1981 1991 2001 2011

30 Years of Progress 1981 1991 2001 2011

The Big Challenge By the nineteenth century a number of neurological conditions were known to cause paralysis, impaired speech and difficulty eating and drinking. In 1869 a French neurologist named Jean-Martin Charcot was the first to suggest grouping a number of these neurological conditions together under one name now known as Motor Neurone Disease.

MND Scotland began because people with Motor Neurone Disease in Scotland were feeling isolated, vulnerable and under–valued by the health and social care professions. MND research was low on the agenda of the scientific establishment. This had been the status quo for more than a century.

Over the years, we have been responsible for so many changes for the better. These include:

Personal Support

Public Awareness

Improved Medical Practice

Political Influence

Scientific Activity

A policeman named John MacLeod who lived in Glasgow was the catalyst for change. He was determined to make life better for people affected by Motor Neurone Disease. 1981 1991 2001 2011

Contents

1980s The Eighties – An Evolving Positive Influence 4

1990s The Nineties – Nurturing Respect and Cooperation 8

2000s New Millennium – Influencing Decision Makers 12

Our 30th Anniversary Year 19

Special thanks to Martin Irwin for his research and collation of information that has made the creation of this publication possible.

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THE EIGHTIES Fowler|Dreamstime.com ©David An Evolving Positive Influence

There were many historical landmarks that live on within our national psyche and shaped today’s society. It was the decade of Charles and Diana, Live Aid, and the Fall NO of the Wall. Times were hard in Britain – unemployment POLL reached 3 million, inflation went through the roof, and TAX Scotland rejected the Poll Tax.

Positive change was occurring within a certain group of society during the early years of the decade. John MacLeod had been diagnosed with MND and during a visit to Charing Cross Hospital in London he learned about a charity that was already providing a level of © Artdirection | Dreamstime.com support for people with Motor Neurone Disease south of the border. He returned to Scotland with a passion to set up a similar organisation here.

1980’s 1981 1991 2001 2011

1981 John MacLeod was a popular and sociable man. His family, friends, and colleagues from Strathclyde Police Force sat up and listened as he shared his optimistic goal of starting a Scottish charity to fund research and provide support for people affected by MND in Scotland. His encouraging nature soon drew them together and they began raising awareness and organising fundraising events amongst their local communities.

These supporters met as a Steering Committee of the Scottish Motor Neurone Disease Association, for the first time, at Knightswood Community Centre on the 12th of May 1981. John MacLeod was elected President of the Association, and our status as a Scottish charitable organisation was agreed. We became the first Scottish charity for people affected by Motor Neurone Disease thanks John MacLeod to the guidance of John Anderson, a Steering Committee member who was employed by Glasgow Council for Voluntary Services. Steering Committee 12/5/’81 John MacLeod Peggy MacLeod I’d never come across a patient who had such determination Alan MacKinney “to set up a charity. John MacLeod always remained focused. Linda Reid Iain MacLeod He was a decent, honest and kind man.” Margaret MacLeod

Dr Peter Behan, John’s neurological consultant, Joan Kee based at Glasgow’s Southern General Hospital. Tom Russell John Morrison Ann Morrison 1982 In just over 18 months our infant charity managed to amass £30,000 to be Tom Daly invested in research. We were loaning equipment and with the assistance of Helen Ferry a Muscular Dystrophy Group nurse named Muriel Watt, we began a process Suzanne Ingle of professional support for people with MND in Scotland.

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1983 In October 1983, John MacLeod passed away. Peggy continued to work hard to carry out her ‘husband’s orders’ and our early supporters were as energetic as ever. We decided to start funding Dr Alan McCruden for 5 years at Strathclyde University. He would be in charge of the ‘John MacLeod Lectureship in Immunology’ in co-operation with Dr. Bill Stimson, one of our first funded researchers.

1984 Specialist care began to expand by co-operating with the Muscular Dystrophy Group and joint funding two Family Care Officers (FCOs) to work with people suffering from MND and others with Muscular Dystrophy. This was the start of one of the most important features of our charity’s services. Improving care for people with MND was a key objective and clients at home soon learned more about the illness and received better care from health and social services.

1985 Jeanette Young was employed to take on Administration responsibilities on a part – time basis. The regular newsletter began being published thanks to a volunteer named Jackie Anderson. It featured a ‘Find a Slogan’ competition to go with the new ‘Key’ charity logo. Carol Banks’ slogan won her the Giant Cuddly Panda prize and her ‘Help Find the Key to Cure MND’ became the tagline around the Key logo.

