Annual Report2014

40c SwanfieldBonnington Road EdinburghEH6 5RX

0131 554 5384

Scottish Charity SC014991Company Limited by Guarantee SC122837

www.mstc-lothian.org.uk

The MS Therapy Centre Lothian is a small independent charity which has been working with and for, people living with MS, across the Lothians, Borders and South Fife since 1984.

Our Mission: Empowering and enabling people living with MS to actively manage their lives.

Our Vision: To deliver co-ordinated, holistic and person–centred support services and therapies to people living with MS assisting them in making informed decisions about their lives.

What do we do?

We provide practical support, MS information and advice, and opportunities for peer support in a friendly, supportive and positive environment.

We provide access to a range of complementary therapies such as Reflexology, Acupuncture, Aromatherapy, and Massage.

We provide one to one physiotherapy, group physiotherapy classes, and adapted exercise classes in Pilates and Yoga to improve and maintain joint mobility, balance and co-ordination, and assist with management of pain and spasticity.

We provide Hyperbaric Oxygen Therapy to people living with other heath conditions where there is evidence to support this intervention.

We work with other voluntary and statutory organisations that provide specialist advice and support in areas of benefits, welfare issues, carers support and self-directed support.

The therapies we provide complement and supplement treatments provided by physicians and neurologists, and can give significant health and wellbeing benefits, and in many cases help in reducing symptoms.

About the MS Therapy Centre Lothian

Welcome to our 2014 annual report. As you will see, 2014 was an exciting year. It was our 30th anniversary year- quite an achievement with the celebrations taking place throughout the year! We have focused our energies in expanding two of our core services- oxygen therapy and physiotherapy- and enhancing our monitoring/evaluation processes.

We have developed new projects, such as the Creative Writing project and we have strengthened our working links with other organisations. Our collaborative partnership with KICC achieved some key milestones and this way of working has been beneficial to all parties involved.

We could not continue to provide our services without the dedication and support of the staff, volunteers and fellow trustees. There were some staff changes during the year, with new appointments joining the team. A huge thanks to all those who helped maintain and improve our services during the year.

In summary, 2014 was a year of creativity and innovation, whilst ensuring our services continued to be delivered. 2015 promises to be challenging as well as stimulating as we move forward.

Carole MacartneyChair

A word from our Chairperson

“..the Centre has been

good socially because

I have a lot of friends

here. I like it here;

everyone is nice, easy

to get on with..!”

A. D. Ms Client

Opportunities for peer support at the Centre

The Hyperbaric Oxygen Chamber

Hyperbaric Operator at the controls

Busy reception area

Client reported benefits of Therapies

During 2014 we welcomed 114 New Clients through the referral routes above:

These perceived benefits are in line with our previous evaluations. Other benefits clients reported were im-proved wound healing, improved cognitive function -memory/concentration (oxygen therapy), improved bowel function (physiotherapy).

“ anyone with MS should come here.

All GP’s should advertise the Centre.”S. M. Ms Client

Our Achievements

Our TherapiesAt the MS Therapy Centre Lothian we offer a wide range of therapies to people living with MS to help them explore what ‘works for them’, and create a personalised self-management programme. We offer specialist information and advice on MS and associated symptoms; Hyperbaric Oxygen Therapy (HBOT); Specialist MS Physiotherapy 1:1; Group Physiotherapy classes; standing, seated and circuit; Acupuncture; adapted Pilates and Yoga; Massage; Reflexology;

The most significant noticeable benefits are in fatigue reduction, improved balance, sensory perception and control of incontinence. HBOT is not a cure for MS, but it does seem effective in obtaining some improvement in general condition.

HBOT is a simple, non-invasive and painless treatment that has been used to treat the symptoms of MS and promote healing for many years. Thus the aim of HBOT in MS, as part of a self-management programme, is to minimise the amount of damage being caused, promote rapid healing and limit the scar formation which can prevent nerve function being restored.

Centre User Breakdown

Supplying 4591 appointments to clients;

Adapted Pilates Class at the CentreAdapted Yoga Class at the Centre

We have providedA Total of 1340 Oxygen Therapy Sessions;

Very appreciative of my experience I have had at the MS centre. Extremely efficient, friendly and welcoming

staff. N.K. Non-MS Client

“Very friendly atmosphere with wonderful mutual support.”F.M. MS Client

“HBO has hugely

helped my health.

