Background Prior to the changes, pockets of good practice existed but services were uncoordinated and communication ineffective. Care was often reactive in response to crises and patients reported feeling unsupported and uncertain whom to contact should their condition change. A multi-disciplinary MND clinic existed; however this was hospital based, difficult to access and community service provision was patchy. The need to improve services was identified at a stakeholder event, which brought more than 60 people with MND, carers, professionals and commissioners together.

The post of MND Coordinator was developed in discussion with the local MND Association, and supported by the local NHS Primary Care Trust. The post was funded and based within our local hospice in Bedfordshire, with the aim to take the lead and establish a single point of contact from diagnosis to death, for people with MND.

Clinical outcomes

• Timely referrals to agencies for equipment, adaptations, therapy, information and support

• MDT clinic moved, making this more accessible, as well as promoting sensitive introduction of hospice and palliative care services – improving access and advanced care planning

• Domiciliary visits offered for support, monitoring and hospital avoidance

• Discharge planning from hospital/hospice to reduce length of stay

• Local organisations working together, promotes psychological and emotional wellbeing for people with MND and their carers and encourages self-management

• Health and social care professionals benefited from MND specific education delivered collaboratively by statutory and charitable services

Comments received ‘The clinic is in such a lovely setting and much better for patients to attend than hospital’

‘It is a hugely important role. Having someone there to monitor the health and wellbeing of people, who otherwise can fall down a hole.’

Recommendations Identify opportunities for collaborative working with local champions, using the voice of people living with MND and their carers to identify poor quality services and drive up standards.