1986 Linda Reid, an original member of the group that launched the charity was elected as chairperson and we moved to Ingram Street where much of the equipment was held. Our two FCOs began a professional awareness effort by organising a one day seminar on MND at Yorkhill Hospital in Glasgow. It featured eleven specialist speakers and every seat in the auditorium was taken. 1981 1991 2001 2011

1987 The first Patient Questionnaire Survey was circulated amongst the MND community, two years before the Scottish MND Register was set up. The aim was to learn more about the quality of care that people affected by Motor Neurone Disease were receiving in Scotland.

Ann Jarvis was employed as Projects Director to help guide staff, researchers and volunteers in the right direction.

1988 It was a busy year. The Research Committee had its inaugural meeting and a research symposium was held at Glasgow’s Southern General Hospital chaired by Professor Peter Kennedy. A wealth of health and social care professionals 88’ Professor Peter Kennedy also had an eye-opener at our Annual Study Day which had become a regular feature of our service. Rita Walker became our first full – time employed FCO and Muriel Watt went back to work with Muscular Dystrophy clients.

1989 We set up headquarters at Parnie Street in Glasgow where we began accepting our first donations, holding equipment, setting up an office space and selling donated items. It was officially opened by the well known

comedian, Jack Milroy and his wife Mary Lee, who sang with ‘Big Bands’. 89’ Parnie Street Opening It all occurred in a blaze of publicity. We began funding the first Scottish MND An Entertaining Opening Register and compiled client information at the Western General in Edinburgh. On the evening of 14 December our new Office at Parnie Street was officially opened. The actual ‘opening’ was performed by the very popular Glasgow comedian, Mr. Patients were recruited to improve care and information, create a basis for Jack Milroy and his wife Mary Lee. They surprised and delighted everyone present by ‘doing a turn!’, and treated us all to a delightful comedy routine and one or two of research into the cause of the illness, and encourage patient involvement in the old favourite Scottish Songs. After which, they presented Mr. Dave Roberts B.E.M. and Mr. Grant Findlay with a decanter and tankard, respectively, as a small clinical trials. Developing increased research became more proactive as we token of our thanks for all the help they gave S.M.N.D.A. at the Garden Festival. The evening was very well attended and it was very worked together with the Institute of Neurological Sciences. encouraging for the National Executive Committee to see so many members and friends present and interested in the new office. I think I can safely say that a good time was had by all!

The starting gun at our 1989 Fun Run in Strathclyde Park “was fired by Claire Millar and John Stahl from STV’s

Take the High Road.” Taken from Easter 1989 Newsletter

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© Markwaters | Dreamstime.com THE NINETIES Nurturing Respect and Co-operation

There was a real sense of positive change in Scotland. We voted in favour of devolution and Scotland had its own Scottish new Labour Parliament again after almost 300 years. Britain became part new Britain of ‘Operation Desert Storm’ to liberate Kuwait. New Labour moved in to number 10 and their celebration anthem, ‘Things Can Only Get Better’ promised political reform on the front pages and across the airwaves. Professor Ian Wilmut’s Team at the Roslin Institute cloned ‘Dolly the Sheep’. The research provided a promising new direction for scientists interested in finding a cure for MND and other neurological conditions.

Our status as Scotland’s only charity for people with MND was clear but we became part of a global allied offensive to find a cure for MND. A huge number of our local supporters operating as Branches across Scotland were raising funds and awareness. Things were getting better for the MND community with an evolving care service and new discoveries were providing a sense of hope for people with MND around the world. 1980’s 1981 1991 2001 2011

1990

Branches“ raised over £33,000 and were officially recognised as a supportive network for people with MND.”

Eight research projects were being funded over a three year period in Glasgow and Edinburgh. It seemed like a good time to encourage researchers from around the world to share knowledge and meet one another so we co-sponsored the first International Research Seminar with the MND Association and the Irish MND Association. It attracted professionals from 23 countries and highlighted the most current exciting developments in areas including genetics, toxicology, and therapeutics. It was a good start to a new decade.

1991 It was our 10th anniversary year and additional research projects were launched in celebration. HRH The Princess Royal visited the Western General to learn more about the Scottish MND Register. We also became part of a new ‘International Alliance of MND/ALS Associations’ that has helped maintain intensive high – quality care and research in centres around the world.

