Management of Motor Neurone Disease (MND) clients in their own homes

Purpose

A service for clients with MND was developed over the past 5 years within VCRS to allow this group of service users easy access to the multidisciplinary team (MDT) throughout the duration of their illness.

We are interested in improving the coordination, communication and care of patients with MND, from diagnosis to end of life, supported by NICE (2016) and MNDA guidelines. We developed individual speciality pathways to encourage prudent healthcare and bridged links in service provision to reduce individual therapy visits, duplication of referrals and assessments and ineffective communication within VCRS and the wider MDT.

The purpose of the service evaluation was to examine if the current service provision actually meets the needs of the service users and their families. We also wanted to identify areas which require further improvement.

We are keen to share this piece of work to demonstrate how existing practices can be altered in order to provide a more prudent and equitable service to this group of clients.

Approach

We chose to use a qualitative method using a locally devised questionnaire as we were unable to source any appropriate national resources. Advice was sought from experts within the UHB (Patient Experience Team) and the South Wales MND Network before the questionnaire was distributed.

The questionnaire was sent via post to all current clients with an established diagnosis of MND, as well as the relatives of some recently deceased patients. A covering letter was included outlining the purpose of the work, inviting the questionnaire to be completed and explaining that all responses would be completely confidential. There were two versions of the questionnaires and covering letters with slightly different wording for current clients compared to the version sent to bereaved relatives. A stamped, addressed envelope was included. Open and closed questions were used with simple tick boxes to indicate the response, and free text in order to collect opinions.

Once received, completed questionnaires were stored securely in line with the principles of The Data Protection Act (1998).  

Outcomes

Response rate 60% N=9 (out of 15). The feedback has been overwhelmingly positive and confirms that the current service is highly valued by clients and their families.

Cost and savings

The current system of working meets the needs of this client group far more than VCRS standard operating procedure for clients who do not have MND.

VCRS has identified that continuing to strengthen links with local Palliative Care services will further enhance the quality of care that we are able to offer to this group of clients.

Further work is required to objectively illustrate how costs and time have been saved using the current system of working.

Implications

The results of this work will be used to maintain an efficient, sustainable service to clients with MND living within the Vale of Glamorgan. It is hoped that the findings will be shared with the two Community Resource Teams in Cardiff in order to provide an equitable service to all patients across the UHB.

Fund acknowledgements

This work was not funded.

Additional notes

This work was presented at Physiotherapy UK 2018