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
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
Longer term support for neurological conditions
Previously, a ‘Life After Stroke’ model of care was published by NHS England. It outlined the ideal long-term support for patients and their families after a stroke. We have been looking at how to best implement the model across Greater Manchester.
Unfortunately, there isn’t a similar model of care for other neurological conditions. We have a project to help design a new model using Life After Stroke as a starting point . These ideas are currently being tested in Bolton.
We would like to hear from people with neurological conditions (other than stroke) who have experienced services both in Bolton and other Greater Manchester boroughs.
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.
Exercise
Exercise is important for everyone, including as a part of long-term stroke and neurorehabilitation care.
We would like to hear from with people with lived experience of stroke or a neurological condition. This will help us understand the different experiences people have around exercise, and what can be done to make it more accessible.
Sex and relationships
Patients, carers and clinicians told us that more training was needed for professionals to help them better discuss sex, intimacy and relationships.
In the summer of 2024, we supported work involving patients and carers to deliver a training webinar. We are now working to produce face to face training as a follow up in 2025.
We would like patients and carers to be involved in planning of this part of the training too, so get in touch if interested.
Multiple Sclerosis (MS) service development
During 2024, we brought patients and carers, local clinical teams and MS charities together to look at ways to improve services.
We will be holding further meetings in 2025 to help shape the overall project, with smaller meetings focused on specific areas. We need people affected by MS to help us on different aspects of the project.
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