January 2015- Way Ahead -Volume 19 Part 1

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

Volume 19 Part 1

I S S N 1466-559x

2-3 Research news

Updates on a case of PML in a dimethyl fumarate treated patient, extended eligibility for fingolimod in Scotland and fampridine is not found to be cost-effective in the UK.

3-4 Risk-sharing Scheme update Nicola Russell

Key messages from the six-year analysis of the DH Risk-sharing Scheme for Avonex, Betaferon, Copaxone and Rebif.

5 ACTRIMS-ECTRIMS congress report Gail Clayton

Review of the September 2014 joint meeting of the Americas and European Committees for Treatment and Research in MS.

11-15 Views on the 2014 NICE MS Guideline

The new NICE MS Guideline was finally published in October 2014. Read views from the MS Trust and health professionals working in the field of MS about the strengths, weaknesses and omissions of the new document.

16-17 Delivering information at diagnosis Jane Havercroft

Discusses how the delivery of information at the point of diagnosis could be improved for people with MS.

18-19 MS Trust conference round-up

Report of the happenings of the November 2014 MS Trust annual conference.

20-22 Learning in a way that suits you

6-10 Acupuncture for fatigue

Nicki Ward-Abel

Caroline McGuire

Outlines the importance of continuing education and the development of an online module to enhance your practice and service delivery.

There is increasing interest in the use of acupuncture for people with MS, this article explores its use in treating fatigue.

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Research news PML case reported for dimethyl fumarate (Tecfidera) A case of progressive multifocal leukoencephalopathy (PML) has been reported in a person who had been taking dimethyl fumarate. The person, who subsequently died of complications from pneumonia, had been taking dimethyl fumarate, a disease modifying treatment, for more than four years. For three and a half years they had experienced severe lymphopenia which is a risk factor for developing PML. PML is an uncommon brain infection. It is caused by a mutation of the JC virus, which is normally kept under control by the immune system. If the immune system is weakened and the body is less able to fight an infection, for example when lymphocyte counts are very low (lymphopenia), the virus can cause inflammation and damage to the brain, leading to permanent disability and, in some cases, death.

It is not yet clear whether dimethyl fumarate was directly responsible, or whether other factors caused this case of PML. The manufacturer, Biogen, has reported the details to the regulatory authorities and is working with them to ensure that prescribing information for dimethyl fumarate includes appropriate warnings.

Approximately 100,000 people have taken dimethyl fumarate worldwide.

This is the first case of PML associated with

Tecfidera. In the past, other cases of PML have been reported with the use of fumaric acid esters in patients with psoriasis who were lymphopenic. In the majority of these cases other risks for PML were present, so a causal relationship could not be confirmed.

Dimethyl fumarate was approved for use on the NHS as a treatment for relapsing remitting MS in 2014. Low lymphocyte count is a known side effect and complete blood counts are recommended before starting, and at regular intervals during, treatment.

PML is a known side effect of another disease modifying treatment, natalizumab (Tysabri). A safety programme has been developed to closely monitor and assess the risk of developing PML. People taking natalizumab are monitored for signs of the infection so that treatment to slow or prevent further progression can be initiated quickly.

Fingolimod (Gilenya) eligibility extended in Scotland The Scottish Medicines Consortium (SMC), which issues guidance on whether treatments should be funded by NHS Scotland, has announced that fingolimod can now also be prescribed for people with rapidly evolving severe relapsing remitting MS (RES RRMS). RES RRMS is defined as two or more disabling relapses in one year with signs of increasing or new lesions between two consecutive MRIs. This means that fingolimod is now a first line oral treatment option for people with MS who have two or more disabling relapses in one year with signs of increasing, or new lesions, between two consecutive MRI scans. Fingolimod may also be prescribed for people who continue to have relapses despite taking any one of the disease modifying therapies. Under the previous SMC approval, fingolimod could only be prescribed for people who continued to have relapses despite having been on one of the beta interferon drugs for at least a year.

This announcement provides an additional treatment option for people with RES RRMS in Scotland. Until now the main treatment option has been natalizumab (Tysabri). These changes affect prescribing for NHS Scotland only. www.mstrust.org.uk

Earlier this year NHS England extended eligibility for fingolimod to include people who had been taking glatiramer acetate (Copaxone) and also to allow people currently taking natalizumab (Tysabri), who are at high risk of developing PML, to switch to fingolimod treatment.

Fingolimod is taken as a tablet once a day. It reduces relapses by about one half and slows down the rate of MS progression by about one third. The first dose must be taken under medical supervision as fingolimod has a temporary effect on heart rate and blood pressure. Common side effects include headache, liver enzyme increases, influenza, diarrhoea, back pain, and cough.

Fingolimod may also cause macular oedema (a swelling in the eye affecting vision).

Fampridine not recommended in the UK

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The Welsh drug regulator has announced that fampridine (Fampyra) is not a cost effective treatment for MS-related walking problems. The All Wales Medicines Strategy Group (AWMSG) made its decision following a review of the clinical and financial evidence.

In CG186, the recently issued Clinical Guideline on the management of multiple sclerosis, NICE found that fampridine was not a cost effective treatment for provision by the NHS in England.

Fampridine has not been appraised by the Scottish Medicines Consortium (SMC) for use

by the NHS in Scotland.

Fampridine was granted a conditional licence by the European Medicines Agency (EMA) in 2011. This requires the manufacturer (Biogen Idec) to carry out further research into safety and effectiveness.

The Department of Health Risk-sharing Scheme - an innovative project that revolutionised services in the UK and delivered disease modifying drugs on the NHS Nicola Russell, Director of Special Projects, MS Trust

Introduction

If you were in clinical practice in 1997 you may remember that three new drugs had been launched for the treatment of multiple sclerosis (MS) and the UK was in the grip of postcode prescribing.

It was no surprise therefore that the MS drugs were in the first tranche of products referred to the newly created National Institute for Clinical Excellence (NICE) in 1999, but the outcome of their assessment was deeply disappointing - Avonex, Betaferon, Copaxone and Rebif, the first drugs to alter the underlying course of MS, did not represent a cost effective use of NHS resources under the then existing arrangements for their purchase.

However, NICE encouraged the Department of Health (DH) to work with the four manufacturers to ensure that the drugs could be made available on the NHS in a cost effective manner and the DH Risk-sharing Scheme (RSS) was born.

Whilst the RSS ensures the routine prescribing of the disease modifying drug therapies, there is also a research element which led to 5,610 people with MS being recruited between 2002 and 2005 and monitored annually for ten years - a significant commitment, but one that has brought real benefit to all people with MS across the UK.

Six-year analysis of the RSS Recently, presentations on the latest results from the research element of the RSS have been given at the Association of British

Neurologists conference, the joint Americas and European Committees on Treatment and Research in MS congress, as well as at a Parliamentary Reception. The key messages presented were: • all four drugs are clinically effective in reducing the progression of disability at four and six years • the drugs are being prescribed in a cost effective manner for the NHS. The RSS compares a natural history cohort of untreated people, with the expected outcome based on the clinical trials and Figure 1 shows that the drugs are performing about 10% better than expected • the data have been analysed using two parallel statistical methods and the results from both methods are in agreement. Work done validating both these models will be useful in future assessments of MS therapies Call: 01462 476700

• investment in the scheme has benefited care for all people with MS, whether or not they have received any of the drugs, through funding of MS specialist nurses and improving local services for people with MS within the NHS. 72 centres now have specialist teams providing MS expertise to all people with multiple sclerosis across the UK

• 245 specialist nurses now work across the UK compared to only 80 at the start of the Scheme. In addition there has also been RSS investment in specialist therapists and administrative support.

Figure 1: Primary outcome by utility

continuous Markov 0.12

0.10

change in utility

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0.08

deviation = -10%

0.06

nat Hx 0.04

actual RSS modelled to HR 0.62

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time (years)

Going forward Drug usage in the UK still remains low in comparison with most other countries in the world – does this represent clinical caution on the part of UK clinicians or caution on the part of people with MS? The evidence shows that MS damage can be occurring without clinical signs - are people with MS in your area seeing the specialist teams at an early stage?

