Practical guides and useful links

3 min read

Below you'll find our collection of guides to managing symptoms and improving services, as well as links to professional organisations, clinical guidelines, policy briefings, reports, and related websites.

Professional organisations

UK MS Specialist Nurse Association (UKMSSNA)

The UKMSSNA is a professional membership organisation for Clinical Nurse Specialists and Therapists in MS. The UKMSSNA provides support, information and education to MS specialists across the UK, to enable them to provide appropriate healthcare services to people affected by MS

Therapists in MS (TiMS)

TiMS is an initiative which brings together allied health professionals who share a special interest in MS. TiMS supports, strengthens and promotes the role of therapy in MS care, and shares expertise among UK therapists working with people with MS. TiMS is supported and facilitated by the MS Trust.

MS Society - My MS My Needs

An April 2022 My MS My Needs report (PDF, 734 KB) by the MS Society is based on the results of the My MS My Needs survey they conducted, which this is the largest collection of patient-reported data from the UK MS community to date.

Chartered Society of Physiotherapy

A 2011 Chartered Society of Physiotherapy summary of evidence for physiotherapy.

Royal College of Physicians National audit of services

Audits of services for people with MS carried out in 2008 and 2011 by the Royal College of Physicians and the MS Trust.

International Journal of MS Care

A 2015 journal article 'Impact of Proactive Case Management by Multiple Sclerosis Specialist Nurses on Use of Unscheduled Care and Emergency Presentation in Multiple Sclerosis'. It is based on a retrospective service evaluation reviewing the impact of the introduction of proactive nurse-led management and a rapid response service on the rates of emergency presentation, hospital admission and bed use.

The King's Fund

The King's Fund is an independent charity working to improve health and care in England. This website contains a number of useful resources, interesting blogs and key publications about health policy in England. In 2017, the King's Fund released a short video - 'How does the NHS in England work? An alternative guide' - which aims to demystify the complex structure of the NHS in England and how it is changing.

NICE (National Institute of Health and Care Excellence)

Here are some key documents produced by NICE:

You can read the NICE Multiple Sclerosis Quality Standard (QS108) here. Published in 2016.

The NICE guideline (NG220) for Multiple Sclerosis in adults: management published in 2022.

You can read any other guidance produced by NICE relevant to MS.

NHS Documents

The NHS commissioning page shares all of its commissioning policies including public health commissioning and the commissioning oversight.

GIRFT RightCare Progressive Neurological Conditions Toolkit (PowerPoint, 2.4MB) published in 2019.

Treatment Algorithm for Multiple Sclerosis Disease-modifying Therapies (September 2018, NHS England) providing a framework to assist decision-making for MS specialists and people with MS, to reduce variation in prescribing across the UK, and to ensure effective, safe prescribing.

NHS England outlines their new 10-year health plan.

Sustainability and Transformation Plans - NHS planning guidance to help ensure that health and social care services are built around the needs of local populations. To do this, every health and care system in England will produce a multi-year Sustainability and Transformation Plan (STP), showing how local services will evolve and deliver the Five Year Forward View.

Strategic Clinical Networks

MS is covered by the 12 Strategic Clinical Networks across England covering Mental Health, Dementia and Neurological Conditions which exist to improve quality and link clinicians together.

MS, Sex and Sexuality

MS, Sex, Sexuality and Intimacy (PDF, 8MB) is a 2014 consensus guide for healthcare professionals to enable discussions about key concepts of sexual health and wellbeing, determine the right assessment tools, explore how a sexual history is taken and more. Published by Oyster Healthcare Communications. Biogen paid for the development and printing of this resource, but generated none of the content.

You can also read this useful blog about supporting people with MS to discuss sexual problems in MS by MS nurses Nicki Abel, Denise Middleton and Lesley Catterall.

Bladder and Bowel resources

A consensus bladder and bowel management pathway for multiple sclerosis: process and application is a paper from the British Journal of Neuroscience Nursing which encourages all nurses to be ‘bladder aware’ in multiple sclerosis.

The British Journal of Neuroscience Nursing published The neurogenic bladder: developing a consensus bladder and bowel management pathway for people with MS in 2022. This article outlines how the bladder can be affected in neurological conditions such as multiple sclerosis (MS) and the impact this has on patient quality of life and NHS resources.

The BJN Consensus 2021 Management of bladder dysfunction in people with multiple sclerosis (PDF, 3.1MB) discusses the need for updated guidance and management approaches for PwMS.

Pregnancy guidelines in MS

Guidelines for pregnancy care in MS, published in January 2019 and endorsed by the Association of British Neurologists. The guidelines bring together evidence from drug specific pregnancy registers and peer reviewed research. (Also read the MS Trust pregnancy guidelines news story, 10 January 2019).

Improving Your Relapse Service

Eight steps to improving your relapse service is our 2016 practical consensus guide aimed at MS nurses, GPs and health professionals involved in relapse care for people with MS. In addition, our developing relapse services resources feature downloadable guides to help improve services.

Factors influencing Multiple Sclerosis disease-modifying treatment prescribing decisions in the UK is an article (Cameron et al, January 2019), outlining a qualitative study to determine variation in prescribing Disease Modifying Drugs (DMDs) across the UK.

Brain Health

Read the Oxford Health Policy Forum Brain Health Report and accompanying Brain Health Report Infographic (PDF, 4.5MB)

Neurological Alliance

Share your experiences with #MyNeuroSurvey

Neurological Alliance England

Visit the Neuro Alliance England home page.