1992 We began seeking a suitable professional to become a FCO to cover the Highland and Grampian regions. The service delivering equipment to people with MND illustrated the obvious gaps in health and social service provision. 91’ HRH The Princess Royal Over 200 items were loaned to people throughout Scotland including 51 communication aids for people with bulbar palsy. The first John MacLeod Award was created to recognise supporters for their ‘Outstanding Personal Commitment to Social, Recreational or Welfare Activity’. The first Award was received by Superintendent Willie Short from Strathclyde Police. Together with his colleagues he had helped guide our charity through its early years and raised funds and awareness of MND throughout the police force. 92’ Willie Short

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1993

“The SOD1 gene mutation was discovered. It was found to cause a small percentage of inherited MND cases.”

It was a special year for our Family Care Service. The FCOs were serving 17% more clients than in 1992. People in Grampian and Highland region finally had their own FCO and it was decided that an additional part-time West of Scotland Officer should be employed to relieve the pressure on Aileen Christie who had over 100 clients at the time.

1994 The Scottish MND Register came to an end due to lack of funding but was re-instated in 1995 under the leadership of Dr. Robert Swingler. The care service expansion continued as Carole Ferguson became a part-time Family Care Officer in the West of Scotland. As the number of professionals taking on this role grew, it became a team. It was this year that the term Family Care 94’ Dr. Robert Swingler Officer was changed to become MND Care Advisor.

1995 The National Executive Committee approved the change of our corporate identity from ‘Help Find the Key to Cure MND’ to ‘Help Find the Key to MND Research and Care’. It was also the year that staff members moved from Parnie Street to Firhill Road. Arnold Clark donated half the costs towards a car for our Christmas draw. Cars were displayed in shopping centres in Aberdeen, Glasgow, Dundee and Edinburgh to raise awareness of MND. 95’ Care Team 1996 HRH The Princess Royal officially opened our new head office at Firhill Road. Riluzole was launched as a drug for people with MND. “This is the first drug that has been produced which has an effect upon the disease, and there is a real sense of excitement” said Iain Edward, our Chairperson. Dave Chambers, Chairperson of the Perth Branch took part in its clinical trials. “It is not a cure”, said Dr. Andrew Weir who was to become a future chairperson, “but a significant result and major step forward” 96’ Official Firhill Rd opening 1981 1991 2001 2011

1997

“The charity was honoured to host the 8th International Symposium on ALS/MND in Glasgow. It was a huge success and attracted researchers and MND charity members from around the world.”

Delivering information to people affected by MND and health and social care professionals became a priority. A funding request to the Scottish Executive allowed us to set up the charity’s first specific Information and Library Service. It was also the year that our long term Perth Shop opened its doors to the public.

1998 At this year’s AGM the John MacLeod Award was presented to Mary McKee 97’ Library Service the Chairperson of Ayr Branch for long-term support at Parnie Street and creation of the Cumbrae Cycle. Christine Anderson also received the award for her effort in raising a noteworthy fundraising sum of £225,000 in the previous ten years. It was also a poignant year for our original HQ in Parnie Street - it was the end of an era for its volunteers and customers when the running costs became too great. 98’ Mary McKee 1999 It was the year of our first website. The website received over 24,000 hits & Christine Anderson during 1999 and allowed visitors to download our important information about MND for the first time. The Family Care Team expanded once more with the opening of our Tayside and Fife centre in Ninewells Hospital in the presence of HRH the Princess Royal.

98’ Cumbrae Cycle

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NEW MILLENNIUM Influencing Decision Makers

According to the media, the internet would crash and satellites © Thomas Langlands | Dreamstime.com would fall from the sky as we celebrated the first ‘Bells’ of the 21st century. We held our breath - of course it was all nonsense. After 13 years of intensive work, mankind finally established the first draft of the human genome. The NHS in Scotland developed its Health Service Framework to set a blueprint for the next 20 years. Scots looked on as the controversial Scottish Parliament building finally opened its doors at Holyrood. In 2007, Scottish independence was firmly on the political agenda as the SNP came to power and Alex Salmond became First Minister for Scotland.

MND Scotland was using the internet as an ever increasing method of reaching out to the public and professionals with its re-designed website. The success of the human genome project allowed us to invest in a new direction to help find a cure for MND. We started to approach politicians to support our services, and together with other charities and organisations, we encouraged the NHS to take a positive interest in care for people with Motor Neurone Disease and other neurological conditions. 1980’s 1981 1991 2001 2011

2000

“ A unanimous vote at the AGM for the charity to take on limited company status.”

