What will the petition be about?

Content of the petition

Ideas from the Group on January 25th

Brain Injury should be treated as an independent disability not to come under mental health or physical disability. It should have it’s own category with allocated funding.

All Neurological impairment to come under the same banner ie. Regardless of how the impairment is caused stroke, virus, traumatic injury. Services should be open to all needs.

More Liaison between providers of services including statutory and voluntary sectors. Referring on to appropriate services.

Services to delivery what the clients request not what they choose to provide.

Funding should be allocated to the client for them to decide how this will be spent.

More facilities needed locally that don’t entail a lot of travel to go to meetings etc.

More information to patients in hospitals or care homes.

More local services transport and easier access.

More available funding forgotten at postcodes. People shouldn’t be generalised but seen as individuals, support should be offered to carers.

For all of Britain

Helpful numbers ie Headway

More information in the pack about illnesses that can affect people with brain injury.

January 08 Meeting

MSP Replies. Of the 9 people who had sent out letters 5 had already received replies. Mary had invited her MSP- Paul Martin to attend the meeting today. Of the letters received most said they thought that the information pack was a good idea and that they would ask the health minister to look into this.

Open Discussion. When Paul arrived he gave us some feedback about what we are doing and said that writing letters and then perhaps following up with a petition was a good way to go about trying to achieve our aims. He told us a bit about the way things would work- ie what might be the result of writing our letters. Paul said that in writing the petition it would be good to be specific and to make recommendations for the the way that things could be done.

Paul also said that he would be willing to help us with the petition by supporting it when it is being discussed and by trying to make sure that people were there to speak to the petition when it is being discussed. Paul also liked the idea of having an event during brain injury awareness week (30^th-6^th April) and would try to help us organise a room in Parliament to hold an event.

Susan brought up about the categories of Learning Difficulty, Physical Disability and Mental Health and the problem of people with brain injury not fitting into these- but lots of money is spent on these categories.

The point was raised that there may already be a lot of money spent on services for people with brain injury but if people don’t get the information about them then this causes problems with people not getting useful services at the right time.

Paul considered that providing the information on the internet would be one way of spreading the information in a relatively low cost way. Someone asked whether it would be expensive to have something printed up that would be distributed to everyone with a brain injury.

Members of the group shared their experiences of finding out about services that they could use. The point was raised that some people had to travel quite far to be able to get any services (because they have none in their local area). There was also the positive point made that there has been an increase in they type and number of services since some people had their injuries.

We agreed that we would want to hold an event if possible and that we would contact Paul at Parliament to see if it was possible to get a room within parliament to do something.

Group name:

There were a number of suggestions put up for group name and these were considered and voted on by the group.

These were:

Service User Forum for Acquired Brain Injury (SUFFABI)

Brain Injury Forum for Awareness (BIFFA)

Group for Awareness of Brain Injury (GABI)

Campaign for Awareness of Brain Injury (CABI)

Brain Injury Awareness Campaign (BrainIAC)

Nerve Centre.

In order the votes were:

BrainIAC – 7 votes

Group for Awareness of Brain Injury (GABI) – 2 votes

Brain Injury Forum for Awareness (BIFA)- 2 votes

Others: no votes

So the group will be called the Brain Injury Awareness Campaign or BrainIAC for short. A couple of people raised concerns about a TV programme called the same thing, but the group decided to go with what they had chosen.

Chairperson for the Group

At the petitions sub group we identified that we would need to have a chairperson for the group- even if this is someone in the interim period. At present the group does not have a constitution so it was agreed that we would chose a chairperson by majority. Helen Moran was nominated and the group agreed that she should be the chairperson.

Content of the Petition

James had to leave early but as he was going to be helping the group to work out their ideas on the petition he sent round a sheet for people to write their own ideas on for the petition. This sheet will follow the main part of the notes for the group.

Completing the petition

Simon had checked with the parliament information service that it was possible to have both a written and an online version of a petition. This means that there is the possibility of gathering signatures from people who were not using a computer- for example people who attend groups.

Promoting the petition

When it comes to launching the petition it will be good to have some personal stories that go along with this . The focus of the stories would relate to the petition. Roberta made the point that the people who speak should have a range of different causes of brain injury so that people know that it can be caused by more than just Head Injuries.

It would want to make the point that it affects people from different walks of life and in different circumstances.

Petitions Sub Group. This group looking specifically at the petition will meet on Friday 22^nd February at 1pm at Headway’s office.

Next Meeting:

One agenda Item will be carried over to the next meeting- that of funding for the group. As the group is separate from Headway and Momentum and other current brain injury groups it will need to get it’s own funding to help pay for things like room rental or admin etc.

Next Meeting Date: 29^th February at 1pm at Renfield St Stephen’s Church 260 Bath Street.

How could BrainIAC work?

Fourth Meeting: December 07

1. Notes from Last Meeting. These were read over. Robert spoke about the Chest Heart and Stroke Group he was involved with being interested in having a discharge pack provided. Robert agreed to feedback to them about our activities.

2. MSP letter. This was discussed by the whole group and also in smaller groups of two or three. We agreed to go ahead with this. Additional follow up steps were also considered. We need to have a plan of things to do if there is not a good response. We should have a follow up strategy planned- for what we do next.

Simon will send out the MSP letters for people to sign and send on to their MSP.

