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Multiple sclerosis: the care you should expect

Multiple sclerosis (MS) is a lifelong condition that affects the brain and spinal cord. It damages the layer that surrounds and protects the nerves, affecting how they carry messages around the body. This can cause lots of different types of symptoms, such as problems with sight, sensation, movement or memory. It can make muscles feel weak or very stiff, or people may lose feeling in their limbs. It can also cause fatigue and bladder and bowel problems. People typically develop symptoms in their 20s or 30s. The symptoms may come and go in phases or get steadily worse over time.

MS can cause serious disability and have a huge impact on people’s lives and those of their families. It affects approximately 130,000 people in the UK and is the most common cause of serious physical disability in adults of working age.

There is currently no cure for MS, but it is possible to treat many of the symptoms and there are medicines that can help people have fewer and less severe relapses.

We want this guideline to make a difference to people with MS by making sure:

  • people get diagnosed quickly and accurately by a consultant neurologist
  • people with MS and their families and carers get information and support when they need it that is suitable for their stage of life, including when they are approaching the end of life
  • people with MS who are planning to have children or are pregnant get the support and advice they need before, during and after pregnancy or adoption
  • people have prompt and tailored treatment and support to help manage their symptoms and to treat relapses
  • everybody with MS is offered a review at least once a year covering all aspects of their care.

Making decisions together

Decisions about treatment and care are best when they are made together. Your healthcare professionals should give you clear information, talk with you about your options and listen carefully to your views and concerns.

To help you make decisions, think about:

  • What matters most to you – what do you want to get out of your treatment and care?
  • What are you most worried about – are there risks or downsides to the treatment that worry you more than others?
  • How will the treatment affect your day-to-day life?
  • What happens if you don’t want to have treatment?

If you need more support to understand the information you are given, tell your healthcare professional.

Read more about making decisions about your care.

Where can I find out more?

The NHS website has more information about multiple sclerosis.

The organisations below can give you more advice and support.

NICE is not responsible for the content of these websites.

To share an experience of care you have received, contact your local Healthwatch.

We wrote this guideline with people who have been affected by multiple sclerosis and staff who treat and support them. All the decisions are based on the best research available.

ISBN: 978-1-4731-4608-2

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