Palliative care for MND
Motor neurone disease (MND) is a progressive and terminal disease that attacks the motor neurones, or nerves, in the brain and spinal cord.
Palliative care is active holistic care of people with advanced progressive illness. It involves:
- management of pain and other symptoms
- psychological support
- social support
- spiritual support.
The aim of palliative care is to achieve best quality of life for people and their families.
People with MND have particularly complex care and support needs in the final stages of life. Because MND can be rapidly progressive, it is important that people with the condition are offered referral to specialist palliative care services at an appropriate time.
The appropriate time for referral will vary, depending on factors such as the availability of local MND care centre or network services and the speed of progression of symptoms.
Establishing early links with palliative care and specialist services can provide a useful source of support. However, introducing the concept of palliative care can present some difficulties, because of the stigma and lack of understanding around what palliative care is and what it can provide.
- Explain the role of the palliative care team and the potential benefits.
- Introduce the service via day care, respite or complementary therapies.
- If palliative care includes referral to a hospice, stress that this doesn’t mean that death is imminent, as many people view hospices purely as places where people die.
- Discussing advance care planning ensures that the patient’s wishes are respected at each stage of the disease.
- All people with MND should be placed on local palliative care registers/lists/co-ordination systems, where these exist – eg the Gold Standards Framework, Electronic Palliative Care Co-ordination Systems (EPaCCS). This will ensure that future care can be planned and coordinated.
Find out more
More information can be found in our booklet for health and social care professionals: