BrainIAC visit to Scottish Parliament’s Public Petitions Committee (PPC) – 9th September 2008

16 members of BrainIAC (including 2 of our witnesses) and a few other friends took the train or bus across to Edinburgh Waverley where most of us had arranged to meet – we made our way to the Parliament Building at the east end of Canongate, had something from the café for lunch, collected our passes/tickets for the hearing, and were in good time for the PPC session that started in Committee Room 2 at 2pm. There were 2 petitions the PPC had to deal with before evidence was heard on our BrainIAC petition – but this gave us the chance to see how the Committee operates.

HelenM, the petitioner, and as someone who has an ABI, started off our BrainIAC evidence very well with her brief (3min) statement, summarising our petition and our case; then MSP Paul Martin, who has previously lent his support to BrainIAC, gave his perspective, and thereafter there was a Question & Answer session that involved both our other witnesses:

• Christine Flannery (not a BrainIAC member) – but as she is involved with the MCN in recording provision of brain injury services in the 14 Scottish Health Board areas, she was well able to provide facts and figures, and respond to queries the PPC asked;


• Mark Ziervogel – one of our BrainIAC Carers who also expertly explained his perspective of problems with services including the postcode lottery and age-related issues.
  

You can watch the Committee proceedings on 9th September on Video by CLICKING HERE (The BrainIAC section starts about 1hr 13mins into, and lasts for about 25mins of, the 3-hr session!)

Summary of Committee’s Opinion and Proposed Actions:

• The PPC seemed impressed by the fact that there is a need for action on this issue, and they felt they could do something about it;


• They would write to the Health Minister, Nicola Sturgeon, and ask her to respond;


• They would seek more info from Directors of Social Work, Headway, Momentum, Health Boards, Princess Royal Trust for Carers, Scottish Acquired Brain Injury Managed Clinical Network, Scottish Head Injury Forum, and other interested parties.

Click LINK HERE to see the Committee's Summary of its intended actions.

Conclusion

With our petition having got off to a very encouraging start, you can appreciate that our group (most of whom appear in the pics) were feeling very positive as we made our ways back to the bus and train.

Well done! - specially to Helen, Christine, & Mark,

& also everyone who came along to support them and the cause.

But we can’t afford to relax -

we will have to maintain the pressure that we have built up over the last several months.

Alan Agar (Secretary) 16th September 2008

Meeting of BrainIAC - Fri 29th August 2008 1pm at Headway Glasgow Offices, Renfield Centre, Bath Street, Glasgow

Introduction
The meeting had 8 attending for business dominated by preparations for the visit of our three BrainIAC witnesses before the Scottish Parliament’s Public Petitions Committee on Tues 9th September , and the return visit of Christine Flannery (Managed Clinical Network for Brain Injury) to report on the progress of her work in getting standards agreed for “Traumatic Brain Injury in Adults”.

Election of Vice-Chairperson
Following on from the July meeting, when DavidT was not present, the meeting moved to the election of a Vice-Chairperson for BrainIAC as specified in the Constitution. Only this position remained to be filled, and individuals proposed(p) and seconded(s) other member(s) of the group as follows:

• Vice-Chairperson: David Thomson with HelenM(p) & AlanA(s)
  

and David Thomson was considered elected.

Funding - bank account
The BrainIAC bank account (with attributes as detailed at the previous meeting) had indeed been applied for and was now set up since that last meeting. Noted that the Treasurer, NeillS, could now progress the paying-in of the sum of £274= (in cash & cheques).
SamC had brought along application forms for small grants – for the Secretary to peruse, with a view to filing an application in the not-too-distant future.

Public Petition to the Scottish Parliament - Update
It was reported that a batch of A4 sheets containing approaching 700 signatures had been despatched to the Scottish Parliament by Recorded Delivery immediately before the closure (on 12th August) of the ‘collecting signatures’ phase of the petition. These were to be added to the 201 signatures collected online – an overall total of 900 signatures is recorded as having been received on the Public Petitions website.
(http://www.scottish.parliament.uk/business/petitions/docs/PE1179.htm )

With regard to the appearance before the Public Petitions Committee (PPC) of HelenM and two others, as witnesses on Tuesday 9th September -
A list with some 11 names of parties wishing to attend the PPC as observers was raised, to be notified to Parliament for booked seats in the observers’ section of seating by AlanA;
HelenM elaborated on the roles of our three witnesses who would be seen by the PPC:

HelenM – as someone who has an ABI– would be making a brief (3 mins) statement, summarising our petition and our case, to open proceedings;
Christine Flannery – as she is involved in recording provision of brain injury services in the 14 Scottish Health Board areas, she is in a good position to provide facts and figures, and respond to technical/factual queries the PPC may ask;
Mark Ziervogel – a BrainIAC Carer who would be well able to field questions from the perspective of problems with services including council boundary crossing and age-related issues.

HelenM then read out the current draft of her intended statement, after which there was a general discussion on its content; it was agreed that given the very limited time slot given, almost all the points included seemed to merit inclusion. However, there were a few other issues pointed out, including:

• Retired neurosurgeon Sam Galbraith had tried to designate ABI as a separate category for Community Care back around 1997/8 when he was the Minister responsible for Health in the Scottish Office, but nothing had apparently been followed through on this. (see http://www.scotland.gov.uk:80/library/swsg/index-f/c206.htm )
• It was also considered important to finish off her statement with a strong summary of what BrainIAC essentially wants.

HelenM mentioned that there was a possibility of setting up a public stall at the Scottish Parliament Building for a short period in 2009 to highlight ABI (details unknown for the moment).

Managed Clinical Network for Brain Injury - Update
Chris Flannery, the manager of the MCN, spoke on her group’s draft standards that had been published recently. Copies of this draft standards document were passed out. There was considerable discussion among those present. Essentially the document is out for consultation until 31st October; thereafter her group would do any revisions, and intend to publish the Standards in final form around the start of 2009. She encouraged BrainIAC and other interested groups to submit comments on the draft.

Other business
SimonG will pass over the names/addresses of individuals who have occasionally attended BrainIAC meetings; AlanA would circulate everyone, asking if they were still interested in continuing contact with BrainIAC.

HelenM intimated that she would be doing a sponsored abseil down the Forth Rail Bridge on Sunday 5th October – in aid of Momentum and BrainIAC funds. HelenM will be doing this challenge down onto the beach at South Queensferry – her start time is 11.15am. BrainIAC members and other friends are encouraged to lend her their support by

• sponsoring her beforehand - email HelenM here,
• and also on the day - please make sure you get there on time.
  

Date of Next Meeting: Agreed as Fri 3rd October at 1pm in Momentum’s offices in the Savoy Tower, Glasgow.

Alan Agar (Secretary) 15th September 2008

Inaugural Meeting of BrainIAC - Fri 25th July 2008 1pm at Momentum’s Offices (Savoy Tower, Glasgow)

Introduction
Although the inaugural meeting, relatively quiet in terms of attendance with only 7 attending, nevertheless very busy agenda-wise.

Constitution
Following on from the June meeting AlanA had updated the constitution document to reflect all the detailed changes that had been agreed at that meeting. SamC confirmed that she had perused the final document as tabled and it was in fact in order with the last meeting’s intentions; the group was happy to accept this. The meeting then proceeded to the formal adoption of the BrainIAC Constitution; this was proposed by NeillS and seconded by HelenM. As there were no objections to this, the Constitution was considered to have been adopted.



Election of Office-bearers
Having just adopted a Constitution, the meeting moved to the election of officers for BrainIAC as specified in the Constitution. Four positions were due to be filled, and individuals proposed(p) and seconded(s) other members of the group as follows:

Chairperson: Helen Moran with SimonG(p) & AlanA(s)
Secretary: Alan Agar with SamC(p) & NeillS(s)
Treasurer: Neill Sloan with HelenM(p) & AlanA(s)

These individuals above were considered appointed. The position of Vice-Chairperson was not dealt with at this meeting as DavidT, who had previously intimated his agreement to serve, could not be at the meeting. His appointment to this position would be dealt with at the next meeting.



