What is patient and carer involvement?
Meaningful patient and carer involvement means sharing decisions with people with lived experience.
Patient and carer involvement is a key element of our vision and strategy. We aim to ensure people with lived experience of stroke and neurological conditions are given opportunities to influence improvements in care provided across Greater Manchester.
We have two approaches to involvement:
1) Our Patient and Carer Group – visit our Patient and Carer Group webpages for further details and how to join
2) Involvement in our quality improvement projects – see below
You can find out more about the network’s activities in the plain English versions of our regular newsletters.
How to get involved in our projects
We supports a wide programme of quality improvement projects across Greater Manchester. You can see some examples, including a full list of current projects and past impacts, on Our Work webpages.
Not all of our projects include patient and carer involvement. However, we have some that are actively seeking support from those with lived experience.
The type of involvement will vary depending on the project. It may include attending a meeting with others, or providing input via email or over the phone. The method will be tailored to the needs of the individual to ensure everyone can be included, especially those with communication or cognitive difficulties.
Current opportunities
Facial rehabilitation
Stroke and neurological conditions can cause facial weakness. The weakness can impact speech, swallowing, and how you look. Information and rehabilitation available for people with facial weakness varies across Greater Manchester.
We are reviewing what support is currently being offered, and if there is anything we can do to improve care.
We would like to hear from people who have experience of facial weakness. We want to know more about support and care you received as well as help in deciding what could be done better.
National Institute for Health Research HealthTech Research Centre – Brain Injury
The centre runs a research panel for those with lived experience of brain or spinal injury. This includes patient and also their carers or family members and you must be over 18 years old. They are looking for people to help them carry out research and develop new technologies for diagnosis, treatment and rehabilitation in brain injury.
You can find out more about taking part in this flyer.
Research – Continence following a stroke
The Stroke Research Team at the University of Lancashire are working on a project to improve care for people with bladder problems after stroke
They are looking for people whose experience and feedback can help them shape the research for the best outcome.
This invite offers more information on how you can help or find out more and who to contact.
Research Survey Invitation- Powered Walking Exoskeletons for the Rehabilitation of Stroke Survivors
University of Nottingham are conducting a study on the use and acceptability of powered walking exoskeletons in stroke rehabilitation across the UK.
Powered walking exoskeletons are wearable, battery-powered robotic devices that support walking and allow stroke survivors to move freely—unlike treadmill-based or fixed systems.
We are inviting two groups to take part in this short online survey:
• Stroke survivors, regardless of whether they have used such a device
• Healthcare professionals who currently work, or have previously worked, in stroke rehabilitation in the UK No prior experience with powered walking exoskeletons is required — we welcome all perspectives.
The survey takes approximately 7–12 minutes to complete, and all responses are anonymous. Participants will also have the option to enter a voucher prize draw.
For more information, please see the invitation poster
Find out more and how to get involved
To find out more about our projects and also how to get involved, please contact our Administrator Debbie on Debbie.O’Halloran@nca.nhs.uk or by phoning on 07702 629145. She works 9-5pm Wednesdays to Fridays and will reply as soon as she can.
To be involved, you should:
- Have lived experience of a stroke or another neurological condition. This could either be as a patient, or as somebody affected such as a carer or relative
- Live in a Greater Manchester borough or in Eastern Cheshire
- Be willing to share your experiences and views to help shape services