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.
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
- help with terminology
- pre- and post-meeting briefings
- travel expenses
You can see papers and minutes of meetings that have been held on the Patient and Carer Forum page - specifically for this group.
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.
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).
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.
- November/December 2010 (issue 34) [97kb]
- September 2010 (issue 33) [80kb]
- August 2010 (issue 32) [65kb]
- July 2010 (issue 31) [57kb]
- June 2010 (issue 30) [56kb]
- May 2010 (issue 29) [68kb]
- April 2010 (issue 28) [72kb]
- March 2010 (issue 27) [59kb]
- February 2010 (issue 26) [84mb]
- January 2010 (issue 25) [67mb]
- November / December 2009 (issue 24) [670mb]
- October 2009 (issue 23) [58kb]
- September 2009 (issue 22) [104kb]
- August 2009 (issue 21) [123kb]
- July 2009 (issue 20) [111kb]
- June 2009 (issue 19) [69kb]
- May 2009 (issue 18) [212kb]
- April 2009 (issue 17) [97kb]
- March 2009 (issue 16) [64kb]
- February 2009 (issue 15) [90kb]
- January 2009 (issue 14) [69kb]
(older newsletters can be found in the archive folder in this section)