Funding - bank account
Having looked into the issue of there being some restriction or other on the sort of items on which subscription fee income may be spent, both SamC and NeillS confirmed that no such restriction applied, so we would be free to use money collected through subscription for anything permitted in the constitution.
It was noted that we had already amassed some £274 in cheques and cash including a contribution from HelenM’s children.
With reference to the bank account to be opened with the RBS (in Sauchiehall Street, but actually the Charing Cross Branch), HelenM had picked up an application form to open a Treasurer’s account. It was agreed that our Account Name should be “Brain Injury Awareness Campaign (BrainIAC)”, also that HelenM (Chair), NeillS (Treasurer) and AlanA (Secretary) should be the three signatories, two of which would be required when writing a cheque. NeillS and AlanA would progress this matter by filling in the application and visiting the branch to see exactly what documentation/personal identity verification was needed.

Petition to the Scottish Parliament - Update
It was reported that there were currently 137 signatures online (151 at the time of compiling these notes), with something over 400 collected on paper. The possibility of running another Street Stall before the petition closes (on 12th August) was aired – after some discussion it was decided to have the Street Stall in the ‘square’ outside the Renfield Centre in Bath Street over lunchtime (nominally 12-2pm) on Wednesday 30th July.
[ P.S.– HelenM, NeillS, DebbieY, LorraineK, & AlanA subsequently had a very productive signature-collecting session on Wed 30th outside the Renfield Centre between 12.15 – 2.00pm; however passers-by became very few and far between immediately afterwards. Having been so successful, it was decided to repeat this Street Stall:
- on Wed 6th August, same time 12 – 2pm outside the Renfield Centre
- we would welcome any helpers who could give us a hand for an hour or so:
contact HelenM or AlanA on our email address: - serviceuserforum@gmail.com ]

With the Petition to be submitted by 12th August, HelenM had received a letter from Parliament’s Public Petitions Committee (PPC) inviting her and two other representatives to appear in front of the Committee on Tuesday 9th September at 2pm in Edinburgh. With this in mind, it was decided that a Sub-group should meet on Wed 20th August 1.15pm in the Headway Offices to explore/compile information that should be available to those appearing before the PPC.

It was noted that we would like to see as many as possible followers of BrainIAC come along to Edinburgh on 9th September to show their support for the Petition -

PLEASE COME ALONG !

Further details will appear on this website closer to the time.

Managed Clinical Network for Brain Injury - Update

The meeting was pleased to hear that HelenM had been asked to join the committee involved as a Patients’ Representative, and that she had agreed to this.

Chris Flannery, the chair of the MCN, would be attending our next meeting to explain and gather comment on her Committee’s draft standards that have been produced recently.



There being no other business, the meeting closed at approximately 2.15pm.


Date of Next Meeting: Agreed as Fri 29th August at 1pm in the Headway offices in the Renfield Centre.


Alan Agar (Secretary, BrainIAC) 3rd August 2008

Meeting on Fri 27th June 2008 1pm at the Renfield Centre

Introductions

The total of 12 attending (mostly brain injured and/or carer) individuals including 3 ‘professional’ attendees introduced themselves ‘round the table. The main item for discussion at the meeting was the Constitution, to be followed by a range of items each requiring much less time.

Constitution

After very brief introductions Helen, as Chairperson, handed over to Alan to deal with the Constitution, the May Draft of which members had taken away last time to read/study in their our time, to return to comment on it at this meeting. Alan led the discussion on the draft where the document was read through slowly paragraph-by-paragraph, and everyone had the opportunity to raise any points about which they were unhappy. There was quite some discussion that arose on a number of points – particularly those clauses that appeared under the sections headings: AIMS , OBJECTIVES, and MEMBERSHIP. As it was envisaged that our Constitution was effectively being finalised at this meeting, it was important that individuals were entirely happy with the details being decided on there and then.

