Raising awareness

Providing a Library and Information Service on Motor Neurone Disease in Scotland

Abstract: The Scottish Motor Neurone Disease Association is an independent Scottish charity which in 1998 received grant funding to develop a library and information service. This service is for patients, families, and health and social care professionals as well as charity staff, trustees and the general public. As the charity has received additional grant funding to develop services in education, counselling, and volunteering, the library service has widened its information provision. The benefits of networking with SHINE colleagues and partnership working and collaboration with library staff in the NHS have enabled the librarian to raise awareness of the condition.

What is motor neurone disease?

People with MND gradually lose all freedom of movement and independence. Some people describe their mind as being trapped inside their body. MND is a fatal group of related diseases which destroy the motor neurones of the body. Muscle wasting results. As MND progresses, loss of muscle function spreads throughout the body. Paralysis, loss of speech and eating difficulties are inevitable. Intelligence and memory are usually unaffected. The cause of MND is unknown and there is no cure.

Facts and Figures

• At any one time, almost 280 people are affected in Scotland.
• 137 people were diagnosed in Scotland last year.
• Over 120 people die of MND every year in Scotland.
• Over 105,000 people are diagnosed each year worldwide.
• Average life expectancy from diagnosis is 14 months.

The Scottish Motor Neurone Disease Association was founded in 1981 by a young policeman with MND who believed that people with MND and their families should receive care and support suited to their individual needs, enabling them to live their lives as fully as possible. The association is a registered charity and brings together all those people concerned with MND in Scotland, including those living with the disease, their carers, and health and social care professionals.

The Scottish Motor Neurone Disease Association aims to fight the disease in three ways:

• By providing care, information, and support for those living with MND in Scotland
• By promoting and funding research into the causes, treatments and a cure for MND
• By improving the understanding and knowledge of health and social care professionals and working towards recognised, consistent standards in care.

In 1998 the charity received funding from the Scottish Executive to improve the provision of information. Two new posts were created, including one full-time Communication Officer post dealing with the media, website maintenance and publications. I was recruited to the part-time Information Officer/Librarian post to set up a library and information service from scratch. Both posts have helped to raise awareness of the disease.

The library serves the following client groups:

• People with MND and their families/carers
• Health and social care professionals/researchers
• Charity staff and trustees
• The general public.

The library and information service is a hybrid between a business and health sector library. The small but growing collection supports the running of the charity with material on charity management, fundraising, and volunteering as well as the core subject areas of MND, palliative care, bereavement, caring and disability issues. Running the library combines the skills of a business and clinical librarian together with counselling skills. However, the charity now has a professionally qualified Counsellor and Befriending project staff in Fife and Tayside so the collection has also grown to support their information needs. The information role is wider than in some libraries and regular attendance is made at various fundraising and awareness raising activities.

One also needs a more varied wardrobe for this role – you might be at a ball assisting with online donations or meeting our President, HRH Princess Anne. Last week a famous footballer even popped into the library for a photo session with a patient! Activities outside of the library are important, such as taking an information stand on MND to exhibitions or conferences. You are a solo librarian but very much part of a larger team effort raising awareness about the condition. You are both library assistant and library service development manager rolled into one!

The last eight years have seen an explosion in health information on the internet and within a year of being in post the charity had launched its first website. The current website offers even more in the way of information provision with downloadable patient and health professional material, reading lists and a current awareness bulletin.

Most enquiries are received by telephone but others arrive by post, by email, by fax, or in person. The majority are from Scotland but having a website means that enquiries come from all over the globe. Many people with the disease or their families arrange to visit the library for further research and we now host regular family information evenings, some of which are held in the library. The saddest part of the job is knowing that many of your best library users are going to die.

Some patients and families make contact during the rather lengthy diagnosis process but most have never heard of the disease. After diagnosis the desire for knowledge about the disease is at its peak and a referral is made by the neurologist to one of the six members of our funded Care Team. The team is made up of MND clinical nurse specialists with backgrounds in neurological nursing, palliative care or occupational therapy. A week after diagnosis a phone call is made offering a home visit. Up to fifteen health and social care professionals can be involved in a case of MND and the Care Team smooth that process for the patient and family. They also educate other health professionals and network with their English colleagues who have a similar role although the two charities in Scotland and England are completely independent. During 2006 the charity expanded its education role with the appointment of an Education Officer working closely with the Care Team and the Information Service to expand education to families, health professionals and in particular to social care professionals. It is hoped to set up a Shared Space for MND using the community of practice software available from NHS Scotland Knowledge Services.

Both charities are part of an International Alliance of MND Associations working to improve care and research worldwide. An annual international symposium on MND takes place each year and now attracts over 500 delegates including patients. As I write this year’s symposium is taking place in Yokohama, Japan, where the majority of MND patients receive ventilatory support, which is not always available in the UK.

Many patients want information on complementary or alternative treatments, many of which have not undergone rigorous clinical trials and would not be recommended by their neurologist. However, the library service must try to track down as much information on the patient’s behalf without endorsing the treatment. Thanks to Dr Ann Wales, access to the full NHS Scotland e-library has enabled the charity to access the best resources for evidence-based healthcare. The charity also gained funding for a Volunteer Development Officer and has made use of library volunteers to help with projects such as maintaining an enquiries database and, more recently this summer, to update an Access database in preparation for the unified library management software project.

I have been delighted to be one of two voluntary sector libraries in the forthcoming new Scottish health libraries’ consortium which will go live in 2007 with a web-searchable catalogue. I have thoroughly enjoyed being on the working group of the first 36 pilot libraries and upgrading my knowledge of Marc21 cataloguing and third-generation library management software. The benefits of networking with SHINE colleagues and partnership working and collaboration with NHS librarians are very important when providing this library service as the majority of the charity’s core services are still funded by voluntary donations.

Sandra Wilson, Information Officer/Librarian
Scottish Motor Neurone Disease Association

76 Firhill Road Glasgow G20 7BA
T. 0141-945-1077
F. 0141-945-2578
E. info@scotmnd.co.uk
W. www.scotmnd.org.uk