The Movement Disorders Health Integration Team ran the country’s first Duodopa support group meeting this month.
Duodopa is an advanced treatment for Parkinson’s that involves pumping a gel through a tube surgically inserted into the intestine. It’s suitable for a small number of patients, for whom other treatments haven’t been successful.
Patients who are on Duodopa have advanced Parkinson's and complex needs. This therapy can greatly improve their Parkinson's symptom control, but there is little peer support from others as it isn't a common treatment.
The Duodopa service at North Bristol NHS Trust was commissioned by NHS England just over two years ago. There are 14 patients living in the South West, spanning from Cornwall to Gloucester, using the treatment. There are increasing numbers of patients being referred to be assessed for their suitability for the treatment.
The first support group started with a buffet lunch provided by Abbvie, the company which provides the treatment, so patients and carers had the opportunity to make connections. At this meeting there were extremely informative presentations from Sally Darby, dietician, regarding diet in Parkinson's and dietary issues regarding the tube, and from Kevin Carter, our Parkinson’s UK Local Parkinson's Advisor regarding his role.
Attendees then separated into two groups. Lucy Mooney (Co-Director, MOVE HIT) facilitated a patient group and Ramesh Chauhan, the Healthcare at Home Duodopa Nurse, facilitated a carers group. This provided a forum for patients and carers to talk openly about their experiences and to share any issues or concerns they have.
The HIT will follow the format of presentations from professionals and then peer support discussions for future meetings. Meetings will produce a ‘top tips about Duodopa’ document, by patients and carers, for patients and carers.
Lucy Mooney, Co-Director of MOVE HIT said:
“The feedback from everyone who attended was extremely positive. These patients have complex needs and into that mix we are adding a new treatment. It’s really important we provide every opportunity for them to learn from professionals, and perhaps even more usefully, from each other. We will continue to evaluate the success of these meetings, and hope to establish a similar patient group for patients with Deep Brain Stimulation in the near future.”