The RSS was truly innovative and unique when it was launched in 2002 and the evidence produced by the Scheme will help NICE assess future MS drugs. It is also an exceptional example of a long-term partnership between the Department of Health, four pharmaceutical companies, the Association of British Neurologists, the UK MS Specialist Nurse Association and the MS Trust.

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Our focus moving forward will be to ensure that the progress achieved through the RSS is maintained despite the current NHS changes and in particular: • we call upon the Department of Health, the NHS and the National Institute of Health and Care Excellence (NICE) to work together to ensure none of this progress is lost, to secure for the future fair and equitable access to cost effective MS treatments and to maintain ongoing investment in MS services • we call upon specialist health professionals to audit their services and work with clinical commissioning groups to ensure the development of joined up comprehensive MS services for people across the UK • we call upon the pharmaceutical industry to continue to work in partnership with other parties to continue to develop MS services.

Joint congress of the Americas and European Committees for Treatment and Research in MS (ACTRIMS-ECTRIMS) conference report, Boston 2014 Gail Clayton, Lead MS Clinical Nurse Specialist, University Hospital of Wales, Cardiff

Introduction

In October 2013, at the ECTRIMS annual meeting in Copenhagen, the MS Trust and MS Association of America brought together a steering committee comprised of global opinion leaders to discuss how to help people with MS and their health professionals make appropriate treatment decisions, and understand risk-benefit in an increasingly complex environment. Having attended this meeting I was delighted to be asked by the MS Trust to attend the next steering committee meeting at the joint ACTRIMS-ECTRIMS conference in Boston in September 2014.

The 2014 steering committee meeting

The meeting included a lot of debate regarding the nature of information given to people with MS at diagnosis, treatment decision making and risk-benefit discussions. During the meeting, the role of the MS specialist nurse in the UK was discussed. The role was viewed as ‘ground breaking’ and at a higher level than similar roles in other countries. In addition to the steering committee meeting, a number of sessions were held where a range of MS specialists were invited to share their views.

We were pleased that a group of UK MS nurses were able to share their thoughts and feelings on treatment decision making in the UK. This again highlighted the important role of MS nurses both in the holistic management of MS and managing the increasingly complex disease modifying therapy arena.

ACTRIMS-ECTRIMS sessions

This year the John B Hynes Convention Centre played host to 9,000 delegates. With a variety of formats, including teaching courses, platform presentations, satellite symposia, burning debates and question time hangouts, there was plenty of choice of sessions to attend.

The conference saw an inspiring and moving opening by Dr Mikkel Anthonisen, founder and leader of the Oceans of Hope, the first yacht crewed by people with MS to circumnavigate the globe. In each port of call, Oceans of Hope aims to create a legacy by establishing a network between the MS world and the sailing community to promote active lifestyles for people with MS.

Whilst varied, the programme was at times challenging and very scientific. There were some very relevant presentations, including data on the efficacy and safety of oral versus intravenous high dose methylprednisolone, which mirrored that of current practice in the UK. There were also interesting presentations outlining risk management with MS therapies, dietary patterns and associated risk of MS, education level and the impact of MS on early childhood development.

There was also the opportunity to view some of the 980 poster presentations. Of particular interest were the posters on symptom management, which was generally not covered during the plenary sessions.

Posters included long term data on the use of fampridine, the impact of bladder symptoms on quality of life and the challenges of palliative care in MS. I also had the benefit of spending some time with a service user representative on the steering committee, who shared their experiences of MS care at Baltimore’s Johns Hopkins Hospital.

I would encourage MS nurses and therapists to seek funding for a place at next year’s ECTRIMS meeting as it provides a valuable experience for learning and networking with global colleagues.

Abstracts from the conference can be found in: Multiple Sclerosis Journal September 2014; 20(1 suppl).

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Acupuncture for the treatment of fatigue in people with multiple sclerosis: a case series Caroline McGuire, Specialist Physiotherapist, Astley Ainslie Hospital, Edinburgh

Introduction

Fatigue is a well-recognised symptom of multiple sclerosis (MS), affecting as many as 90% of the MS population1, 2, and is thought to contribute to the negative impact on quality of life3, 4, 5. Fatigue often impacts on work, family and social life, as well as personal care3, 6.

However, fatigue in people with MS is multifactorial and complex. It can be classified as being either central or peripheral in nature, and can arise directly as a symptom of MS (primary), or secondary to another factor such as sleep disturbance1, 3, 7.

Acupuncture is the insertion of needles into specific points around the body which are deemed to have a specific location and action.

In Chinese Medicine, the purpose is to balance the circulation of the body’s own energy, known as Qi8. Qi circulates around the body via channels or pathways known as meridians.

There are 12 paired organs with associated meridians, many of which have familiar names to Western medicine practitioners, however their function in Chinese Medicine is often different and greater in range than is thought in Western medicine. Chinese Medicine believes there is often a connection between organs and the psychological makeup of individuals and much greater weight is put on the inter-dependency of organs on each other compared to Western medicine.

Organs in Chinese Medicine are looked at as part of a whole, each dependent on the proper functioning of the others. Qi circulates through these organs along the meridians to ensure health. Any interruption to this smooth flow, which may come from internal or external sources, results in pathology.

In Western medicine, we understand that a virus will alter the functioning of the body, but in Chinese Medicine, “pathogens” such as damp and heat are responsible for disruption to normal processes. The aim of assessment in Chinese Medicine is to identify the “pathogen” and what influence it is having on the body. Treatment is then targeted accordingly. Western research has shown that stimulation of acupuncture points by the insertion of needles stimulates the nervous system9-12 and produces a local response within the soft tissue structures8. By influencing the central nervous system, acupuncture can affect a variety of its functions, for example pain suppression and control of heart rate11, 13, 14 . Peripheral effects, such as vasodilation www.mstrust.org.uk

and pain suppression via Diffuse Noxious Inhibitory Control (DNIC), are useful for the treatment of pain and injury8.

Acupuncture is regularly used in Western society. With a substantial amount of evidence supporting its use in certain conditions, it is now accepted by bodies such as the World Health Organisation (WHO)15 and the National Institute for Health and Care Excellence (NICE)16 for conditions including chronic low back pain, headache, knee pain, nausea and vomiting, sciatica, tennis elbow and depression. However, evidence for its use in neurological conditions remains limited due to the complexities of both the treatment and the condition itself. Finding a suitable control for acupuncture in neurological conditions is difficult.

The realisation that acupuncture can affect changes within the brain and nervous system has led to increased interest in its use for people with MS. Some clinical benefits for the use of acupuncture in MS have been described17-25 and increasingly, research is being used to assess neurological symptoms following a course of acupuncture including spasticity22, neuropathic pain25 and fatigue24.

A proposal was submitted to Coventry University for a Masters dissertation involving acupuncture treatment for people with MS who experienced fatigue.

Method

A case series involving six individuals was undertaken. One of the six patients was unable to complete the follow up outcome measures due to illness unrelated to their MS, however the rest of their data was included in the analysis.

A convenience sampling method identified subjects from referrals of patients with MS into the Neurological Outpatient

Physiotherapy service, who had fatigue listed as a problem. Referrals were from Neurology and Rehabilitation Medicine consultants, MS nurse specialists and physiotherapy colleagues.

The inclusion/exclusion criteria identified appropriate patients and ensured consistency between the patients in the study. The Staging System for MS26 was used to identify patients at a similar stage of the disease process according to Chinese Medicine. The system was first published in 1993 and is found to be clinically useful, however no further literature or validation process of the system has been published since, ultimately it groups people together in a similar way to scales we are more familiar with such as the Expanded Disability Status Scale (EDSS) score. There are four stages described (Stage 1 to 4) which signify the progression of the disease from being inert at Stage 1, to MS having a major physical, emotional and psychosocial impact at Stage 4.