I think it should

be recommended

to all people

with M.E. Many

thanks.”

S.S. Non-MS Client

In the autumn of 2013 we expanded access to our Oxygen Therapy to a wide range of conditions, both short term and long term, where there was evidence of benefit. Over this period we have provided oxygen therapy to people with ME (CFS); Arthritis; Stroke; Diabetic Leg Ulcers; Sports Injury; Wound Healing; Radionecrosis (cancer therapy wounds), plus more as detailed in the Chart – Non MS Client Conditions. Staffing resource to assist in this development was supported by The Robertson Trust and The Weir Charitable Trust.

As stated earlier, we have had 114 new clients this year: 56 MS clients, and 58 Non MS clients. Although we continue to see a steady flow of new MS clients each year, our active MS client base nevertheless remains relatively stable, albeit fluid at around 370. This is due in part, that each year a number of our MS clients become inactive in that they are no longer able to attend the centre,

this is due to a progress/deterioration in their MS symptoms/condition or transport and/or access issues.

The majority of our MS clients access more than one therapy and/or support service, and in general attend the centre at least once a week.

Expansion of Oxygen Therapy-

Some statistics.MS Clients by gender Oxygen Therapy Clients

MS Clients by age MS Clients by Area

Expansion of Oxygen Therapy-

Arthritis /Fibromyalgia 17%

ME/CFS 18%

Stroke 10%

Parkinson’s 2%

Wound Healing/Leg ulcers 12%

Sports Injury 12%

Crohns/Colitis 7%

Cancer 5%

Radionecrosis 5%

Lyme Disease 3.5%

Autism (children) 8.5%

Non MS Clients by condition

Our small staff team of one part-time Lead specialist MS physiotherapist, and one part time Senior physiotherapist aim to: improve & maintain joint mobility; improve & maintain; balance and co-ordination; delay muscle spasms; maintain general fitness. And most importantly, to maintain normal patterns of movement and promote self- management.

Individuals treated include individual attendances at group physiotherapy classes; Seated, Standing and Circuit.We have provided 125 Acupuncture sessions this year. Feedback from our clients indicate that acupuncture provides relief for some MS-related symptoms, including pain, spasticity, numbness and tingling, bladder and bowel problems, and depression.

Adapted Exercise Classes We offer specially adapted exercise classes in both Yoga and Pilates on a weekly basis. These classes are delivered at affordable rates, by qualified and experienced tutors. Due to limited space at the centre these classes are restricted to 4-5 persons per class. All our are designed to be gentle and considerate of the needs of people with varying levels of mobility and experience.

Physiotherapy

“Having a physiotherapist come to my home

and assess my progress and needs has been

invaluable. She was able to go over my

exercises with me, and correct some things

which I had been doing wrong, which were

causing further problems .. as a result I feel

much improved.” L.T. MS Client

Outreach Service (Pilot)In September 2014, we launched our pilot outreach service with funding from RS MacDonald Trust. This project is based on these key principles:

• Move from “come to us” to “we come to you”, offering client choice

• Empower and enable MS clients to manage their lives better in their own environment.

• Engage with people who are socially isolated due to mobility issues, providing accessibility for all.

• provide support and advice to family carers.Over this short period we have provided:• 9 home visits (4 Edinburgh, 2 Midlothian, 2 East Lothian, 1 Borders).

A number of the visits resulted in onward referrals to other agencies who could be involved in supporting our clients at home, plus some joint working with other professionals such as Community Occupational Therapy. For example, a joint visit to the Disabled Living Centre (DLC) was made with one client and a Community Occupational therapist, which resulted in the identification of a potential stair lift and a walking aid.

Further evaluation of this is planned through client feedback regarding their perceptions of this service. This service has allowed us to respond also to clients who are presenting with a new decrease in mobility, and assess changing

needs as these arise. With onward referrals, we have also had the opportunity to continue to build links with other NHS and social care services, building on the scope and effectiveness of the MS Therapy Centre as a whole.

Capital ExpenditureWith support from Resource Efficiency Scotland’s Energy Efficiency Business Case, the MS Therapy Centre Lothian was able to identify the upgrades and Capital Expenditure required to make the centre more energy efficient. The Board agreed to release funds to install a new energy efficient compressor for our Hyperbaric Oxygen Chamber, boiler and heating system as well as an energy efficient lighting system. We hope to see a reduction in our energy costs over the coming years. Clients and staff already have already seen and felt the difference in the centre’s working environment. The total investment has been £25,000

Complementary Therapies Our self-employed therapists offer a wide range of complementary therapies at a reduced rate including Massage, Reflexology, Aromatherapy, Access Bars, and Reiki.