Throughout the discussion which lasted for approximately an hour, agreement was reached for each point by talking the matter through without the need to take a vote of members to decide on issues that were raised. Practically all the modifications that were agreed involved changes to the detailed wording rather than the inclusion of extra, or the deletion of existing, clause provision.

Following this detailed consideration of the previously tabled Draft, it was decided that Alan would be left to update the document to its final form; then, at the start of the next group meeting (what will be the Inaugural Meeting of BrainIAC) the Constitution document will be formally adopted without further discussion.

Funding - level of subscription

There was some discussion on an appropriate level of subscription for members; it was suggested that something like £5 per annum could well be suitable. An alternative approach to funding was also suggested – that of asking for donations instead of having a specific subscription fee; it was also suggested that our group may attract more financial income from the former. This would be the case especially if there was some restriction on the sort of items subscription fee income can be spent. Sam Coyne is to clarify the situation concerning restrictions or otherwise for the next meeting.

Funding - bank account

While a group bank account could not be opened without the group’s Constitution being formally adopted and signed off, it seemed sensible to get organised for opening a suitable account so that it may be opened asap after Constitution adoption and the election of Office-bearer at our next meeting. It was agreed appropriate to open an account with the Royal Bank of Scotland (Sauchiehall Street Branch); Helen agreed to pick up a set of application forms for same in the near future.

Other business

Update on Petition to the Scottish Parliament

Helen reported that the group had collected approximately 500 signatures (something just over 100 on the Parliament website, with approximately 400 signatures collected on paper). She again noted that arrangements were in hand to submit the petition to the Public Petitions Committee at the Parliament, and Paul Martin MSP would be lending his support.

DVD of “BrainIAC – The Movie”

Helen had brought along lots of copies of “BrainIAC – The Movie” on DVD; members were very welcome to help themselves to a copy of this excellent animated slideshow of our recent street stall petition activities in Buchanan Street and Byres Road, Glasgow; David Thomson had used his multi-media talents to put this presentation together.

NHS Diamond Anniversary Celebration Show

Helen also had a supply of invitations for the Anniversary Event taking place at Glasgow Royal Concert Hall on Sat. 5^th July; again, everyone attending the meeting was welcome to help his/her-self to the number of tickets they thought they could use.

Managed Clinical Network for Acquired Brain Injury - Chris Flannery
Helen announced that she intended inviting Chris Flannery to our next meeting, so that she could update us on the progress of her work to put in place draft standards for Acquired Brain Injury. When she addressed us at our April meeting, she said she was interested to hear some of our personal stories, so this is another point to be raised with her.

Election of Office-bearers and Committee at next meeting
Sam Coyne noted that as the election of Office-bearers and Committee was intended to take place next time, members should give some thought before then as to whether they might wish to stand, and/or who they thought suitable to fill one or more positions.

There being no other business, the meeting closed at approximately 2.30pm.

Date of Next Meeting: Agreed as Fri 25^th July at 1pm , with the venue subsequently confirmed as Momentum’s offices in the Savoy Tower.

“What are the Key Things that should be Available when someone first has a Brain Injury?”

Member Responses to the Question: “What are the Key Things that should be Available when someone first has a Brain Injury?”

When the group was invited to jot down their individual answers on a Post-It slip, these were mounted on the wall screen later in the meeting and read out. An analysis of the 12 answers returned showed that there were

8 answers – asking (in one form or another) for more info to be available on the common effects of a brain injury, and follow-up contacts for further services and/or support organisations;

2 answers – requesting physiotherapy only;

2 answers – requesting a range of improved local care services and help.

Notes from Meeting of May 30th 2008

Introductions

Helen, as Chairperson, started off the meeting with a very brief summary of the items to be discussed in the group; then the group was asked to go around the table and remind members of their names/introduce themselves, and also to mention very briefly the date and circumstance of their brain injury.

There were 11 (brain injured and/or carer) individuals present along with 3 ‘professional’ attendees.

