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.