Staging System for MS

• Stage 1: symptoms have completely resolved and are no longer active • Stage 2: the meridians are affected by external influences such as damp-heat or damp-phlegm leading to symptoms such as weakness, altered sensation or visual symptoms • Stage 3: the unremitting presence of pathogens in the channels places a strain on the organs. Production and circulation of Qi and Blood is reduced leading to symptoms associated with Deficiency.

There may ultimately be a detrimental effect on the body’s ability to resist further invasion by pathogens • Stage 4: if left alone, there are consequential effects on the Kidneys which are the body’s life force and which supply Yin and Yang to the rest of the organs. The resultant drop in Kidney Qi leads to emaciation, severe weakness and exhaustion - Kidney Xu signifies the move into this final stage.

Stage 2 patients were chosen for the study as it was anticipated that they would respond to treatment more quickly, allowing fewer number of treatments26. It is thought that those who present in Stage 3 or 4 may still benefit from acupuncture, but to a lesser extent26 and may require a more prolonged period of treatment intervention, which was outside the timescale available for this study.

Patients who had changes to medication, or who had a clinically diagnosed relapse, within the last three months were excluded as it was considered they may have natural improvement in fatigue during the assessment period. The Modified Fatigue Impact scale (MFIS) and the Multiple Sclerosis Impact Scale version 2 (MSIS-29v2) were used, both have been used and validated in studies involving people with MS2, 21, 23, 27-30.

Study design

A single system, A-B-A design, was used which incorporated a two week baseline period, where the assessments were carried out at weeks 0, 1 and 2. A ten session treatment phase (two treatments per week) followed, commencing at week 2, with outcome measures repeated at weekly intervals. A final follow up phase, not involving any treatment, was the final phase and lasted for two weeks, with outcome measures completed each week at home by the patient.

Acupuncture points were selected from a standardised list for the treatment of patients in Stage 2 of the MS Staging System26, with approximately ten points used per patient, per treatment, to reduce the chance of overstimulation31. The points chosen varied at each treatment depending on how the patient presented, and how they reacted to the previous treatment, as is normal practice. The therapist who carried out the acupuncture had experience in treating people with MS with acupuncture for around 12 years. Treatment and progress was recorded as per normal practice, in the patient’s physiotherapy records. Six patients completed a full course of ten acupuncture treatments.

Data analysis

Visual analysis of the data was performed on each individual subjects’ data, but was also cross compared with the data of other subjects.

The Wilcoxon Rank test was performed using SPSS version 19, with statistical significance taken as P ≤ 0.05.

Results

From the calculations, the results for the MFIS combined physical/psychological score demonstrated a statistically significant improvement post treatment (p = 0.031).

However, the result of the cognitive subscore did not show significant improvement (p=0.094).

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The results also showed that the post-treatment scores for the MSIS29v2 physical and psychological subscores were statistically significant (p = 0.031; and p = 0.031 respectively).

Visual analysis of MFIS and MSIS-29v2

Visual analysis indicated a pattern of stable baseline, improvement in the treatment phase, then stable follow-up phase for the majority of the sub-scores. Lower scores on the MFIS indicate less fatigue. Lower scores on the MSIS-29v2 indicate lower fatigue. Results for each individual participant are shown below.

Table 1. Wilcoxon signed ranks test (non parametric) on MFIS and MSIS-29v2 MFIS

MSIS-29v2

Physical/ psychological (Post-pre)

Cognitive (Post-pre)

Z

-2.207

-1.892

Exact Sig. (2-tailed)

.031

.094

Physical (Post-pre)

Psychological (Post-pre)

Figure 1: Patient A MFIS

-2.201

-2.207

.031

.031 Physical and psychological Cognitive

Figure 1: Patient A

Figure 1: Patient A

Study phase

MFIS

MSIS-29v2

Physical and psychological Cognitive

Physical Psychological

Figure 2: Patient B MFIS

Study phase

Study phase

Physical and psychological Cognitive

MSIS-29v2

Figure 2: Patient B

Study phase

Figure 2: Patient B

Physical Psychological

MFIS

Study phase

MSIS-29v2

Physical and psychological Cognitive

Physical Psychological

Study phase MSIS-29v2 Study phase

www.mstrust.org.uk Physical

Study phase

Figure 3: Patient C

Figure 3: Patient C

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MSIS-29v2

MFIS

Figure 4: Patient D

MFIS

Physical Psychological

Physical and psychological Cognitive

Study phase

Study phase

Physical and psychological Cognitive

MSIS-29v2 Study phase

Figure 4: Patient D

Figure 4: Patient D MSIS-29v2

MFIS Physical Psychological

Figure 5: Patient E MFIS Physical Psychological

Study phase

Physical and psychological Cognitive

Physical and psychological Cognitive

Study phase Study phase

MSIS-29v2

Figure 5: Patient E Figure 5: Patient E

Study phase MSIS-29v2

MFIS Physical Psychological

Figure 6: Patient G MFIS

Physical and psychological Cognitive

Physical PhysicalPsychological and psychological Cognitive

Study phase

Study phase

Study phase MSIS-29v2

Study phase Figure 6: Patient Figure 6: GPatient F MSIS-29v2

MFIS

Physical Psychological

Physical and psychological Cognitive Physical Psychological

Study phase

Study phase

Study phase

MSIS-29v2

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Visual analysis is appropriate as it can allow identification of clinically significant changes which may not be statistically significant32. This is particularly relevant for this study where the numbers are small. It demonstrates that Patient D’s cognitive sub-score showed an increasing trend at the end of the treatment phase, not in keeping with the overall trend of this patient’s scores. This however is explained by her recent diagnosis of irritable bowel disease which led to frequent bouts of incontinence which she found exhausting to deal with. Patient F also demonstrated an increasing trend in follow up scores which may be accounted for by secondary fatigue due to lack of sleep or low mood7 following a family bereavement at the end of her treatment period. Otherwise, visual inspection demonstrated an improvement across the subscore as seen by the trend of the graphs.

The MFIS and MSIS-29v2 look at fatigue and quality of life respectively but have very similar shapes on the graphs when compared, indicating a close relationship. Previous studies have demonstrated that fatigue and psychological state have an impact on quality of life and that there may be positive correlation between these23. The results suggest therefore that it may be possible to improve quality of life in people with MS by improving fatigue.

Discussion

A list of references for this article can be found with the online version.

Raised pro-inflammatory markers (eg cytokines) and raised adrenocorticotropic hormone (ACTH) or hyper-regulation of the hypothalamic-pituitary-adrenal (HPA) axis are thought to be linked to primary fatigue in people with MS, but study designs limit the generalisation of these results due to variability in the assessments used and the small sample sizes33-36.

Secondary fatigue is linked to factors such as muscle deconditioning or disturbed sleep, and wouldn’t show changes in blood chemistry. Hence reinforcing the need to carefully exclude secondary fatigue from studies. However, several patients in this study commented that they had difficulty in getting to sleep due to having too much going on in their heads and difficulty relaxing. They commented that this improved following treatment. As they generally slept well, it was felt that their fatigue was not secondary to sleep disturbance, however overall sleep may also be improved with acupuncture.

Acupuncture is thought to have a homeostatic response which is maintained beyond the actual treamtent itself37. The www.mstrust.org.uk

vagus nerve plays a part in maintaining a regulatory effect on the inflammatory process and acupuncture has been shown to affect the vagus nerve38. Therefore, it is possible that acupuncture may be influencing the inflammatory mediators through its effect on the vagus nerve and its role in the sympathetic nervous system, and hence impacting on primary fatigue by the subsequent lowering of cytokine levels. The ability of acupuncture to have a continuous effect beyond the actual treatment phase has been established by others39, 40, 41. This is likely due to the homeostatic influence acupuncture has and hence the ability of it to affect and maintain levels of fatigue, beyond the treatment phase.

The length of this control or impact would need to be studied in a much more prolonged investigation, beyond the timescale of this study.

Fatigue in people with MS has been seen to increase with increased temperatures4, 7, 42, 43 . Thermoregulation in the body is controlled by the central nervous system, including the hypothalamus which has been shown to be influenced by acupuncture.