• We set up a sub group to draw up a petition to go to the Scottish parliament (this group is made up of Lorraine, David, Margaret, Debbie, James J, Helen and Simon).. It would be good to time a petition with Brain Injury Awareness week (at the end of March 2008).
• We should contact other groups- Chest, Heart and Stroke and Neurological Alliance to let them know we are working on this.
• James made the point that we should look at legislation that exists already to fit our requests into (for example there is legislation or guidance on Long Term Conditions).
• How would any pack be timed? Who would it be aimed at? It should be in simple easily understood English. Maybe the practical aspects need to be ironed out- but the principle of a discharge pack was thought to be good.

3. Other points raised:

Awareness- A short video about brain injury could be done.

We could do radio interviews

Action on the letter or petition could be highlighted in the media through press releases.

Letter to Members of the Scottish Parliament

Dear MSP,

I am writing to you as part of the Service User Forum for Brain Injury. This is a group of service users in Glasgow who wish to work together to improve services for people with acquired brain injury.

Brain Injury is a substantial problem in Scotland. The most up to date figures were produced in the year 2000 when it was found around 3500 people each year attend hospital in Glasgow after having suffered a brain injury. If this is extrapolated for the Scottish population over 12000 people each year are affected. After 5 years at least half of these are left with cognitive and emotional disabilities. It is a hidden disability because people look the same as anyone else.

In our initial meetings we have found that there was no standard information given out with regard to other services which we could benefit from (for example Momentum, Headway, Epilepsy Scotland or the Community Treatment Centre for Brain Injury). We feel that this is a big oversight which led to many people not getting the service they deserved or not knowing what services to look for. We believe that the reason for this is that Brain Injury has not been deemed “politically important”.

We want a pack of information available to all people with acquired brain injury on discharge from hospital. This pack would provide details of contacts and support networks available for people with ABI, their family and their carers. We would want to see this as a national rather than a local initiative- as the problems are similar across Scotland.

I would want you to consider what you could do to support this idea within Scotland, and how this could be implemented.

If you wish you could arrange to come to one of our meetings to discuss this and other of our issues of concern.

We look forward to reading your response,

Yours Sincerely,

Third Meeting November 07

1. Introductions- everyone introduced themselves and spoke about one service they had found helpful after hospital.

2. We went briefly over the note from the previous meeting.

3. The Next Step. In pairs we discussed what the next step leading on from what we have done already could be. We wrote ideas on post its and these have. We grouped these ideas together and these grouped ideas together have formed the main part of the notes for the meeting. We discussed the ideas as we laid them out.

Ideas of the service user forum which took place on Friday the 16th of November:

Make links

· Use different support groups

· Use different Hospitals

· Create Links with Hospitals/support groups

Visits to Hospital

· Get relatives of people in hospital to attend Headway

· Get involved with hospital visits

· Talk to social work and local authorities

· Speak to brain injured client before they leave hospital to let them know what help out there for them

· Arrange meetings with hospitals to ensure correct discharge procedure, so no one leaves hospital with nothing

· Motivate others

Hold an event

· Get a Public figure to host or person to sponsor

· To raise awareness, notify others of needs

· Invite those who can instigate change

· Have an event that public can attend

· Well publicised in Glasgow City Centre

Other ideas

· Keep a notebook or diary to record the problem arisen

· Complain

· Inform NHS

Lobby Government and Hospital

· Hold meetings with certain people /groups to back what the brain injured party has to say

· Lobby politicians such as councillors, mp’s etc

· Letters to local and national press

· Approach politicians who have the responsibility for health

· Approach the management of individual organisations

· Approach clinicians (working with people with ABI)

· Inform the government

· Contact MSP’s to help- with a proforma letter with the main points or list of priorities. Each person could give a personal story of how they were treated.

· Tell your GP and MP about the problems and ask for their professional help.

· Lobby different policy groups

· During ABI awareness Week have an ABI related petition delivered to Parliament (NB ABI Awareness week is 31^st March- 6^th April)

· Circulate copys of letters to List MSPs as well as you specific MSP- this encourages action.

· Use the councillors pigeon hole system to distribute information.

· Work out what MSP’s represent those people who attend the Service User Forum.

· Hold meetings with certain people or groups with information to back up what we have to say to them.

Written info for discharge

· Prepare booklets about head Injury, after care and what is available

· Ensure there is a policy to give future info on services etc for individuals and families and carers.

· Have a one stop shop

· A Data Base that NHS use between services

· People with ABI should be tracked and followed up- on Database

· When handing out packs- who should get them and at what stage? It would need to be timed to be useful (or given to the right person)

· Make a specific booklet that could be sent out to PDRU called “are you looking after someone coming out of hospital?”

Generate public awareness

· Have a service user website with a page of contacts within the glasgow area- to tell their story and who has helped them.

· Write a story for local newspapers e.g. the Herald and Evening Times about the matter

· Advertise in Hospital Magazines

· Have a PR Campaign

· Address the problem of confusion of the effects of Alcohol and Brain Injury

· Address the fact that people with epilepsy or ABI are not alcoholics or drug addicts

· Publicise like the SEE ME campaign to change public attitudes towards ABI.

· Do an advert

· Make a video with this group

· Email – newspapers, councillors, mps, tv, media

· Get your voice heard contact the right people

· Make people aware of brain injury

4. A sub group (David T, Alan A, Neill and Simon) was quickly set up to draft a letter to MSP’s with one of the ideas- about hospital discharge information packs. The reasoning behind this is to get the group to move towards action. Please see a copy of the draft letter attached.

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.

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.