Read the summary report: Are we listening? The role of patient experience in supporting and informing service improvement in the NHS 2024 (PDF, 2.6MB)

Literature review: What do we know about the relationship between neurological conditions and protected characteristics?(386KB) A short review

My Neuro Survey - Data Briefing (PDF, 263KB). Experiences of respondents to the children and young people’s My Neuro Survey

Together for the 1 in 6: England findings from My Neuro Survey (PDF, 4.9MB)

Association of British Neurologists

Read the Association of British Neurologists: revised guidelines for prescribing disease- modifying treatments in multiple sclerosis. This 2015 report represents a consensus by British Neurologists on the use of all approved disease modifying treatments for MS in the UK.

National Service Framework

Although no longer current, the 2005 NSF for Long Term Neurological conditions (PDF, 1.4MB) was an influential 10-year plan for improving neurological services in the NHS.

Impact Reports

Measuring the burden of hospitalisation in multiple sclerosis

The 2015 disease insight report 'Measuring the burden of hospitalisation in multiple sclerosis' was jointly written by NHiS Commissioning Excellence and the MS Trust to highlight how better, more cost effective services can be delivered for people with MS.

Apollo Nursing Resource

Apollo Nursing Developed by Ulster University and bringing together numerous resources providing evidence for the value of specialist nurses.

Capturing the impact of nurse consultants

Nurse consultant impact was developed by Sheffield Hallam University and the Burdett Trust. This website has a useful toolkit on identifying and measuring outcomes.

Supporting People Living with MS FAQs

What can I do to support people living with MS?

Educate: Those with newly diagnosed MS are often scared and frightened of what lies ahead. Often, they have been exposed to myths and misunderstandings regarding what the disease is and how it might affect them. They are inclined to believe the worst and feel that a wheelchair life is inevitable. But, for most, this is not the case. So, a major part of what you can do is to educate the individual regarding 'what is MS' and the lifestyle adjustments that can make a difference. Challenge the misunderstandings they have and educate people accurately. Reading from reputable journals is useful to ensure your knowledge is correct and up to date. Be aware of new treatments and read about 'living with MS' so you can show empathy and understanding. Let the patient know about the MS Trust website and reassure them that the information they find there is accurate, evidence based and up to date.

Show you care: Be genuinely interested in how the patient is and find out more about them. What is it that you can do to promote comfort or a sense of well-being for the patient and their family? Spend time with the person and their family. Practice your skills at 'active listening'. Ask how they are feeling, and really listen to what they have to say. If they ask you a question you don’t know the answer to, go and find out, this way you will learn too and be more informed in case you are asked the same question in the future. It’s okay to say that you’re not sure about the answer to a question.

Let them know they are not alone: Some people who are newly diagnosed feel lonely and apprehensive. If this is the case, ask if they wish to meet others with MS. This is not for everyone, but it can help some. Inform them about local MS support groups that they can attend. If they would rather interact online, discuss the online chat rooms they might wish to take part in; the added advantage of these is that they are available 24 hours, even in the middle of the night there maybe someone online to chat to.

Find out their top 3 worries and concerns: sit with the patient and help them identify the 3 main worries/questions/concerns that they have. This will help them prioritise concerns and help them become active in their own care and management. Often people with MS can feel overwhelmed, particularly during times of change, such as after diagnosis. It is important that you enable them to start to tackle their problems to help them feel they are in control and make decisions and changes that are necessary.

How do I find out who the MS nurse or team are in the local area?

There is a map of MS services that you can link to which will enable you to search for MS health professionals (including MS nurses, neuro-specialist physiotherapists and occupational therapists, as well as other AHPs) within your local area, or in fact any area within the UK that you may care to search. This is always kept up to date.

It may also be worth making use of local networks of MS nurses/health professionals where they exist. There’s no substitute for speaking to experienced professionals face-to-face about what they do on a daily basis to provide effective MS care. This will also be an opportunity to hear about local health and social care services available to people with MS from local health professionals.

If you would like some further guidance about finding MS health professionals in your area, feel free to contact the MS Trust’s health professionals programme team at hpteam@mstrust.org.uk.

MS Nurses have a Specialist Nurse Association (UKMSSNA) that provides support, information and education to MS Specialists throughout the UK. There is lots of useful information on there if you want to take a look.

Are there any MS blogs that I could read or subscribe to?

Yes, there are a range of MS blogs. Some are written by people with MS that share real life experiences. There are too many to highlight here, but take a look on Google and see which you like best.

Others are hosted by Healthcare professionals who wish to educate and inform regarding the latest evidence based practice, such as the BartsMS Blog (a blog written by an MS neurologist and the MS team at Barts Health NHS Trust, which is very popular amongst both professionals and people with MS). There is also the MS Trust Health Professionals' blog, which invites different professionals with an interest in MS to contribute on a wide range of different topics. If you would like to contribute a blog on your experiences of working with people with MS as a student, please contact hpteam@mstrust.org.uk.

I would like to do some fundraising for the MS Trust, how do I do this?

There are lots of great opportunities and experiences for anyone who'd like to raise funds for the MS Trust.

The MS Trust relies on donations and the hard work of its dedicated fundraisers to fund its vital work, so anything you could do to help would be greatly appreciated.

How do I find out about current MS research and developments?

A good way to hear about research currently going on in the world of MS is the MS Trust’s research updates. These are a condensed summary of developments with links to further information. Sign up for research updates.

Also on the MS Trust website is a list of opportunities for people with MS to get involved in current research, information about drugs in development, and research opportunities for therapists in MS.