Several patients commented about feeling “too hot” or “thirsty” and this improved following treatment. It could be considered therefore that fatigue in people with MS may be linked to thermoregulatory control and that improvements in fatigue levels following acupuncture treatment may be due to the regulatory effects of acupuncture on the central nervous system. However, studies have yet to make this link.

The reports by individuals in this present study suggest that acupuncture may also be helpful in reducing secondary fatigue due to night time sleep disturbance. This however is a separate problem and should be studied separately to any study of primary fatigue.

Conclusions

It is recognised that acupuncture is a difficult technique to research especially in a fluctuating condition such as MS. However, case series may be a way around the problem of finding a suitable control. This small study suggests there is a need to further investigate the usefulness of acupuncture for people with MS and the mechanisms by which this is effective. The use of case series may reduce the cost implications for research by reducing the number of subjects required, which in turn may allow more sophisticated techniques, such as MRI, to be employed.

Management of MS in primary and secondary care – NICE Clinical Guideline 186: an analysis of how it measures up Introduction

In October 2014, NICE (the National Institute for Health and Care Excellence) published the first revision of their Clinical Guideline for MS in England. The original Guideline (CG8) was published back in 2003 and, whilst flawed in places, it set out standards of care across the whole condition and across most therapeutic interventions, and so became a real standard of best practice.

In the following article we look at what the 2014 Guideline recommends, how it differs from the 2003 Guideline and what the MS Trust perceives as the strengths and weaknesses of the new document. We also asked a variety of MS health professionals for their views on how the new Guideline measures up, which can be found in the second part of this article.

What is a Clinical Guideline?

According to NICE, they produce clinical guidelines that cover a range of topics, including: • managing specific conditions • improving health and managing medicines in different settings.

Guideline recommendations set out: • the care and services that are suitable for most people with a specific condition or need • ways to promote and protect good health • ways to prevent ill health.

They promote integrated care where appropriate. NICE guidelines only cover health and care in England. Decisions on how they apply in other UK countries are made by Ministers in the Welsh Government, Scottish Government and Northern Ireland Executive.

NICE Clinical Guidelines are available for everyone to use, however, it’s generally anticipated that they will be of most value to GPs, and other non-specialist health professionals in clinical decision making.

They can also be useful to NHS commissioners and managers to help plan services. NICE also produces an ‘information for the public’ version of every guideline, which people with MS could use in consultations with their health professionals if they choose.

What’s in the 2014 Guideline?

The 2014 NICE MS Guideline makes a series of recommendations about managing someone with MS in primary or secondary care, which can roughly be grouped into the following areas:

• Diagnosing MS – including the importance of referring to a consultant neurologist if MS is suspected, common initial presentations, and excluding alternative diagnoses. It also recommends a review for someone with MS-type symptoms, but who does not achieve a diagnosis.

• Information and support – particularly the importance of oral and written information at diagnosis. This recommendation includes, with the agreement of the person with MS, information for their family, carers and children. The Guideline also recommends a follow-up appointment with a healthcare professional with expertise in MS within 6 weeks of diagnosis, that everyone with MS should have an MS management plan (care plan); and covers advanced care planning and power of attorney where appropriate.

• Coordinating care – covers management by the multidisciplinary team, described in the Guideline as: • consultant neurologists • MS nurses • physiotherapists and occupational therapists • speech and language therapists, psychologists, dietitians, social care and continence specialists • GPs. • That everyone with MS should have an appropriate named single point of contact to coordinate care and help them access services. There is also a recommendation around the clinician deciding how often the Call: 01462 476700

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person with MS should be seen based on their individual needs.

• Health promotion – including smoking, exercise and flu vaccinations. Also assessment for risk of osteoporosis and pressure ulcers, and referral to palliative care services where applicable. The Guideline also looks at information for people with MS who are thinking about pregnancy. The Guideline does not recommend vitamin D “solely for the purpose of treating MS”.

• Symptom management – although some non-pharmacological interventions are covered, the main focus is on the pharmacological management of symptoms.

Recommendations are made around the following symptoms: • fatigue • mobility and balance – fampridine (Fampyra) is not recommended on the basis that it is not cost effective • spasticity – nabiximols (Sativex) is not recommended on the basis that it is not cost effective • oscillopsia • emotional lability • pain, including neuropathic and musculoskeletal • cognitive problems.

• A tailored annual review for everyone with MS conducted by ‘healthcare professionals with expertise in MS’, to include MS symptoms, respiratory function, relapses, general health, comorbidities, social activity and participation, care and carers and an annual medication review.

• Relapse management – should be offered within 14 days of a diagnosed relapse; first line treatment is oral methylprednisolone of 0.5g daily for 5 days; the potential side effects and complications of steroids should be discussed, as should inpatient admission followed by rehabilitation where appropriate, and the importance of informing the MS multidisciplinary team of the relapse.

The Guideline also makes the following five recommendations for research, based on its review of the evidence, to improve NICE guidance and patient care in the future: • Cognitive rehabilitation: What is the clinical and cost effectiveness of cognitive rehabilitation for people with MS? • Continued relapses: Is IV methylprednisolone more clinically and cost effective than oral methylprednisolone in people with relapsing remitting MS and people with secondary progressive MS with continued relapses? www.mstrust.org.uk

• Mobility: What is the optimal frequency, intensity and form of rehabilitation for mobility problems in people with MS? • Spasticity: What non-pharmacological interventions are effective in reducing spasticity in people with MS? • Vitamin D: Can vitamin D slow down the progression of disability in MS?

How does the new Guideline differ from the 2003 Guideline?

On a positive note, the 2014 Guideline recognises the impact of cognition as a symptom of MS and makes recommendations about this, which the 2003 Guideline did not.

Overall, the greatest difference is that the 2003 Guideline offered recommendations about holistic management of MS – with the exception of cognition – from symptom onset to death. The 2014 Guideline does not. There are a number of reasons for this, but the primary one is that in the eleven years between MS Guidelines, NICE has issued symptomspecific guidance in some areas, such as neuropathic pain, the neurogenic bladder and bowel, and depression, consequently it does not include recommendations about these symptoms within the main MS Guideline.

NICE has also restricted the evidence considered in the 2014 Guideline to trials conducted only in MS; the 2003 Guideline looked at evidence in other conditions for some symptoms such as spasticity, ataxia and mobility that might be common to more than one condition. Another drawback is the predominance given to randomised controlled trials (RCTs) when it came to the grading of evidence, which has resulted in specialist nurses, rehabilitation, physiotherapy, occupational therapy and speech and language therapy barely being covered by the Guideline. Consequently the 2014 Guideline is much more limited in scope than the original version.

Comments from the MS Trust

Although there are some positive points to be welcomed, such as the recommendations on the importance of providing clear and practical information for people with MS at the point of diagnosis and the emphasis on the vital role of the multidisciplinary team in the management of MS, overall the MS Trust is disappointed that the 2014 Guideline fails to deliver a comprehensive overview of what people with MS need and what the NHS should deliver.

Whilst pleased to see the recommendation that people with MS should have a single point of contact and a comprehensive annual review with

a health professional with expertise in MS, we feel strongly that this was a missed opportunity to emphasise that MS specialist nurses are ideally placed to deliver this, due to their central role in the delivery of holistic care, which is a key indicator of overall service quality. The emphasis on the pharmacological management of symptoms in the Guideline means that the valuable role allied health professionals have in the management of symptoms including

spasticity, fatigue and difficulties with speech or swallowing, is not truly recognised.

Despite some positive recommendations, the Guideline fails to draw together these recommendations into a meaningful and comprehensive description of best practice in MS care. This was strongly present in the 2003 Guideline and its loss weakens the value and impact of the 2014 revision.

NICE Clinical Guideline – The neurologist’s thoughts David Rog, Consultant Neurologist, Greater Manchester Neurosciences Centre

The NICE Guideline development process follows standardised procedures, including a scoping exercise to generate questions for which evidence is sought and assessed. If evidence is lacking for an intervention or service, recommendations cannot be made.

