Michelle Price, Rhiannon Edwards
Our Bevan Commission project is focusing on improving the journey from symptoms suggestive of a neurological condition to diagnosis. It is an all Wales project focussing on the process of developing insight from primary care, specialist care and individuals affected by neurological conditions to develop a toolkit of resources to improve peoples’ experience of the journey.
Collaborating with the Wales Neurological Alliance1 (WNA), the project team created a Microsoft Form expression of interest (EOI) survey which was circulated across Wales by our stakeholders. We were specifically looking for those individuals and their carers/support networks who have had a diagnosis in the last 2 years and ideally from all areas of Wales.
The EOI was successful, with 18 individuals responding. The WNA supported individual conversations with those people and 15 were invited to take part. We were lucky to have people from all health boards and with at least 5 different diagnosis. Training and support for those wishing to participate was designed and delivered by the WNA Project Officer funded by NCIG. We have had monthly meetings since this.
These individuals were able to discuss their experiences and voice their frustrations of going through their journey to diagnosis, which supported our prioritisation process and lead the direction of further direction of travel in the primary care and specialist care workshops.
We are currently working on:
- A potential peer support IT enabled chat room function, freely and safely accessible for all those in Wales (through the CareCircle Platform2).
- The development of a resource for patients to support their initial healthcare contact with primary and specialist care to empower citizens to become partners in their care (this was driven by both patient and primary care engagement, with GP’s saying they were more inclined to learn about symptoms if patients challenged their responses).
- Using the words and videos of patients to develop GP training, to always bring patients into the centre of our education.
- Understanding the impact for individuals and the improvement of self-efficacy, when supporting co-production activities to support service redesign (using the Most Significant Change methodology3).
We have learnt that good co-production takes time, effort and resources to establish effective communication and inclusive ways of working for all involved. Once established it is invaluable to ensure that any service redesign or development will meet the needs of the population it is targeted for. It can help when navigating the competing interests of different services, professional groups or organisations. In the longer term this can save time and money as it ensures that services are fit for purpose and meet the needs of the people they are designed for.
Neurological Conditions Implementation Group (NCIG), supported by Powys Teaching Health Board (PTHB)
- Michelle Price, AHP lead for person centred rehabilitation at Health Education and Improvement Wales (email@example.com)
- Rhiannon Edwards, Neurological and Rare Diseases Implementation Groups Coordinator at NHS Collaborative (firstname.lastname@example.org)