Welcome to the website of the UKMSSNA
The United Kingdom Multiple Sclerosis Specialist Nurse
Association (UKMSSNA) is the professional membership
organisation for Clinical Nurse Specialists in multiple sclerosis
and for other health and social care professionals with an interest in the care
of people with MS in the United Kingdom.
Our Mission
To improve the lives of all those persons affected by
multiple sclerosis through the provision of education, information, support and
appropriate healthcare services.
UKMSSNA Purpose
The UKMSSNA was set up in 2001 to:
- facilitate the development of a specialised branch
of nursing in multiple sclerosis
- establish and maintain standards of nursing care in
multiple sclerosis supported by Department of Health, NMC or other
government initiatives
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support nurses and other healthcare professionals
who care for people with MS
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Support multiple sclerosis nursing research, general
research and clinical trials
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educate the health and social care community about
multiple sclerosis and disseminate this knowledge throughout the UK and the
rest of the world.
The UKMSSNA is affiliated to the International
Organization of Multiple Sclerosis Nurses (IOMSN)
What Members say about the UKMSSNA:
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I have always found the UKMSSNA incredibly supportive.
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I think the UKMSSNA are doing a great job for the MS Nurses. It is good to have a local contact to update us on your work. Thanks!
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I think they do a great job and I know I can approach them if I have a question or a problem.
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I know and feel that if ever I had a problem or needed an ear to bend I would get that support from UKMSSNA. It's excellent value for money. Thank you UKMSSNA for all that you do.
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I think the UKMSSNA does a fantastic job of supporting and enabling peer support of MS Nurses across the country and the regular e-newsletters are really valuable.
For more information and to download application forms go to the Joining page
What patients say about MS Nurses:
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"The MS nurses have made me aware of all that is available for me. ...It is reassuring to know they are there."
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"My MS Nurse is nothing short of a lifeline for my husband and me."
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She organises meetings for patients and invites guest speakers to cover different subjects of concern. She gladly seeks out any information I require."
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"She has a greater understanding of MY condition than any other healthcare professional. Her years of experience mean that she can always answer my questions when others cannot."
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I do not think that anyone has the understanding and empathy that the MS nurses have. GPs do not have the understanding as they have to deal with so many other illnesses. Who else do you phone for advice or help when you are concerned or worried?"
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I cannot thank the MS nurses enough for the care and support they have given me. It is so reassuring to be seen and to speak to specialists. I have read a lot about MS and have a very supportive family, but the support I get from the MS Nurses cannot be found anywhere else. Thank you."
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The MS Nurse is always approachable and talks to you as an individual yet draws on experience she has gained with similar patients. I can talk to an MS nurse more easily than a neurologist."
The Role of the MS Specialist Nurse .jpg)
MS Specialist Nurses are experts in nursing and the specialist requirements of patients with complex health problems.
Patients want specialist nurses to meet their special health needs and
MS nurses are able to provide regular and ongoing assessment and support that is not provided traditionally within the medical model. They promote a "wellness" approach and coach patients to live healthily throughout the disease trajectory.
In 2001 the role of the MS Specialist Nurse was identified as
"[to] Empower those affected by MS by providing information, support and advice about the condition from time of diagnosis and throughout the disease spectrum. The MS specialist nurse is pivotal in providing a greater understanding of the condition, and by adopting an holistic, collaborative and co-ordinated approach can help those individuals, where possible, reach their goals of self management. The role also involves acting as a consultant and educational resource for staff striving towards greater awareness and knowledge of MS in the health and social arena."
(MS Trust, UKMSSNA, RCN. Specialist nursing in MS – the way forward: the key elements for developing MS specialist nurse services in the UK. MS Trust, April 2001.[out of print])
Education is an important part of MS Nursing and includes providing information to:
- Patients and their families
- Carers
- Health and Social Care professionals
- Student nurses
- Employers
There are now around 300 MS Nurses throughout the UK and there is a more strategic approach to new posts and an
acceptance of the MS Specialist Nurse as a mainstay of MS management together with the emergence of models within MS Nursing with a clearer definition of the role.
MS Nurses now support thousands of people with MS, including those on treatments. The responsiveness and accessibility of MS Nursing Services are highly valued and the role has expanded to include MS nursing research, publication, and service development. The evolution of the role has enabled those with MS to enjoy a higher quality of life.
MS Specialist Nurses provide:
- "Newly diagnosed" courses which gives an introduction to MS, with speakers discussing various aspects of living with MS
- Nurse-led clinics problem-solving, assessment, lifestyle advice, support.
- Symptom management
- Initiation and monitoring of Disease Modifying treatments (where appropriate)
- Home visits (as appropriate)
- Lifestyle advice
- Telephone advice line
- Referral to other disciplines/ agencies, e.g. physiotherapy, speech therapy, occupational therapy
- Education to health professionals study days, link interest group for professionals with an interest in MS
- Drop-in sessions held at local venues, e.g. health centres, community hospitals, MSS branch meetings
- They are also present at consultant and multi-disciplinary clinics.
The MS Specialist Nurse should be contacted:
- If you have a question about your MS or treatment options
- If you are concerned by any symptoms you are experiencing
- If you think you may be having a relapse
- If you are finding it difficult to cope with any aspect of your MS
- If you need advice about medication
- If you want any information about MS
MS Nurses generally work Monday to Friday 9.00-5.00 excluding bank holidays. They are often out of the office in clinic or on home visits and but it is generally possible to leave a message and they will ring you back when they are free. They may not be able to respond for a couple of days because of other commitments.
Webmaster: admin@ukmssna.org.uk
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