A concern with any set of guidelines, though not legally mandated, is that they may be interpreted by commissioners as a lowest common denominator. If neurological rehabilitation services are configured to optimally manage patients with MS, a dynamic condition with physical, cognitive, psychological and sometimes psychiatric sequelae, affecting both the spinal cord with acute inflammatory relapses and longer-term neurodegenerative components, intuitively, such a framework could benefit in the optimal management of patients with many types of monophasic and/or limited neurological injuries.

NICE Guideline 186 identifies fewer healthcare professionals involved in the “coordination of care” than the multidisciplinary team members recommended in the 2003 Clinical Guideline 8, which they purport to replace. For example, the role of rehabilitation consultants and ophthalmologists appears to have been omitted, except to recommend that the latter refer cases of optic neuritis to neurologists for further management!

Provision of information and support for those newly diagnosed is welcome and this offers the opportunity to produce a standardised package, developed based upon the input and feedback of patients, supplemented with information on local services.

The disparity between identification of symptoms in the comprehensive review and absence of recommendations for treatment, for example sexual dysfunction, is regrettable. The non-recommendation of nabiximols (Sativex) and fampridine (unless the patient is already receiving them) due to being not cost-effective, unfortunately leaves the minority of patients

with intractable spasticity and gait impairment who note meaningful benefit from these products in limbo.

The challenge to the MS community, prior to revision of these guidelines in 2016, is to generate further evidence, of sufficient quality for consideration under the NICE assessment criteria, to support optimal service provision for people with MS. NICE recommendations for research, especially cognitive rehabilitation are welcome but would be more meaningful if they mandated NHS funding bodies to prioritise grant proposals in these areas, effectively a “funding call”.

The recommendation, to offer “an appropriate single point of contact to coordinate care and help them access services” undoubtedly challenges which healthcare professional is best placed to deliver this. At present this may vary across the country, but our service audit concluded that a third of patients hadn’t visited their GP since diagnosis of MS and that the highest scores on the Friends and Family Test were achieved by the MS nurse. The comprehensive review guidelines, whilst welcome, intersperses both general health and MS-specific outcomes and will require novel ways to address these efficiently, perhaps through the use of questionnaires completed before the patient’s appointment.

Overall, whilst there are some useful new standards (diagnosis, information, comprehensive review), the terms of the NICE Guideline process coupled with incomplete evidence, means that a definitive service framework for optimal management of MS still eludes us.

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NICE Clinical Guideline – The MS nurse’s perspective Rosie Grove, Clinical MS Specialist (Policy Development), UKMSSNA

The UKMSSNA is disappointed that the NICE Guideline fails to reflect the unique contribution of the MS specialist nurse.

We are pleased that provision of information has been highlighted and agree that equipping the patient with knowledge is vital, but this shouldn’t be reduced to information giving.

For example, there is no mention of the work usually undertaken by the specialist nurse in the early days. The growth in the number of disease modifying therapies now available means there is more to discuss and for patients to consider, so consultation appointments can be lengthy, but they are vital to help people be fully engaged in the process. Time spent listening and growing to understand the individual at this early point enables a bond of trust to develop that allows good communication to occur in the future.

This is work best undertaken by an MS specialist nurse or clinician with the required specialist knowledge, but is not described in the guidance.

MS nurses working in primary care are not delivering care prescribed by a neurologist, as is implied by the terminology of the Guideline.

They are practitioners in their own right with a

recognised specialist knowledge base and skill set. They provide accessible support for their patients and their primary care colleagues. For example, people living with MS attending their GP surgery are often told to “Ask your MS nurse,” in relation to a query.

It would not be acceptable to use the term “Consultant physician with expertise in MS care” to replace the words “Consultant neurologist” in this document, as the term would not guarantee the level of education and competency required. For the same reason, we would have preferred the term “specialist nurse” or “specialist therapist” be used throughout the Guideline rather than “clinician with expertise in MS”. “Expertise” is too vague and open to misinterpretation. To paraphrase Donald Rumsfeld ‘some people don’t know what they don’t know’, so it’s better to appoint people with the appropriate expertise in the first place and call them MS specialists. This lack of acknowledgement, combined with cost pressures on CCGs, leave MS specialist nurses in a vulnerable position.

NICE Clinical Guideline - The neuropsychologist’s view Dawn Langdon, Professor of Neuropsychology, Royal Holloway, University of London

Cognitive symptoms are an important part of many people’s experience of MS. What progress does the 2014 NICE Guideline for MS demonstrate for them?

Both NICE Guidelines recommend access to a psychologist. The 2003 NICE Guideline says a clinical psychologist should be an integral member of the neurological rehabilitation team (1.2.2.3). In the 2014 Guideline, this has been softened to “involve” a psychologist, although they still recommend that they should be a specialist with MS expertise (1.3.1).

As part of “Ongoing information and support”, the 2014 NICE Guideline recommends that the possibility of cognitive problems should be broached with people with MS and their families (1.2.8).

The 2014 NICE Guideline has a section on “Cognition including memory” (1.5.3133), which advises “Consider referring people with persisting memory or cognitive problems to both an occupational therapist and a neuropsychologist to assess and manage the symptoms”. I think this could have been better worded as “Discuss a specialist referral www.mstrust.org.uk

for assessment and management of persistent cognitive problems with the person with MS and their family member/carer”.

The 2014 NICE Guideline recommends annual cognitive assessment, as part of the comprehensive review (1.6.3). Usefully, they also recommend advising that relapses can have a temporary effect on cognition (1.7.17).

The 2003 NICE Guideline had quite detailed sections explaining that subtle MS cognitive impairment can interfere with communication and disease management, and that reduced independence and physical function not explicable by motor impairments is likely due to cognitive disability. These were useful pointers, but are not included in the 2014 NICE Guideline. Neither Guideline explains that self-report of cognitive function is influenced by depression, a key issue at consultation, especially for generalist primary care workers.

And now for the good news: the clinical and cost effectiveness of cognitive rehabilitation for people with MS is the first of the 2014 NICE Guideline “Research recommendations” (2.1).

The MS Trust GEMSS Programme – addressing the gaps in the NICE Guidance?

Geraldine Mynors, GEMSS Programme Manager, MS Trust

Through the GEMSS programme (Generating Evidence in MS Services), the MS Trust is currently working with 11 teams of MS specialist nurses (including two multidisciplinary teams involving allied health professionals). This brings the number of teams supported to collect and analyse evaluation data about their services over the course of a year to 16. The 40 nurses involved in GEMSS have a combined caseload of over 17,500 people with MS – a sizable proportion of the UK total – and are spread across England and Scotland.

The programme has identified the outcomes which MS specialist nurses (MSSNs) seek to achieve with their patients1, developed measurement tools to track achievement of many of them, and to describe the services provided. A 30-question survey has been answered by over 1,200 people with MS under the care of GEMSS teams and has rated the extent to which they think MS specialist nurses have contributed to outcomes such as: • remaining in employment • feeling informed about MS • prompt treatment for relapses • obtaining benefits and other funding.

A health professional stakeholder survey and case studies will provide further evidence of these benefits, and a new tool, the Dorset Specialist Neurological Intervention Audit Tool (SNIAT) is being used to track the different areas assessed during nurse consultations.

Together with descriptive data about service

caseloads and activity, and performance on Key Process Indicators such as the timeliness of annual reviews and holistic assessments for people newly diagnosed with MS, these sources will be used to create a rich picture of how MS specialist nurses operate and what they achieve.

The final report is due for publication in the autumn of 2015.

So, will the GEMSS MSSN project report address the evidence gaps exposed by the NICE Guideline development process? The project is a service evaluation, albeit on a large and comprehensive scale, rather than a clinical trial.