Constitution Development

Alan, who had been involved in a sub-group with Lorraine, Neill, Simon and Sam Coyne, spoke to this item; he started by reminding the meeting as to the reasons for having a constitution:

· Purpose is to put our BrainIAC group on an official basis, compared with the ad-hoc basis we have been operating so far;

· Developing one is a good exercise – we need to think clearly as to what our group is for, what are we trying to do – expressed in our aims & objectives; how will we operate, and be organised;

· The expectation of being able to influence NHS and other service-providers will be much improved by our being a properly established and recognised group;

· A condition of being able to attract funding (so, e.g. we could really do with some independence from other brain injury groups that currently support us - then we could afford to pay for meeting rooms in future, and not have to depend on Headway’s and Momentum’s charity) from granting bodies is that applicant groups must have a constitution and perhaps also be a registered Charity, etc.

He reported that Lorraine, Neill, Simon, Sam Coyne and he had met several times, and had developed the 2^nd draft constitution document (as at May 2008) which was tabled at the meeting; the BrainIAC group has to consider the current draft and make appropriate modifications to it so that our group as a whole can very soon agree to adopt it. To achieve this, group members should take away the draft to read/study, and come back to the next meeting with their proposals for modifications.

There was a short period of discussion on a few individual draft constitution clauses, and a few at the meeting made some useful points concerning their reservations/problems with them; in terms of progressing the whole matter, it was later decided that modifications proposed by those present should be brought to the next meeting where they would be considered. Helen will write to members not present, enclosing the tabled draft constitution, saying what is planned for the process, and inviting them to attend the very important meeting where final agreed modifications to the constitution would be incorporated. It was decided that this next meeting would be at 1pm on Fri 27^th June 2008 in the Renfield Centre.

Funding

Helen stressed that the issue of funding was becoming more pressing as there had been various costs (e.g. photocopying) associated with some BrainIAC events she had attended recently. She felt that the group had to get a bank account opened and operating as soon as possible; also, to do this we would need to elect Office-bearers – this to be done as soon as possible.

Sam Coyne pointed out that the constitution should really be agreed and adopted by the group first, as this would define the powers and responsibilities of the various Office-bearers who could then be properly elected. To open an account for a voluntary group like ourselves, banks may be looking for the group’s constitution.

It was agreed that the matter of the constitution will be sorted out first.

Helen reported to the group that she had received a £50 cheque donation to the group from a donor who wished to remain anonymous.

Other business

Helen reported on

· the events she had attended in the last few weeks – the Ability Festival on Friday 16^th May , an all-day event at the Raddison SAS Hotel, Argyle Street; a BrainIAC Street Stall on Saturday 24^th May 10-2pm at The Donald Dewar Statue, Buchanan Street

· the future event planned at the Scottish Parliament

· the BrainIAC Street Stall which will be set up outside Hillhead Library in Byres Road on Sat 7^th June; it would need to be ‘manned’ from 10am – 2pm , and any help with this would be appreciated. Alan said he would come along to do whatever is needed.

There being no other matters to be discussed, the meeting closed at 2.45pm.

Date of Next Meeting: Agreed as Fri 27^th June at 1pm in Renfield Centre.

Upcoming events

BrainIAC is going to be busy over the next few weeks. We have started our petition asking for the Scottish Parliament to set up a separate category of Acquired Brain Injury for Health and Community Care Services. There will be a few opportunities to sign up to this. We will let people know once it goes online but it will also be available as a paper version. Meet us on:

• Friday 16th May 9-4pm: At the Ability Festival: Raddison SAS Hotel, Argyle Street
• Saturday 24th May 10-2pm: At The Donald Dewar Statue, Buchanan Street (Street Stall)
• Friday 30th May at 1pm At the next BrainIAC meeting (Renfield Centre)
• Saturday 7th June: Byres Road Library (Street Stall) between 10-2pm

Volunteers will be welcome for the street stalls- contact Helen via email to do this.

And the next BrainIAC meeting is on Friday 30th May at the Renfield St Stephens Church Centre, 260 Bath Street Glasgow G2 4JP at 1pm. All interested people welcome.