MassageHaving regular massage can help to detoxify the body, ease muscle pain, joint stiffness and create and intense state of relaxation and well-being. A range of massage therapies are available: Aromatherapy is the controlled use of essential oils to promote health, well-being and relaxation. The use of aromatherapy massage for the management of widespread diffuse pain has become a more common form of treatment in recent years. It can reduce muscle stiffness and promote relaxation and wellbeing.

ReflexologyThe feet, face and hands contain maps of the body with ‘reflex points’ representing the body’s major organs. Gentle and specific thumb and finger manipulations of these points aid in the release of energy blockages and therefore stimulate the body’s natural healing process.

Complementary Therapy Clients:• 276 Clients • Age Range 30-68 years of age• 82% Female, 18% Male

Massage Reiki

Reflexology Access Bars

Aromatherapy Kinetic Chain Release

“It’s like a big family, makes me feel great

walking in here, so much support and

understanding”

30th Anniversary (1984-2014)2014 was the 30th year of the MS Therapy Centre Lothian, and to celebrate this achievement we held a number of events and activities.

Launch of our Mad Hatters Tea Party In 2014 we launched our new annual fundraising and awareness raising activity, which will be held at the end of March each year. 64 Mad Hatter tea parties were held in 2014, from large organised events to small intimate tea parties! The feedback has been very positive. It is something we are hoping will grow year on year!

Film Premier of “When I Walk” at the Edinburgh Filmhouse. An emotional documentary filled with unexpected moments of humour and joy, WHEN I WALK is a life-affirming film driven by a young man’s Jason DeSilva determination to make sense of MS through the art of cinema.

Book Launch – Margaret Halliday’s Prana Soup An unflinching account of the author’s travels around India with multiple sclerosis.

Anniversary Dinner On September 19th at Minto Hotel Edinburgh we held our 30th Anniversary Dinner and Fundraiser which raised a great amount for the centre.

Creative Writing WorkshopThis project, funded initially through Crowdfunder. enabled MSTC to develop:

A series of 8 - 2 hour workshops with an experienced writing facilitator. These workshops:

-Emphasised that spelling, handwriting and grammar were not important in this context.-Were open to people with all levels of physical ability.-Were not exclusively focussed on writing about MS.-There was no obligation to share any writing with the rest of the group.

This project supports our self-management ethos. Creative Writing for Wellbeing provided a safe, supportive opportunity for people living with MS to express their emotions surrounding the trauma of diagnosis, or of living with an unpredictable and often uncontrollable health condition.

Research suggests that writing about stressful or emotional issues results in improvements in both physical and psychological health.

The initial group still meet up, with the intention of working on a sit-com script about perceptions of disability.

Working with OthersWe have been working hard to strengthen our relationships with a range of organisations that can assist us in delivering services to our clients; • Gateway: we signpost clients to Health & Social Care Gateway (funded by NHS Lothian and City of Edinburgh Council). Specialist advice on health/social care issues. • LCiL (Lothian Centre for inclusive Living): we signpost clients needing specialist advice and information on Independent Living.

• Grapevine: held workshops at the centre and we signpost clients needing specialist advice and information on financial issues welfare and benefits.

• Thistle Foundation: we signpost clients to their Lifestyle Management programme, designed to support people dealing with difficult life situations or living with a long term health condition. We also signpost clients to their Mindfulness course which is designed to help people deal with the stresses of everyday living.

• MS Society Lothian Wide Branch: we support the work of the MS Local branch and work together on awareness raising, fundraising and support issues.

• Queen Margaret University, Physiotherapy Department – we are working with them in exploring research opportunities. Also final year graduates supported the evaluation work with KAL.

• Physiotherapists and Incontinence Nurses at Astley Ainslie Hospital (Neurology, Edinburgh) – our physiotherapy team have been developing working protocols with

• NHS Lothian – we have worked with the Neurological Alliance to develop and implement the new Neurological Improvement Plan. We have a small SLA with NHS Lothian in relation to providing specialised information, physiotherapy and promoting self- management through adapted exercise.

