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.