The programme has not attempted to capture longitudinal data about individual patients over time – a notoriously difficult thing to do even within a research study given the wide range of different outcomes targeted by MSSN services and against the backdrop of a degenerative condition like MS. Nevertheless, the GEMSS programme data will provide evidence that MS specialist nurses make a tangible difference to patients, will show the factors that make their services more or less efficient and effective, and demonstrate the complex and specialist range of skills that MSSNs bring to bear in their practice. The programme will therefore demonstrate conclusively that MSSNs are in a unique position to deliver the vital interventions – particularly at new diagnosis, times of relapse and deterioration, and annual review – which the NICE Guideline recommends.

Reference: 1. Mynors G, Bowen A. MS specialist nursing in the UK 2014: the case for equitable provision. Letchworth: MS Trust; 2014.

Professional development MS Study Day in Partnership with ACPIN Devon This study day will provide health and care professionals with an understanding of important issues relating to the care of people affected by MS. Date: Tuesday 24th February, 2015 Venue: The Watermark, Ivybridge, Devon Price: £50 +VAT for ACPIN members £65 +VAT for non-members

Speakers include: • Jenny Freeman, Reader in Physiotherapy and Rehabilitation, University of Plymouth • Hilary Gunn, Lecturer in Physiotherapy, University of Plymouth • Timothy Harrower, Consultant Neurologist, Royal Devon and Exeter Hospital • Lou Jarrett, MS Clinical Nurse Specialist, Royal Devon and Exeter Hospital • Dawn Langdon, Professor of Neuropsychology, Royal Holloway, University of London • Jon Marsden, Professor of Neurorehabilitation, University of Plymouth.

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How can health professionals ensure information is delivered at diagnosis?

Jane Havercroft, Information Officer, MS Trust

Making Sense of MS

In the last issue of Way Ahead (2014; 18(4):4-6), we described Making Sense of MS, a new suite of resources for people recently diagnosed with MS. It consists of a postcard sized introductory booklet, which could be given out in the same consultation as the diagnosis is delivered, and further information which can be provided when wanted, or needed, by the individual. The further information comprises 16 individual information sheets on different topics; five of which are also available as a core pack of information in a folder.

The aim is to offer: • introductory information straight away at diagnosis, so that someone is not left in limbo wondering what MS is and what it might mean for them • further information, when they are ready, that is tailored to the individual’s MS and personal preferences.

Who? When? How?

At the MS Trust conference in November 2014, seminar participants considered how information could be provided as soon as possible after diagnosis, who was well placed to do this, how it might be achieved and what difficulties could be encountered. The discussion was informed by the results of pilot runs which had tested out the practicalities of delivering this information in six MS services nationwide.

Neurologists Seminar participants agreed that neurologists are best placed to provide introductory information as they are most often delivering the diagnosis. This view was reinforced by the updated NICE Clinical Guideline Management of MS in primary and secondary care which was published in October 2014.

It states that “The consultant neurologist should ensure that people with MS are offered oral and written information at the time of diagnosis.”

For a number of reasons, neurologists may not give out information, for example they may be a generalist rather than specialist neurologist, or clinics may not always be in the same location so information may not always be at hand, therefore other options may need to be considered.

www.mstrust.org.uk

Neurologists’ secretaries It was thought that neurologists’ secretaries could be influential in persuading neurologists to provide written information as a matter of routine. In the absence of this commitment, secretaries could provide introductory information in referral letters, or as someone left the clinic. However, it was noted that they were often extremely busy and letter writing was frequently out-sourced.

Outpatient clinic nurses The nurses who staff outpatient clinics might be able to screen someone’s notes prior to the clinic. If diagnosis with MS was indicated, they could insert a booklet for the neurologist to give out.

Information stands Clinic nurses might be able to ensure that information stands carried information about diagnosis with MS, although this might need input from volunteers to keep stocks up to date and topped up. However, it was suggested that much information from stands is picked up casually by people who like to browse information, rather than by people with a connection to MS. MS nurses MS nurses are seen as key to closing the gap if information is not provided by the neurologist at diagnosis. In some MS services, the newly diagnosed person would see an MS nurse straight away but, in the majority of cases, there could be a gap from days to, more often, a few weeks or several months.

One limiting factor is the length of time before the MS nurse receives the referral from the neurologist.

This is perhaps particularly acute for MS nurses based in the community as they have little direct contact with the referring neurologists.

Neurologists could be encouraged to give the contact details of the MS nurse to the newly diagnosed person so they could make contact with the nurse directly. In some areas, there is a secure messaging service which neurologists could use to give MS nurses the details of a newly diagnosed case. These approaches should allow MS nurses to make contact more rapidly.

One possibility, in most services, would be to include the introductory booklet in the letter inviting the person to their first MS nurse appointment. Further information could be provided at that appointment if appropriate.

Other health professionals It was thought that allied health professionals are sometimes well placed to provide information as, in some cases, a newly diagnosed person is referred straight to them.

GPs also have a role, so information could be provided in GP surgeries, although it was acknowledged that each GP would typically only see a few cases of MS.

Overarching considerations

Some people are diagnosed by a general neurologist and then referred to an MS specialist neurologist at another centre together with the associated MS team. This can introduce further delay in providing introductory information.

Many clinics are not held in the same place each time, so there is no opportunity to have information stored at hand. Staff need to anticipate what will be needed and carry it with them to the clinic – this can be challenging!

Seminar participants liked the flexibility of Making Sense of MS in providing introductory information at diagnosis, then allowing a follow up with further information tailored to the needs of the individual. The postcard size of the introductory booklet made it easy to send with an appointment letter at little cost.

Participants felt that all health professionals and associated staff had a role in ensuring that there was no information gap. Although neurologists are tasked by the NICE Guideline with providing initial information, in reality this does not always happen, so everyone in the MS team should check whether information has been provided. If not, any gap could be filled and further information provided as needed.

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As each MS service is structured differently, and may receive referrals from a wide range of neurologists based at a number of hospitals, there will not be a “one size fits all” solution to delivering information at diagnosis.

You might like to consider: • Where people are diagnosed within your area. Is it at your own centre or at district general hospitals that refer to you, or both?

• What you could do to change your MS service to improve information provision around the time of diagnosis?

• What is ideal? How might you achieve this?

• What situations do you commonly encounter? How can you best provide information in these circumstances?

• Would any of the Making Sense of MS resources be helpful?

Acknowledgements

With thanks to all the participants at the Conference seminar “Information resources for people newly diagnosed with MS” and to the MS services who took part in the pilot runs in Cardiff, Edinburgh, Hertfordshire, Northamptonshire, Norwich and Salford.

To place an order: all of the components of Making Sense of MS are listed on the order form on the back page or can be ordered online.

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MS Trust conference report, Kenilworth 2014 In November 2014, the MS Trust’s 18th Annual Conference took place in Kenilworth, Warwickshire. With over 70 percent of the UK’s MS specialist nurses in attendance, as well as a wide range of allied health professionals, the conference is the largest event in the UK for health professionals working with people with MS. The programme featured an array of high-quality presentations and seminars. Here are just some of the highlights.

Plenary sessions Developing services for children with MS In the opening session of the conference, Dr Evangeline Wassmer, Birmingham Children’s Hospital, gave an excellent overview of paediatric onset multiple sclerosis. She highlighted the challenges faced in trying to build up an MS service to treat people aged 16 or younger, particularly around diagnosing and treating this rare condition. The lack of evidence for treatments in childhood MS leads to a reluctance of neurologists to prescribe, and commissioners to fund, treatments. Progress is being made to tackle these issues with the establishment of a National Paediatric Onset MS programme.

Update on disease modifying drug therapies Dr Paul Molyneux, Consultant Neurologist, West Suffolk and Addenbrooke’s Hospitals, acknowledged that the last 12 months have seen a major change in available treatments for relapsing remitting MS. An overview of the licensed treatments illustrated the complex interplay of efficacy, safety and tolerability, which make choice of treatment more complex than ever. New treatment paradigms, such as NEDA (no evidence of disease activity) are increasingly influencing treatment decisions.

With further new drugs in the pipeline, advising on optimal individualised therapy will continue to be challenging for both neurologists and MS nurses.