• To continue to help improve services and standards through our membership of NNAG (National Neurological Advisory Group). Overseeing and supporting NHS Boards as they implement improvements, and in meeting criteria contained within the Clinical Standards for Neurological Health Services.

• To continue to attend the MS CPG (Cross Party Group) to influence relevant legislation, raise awareness of the experiences of people living with MS and ensure the voices of people affected by MS are heard by key decision-makers.

• NHS Lothian – we have worked with the Neurological Alliance to develop Opportunities for Young People Over the year we have supported four young people through the schools work experience placement programme; giving young people an opportunity to work with our physiotherapists and hyperbaric oxygen operators. We also supported a young person through the Community Jobs Scotland programme. VolunteersVolunteers extend and augment the work of our small staff team (2 f/t, 4 p/t). They assist by providing support with Oxygen Chamber operation, fundraising activities, administration, client interaction, and general maintenance as well as specialist help in a variety of areas, such as IT. • Average Volunteer numbers throughout the year was 36: 9 Trustees; 25 Volunteer HBOT Operators; 2 Administrative support.• Age range of our volunteers 16-70 years of age, and culturally diverse: 58% British; 10% Spanish; 10% Polish; 6% Italian: 6% Asian; 6% American; 4% African. • MS Society Lothian Wide Branch: we support the work of the MS Local branch and

Service Development for 2015 • To further develop our working relationship with NHS Lothian in supporting the implementation of The Neurological Care Improvement Plan, and in building referral routes to Occupational Therapy; Physiotherapy; MS Nurses; Incontinence Services. • To continue our physiotherapy outreach service, and seek funding to ensure our clients’ needs are met within their home environment. • To work with organisations to raise awareness of the benefits of hyperbaric oxygen therapy. We can achieve this through our work with the Neurological Alliance, Diabetes Scotland, GP Practices, and Cancer Services. • To develop a focused advertising and marketing strategy based on the positive outcomes and research evidence for a range of conditions such as: Diabetic Ulcers - Chronic Wounds - Radionecrosis - Fibromyalgia - Sensorineural Hearing Loss - Sports Injuries - Crush Injuries - Compartment Syndrome and other Traumatic Ischemia’s - Complex Regional Pain Syndrome - Inflammatory bowel disease (IBD) - including Crohn’s disease and ulcerative colitis.• To develop relationship with Anne Rowling Regenerative Neurology Clinic in supporting research into MS. • To develop relationships with NHS Borders and Fife in the development of referrals and support services for our MS clients living in these areas.• To continue and expand our work with MS Society, and MS Lothian Wide Branch in raising awareness of MS and in supporting people living with MS accessing services and self-management opportunities.• To continue to work with MS National Therapy Centres in maintaining standards and sharing knowledge and practice.• To continue to work with fellow member organisations of the Neurological Alliance in Scotland raising awareness of neurological conditions and in raising service provision and development

Complementary Therapies

We have run 31 weekly self-management activities of which 21 have become self-supporting. Initially offering yoga, Pilates and hydrotherapy, we set up circuits (aerobics)in Edinburgh and in East and West Lothian we ran a “Yoga for Healthy Lower Backs” programme. In Midlothian, West Lothian and Edinburgh we ran four Tai Chi programmes.

Over two years KICC Active Lothian have offered 967 classes to 300 people with Long Term Health conditions. We made exercise more accessible with classes in the community venues with local, skilled tutors.

We built a network of 35 tutors and assisted with financial support to undertake CPD to enhance their work with people with LTC thereby leaving a lasting legacy in the community.

KICC Active Lothian is a partnership project between the MS Therapy Centre Lothian and KICC, a community based voluntary group. It is fully funded by the Alliance Scotland through the Self-Management Impact Fund until March 2015, and to date it has seen some great results.

Due to KICC’s established links in East Lothian KAL were able to build on this providing further classes in the region. Classes in Edinburgh began in April 2014 and in under a year we have eight sustainable weekly classes and have had 119 people from the city take part demonstrating the demand, need and potential for adapted exercise.

We have identified suitable venues throughout Lothian and have built and sustained partnerships to ensure a referral pathway into our classes.300 people from all over the Lothians have taken part in our weekly classes. The vast majority have come from Edinburgh and East Lothian.

Pilates was the most popular exercise. Circuits classes were only run in Edinburgh but were popular and there is the potential for good uptake in East and West Lothian if classes were expanded.