Another Branch was founded in 2000. Central Branch met for the first time thanks to encouragement from Ann Kerr in Falkirk. Perth Branch developed a wheel-disc for wheelchairs. It carried the slogan ‘Fighting Motor Neurone Disease’. John Mackie, the Branch chairman had MND and relied on a wheelchair. His photograph appeared in the local press and the wheel-disc immediately proved to be a useful promotional tool. 00’ Central Branch 2001 Ten years worth of work was finally put on paper with the publication of results from the Scottish MND Register. This was also the year that the International Nurses Forum was created.

The Perth Shop ladies received the John MacLeod Award for all their voluntary effort. The social aspect of Branch activity evolved in Perth with the start of the Perth and Kinross Lunch. However, it was a sad year for

Perth Branch as their founding Chairperson Dave Chambers passed away. 00’ John Mackie The ‘Flying Film Festival’ took place during Awareness Week. A cyclist travelled from Aberdeen to Dumfries, stopping at independent cinemas to show films about MND and give talks. It raised a significant amount of awareness in local and national press along the way.

01’ Dave Chambers

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2002

“ Riluzole became available via the NHS”

People with Motor Neurone Disease finally had access to treatment with Riluzole via the NHS.

It was the year that our charity celebrated its 21st anniversary. The new Glasgow Branch celebrated in style at the City Chambers. It was a wonderful occasion that helped bring our new and existing supporters together. Perth Branch held a Civic Reception later in the year and our patron Magnus Magnusson KBE stood before the crowd to give a captivating speech. The first fundraising Ball held at the Moat House Hotel in Glasgow was the ‘Candy Bianca Ball’ and it proved to be the starting point for our later official annual Cornflower Balls. The first High Street shop in Perth also opened for a month in celebration of Awareness Week during June.

Bulbar Palsy, a feature of MND in some cases, causes major speech impairment. Research began in order to help develop ways to maintain communication. 02’ 21st Birthday 2003 Improved levels of access to online information began with the launch of our new website. Indeed, information development gained momentum with the creation of a new family information pack and popular family evenings.

Members of the general public became increasingly supportive of our services with the creation of a Volunteer Service. Our Befriending Service was established to help people with MND at home. 03’ Volunteer delivery 1981 1991 2001 2011

2004 Stephen Lang from East Calder suffered from MND. Stephen and his family were aware that holiday facilities often failed miserably to accommodate the physical needs of people with MND. So Stephen and his wife Denise began a project to raise funds for a special holiday facility. A committee put fundraising in place and raised £38,000 to set up the fully adapted Lang Break Caravan in Craigtoun Meadows Caravan Park, near St Andrews. Our charity has maintained and rented the caravan space ever since. Sadly 04’ Craig Stockton, CEO Stephen did not live to see the Caravan in action but he would have been & Denise Lang extremely proud to know that his brainchild has been enjoyed by hundreds of people affected by MND.

MND and emotional stress often go hand in hand. We began our Counselling Service to help improve the lives of those finding life particularly difficult.

A successful application for support from “‘The Big Lottery Fund’ helped us initiate a Counselling Service and CRUSE Bereavement Care helps us to train volunteers.”

05’ Book Presentation

2005 Our Library and Information Officer spread awareness by donating a copy of ‘Motor Neurone Disease At Your Finger Tips’ by Dr Stuart Neilson and Dr Frank Clifford Rose to all libraries in Scotland. This was achieved following a successful £5,000 funding application via an ‘Awards for All’ grant through the National Lottery.

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2006 Our Library Service developed another way “to reach out to professionals by becoming part of the NHS Shared Space (eLibrary)”

A proposal about the benefit of improved knowledge was accepted by the Scottish Executive and we received 3 years of funding for an Education Officer who had a career history in charity work, lecturing and genetics.

During 2006, we launched an easy to use eCampaign allowing members of the 06’ Education Service MND community to lobby their NHS Health Board for greater funding to maintain and develop our Care Service. It was also an opportunity to raise awareness within the Scottish Parliament by delivering a message to their local MSP.

An Evening Reception for MSPs took place at Holyrood and was attended by Princess Anne our Honorary President. Many MSPs present on the evening were shocked by the NHS funding shortfall. eCampaign replies from MSPs 06’ MSP Evening Reception around the country came in thick and fast. Motions of support were tabled by Frances Curran MSP and Margaret Mitchell MSP.

2007 Attracting new blood into the MND research fraternity became a priority and our 5 year rolling programme of PhD Studentships began. We set aside £600,000 in order to fund this.