Update on the DH Risk-sharing Scheme Dr Martin Duddy, Consultant Neurologist, Royal Victoria Infirmary, Newcastle, introduced the latest data from the DH Risksharing Scheme to assess the cost-effectiveness of interferon beta and glatiramer acetate. He guided the audience through the background to the study, explained some of the difficulties encountered and how they had been resolved, and concluded with the recently released six year analysis which provides evidence that these drugs do alter the outcome of relapsing remitting MS in real-life clinical practice. www.mstrust.org.uk

Can brain atrophy measurement help us in monitoring MS progression in routine clinical practice?

Dr Dana Horakova, MS Specialist Neurologist, General University Hospital, Prague, presented evidence from her department’s detailed research into brain volume measurement and explained how this has become an essential component of decision making about treatments.

Assessing and managing cognitive problems Professor Dawn Langdon, Royal Holloway, University of London, presented on the latest developments in the understanding of cognitive symptoms, including their onset even before diagnosis with MS and the recognition of relapses that cause only cognitive symptoms. Professor Langdon also discussed the recently developed BICAMS measure of cognition, which only takes 15 minutes to administer and can be administered by someone without specialist neuropsychology training.

Breakfast seminar: Patient activation – new insights into the role of patients in self-management In this well attended early morning session, Dr Helen Gilburt from The King’s Fund explained the concept of patient activation, a measure which captures an individual’s perception of their role in managing their health. Dr Gilburt illustrated how measurement of patient activation can improve the management of long term conditions by tailoring the delivery of health services to match different levels of activation. For more information on patient activation see Helen’s article in the next edition of Way Ahead.

Keynote lecture: Adventures with my wheelchair: life on the road, living with MS Stephanie Scawen, TV journalist for Al Jazeera Media Network, provided the voice of someone with MS, giving a very personal account of living with her MS. Throughout her presentation it was evident how both her sense of humour and of the ridiculous, her resourcefulness and her resilience have enabled her to travel the world, reporting from war zones and scenes of disaster.

NICE MS Clinical Guideline and the development process The abiding memory on leaving the MS Trust’s annual conference was the presentation about the recently revised MS Guideline which was published in October 2014, and it is perhaps for this session that the Conference will be best remembered.

Addressing an audience that was already familiar with the revised Guideline and frustrated by some of its omissions, Dr Paul Cooper, Chair of the MS Clinical Guideline Development Group, Prof Mark Baker, Director of the NICE Centre for Clinical Practice and Dr Peter Brex, an MS neurologist and member of the MS Clinical Guideline Development Group gave a presentation describing the process for developing Guidelines and reviewing the content of the 2014 revisions.

A robust discussion during the Q&A session followed, focusing on a lack of recommendations for MS nurses, physiotherapy for spasticity and the lack of high quality research needed to provide evidence for interventions.

Although disappointed by NICE, the strength of feeling amongst the delegates in the final session will hopefully be harnessed in pushing to generate the peer-reviewed evidence and proof of the value of services that is already recognised by practitioners and people with MS.

Seminar sessions A full programme of seminar sessions covered aspects of MS, as well as a range of professional issues including: • trigeminal neuralgia

• understanding MS fatigue and an introduction to the FACETS programme • non-medical prescribing for both nurses and allied health professionals • advance care planning • capacity planning • models of integrated services.

One session introduced the MS Trust’s new Making Sense of MS resources for people recently diagnosed and encouraged discussion of how best to get this information to people as early as possible after diagnosis (see pages 16-17 for more information).

Prizes Prizes awarded at the conference were: • Best poster – Heledd Tomos and the SW Wales MS Team, Morriston Hospital, Swansea: Disease modifying drugs (DMD) monitoring for patients with multiple sclerosis (MS) – use of iPads to improve access • Best Development Module students – Rachel Fisher, MS Team Lead/Advanced Physiotherapist, West Midlands Rehabilitation Centre (October 2013); Peter Ajayi, Physiotherapist, Lucerne House Care Centre, Exeter (March 2014) • Best Way Ahead article – Angeliki Bogosian, Research Fellow, Health Psychology, King’s College London: Adapting mindfulness courses to the needs of people with MS • TiMS trophy – Jenny Freeman, Reader in Physiotherapy and Rehabilitation, University of Plymouth, in recognition of her exceptional contribution to advancing rehabilitation for people with MS • My Super Team Awards 2014 – Rosie Eliot and Mary Fenn, Wessex MS Therapy Centre; Denise Middleton and Lesley Catterell, Milton Keynes Community Health Services.

Creative Zone Throughout the exhibition and conference areas, and illustrating the conference programme, were a selection of striking artworks created by Elizabeth Jameson, an artist who also has progressive multiple sclerosis, based on her own MRI scans www.jamesonfineart.com

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Learning in a way that suits you: flexible education opportunities at Birmingham City University Nicki Ward-Abel, Lecturer Practitioner in MS, Birmingham City University

The importance of continuing education The vast majority of University educational opportunities occur within the working day, which can be impossible for many to attend, especially with current workload pressures within health and social services. Often academic courses are held in locations that can be difficult to travel to and let’s not even mention the difficulties regarding car parking! Health and social care professionals are increasingly struggling to obtain either time out of the clinical practice environment, or the finances, to actively extend their formal education.

Anecdotally, there are many who have started academic study only to find it cut abruptly short because resources are no longer available to them. Yet, ongoing learning, education and development of knowledge and skills is essential if we are to provide the very best care for patients within a service that best meets their needs.

Education also plays a key role if, as specialists, we are to be business savvy and possess business acumen, these skills are certainly not acquired by chance. Education is also required to prepare health and social care professionals for the ever changing face of healthcare and the challenges this places upon us. Those who stay up to date are more able to help the organisation meet its quality goals by providing care that is scientifically sound and meets the accepted standards. Let’s not forget, high quality care also increases patient satisfaction.

This is how the development of the innovative online module ‘Developing Specialist Practice for Health and Social Care Professionals’ (LBR 6094) and ‘Enhancing Service Delivery’ (LBR 7265) came about, with the module offered at either BSc or Masters level. The module is aimed at all health and social care professionals currently working (or wanting to work) at specialist level, or those working within a specialist area. For those working in the MS field, the course is an ideal follow-on to the MS Trust residential course Development of MS care and management for specialists.

The module is only available electronically, it can be accessed on your iPhone or Android phone, iPad or other tablet, your laptop or any other electronic gadget that allows internet access. Students are not required to attend any classroom sessions and do not need to enter the university campus unless they choose to. www.mstrust.org.uk

Library services are all offered electronically.

Even application, enrolment and tutorials are carried out online. It has been run successfully at degree level for several years and is now also offered at masters level.

Why could this course benefit you?

Specialist health and social care professionals are often criticised for not ‘selling’ the role that they undertake; their posts can become at risk of redundancy, or of dilution as a result of having to work as a generalist in practice rather than a specialist, because of NHS cutbacks. Many in authority have little idea of what specialists provide for their patient group.

So, how is it best to showcase what it is that you do? How can you keep up to date, broaden your outlook and ensure that patients and service design benefit? How can you become increasingly clinically sound and ensure that the service you work within is the best that can be provided. Changes are ongoing within any service design, how do you gather the necessary evidence that supports these changes and focuses you on what needs to alter? This course can support you to achieve all of this and more.

Module content

The content of the module is dynamic and changes to reflect current health and social care requirements. The module runs once per year over a period of 14 weeks; students are expected to commit to a minimum of three hours study time per week. The module is divided into four sections which are: • specialist practice • audit • policy • personal and professional development.

It is currently worth 15 credits at either BSc or MSc level (MSc level will soon be revalidated at 20 credits).

The module is aimed at creating flexible studying opportunities for students; it has been designed to meet the needs of those working in specialist practice or within a specialised area of care, such as a Neurology ward or a Rehabilitation Unit. Students are supported by an enthusiastic module leader who will ensure that your progress is monitored, that you interact regularly within the module and will facilitate you to achieve the required learning outcomes.