Next Meeting

BRAIN I.A.C.

BRAIN INJURY AWARENESS CAMPAIGN

The service user forum for people with brain injury

Make your experience heard

Next Meeting:

Friday 25^th April

12 Noon at Momentum

Speaker:

Chris Flannery

Managed Clinical Network for Acquired Brain Injury

Come along and find out about what the Managed Clinical Network is doing about:
Mapping Services

Information for people with ABI and Carers

Quality Standards

And put you own questions.

Meeting 28th March 2008

Introductions

Helen did a brief introduction on the group and reminded everyone of the purpose.

Notes of the Last Meeting

These were read through. Neill asked about one point- Services which can support people from Ethnic Minorities. There was some discussion about this point. Headway had attended a Glasgow Anti- Racist Alliance exhibition which was poorly attended, but the point was made that this still raise the profile of brain injury- even if it is among other services who might refer people later on.

MSP Letter.

David reported back from the sub group and read out the letter which was to reply to Nicola Sturgeon’s letter. People made various points as we went through this. Including: emphasising the differences of ABI and other conditions –as a point to support the call for a separate community care category. There was also debate over the meaning of some terms used. Another sub group will go away and work on this letter- to be made up of David, Alan, Simon and Lorraine. We aim to have the letter sent off by the next meeting.

Constitution and Funding.

Sam Coyne spoke a bit about the importance of a constitution and also about Charitable Status. This was discussed for a while. The benefits of having a constitution are that it would say what the group is for, what it aims to achieve and how it will go about this. It may also help access funding. The group would need some funding to get some independence from other brain injury groups which currently support it. The conclusion was that as the group is in the early stages it would be fine to have a constituted community group and to think about charitable status if the group grows. A sub group of Alan Lorraine Neill and Sam will work on the sub group for a constitution.

Petitions

The next step for this is to think about a launch. Previously Paul Martin MSP had suggested that he could organise some time at the Scottish parliament to launch this. The group agreed to the suggestion that we should go ahead with this. Mary should be involved as Paul is her MSP and Helen as she is the chair of the group. Simon will support in this too.

Next Meeting

Chris Flannery of the Managed Clinical Network for Acquired Brain Injury will attend to speak about the MCN. We agreed to be prepared with questions on ways that we could advance our aims. Please have a think about questions before the next meeting. Things suggested were- how do we advance the awareness of brain injury?, Could we continue to have an active role in giving our views? How could we work in conjunction?

Next Meeting Date: 25^th April 2008, at Momentum at the earlier time of 12 noon.

Response to the MSP letters from Nicola Sturgeon- Health and Wellbeing Secretary

Dear ... (the letters were sent back to local MSPs)

Thank you for your letter of 14 January to Shona Robison MSP, Minister for Public Health, on behalf of your constituents, who are members of the Service User Forum for Brain injury and have contacted you about improving the services available to people with acquired brain injury, especially through the provision of a standard information pack.

Please be in no doubt that I recognise brain injury as a substantial problem in Scotland. We also recognise people's need for information and support about their condition, especially at crucial stages such as the time of diagnosis or discharge from hospital, and that is one of the main points we've made in Better Health, Better Care, our action plan for NHSScotland.

I agree with your constituents that the provision of an information pack should be regarded as a national initiative. People must have access to the same information, regardless of where they live in Scotland. It seems to me that an excellent vehicle for taking this work forward would be the national Managed Clinical Network (MCN) for Acquired Brain Injury (ABI).

The Network was set up in February 2007 to ensure equitable provision of high quality clinically effective services for people with ABI across Scotland. One of its main aims is to provide, in easily accessible formats, high-quality information for people with ABI and their families and carers which is relevant to the different stages of the patient journey. One of the MCN's working groups is identifying current practice related to information-giving and is in the process of collecting good examples of the written information made available to patients and their families.