“I find the class very relaxing

and [the tutor] never pushes us

beyond our capabilities. We get

very helpful individual attention

unlike some classes I have

attended.”

What our Clients say About Us

“Very friendly staff! I dread to think what it would be like without this place.”

D.W. MS Client

“Always a ver

y happy

place. I e

njoy meetin

g

with other

s with MS.

Would like

a bigger

centre (outg

rowing

itself).”

A.W. MS Client

“It’s like a big family, makes me feel great walking in here, so much

support and understanding”

Very appreciative of my experience I have had at the MS centre. Extremely efficient,

friendly and welcoming staff.

“Great place to visit! Volunteers and staff are great and very helpful!” A.W. Non-MS Client

“Think the centre does a great job!

Improves your well-being!” “Been a positive

experience all around!”

C.H. Non-MS Client

“Would be helpful

if the sessio

ns

began and ended

on time due to

transportation.”

“I wish the

Centre received

government

funding.”

“A Centre

closer to

Fife!”

“Bigger centre, more staff, more sessions!”

“Would like a

bigger Centre

(outgrowing itself).”.

Some statistics.MS Clients by gender Oxygen Therapy Clients

Some statistics.MS Clients by gender Oxygen Therapy Clients Our Finances

Through hard work, effective fundraising, generous donations and efficient management of resources, in this tough economic climate our financial outturn for 2014 remains positive.The breakdown of our income and expenditure from 1st January-31st December 2014 is shown below in graphic form. It is very encouraging to see an increase in voluntary income, mainly through donations and gifts in kind.

Total Income for the year was £252,869. We received £30,004 under a Service Level Agreement with NHS Lothian; reduced by 2.5% under NHS cost saving measures as from April 2014.

£27,001 was received from Grant Awarding bodies to assist with service development areas and staff costs.

£34,461 awarded from Alliance Scotland (self-Management Impact Fund) as part of a two-year funding for KAL project (ceases March 2015)

£116,291 received through voluntary income via Donations, Membership Fees and Legacies

£32,132 was raised through a variety of Fundraising Activities.

£8,537 raised through Therapy Fees and reduced charges for adapted Pilates/Yoga /Acupuncture

Total Expenditure for the year was £262,908.

Equipment maintenance and running costs Staff Training Rent and Rates Heat and Light PR/Advertising Office Supplies Depreciation Accountancy Telephone/IT Travel/Subscriptions Purchases Other

Staff Salaries and associated Costs

Net result was a deficit of £10,039. Deficit arose as a result of funds being received in advance during 2013 which were spent during the 2014 financial year and an accrual for gift aid repayable following the conclusion of the HMRC Gift Aid audit of £13,363. Unrestricted funds had a surplus before transfers of £1,724 (2013: deficit £7,773).

A great deal of work goes into providing our services and supporting our clients, and we couldn’t have done it without the support of our dedicated band of volunteers, our committed staff team, donations from our clients and others, our Trustees and funding from award giving trusts, organisations and fundraising individuals.

Capital SolutionsBank of Canada (Charity of the Year 2014)Dean Reilly – Dean Vs MS CampaignDrylaw Parish Church Dunfermline Golf Club Pro Celeb Edinburgh Bar Association Benevolent Fund EMF RunnersGreenbank Parish Church Hymans RobertsonJ Smart & CoJohn Lewis PLC Kirkliston Parish Church Lothian Buses Employees’ Charities FundNHS Lothian MadHatters Tea Party Fundraisers! Principle & Prosper Holdings Randolph HillRS Macdonald Charitable TrustThe Alliance Scotland The Robertson TrustThe Rotary Club (South Queensferry)The Ryvoan Trust The Stafford TrustThe Weir Charitable TrustWidows Sons of Scotland

Plus all those bungee jumpers, runners andeventers who have supported us throughout the year!

Members of the MSTC Board Carole Macartney (Chair) Sheila West (Vice Chair) Cathal Cunningham (Treasurer) Yvonne Rafferty (Secretary) Janice Thomson Paul Bartlett Iain Smith Ben Moran Neil Lucas

AccountantsCharity Figures25 Newmills RoadEdinburgh EH14 5SU

External Examiners Whitelaw Wells Chartered Accountants 9 Ainsley Place Edinburgh EH3 6AT

Bankers Royal Bank of Scotland 2 Bernard Street EdinburghEH6 6PU