Motor Neurone Disease patients share their experiences to drive improvements in care

A group of Swindon patients with Motor Neurone Disease (MND) have joined forces with clinicians from the Trust, Prospect Hospice and the Motor Neurone Disease Association (MNDA) to improve the care and the treatment of patients and the support available to families.

For the first time, local patients, relatives and carers came together for a unique engagement session to share their experiences of the condition and ideas for improving the care and treatment of patients with MND, in particular the management of choking. 

For people living with MND, choking can be common due to the progressive weakening of the muscles involved in swallowing and breathing and is one of the most distressing events for patients, as well as for carers, relatives and health professionals.

The session was organised by Dr Sara Mazzucco, in partnership with colleagues from across the Trust with specialist knowledge of MND including the Speech and Language Therapy Team who play a vital role in supporting patients with MND.  

Trust colleagues were joined by specialists from the MNDA and Prospect Hospice, highlighting the close partnership the Trust has with both organisations.

This integrated approach to care, with different teams and organisations working together, helps to provide patients and their families and carers with a better experience.

For this first engagement session, the team made a big effort to support all attendees, with one patient using a gaze-operated communication aid.

In a short video, Craig Dodson, a patient with MND who is helping to improve the care and support available to patients, shares his experience, and Dr Sara Mazzucco, Consultant Neurologist, talks about the importance of close partnership working between the Prospect Hospice, our hospital and community teams.

Watch the video below: 

Dr Sara Mazzucco, Consultant Neurologist and MND Lead for the Trust said:

“The success of the engagement session has shown that involving patients with MND is not only possible, but also incredibly beneficial for research and improving care, with patients, carers and relatives sharing lots of valuable information in a relatively short time."