If your constituents or the Service User Forum for Brain Injury would like to find out more, I suggest they get in touch with the Network Manager for the ABI Managed Clinical Network. Her contact details are as follows:
Christine Flannery
Network Manager
MCN Office Administration Building
Astley Ainslie Hospital
Edinburgh EH9 2HN

Your constituents may also be interested to know that the Scottish Intercollegiate Guideline Network is in the process of revising its clinical guideline on acquired brain injury. As part of that process, SIGN now provides information for patients and carers, and would therefore, I am sure, be interested in your constituents' and the Forum's views on the issues which are important to those who are having to come to terms with acquired brain injury. The person to speak to about this is Dr Safia Quereshi, the relevant Programme Director at SIGN. Her contact details are:
SIGN
28 Thistle Street
Edinburgh EH2 1EN

I hope the information in this letter is helpful to you in replying to your constituents.

Nicola Sturgeon

The DRAFT Petition in Full.

DRAFT: Petition by Helen Moran on Behalf of the Brain Injury Awareness Campaign calling on the Scottish Parliament to introduce a discrete Health and Community Care client category of “Acquired Brain Injury”, so that people with Acquired Brain Injury get the services and support they need, and so that agencies can plan and deliver these services more effectively.

Background:

Currently the way Acquired Brain Injury (ABI) services are planned and paid for (in Scotland) is joined to other Community Care categories- such as Physical Disability, Learning Disability or Mental Health. Physical Disability only affects a relatively small group of people with brain injury, Mental Health problems (especially Depression) can be common after brain injury but there will be a large range of cognitive problems which are unlike those experienced by the Mental Health Client group. Health and Community Care ABI services across Scotland currently have a wide range of different ways in which they plan and pay for services- each differs from area to area because there is nothing laid out from above. Very frequently the planning is through Physical Disability Strategies or Mental Health Strategies. Many ABI services are partially paid for through Mental Health Specific Grant money. This situation does not allow for the proper planning, delivery or funding of services.

We would want to see this situation changing by introducing Acquired Brain Injury as a discrete category within the Health and Community Care which will mean that it could be planned for and delivered separately.

This should be done at all levels- from the Scottish Government and at Local Authority and Health Board Level. The funding for services should then be specifically attached. There is funding which exists already-but currently divided up in different budgets- like Physical Disability and Mental Health. This would make the position clearer for this client group which has been subject to very patchy provision across Scotland.

Following on from the Governments Decision to retain the Neurosurgery Units across Scotland the introduction of a discrete category for Acquired Brain Injury would enable Scotland to look to the longer term in it’s rehabilitation, care and support for people with brain injury.

Currently we feel that the lack of a separate category results in Health inequality for people with Acquired Brain Injury across Scotland.

Definitions:

Acquired Brain Injury can have many definitions. Brian Pentland, Neurosurgical Consultant at The Scottish Brain Injury Rehabilitation Service Astley Ainslie Has used this definition :

Definition: implies damage to the brain that was sudden in onset and occurred after birth and the neonatal period. It is thus differentiated from birth injuries, congenital abnormalities and progressive or degenerative diseases affecting the Central Nervous System.

The Term “Acquired Brain Injury” should include:

• Traumatic brain injury (TBI)
• Haemorrhagic brain injury (HBI)
• 15% of Stroke
• Vascular brain injury (VBI)
• Ischaemic Stroke
• Anoxic (& metabolic) brain injury (ABI)
• Cardiorespiratory arrest, hanging, drowning
• Hypoglycaemia
• Infective brain injury (IBI)
• Meningitis, Encephalitis

For Planning Purposes it could also include:

• Brain tumours
• Alcohol-related brain damage

The results of ABI include a range of physical, emotional and cognitive problems like:

• Memory problems
• Feeling depressed, tearful or anxious
• Being irritable or easily angered
• Problems with personal relationships
• Difficulties with attention and concentration
• Difficulties communicating with others
• Taking longer to think or carry out tasks
• Loss of confidence and self esteem
• Impulsiveness and problems with self control
• Physical Disabilities- Weakness and Paralysis in limbs
• Mobility Problems
• Balance Problems
• Difficulties in returning to work
• Problems interacting with other people
• People can become socially isolated
• Epilepsy
• Increased reliance on alcohol or other drugs

It is a “hidden disability”.
Most people who have Acquired Brain Injury look the same as anyone else. From the outside there is no way to tell someone has Acquired Brain Injury. This can make things more difficult as people very often judge on appearance. Damaged Brain tissue does not regenerate and so the
problems are often life long.

