Lothian Stroke
Managed Clinical Network

Involving Patients and Carers

All managed clinical networks (MCNs) are built around meaningful patient involvement. From the start we were determined that our patients and carers have a real say in how Lothian stroke services are planned and organised.

Patient and Carer Forum

With the help of two experienced patient representatives and by asking for volunteers through leaflets in neurovascular clinics we set up a Patient and Carer Forum. The forum had its successful first meeting in May 2005. It exists for patients and carers to talk about issues important to them, and for the MCN to gain comments and experience from patients who have been throught the stroke service.

Progress

Several forum members are now actively involved in other network groups. Patient representatives and healthcare professionals have reacted positively. Our patients say their views are listened to, respected and acted upon.  

We know it can be daunting for the public to join a staff group so we provide

You can see papers and minutes of meetings that have been held on the Patient and Carer Forum page - specifically for this group.

Training events

 

User involvement

February 2010

There are a couple of opportunties at the moment for people who have had a stroke or TIA to participate in telephone research. Please select from these 2 options.

- Patients Direct - request for people who have had a stroke or TIA (from Dec 2007 to Jan 2009) to participate in telephone research study.

- HealthTalk online - for people who have had a TIA

Edinburgh Stroke Carers Support Group

The Edinburgh Stroke Carer Support Group is intended to be an informal support network for family, friends and carers of people who have had a stroke who are currently living in the community. It meets on the first Tuesday of every month (from Tuesday 2nd October 2007) 1.30 - 3.00 p.m. at VOCAL Carers Centre (8 Johnston Terrace - just off the Royal Mile, near the Hub).

It is hoped that the group will offer opportunities for people to share experiences as carers, learn new things and lend each other support in a relaxed atmosphere.

The group is led by NHS Lothian with collaboration from Chest Heart and Stroke Scotland and VOCAL carers’ centre. No referral is required - carers should feel free to turn up as able. Unfortunately, we do not have the space or facilities to accommodate people who have had a stroke themselves. The group is solely intended for carers. For more information about the group contact Marlyn Smith (ph. 537 9577) or Jacqueline Wood (ph. 537 9319).

The poster for this group can be seen here.

Further details about VOCAL can be seen on their website here.

Meeting news

next meetings:

As of June 2010 it was agreed that this support group will no longer meet on a monthly basis as it has for the passed three years.

Please see the newsletters below for the latest news.

 

 

 

Newsletters

(older newsletters can be found in the archive folder in this section)

Reports