Planning care for a person with MND
Motor neurone disease (MND) is a progressive and terminal disease that attacks the motor neurones, or nerves, in the brain and spinal cord. This information is for you if you’re a care worker – someone who is paid to provide care for people who are unable to look after their own care needs.
MND affects every individual differently. People with MND should have a full assessment of their care needs, which includes their preferences, likes and dislikes.
A detailed, personalised care plan and statements of preferences should result from a discussion with the person with MND about the whole picture of needs they have: health, personal, family, social, economic, educational, mental health, and ethnic and cultural background. It should draw on information from the person with MND and relevant health and social care professionals involved in their care.
A key member of the person’s health and social care team will be responsible for having this conversation and designing the plan with the person with MND. The plan will involve a number of organisations and professionals who will be directed by a key worker. This may be a relative.
Because of the progressive nature of MND, a care plan for a person with the condition should be regularly reviewed in order to respond to ongoing changes in needs. This review should be carried out by a professional who can support the person with MND and those around them through the process. As a care worker, you should follow this plan and report back to your supervisor when needs are changing and a review is required.
- Understanding my needs is a tool that enables people with MND to record their wishes and preferences for care. It can be ordered from MND Connect.
Also see our information on:
Whether you are caring for a person with MND in their own home or in a residential care setting:
- Communication issues should not prevent an assessment of needs.
Every effort should be made to understand the person’s needs, even if they find it difficult to communicate - see our section on communicating with a person with MND.
- Take your time to understand the needs of the person with MND.
If possible, talk to the person with MND and their family carer, if they have one. The knowledge they have about how the condition affects them will be useful to you.
- A care plan should be prepared for you to follow from the first point of caring for a person with MND.
It should be updated in light of regular assessments (monthly in the early stages) of the physical and psychological needs of the person with MND and their family. More frequent assessments may be needed as MND progresses.
- Talk to the main carer/partner/spouse of the person with MND.
They often know what works best.
- Be prepared to be patient.
Activities such as eating, drinking, communication and dressing will take more time.
- Find out who to contact about particular issues.
As you are likely to be in day-to-day contact with the person with MND, you are a key part of the multidisciplinary team and may notice changes or issues in between appointments.
- Keep a diary of all appointments with professionals.
This is useful to have to hand to see when particular professionals last visited or are due to be seen again.
- Avoid making assumptions about the person’s wishes.
When someone has advanced MND it may be easy to assume they have little quality of life, but the person themselves may consider their quality of life is better than it is perceived by others. Ask the person for their thoughts and perceptions.
- Report any concerns about your client’s condition to your manager.