The material and activities within the programme will enable you to effectively understand, discuss, evaluate and to actively prove your worth, as well as undertake projects which would improve quality of patient care.

The study facilitates and encourages you to identify current health and social care drivers and focus on the need to act autonomously in planning and implementing service design.

Students are expected to develop skills and a strategic understanding of clinical audit by examining local service delivery, which enables you to design and develop an audit tool that will be utilised in your service. The skills learnt on the module are generic but participants may be practicing in the area of long term conditions such as multiple sclerosis, epilepsy, Parkinson’s disease, oncology or motor neurone disease.

Learning objectives

At the end of this module, the student will be able to : • demonstrate an advanced knowledge of specialist practice • discuss ways to demonstrate clinical effectiveness and that of the service they work within • critically analyse current socio-political factors that influence specialist practice and the patient agenda • design, conduct and evaluate an audit project • contribute to the development and evaluation of services within their local area of practice • assume responsibility for initiating practice development within their respective discipline • advance their practice via reflective and critical thinking • develop an action plan to inform future personal and professional growth.

There is a range of teaching and learning strategies utilised in order that the student is

motivated to learn and complete their studies.

Students are required to be active and selfdirected learners and need to participate regularly in the online activities and be prepared to challenge other students and the course tutor by expressing their own thoughts and ideas whilst contesting alternative viewpoints.

There is a focus within the module on how the individual students’ role contributes to interprofessional working and achieving clinical competence in specialist practice.

The online software used is called ‘MOODLE’ which is a virtual learning environment; it can be accessed country and worldwide, as long as the student can access the internet. Students who apply come from all over the UK and are members of all the health and social care professional groups.

Below is an example of one week of the module, some work is ‘essential’ for the student to complete to enable them to meet the module outcomes. Other work is ‘optional’ if the student chooses to complete it to further consolidate their learning: 2. What is specialist practice?

2.1 What is specialist practice? (Essential) 2.2 Specialist practice forum (Essential) 2.3 Your specialist role – job description (Essential) 2.4 Video – clip: What is specialist practice?

(Essential) 2.5 Specialist therapists (Essential) 2.6 Specialist physiotherapists (Optional) 2.7 Specialist nursing (Optional) 2.8 Final thoughts.

Week nine of the module begins to explore clinical audit and covers: 9.1 Group definition: What is clinical audit?

(Essential) 9.2 Overview of the clinical audit cycle (Essential) 9.3 Starting the audit process and selecting your audit topic (Essential) 9.4 Help selecting an audit topic (Optional) 9.5 Example of a clinical audit (Optional) 9.6 Background reading (Essential) 9.7 Involving your audit department (Essential) and what they have to offer (Optional) 9.8 Summary Over the years, students have produced their audit tool on a range of subjects, each project is unique and demonstrates the student’s innovation. They embrace the audit design as a Call: 01462 476700

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challenge and regard it as a very real achievement that they are then ready to undertake an audit once the module is completed. The student produces the audit tool, but is not expected to carry out the audit during the module.

Audits that have been studied to date include: • bladder service • falls • fatigue • newly diagnosed service • FES service • equipment provision • PEG feeding • end of life care • telephone clinics • unplanned admissions to hospital • education for OT’s.

Student feedback

The following are just two comments on the student experience of designing the audit: “ As a result of my audit assignment, I am presenting what I have learnt to my manager and will request the setting up of a falls group to look at, and improve, our falls prevention and management - have our first meeting this week to look at falls prevention and management. Can’t believe I volunteered myself for this, would never have done so before the course.”

Occupational Therapist “ I have presented my audit plans at the Regional Link Therapy Day and so I am now committed! I would not have thought of presenting it if it had not been for the course, I am looking forward to starting my audit!”

Dietitian There are both short and long term impacts of the course, read opposite for some of the comments that previous students have sent about the course.

Short term impact: “ I feel I have had my eyes opened to the depth required for specialist practice that I really did not appreciate before.”

Physiotherapist “ I haven’t done any formal education (on nursing) for several years. It was interesting to reawaken the grey matter rather than just ‘go with the flow’.”

Specialist Nurse “ The political awareness module has sparked a new interest as I have ‘avoided’ this in the past but now I am seeking information to keep abreast of the latest political news.”

Specialist Nurse “ I am about to write a business case for the post of an additional practitioner to support people with MND in the community. It is a tall order but I have learnt so much that can help me articulate why the post is needed, and the tools provided on the module are excellent.”

Speech and Language Therapist Long term impact: “ Being back in the academic arena where searching for evidence, essay writing, project work are a now part of every week.”

Specialist Nurse “ I now have a clearer understanding of a specialist practitioner’s role and this will enable me to articulate my role with confidence to managers/commissioners in the future.”

Physiotherapist

The next time the module begins is 13 April, 2015. If you want to discuss this course further, please email me for more information: Nicki.Ward@bcu.ac.uk If you require an application form please quote the module number (see earlier) and email the Admissions Department: health.admissions@bcu.ac.uk or phone: 0121 331 5500 To find out more about the courses we run at Birmingham City University: www.bcu.ac.uk/health

www.mstrust.org.uk

Supporting the MS Trust

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Add some excitement to Vietnam to Cambodia: your year with a sponsored cycle through two beautiful skydive! countries What could be more exhilarating than standing at the edge of an open doorway in an aircraft flying at 10,000 feet? Then leaning forward out of that doorway and letting go - falling into the clouds, freefalling at over 120mph!

All this and more is available when you take part in a tandem skydive for the MS Trust. No experience is required as all training is given and if you raise the minimum sponsorship of £395 you can skydive free at one of 20 airfields across the UK. Karen Walker, who has MS, tells us about the skydive experience she had with a group of friends she met on an MS course in Sheffield in 2009.

The Sheffield Jump Squad, from back row left: Mark Mather, Tracey Blanshard, Claire Eley. From front row left: Sarah Medway, Karen Walker.

“ I guess doing the parachute jump is something positive that’s come out of having MS. I was a keen runner before my diagnosis and having that taken away from me was devastating, so having a new goal helped give me some focus. “ Together we raised over £2,700 for the MS Trust. I wanted to fundraise for the MS Trust for selfish reasons I suppose. The free information they sent was of real value to me, so I wanted to give a little back. I feel it’s important they can continue to produce information for everyone affected by MS.”

Explore cities, royal palaces, dazzling green paddy fields, temples and much more in this enchanting cycle ride from 29 October to 8 November 2015. From the bustling Vietnamese city of Hanoi to the serene religious temple of Angkor Wat in Cambodia, the route has more than its fair share of charm.

The MS Trust will provide lots of support and fundraising materials to help you raise your sponsorship, as well as training tips to help you prepare for the ride.

Registration fee: £349 Minimum sponsorship: £3,400 www.mstrust.org.uk/vietnam

www.mstrust.org.uk/jump 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 Making Sense of MS introductory booklet Making Sense of MS core folder containing: • About MS • What happens after diagnosis?

• Making the most of appointments • Living well with MS • Sources of information and support • Publications for people with MS from the MS Trust Please note: The six elements of the Making Sense of MS Core pack can also be ordered individually

Other publications for people with MS (a sample) MS explained Living with fatigue Managing your bladder Managing your bowels Spasticity triggers Disease modifying therapies Primary progressive MS Secondary progressive MS Kids’ guide to MS Young person’s guide to MS Talking to your kids about MS At work with MS Factsheets – (a sample)

Making Sense of MS optional information: Telling people Working and studying with MS MS and life choices MS and your feelings Treating symptoms Disease modifying treatments: an introduction Relapsing remitting MS: an introduction Primary progressive MS: an introduction Secondary progressive MS: an introduction Research and MS A short guide to understanding my MS (to give to others)

Clinically isolated syndrome Cognition Depression Diet Pain Pregnancy and parenthood Sativex Spasticity and spasms Publications for health and social care professionals

MS information for health and social care professionals 4th edition Spasticity care pathway

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 can 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.

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

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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.

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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