can even bring your dog!

We hope you can come along and join in the fun. There will be plenty to keep you and your family entertained on the day including a bouncy castle and face painting, tombola and raffles, burger stall, cake stall and picnic area.

The 3 Cities Cycle Ride takes you through beautiful English villages, into the Dutch lowlands via Amsterdam and across to Brussels. You’ll pass canals, historic landmarks and rural villages, stopping off in the wonderful city of Amsterdam before making it all the way to beautiful Belgium and the city of Brussels.

Take part in this fantastic charity bike ride and raise much needed funds for the Multiple Sclerosis Trust. Book now to give yourself lots of time to fundraise, and we’ll support you all the way!

Registration fee: £99 Minimum sponsorship: £1,500 Sign up now at www.mstrust.org.uk/3cities “ The training helped me realise that once you start cycling, you can pretty much go for miles.”

Mel, 3 Cities cyclist

• Cycle challenge: £18.50 for preregistrations or £20 on the day • Afternoon event: £5 per person or £15 for a family of up to 6.

You can register for this event online now, please visit www.mstrust.org.uk/goodwood “ I know of no other event where one minute you have a group of guys pulling a lorry and the next you have a group of mobility scooters going by, followed by people dressed as bananas or a group of youngsters on skates or scooters. I love it!”

MS Trust supporter For more information about any of our fundraising activities, please call 01462 476707 or visit www.mstrust.org.uk/fundraising Call: 01462 476700

Publications For a complete listing of all our publications and factsheets visit our website at www.mstrust.org.uk Making Sense of MS resources for the newly diagnosed

Other publications for people with MS (a sample) MS explained MS-84 Living with fatigue - available May 2015 MS-204 Managing your bladder MS-429 Managing your bowels MS-430 Spasticity triggers MS-400 Disease modifying therapies MS-90 Primary progressive MS MS-449 Secondary progressive MS MS-452 Kids’ guide to MS MS-286 Young person’s guide to MS MS-137 Talking to your kids about MS MS-316 At work with MS MS-246 MS and me MS-318 REVISED

Making Sense of MS introductory booklet MS-444 Making Sense of MS core folder containing: • About MS MS-440 • What happens after diagnosis? MS-456 • Making the most of appointments MS-445 • Living well with MS MS-443 • Sources of information and support MS-453 • Publications for people with MS from the MS Trust MS-483 Please note: The six elements of the Making Sense of MS Core pack can also be ordered individually Making Sense of MS optional information: Telling people MS-454 Working and studying with MS MS-457 MS and life choices MS-446 MS and your feelings MS-447 Treating symptoms MS-455 Disease modifying treatments: an introduction MS-442 Relapsing remitting MS: an introduction MS-450 Primary progressive MS: an introduction MS-449 Secondary progressive MS: an introduction MS-452 Research and MS MS-451 A short guide to understanding my MS (to give to others) MS-441

Factsheets – (a sample) Clinically isolated syndrome MS-321 Cognition MS-144 Depression MS-315 REVISED Diet MS-92 Pain MS-96 Pregnancy and parenthood MS-134 Sativex MS-133 Spasticity and spasms MS-282 Publications for health and social care professionals

MS information for health and social care professionals MS-100 4th EDITION Spasticity care pathway MS-103 All items are free, but if you would like to make a donation towards our costs, we would be very grateful.

I enclose a cheque made payable to the MS Trust.

By ticking this box I confirm that I want the MS Trust to treat this donation and all donations I have made for the four years prior to this year and all donations I make from the date of this declaration until I notify you otherwise, as Gift Aid donations.

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

Name

Return to: MS Trust, Spirella Building, Letchworth Garden City, Herts, SG6 4ET

Job title Address

The MS Trust will use your details: to keep you informed about our work, including our fundraising to pass to our wholly owned subsidiary companies MS Trust (Education)Ltd and MS Trust (Trading) Ltd which exist only to carry out our educational objectives and to raise funds for the MS Trust.

Postcode Telephone number I am happy to be contacted by email: email address

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

Multiple Sclerosis Trust Spirella Building , Bridge Road, Letchworth Garden City, Hertfordshire SG6 4ET T 01462476700 F 01462476710 E info@mstrust.org.uk www.mstrust.org.uk Registered charity no. 1088353