Scale of the problem.

Sharon Thornhill and colleagues carried out the most recent study of Glasgow in the year 2000. These are some of the findings- The statistics have been extrapolated for all of Scotland.

• In Scotland around 12000 people will attend hospital each year having had some form of brain injury.
• Of these around 5500 people will be left with ongoing moderate to severe
• disability after one year.

Moderate disability is defined as having significant changes in work and lifestyle; Severe disability is defined as being unable to support themselves for 24 hours.
(Thornhill, et al, 2000)

References:
Sharon Thornhill, Graham M Teasdale, Gordon D Murray, James McEwen, Christopher W Roy, and Kay I Penny Disability in young people and adults one year after head injury: prospective cohort study
BMJ 2000

Brian Pentland, Presentation on Influencing Service Development, June 2005

“If you can change one thing about any service what would it be?”

This was one of our opening exercises on Friday 29th. In pairs the group discussed the question and then made notes on post its. These were told back to the whole group after people had a chance to discuss.

These are the responses:

You should have a clear pathway, whatever caused your ABI including feedback. We should have an information directory. We should have joined up thinking- not bitty.

There should be further help to get into “Real Life” after being discharged.

“Better Expectations”- of what we can do- not being “written off”.

More help for the family.

Specific ethnic minority support.

To let brain injured people know what help is out there for them.

For services to know more about ABI.

Improving talking and listening in all services.

More help in the community.

Information Packs for all.

A 24 hour telephone helpline- specific to ABI (very much in the early stages).

A separation of Mental Health and ABI services.

Specialist Physiotherapists and Nurses who understand ABI.

Other Comments:

I would like to be remembered- not forgotten.

Meeting notes: 29th February 2008

Introductions

Helen as chair gave a welcome and said what the purpose of the group was. Brain Injury is so common- it is down to us (as people who have been there) to use our voice to improve services for the future. People with Brain Injury should be acknowledged and treated fairly.

We went around the group and said who we were and what our interest was.

Letter to MSPs on Information Packs for people with ABI

Most people who sent one had their responses from their letters. Most MSP’s had forwarded a letter from Nicola Sturgeon the Health Minister responding to the points made. This letter was read out to the group and copies were distributed for discussion. The full text will be included on the website, please contact us if you want a paper copy to see.

The letter was discussed it did make some good valid points about other work which was being done, and there were also a couple of things that the group wanted to write back about. A small sub group was set up to work on the letter. This was made up of David, Margaret, Stephen and Helen.

The letter mentioned Chris Flannery from the Managed Clinical Network for Acquired Brain Injury- who is doing some work on information. The group agreed to invite her to the next meeting if possible.

Petition on Acquired Brain Injury

The petition sub group reported back that they had come up with the following petition which will be submitted to the Scottish Parliament.

“Petition by Helen Moran on Behalf of the Brain Injury Awareness Campaign calling on the Scottish Parliament to introduce a discrete Health and Community Care client category of “Acquired Brain Injury”, so that people with ABI get the services and support they need, and so that agencies can plan and deliver these services more effectively.”

The group discussed this and the background statements which were to be submitted. Some changes may still be made on it. As the petition asks which other groups have been consulted we felt that it would be good to show the petition to some other groups for discussion before it is submitted. This will help generate some interest in signing it from other also.

The draft text will be put on the website.

Funding

Helen reported back that she had some discussions on funding for the BRAINIAC group with Alison Davies at the Community Information Service. This is not urgent at present.

Next Meeting.

The next meeting was agreed for 28^th March at 1pm. However this will be at Renfield St Stephens- 260 Bath Street. the meeting after this will be on 25th April- venue to be confirmed.

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.