Rehabilitation for chronic neurological disorders including acquired brain injury

Rehabilitation for chronic neurological disorders: the care you should expect

Rehabilitation can help people with acquired brain injury, acquired spinal cord injury, acquired peripheral nerve disorders, progressive neurological disease and functional neurological disorders to live as independently as possible. Progressive neurological disease covers a wide range of conditions, including Parkinson’s disease, multiple sclerosis, motor neurone disease, Duchenne’s muscular dystrophy and Huntington’s disease.

We want this guideline to make a difference to people with rehabilitation needs for a chronic neurological disorder by making sure that:

• you have a holistic rehabilitation needs assessment as soon as possible
• your health and social care team works with you to agree your rehabilitation goals and draw up a rehabilitation plan
• you are assigned a single point of contact as part of your rehabilitation plan to help you understand and access rehabilitation services
• your family and carers are offered support to help with your rehabilitation, if that is what you both want
• you are provided with equipment and adaptations to your home to help with activities of daily life
• you are offered interventions to meet your social, psychological, emotional, cognitive, communication and physical needs.

You may be given a rehabilitation passport, which is a simplified version of your rehabilitation plan for you to carry with you. Your single point of contact may be a person or contact with a unit or team.

Making decisions together

Decisions about treatment and care are best when they are made together. Your health and social care practitioners 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 are your main rehabilitation goals?
• How is your condition currently affecting your day-to-day life?
• What are you most worried about?

If you need more support to understand the information you are given, tell your healthcare or social care practitioner.

Read more about making decisions about your care.

Where can I find out more?

The NHS website has more information about Huntington’s disease, motor neurone disease, multiple sclerosis, muscular dystrophy, and Parkinson’s disease.

The organisations below can give you more advice and support.

• Duchenne UK
• Headway – The Brain Injury Association, 0808 800 2244
• Multiple Sclerosis Society, 0808 800 8000
• Multiple Sclerosis Trust, 0800 032 3839
• Neurological Alliance, for a list of their member organisations that offer support
• Parkinson’s UK, 0808 800 0303
• Spinal Injuries Association, 0800 980 0501

You can also find information about people’s experience of motor neurone disease and Parkinson’s disease on healthtalk.

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 a chronic neurological disorder and staff who treat and support them. All the decisions are based on the best research available.

ISBN: 978-1-4731-7255-5