Marie Curie Hospice Newcastle, which provides care and support to people who have received a terminal diagnosis and their carers, embarked on a service improvement project with a view to improving the experience of people living with Motor Neurone Disease (MND) at an early stage of their diagnosis. This project was delivered in partnership with the Motor Neurone Disease Association (MND Association), and with their support we have developed the group, Living Well: an early access programme for people living with MND.

Anecdotal evidence suggests patients diagnosed with MND have limited access to support networks at the early stages of their condition. Many patients also report that they prefer not to think too far ahead as a coping strategy to this changing condition, which can lead them to decline engagement with any such services that may be available.

The group began in September 2017 and has offered practical advice on living well with MND including basic moving and handling techniques; education sessions from a range of professionals including dietician, speech and language therapist and benefits advisor; and received complementary therapies such as massage and reiki.

The group has been running for over eighteen months. We are continually reflecting, reviewing and implementing change as appropriate. We have received fantastic user feedback from patients and carers who have been instrumental in the focus for the group. Participation has enhanced the person’s understanding of the hospice and has allowed for seamless access to Inpatient Unit/Day Therapy Unit if required, or support being put in place for home, facilitating patient choice where possible. This feedback highlights that a support group for people living with MND is valuable and beneficial to both the patient and carer, and our hope is for this service to continue at the hospice.