The eCampaign finally paid off and we went to the Scottish Parliament. Margaret Mitchell MSP’s motion illustrated our work and needs of people with MND, to fellow members of the Scottish Parliament. It gained cross party support resulting in a debate regarding funding of the Care Service. The debate came on the eve of International MND Awareness Day and provided an opportunity to make an impression upon the public through the media. 07’ PhD Studentships 1981 1991 2001 2011

2007 People with MND and their families travelled across the country to be at the Scottish Parliament. Minister for Public Health, Shona Robinson wrote to all health boards to draw their attention to the terms of the debate and to encourage their collaboration with us. On the day she said, “I will refer specifically to the principle of extending 50:50 hospice funding to the care of people with MND. I shall monitor that situation. We must be sure that people with Motor Neurone Disease get the best possible care, wherever they live.” 07’ Shona Robinson MSP

Five out of fourteen Scottish Health Boards “provide some level of funding for our Care Service. We are continuing to lobby until satisfactory support is provided by all Scottish Health Boards.” 07’ eCampaign

2008 Important progress was achieved thanks to a partnership project with a consortium of 42 NHS Scotland health libraries to create the Scottish Health Libraries Catalogue (Shelcat). It was a significant achievement for us to have been one of only two charities involved in this pioneering project. We now have a complete, fully searchable catalogue of all of our information resources allowing visitors to borrow and reserve items online. Our Specialist 08’ Lightwriter Equipment Service received 6% of funding from four local authorities and the equipment delivery van travelled over 10,000 miles. Our Small Grants Scheme provided help worth almost £8,000 to people with MND.

2009 On the 20th of January, we formally became MND Scotland and adopted the Cornflower as our new logo. Our supporters travelled across Scotland through icy rain to Stirling Castle to join our honorary president, HRH the 09’ MND Scotland Launch Princess Royal, and Minister for Public Health, Shona Robison MSP in a warm evening of reflection and friendship.

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1981 1991 2001 2011

2009

The Cornflower is the International Symbol “ of Hope for People with MND.”

We launched a redesigned website. It contained downloadable files from a newly created Patient Information Pack. This pack was distributed as a hard 09’ Cornflower Logo copy to people with MND via the Care Team Service. Our new site would also become a gateway for the popular use of MND Scotland’s online social networks.

Awareness was raised in June with the showing of “Sarah’s Story” on our website. It was a hard hitting, short film conveying the possible psychological and physical effects of MND. We had been refused permission to air it on television so it was launched on the charity’s website. Our media campaign resulted in controversy and helped raise awareness of MND and MND Scotland.

A pilot Support Group Service for people affected by MND received very good feedback. Families, carers and people with the illness are now enjoying social meetings with others living locally, in an increasing Scottish network.

2010 MND Scotland’s ‘Patient and Carers Centre’ was officially opened by 09’ Sarah’s Story Princess Ann. It is a hub for our Information Service, Counselling Service and the Welfare and Benefits Service which began in 2009. Our Volunteer Service also began Complementary Therapies. People with MND in a wide area of Scotland are now enjoying treatments such as therapeutic massage and Reiki thanks to the generous time offered by volunteer experts.

The official launch of Clinical Standards for Neurological Health Services occurred in 2010. A section contains specific standards to improve NHS services for Motor Neurone Disease. The creation of these standards is 10’ Clinical Standards a significant step in improving services to people with MND in Scotland. The challenge now is to ensure that the standards are implemented. 1981 1991 2001 2011

Our 30th Anniversary Year

It will be a year of celebration with special events throughout Scotland. We are aiming to raise the maximum amount of awareness. Our Cornflower emblem will grow this summer in the gardens of the general public who choose to plant seeds distributed at Glasgow Central and Edinburgh Waverly train stations on Global Awareness Day in June.

It is a year when our new Manifesto will be presented to politicians in the Scottish Parliament.

The Manifesto calls for:

Full Implementation of QIS Standards for MND

Improved Access to Equipment and Adaptations

Support for MND Research

Improved Access to Benefits

Cross party support will allow us to take questions to Holyrood to encourage political awareness and changes to benefit people affected by MND. Scottish Parliament

We began with John MacLeod, and MND Scotland continues to develop “the quality of care, information, and funding for research, that he initiated 30 years ago. Whilst doing so we remain optimistic, as John did, that we will one day live in a world without Motor Neurone Disease.”

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MND Scotland is the only charity funding research and providing care and information for people affected by Motor Neurone Disease in Scotland. Scottish charity no. SC002662. Company limited by guarantee, registered in Scotland no. SC217735.