First Meeting- Sept 07

Service User Forum Notes from First Open Meeting 14.9.07

Introduction

We did an exercise where each person present was asked to write on post its one good thing in relation to services and one bad thing. We then put these up on the wall and discussed them.

The list was:

Good Things- Positives	Bad Things- Negatives
Good Support was offered in the short and Long term for carers (by Headway Ayr)	Services across Scotland are very patchy- nothing is the same throughout
Being able to meet other people who have had a brain injury in a group	Accessibility- the awareness of what services are around is very poor. How do you find out about what is around?
Services have developed over time- in the last ten years.	Brain Injury services are very disjointed. There can be empire building. Sometimes the interaction between services can be negative
Surgery- if I hadn’t had it I wouldn’t be here	Murdostoun Castle saw me as a pound sign. It didn’t take care of my non- brain injury needs
Staff in brain injury services are generally well intentioned, more experienced and aim to help	Travel and Transport to services can be very bad if you are in a wheelchair. I felt I was left to sit and watch TV
Having company, conversation, a place to go, a timetable of events, walks, meals quizzes (at Headway)	There can be a long distance to travel for services, if there is bad weather it puts you off. Sometimes there is a lack of different things to do. (Headway)
Getting treated quickly in accident and emergency- and help from my wife	After I got out of hospital there was no info on clubs like Headway
Being able to meet people, build my self esteem, building my independence, and learning	There are not enough services. If they don’t happen at the right time you don’t respond to them. You can be impatient to get better. Routine.
More services are around now than there were 11 years ago

The people who did this exercise were at arrange of different times after their injury, (from 13 years to 3 years), but the experiences discussed seemed not to have changed much. People talk about a good experience in the early stages, then a lack of aftercare- feeling isolated and not aware of services (lack of information) and finding out about things through a number of different routes. There was alosn things said about getting the information and services at the right time- sometimes people just aren’t ready to accept they have a difficulty they need help with, sometimes they forget info given to them. People had comments on particular aspects of services- eg. not being enough variety. Some people who travel in to the city to use services spoke about transport problems and the lack of services in their own areas. Very often people think that the problems they are experiencing are ones that are unique to them i.e. their own personal difficulties. It is only when people meet that they can see that there might be common things happening to different people.

There then followed a discussion on these themes. To help with clarity I have used the agenda we were going to follow and put in some things which were discussed.

Background and Purpose of the Group.

Helen Moran had been involved in the steering group meetings leading up to this and said a bit about what the group is for: It is for people who have been through the experience because they aren’t the last ones who are going to have a brain injury and its to use our experience to try and make things better for others. The group might also have a function in raising awareness about brain injury so more people know about it, and know what will help. There have been three steering group meetings where we aimed to get people who were involved with other services along so that the group could be bigger than Headway and that it would represent wider views. We had written two letters out to organisations about this. The steering group meetings had been attended by representatives from Headway, Momentum, The Through Care Project at Glasgow Royal, and Epilepsy Connections. There was cross over in people who had used more than one service.

Principles of the Group

There was a bit of discussion over whether this would be a user only group or a user led group. The people present felt that carers might had an important input to make because they have been through the experience in a parallel way and remember better some of the difficulties found early on. This might help make a stronger case. We did want to try and involve as many people as possible in the group- from different places/ services.

Longer Term Goals

The idea of an event was discussed- something which people with brain injury and workers with services could come to find out more about service users opinions and ways which things could be improved. David Stewart had an idea about the location.

The issue of indifference to the group was raised- who should be coming along- who has responded? A longer term goal would be to work on this also- to raise interest and awareness about the group. An event might go someway towards this.

Next Meeting

Those present agreed that there did seem a good reason to have a next meeting and that we would try to arrange one in the not to distant future. James had said that there was a possibility of arranging this at Momentum to see if other people might be interested in coming along.