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 – see below
2) Involvement in our quality improvement projects – visit our Patient and Carer Involvement in projects webpage for further details
Our Patient and Carer Group
Who attends?
The group meets in person up to five times per year. The current venue is in Stretford, Trafford, has parking and is near public transport.
The group has a maximum of 20 members, although only normally about 10 people attend each meeting. It includes people with lived experience of stroke or another neurological condition which may be patients themselves or those who have a caring role.
We aim to be as diverse as possible in hearing from:
- People with different medical conditions and impacts such as disability
- People with different experiences of accessing care – inside and outside the NHS
- People living in the boroughs of Greater Manchester and Eastern Cheshire
- People with different characteristics such as age, gender, ethnic background etc
Who leads the group?
We have two fantastic Chairs who lead the group and welcome new
members. Mike Carpenter (pictured right) joined as neurorehabilitation Chair in June 2022. He has been living with Multiple Sclerosis for over 10 years and is passionate about improving the care for patients with neurological conditions.
Nick Davies (pictured left) experienced a stroke in 2017 and continues his journey of recovery. He is keen to support development of services that meet the needs of stroke survivors and their families.
Mike and Nick aim to make our meetings as accessible as possible. This includes supporting those experiencing fatigue, who may have communication or mobility problems or other impacts that may affect their ability to participate fully.
What does the group do?
The content of the meetings varies each time. They usually start with an update from our Manager about what the network is working on. The network team may bring a piece of work for input or we could have a guest speaker working on a project they want help with. Members also suggest topics, or raise issues to explore further.
Recent agenda items have included:
- Driving – discussing and shaping the support available locally
- Social care after stroke – sharing experiences to help shape projects in Trafford and Manchester
- Spasticity – reviewing a patient information leaflet
Find out more and how to join
We may not always be looking for new members of the group as we cap numbers at around 20 people.
To find out more, 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
To help increase the group’s diversity, we would especially like to hear from:
- People from Rochdale, Oldham or Tameside
- People who had their stroke or were diagnosed with a neurological condition within the past five years
- Carers and family members supporting people affected
- Young people (under 40 years)
- People who can help us to better understand and support how services are experienced by different cultures, religions or ethnic backgrounds
Please note that the Patient and Carer Group is not a support group. If you are looking for help, you could search our Voluntary Services Directory.