Second Meeting October 07

1. First Exercise: What hospitals have you been in?

People completed this exercise by writing on “post its” all those hospitals they had been in with their brain injury.

The striking thing was the very wide range of different hospitals (in total 22 for the 11 people participating).

People spoke of good nursing care- but in some places not a good understanding of the effects of brain injury.

A lot of people had been in the Southern General as you would expect (all 11 of the participating people).

NB The point of the exercise is to focus people’s mind on the reason for the group- improvement in services and to initiate conversation around the relevant topics. It allows people to participate when they might not be keen on speaking to participate.

2. Second exercise: Priorities for the Group.

In this exercise we identified what the priorities of the group would be. We did this by using what has been suggested already and then adding other priorities. Then everyone was given six stickers to “vote” with. This allowed people to set their own priorites.

In order of most important- to least this is what people said:

To educate people on brain injury and raise awareness	15 votes	This was focussing on educating people who don’t know about brain injury, about it’s lifelong effects and could include the general public and employers
To make sure people have information about ABI and services available	14 votes	Focussing on people with ABI and Carers having information about services.
To help people with ABI in the early stages	13 votes	This generated a lot of debate see * below
A regular opportunity to meet and talk	12 votes	Any work the group does would come from meeting together and discussing things.

To ensure people who make decisions hear our voice.	9 votes	It was pointed out that this might be the same as the option below- just said in a different way
Set up our own events to bring more people together	8 votes	Events might be a way of educating others about ABI
Take Part in Local and National Consultation to improve services.	7 Votes	This is often the way that people are invited to participate in planning.
To write up reports of peoples shared experience	2 votes	The least voted for aim

* The discussion around this topic was that some of this work is done already in certain hospitals- the Southern General and the Glasgow Royal, but other hospitals don’t have this. Why?

There can be a delicate situation at this time- it is chaotic for people, and they might be thinking more of life and death rather than the longer term. People with a brain injury might not be able to take in the information in the early stages so it might be better to focus on carers and family (if there are any).

Should there be a discharge pack with information contained in it? Is there already?

Should the information be detailed or general?

Should information about Brain Injury support services go on the Head Injury Card people are issued with?

How early are we talking about?

3. Other Points raised:

We could be inviting people who don’t know about brain injury along to find out more about things.

We need to identify who the decision makers are to be able to invite them to events.

The effects of brain injury can look like the effect of alcohol and drugs- in initial diagnosis why are people not breathalysed? Top eliminate this where it can be.

There should be booklets and information about other help when people leave hospitals. Not knowing what is available is a big problem.

Maybe there could be questionnaires or research on the brain injured person’s hospital experience.

People should be able to access information on other help eg for alcohol or drugs after ABI.

The groups could have two benefits- 1. to help yourself and discuss your experience- but also to make things better for the next group of people who come along.