Providing services in partnership across NHS Wales

Aneurin Bevan UHB; Cardiff and Vale UHB; Swansea Bay UHB; Hywel Dda UHB; Cwm Taf Morgannwg UHB - South Wales Motor Neurone Disease Care Network

Motor Neurone Disease (MND) is a relatively rare, progressive and incurable condition, resulting in a range of neurological impairments including weakness and wasting of muscles, resulting in loss of mobility, speech, swallowing and respiratory function. There is no cure for MND, although proactive care and support can improve quality of life.  Many people living with MND (pwMND) and their families are fearful of what will happen as their illness progresses.

Specialised services for pwMND and their families were limited prior to 2012. The previous model of a Care Centre with two specialist nurses in Cardiff resulted in areas of good care, but also areas of patchy and poorly coordinated care across South Wales. Many pwMND had no access to specialist input and their needs were not met in a coordinated or timely fashion, resulting in reduced quality of life.

A new Network model of care has been developed and implemented with support from the MND Association. The model involves building on established links between key professionals from relevant specialties and professions, and forging new links across primary, secondary and tertiary care, across statutory and voluntary sectors, across health and social care, and across community and hospital settings. Twelve multi-disciplinary clinics have been established across South Wales since 2013. These clinics effectively provide a 'one stop shop' for pwMND, reducing the amount of time spent at appointments, reducing medicalisation of their disease and giving pwMND more time to 'live with MND' rather than 'die from MND'.

A service is now offered to all pwMND in South Wales, including initial assessment by a care coordinator at home, providing information and support following diagnosis, and 3 monthly appointments at one of the 12 MDT clinics held across South Wales.