Physiotherapy for people with motor neurone disease (MND)

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Not all physiotherapists will have worked with MND before. The specialist skills and experience of a neurological physiotherapist, either from the NHS or an independent practice, can provide a more in depth approach to specific movement disorders, as with MND. When being referred, try to discuss what type of physiotherapist would be best suited to help: A referral from your GP Depending on where you live, make an appointment with your GP and ask to be referred to a physiotherapist who has knowledge and experience of working with MND. Referral from your MND Care Centre or local neurological centre Many people living with MND are linked to an MND Care Centre or a local neurological centre. Both offer co-ordinated care to people with MND in a multi-disciplinary team (MDT) setting, where you can receive assessments and treatment from a wide range of health and social care specialists, including referral to specialist physiotherapy services. Please contact MND Connect for further information about MND Care Centres and locations. We also provide information sheet 16 – MND Care Centre Programme (see Further information at the end of this sheet for details on how to access other publications). Local hospices Physiotherapists are sometimes available through your local hospice, as part of their palliative care provision. You can self-refer to a hospice. Self-referral It is becoming easier to refer yourself for NHS treatment. This includes physiotherapy and a whole range of other health services. Some regions already allow people to bypass their GP and go straight to physiotherapists for NHS treatment. Your GP or local NHS hospital will be able to tell you if self-referral is available in your area. Paying privately If you are in a position to pay for your treatment, there are a large number of physiotherapists across the UK. If you decide to pay privately, check that your physiotherapist is registered with the Health and Care Professions Council (HCPC), (see Other organisations towards the end of this sheet for contact details). Occupational health schemes Some large employers run occupational health schemes for their employees and may include provision for physiotherapy treatment. If you are employed, check to see if a scheme is available and if you are eligible. Private medical insurance Private medical insurance schemes often include physiotherapy. If you have private medical cover, check to see if you are eligible. 6
How often do I need to see a physiotherapist? This will change with the progression of the disease and service provision also varies across the UK. However, a physiotherapist usually prefers an ongoing supportive role, reviewing your needs at regular intervals. Monitoring by telephone can be helpful, enabling the physiotherapist to respond to your queries or those of your carer. You will be encouraged to do your physiotherapy plan as independently as possible. Sometimes it is not possible for exercises to be performed without assistance and your physiotherapist is likely to want to meet and give guidance to your main carer (whether this is your partner, a member of your family or a friend). Where can I receive physiotherapy? Appointments with your physiotherapist may take place in a hospital, GP surgery, a health centre or even a local hospice. Some physiotherapists will visit you at home if it is particularly difficult for you to travel. Is physiotherapy linked to occupational therapy? Physiotherapy has much in common with occupational therapy and the two disciplines often work together to provide support. Physiotherapists deal primarily with physical injury or specific disorders that affect muscles and limbs. They provide physical treatment, to help maintain or improve functional movement. They can prescribe a few medicines and recommend or make arrangements for certain types of equipment or aids. An occupational therapist does not provide treatment or prescribe any medicine, but looks instead at the person’s overall well-being, regarding both physical and mental health. This includes assessment of the immediate environment, whether at home or at work, to help the person function to the best of their ability. They can recommend a wide range of equipment or aids, alternative ways of doing tasks or advise on aspects such as home adaptations. With MND, you are likely to meet both. A coordinated approach between them can be particularly beneficial, as the combination of physical therapy and environmental support can help to prolong independence and improve quality of life. If you have not yet seen an occupational therapist and feel it would be helpful, ask your GP or wider health and social care team about referral. Will I still need assistive aids and equipment if I have physiotherapy? Although physiotherapy can help you to remain independent for as long as possible, MND is progressive and you are likely to use assistive aids and 7
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Physiotherapy for people with motor neurone disease (MND)

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