A story by BIG (Brain Injury Grampian) Group
We tried to remodel & improve our breaks for carers allowing them to meet/engage with other carers away from there caring duties. We also established fortnightly drop-ins with therapy sessions for the benefit of carers and cared for. We then organised a family summer event to sustain and consolidate the family relationship.
What BIG Carers+ did
For our BIG Carers+project we sought to provide
• 1 Lady Carers respite weekend
• Regular (separate) monthly carers meals for male and lady carers
• Drop Ins with therapy sessions each fortnight
• A family summer event
All of these were delivered through the year.
Overall the project went to plan
Our Lady Carers enjoyed a 3 night break at Craig Alvah lodge in Banff in May. Craig Alvagh can accommodate up to 14 but the attendance was a little lower than normal with only 8 attending for the full weekend and a further carer attended for 1 day. Many of our carers struggle with complex behavioural issues and being able to speak openly and informally to others who have the same challenges is extremely beneficial. We provided quality accommodation. The lodge is self-catering but one meal out was provided together with a low cost pampering session. All other provisions were funded by the carers attending.
Regular Carers meals and Fortnightly Drop Ins. Throughout the year we have run Drop Ins at Inchgarth Community Centre and also carers meals for male and lady carers. The male carers meet at various locations in the city with the lady carers normally meeting in Ellon. The therapy sessions at the Drop Ins have been particularly well received. The numbers attending fluctuated but it proved that these events address a real need.
Summer outing for carers, cared for and families. In early August we arranged bus from Aberdeen with pickups to have a trip on the Strathspey Steam Railway (with afternoon tea) at Aviemore. A total of 53 attended. The trip proved very popular and was a great success.
This project formed part of our Social Support programme for the year and provided real benefits to our members (brain injured, carers and families)
What BIG (Brain Injury Grampian) Group has learned
1. Properly research with clients/carers/cared for before launching a new initiative to ensure that it is something that they would ﬁnd beneﬁcial.
2. Look at what we are doing already. Determine what works well and what less well. Build on what works, re-evaluate and alter or discontinue what doesn't. Don't assume that it's right because we think it is. Keep an open mind and investigate any new opportunities/activities which would be beneficial for our members.
3. Make sure you don't overstretch. This leads to failure which is in nobody's best interest. Ensure that the resources /workers/ﬁnance/ accommodation etc are in place before committing.
4. If we involve our members (carers and cared for) more then they commit better to BIG, attend more events etc. Their involvement ensures that the programme remains relevant and forward looking.
How BIG (Brain Injury Grampian) Group has benefitted from the funding
The funds provided are invaluable to our small charity. We have to raise approx £26,000 annually to fund our social support programme for members. We have no committed regular funding so the grant goes a good way towards this. Without this assistance we would have to consider cutting back on our programme although this would be a very last resort as our members require the support which it gives them. Increased involvement of a group of our carers on Committee/Sub Committee and in support groups has been very positive.
Carers and Cared For, by socialising and reducing feelings of isolation all will benefit from a reduction in levels of stress and a marked increase in confidence. This will be evidenced by increasing attendances and membership growth.
This outcome was fully achieved. Attendances at events continue to grow and the atmosphere is always very positive. Social isolation is often a side effect of those affected by brain injury (sufferers, carers and families). For many the BIG events are their only social outings. At our events they can meet, chat with and enjoy the company of others who face the same challenges. Reducing this isolation increases the confidence and mental well being of participants.
"L" cares for her husband "P" full time after he had an operation for an aneurysm. She recently attended her first Lady Carers Weekend. "P" had an undiagnosed and unstable brain aneurysm which was leaking. It was in a difficult place for the operation and he suffered hydrocephalus which probably caused most of his disabilities and brain damage. "L" was initially worried about attending her first Lady Carers Weekend. In her own words - " I had my own room which made me feel comfortable and relaxed while I was away. I also laughed a lot. I realised that I hadn't felt like that in a long time". "I will come to the next weekend and attend more functions with "P". I am glad you all at The BIG Group supported me in taking that first step. Thanks"
More carers attending more often. Informal networking by carers, coffee meets, lunch etc. Mutual support of each other. Reduced crises.
Our attendances at events continues to increase. Carer attendance (both male and female) at our main events is growing steadily. Some attend occasionally others attend everything. Numbers for the carer specific events has been lower than we expected but this has been more than countered by the significant increase in carer commitment and attendance at our other events. We know but cannot monitor that there is a lot of mutual support & informal get together's between carers. All of this serves to reduce the feeling of isolation and helps to reduce the incidence of events escalating into crises.
J” suffers from an acquired brain injury following a car crash in 2014. After spending over a year in hospital with extensive rehabilitation “J” had to learn the basics all over again, how to eat, speak and walk.(and is still learning!! 5 and a half years later) This has been a long and slow process and challenging for all of the family. “J” is still nowhere near where he would like to be. As he says “and there has been many times I have wanted to give up and just accept this is who I am now but with the help and support of people around me I keep pushing myself every day. We discovered Brain Injury Grampian a few years after the accident. This is an amazing charity and, even better, a great support group for not only me but the people who help care for me. BIG tries to bring carers of people with brain injuries together so they could socialise and become a support group for each other and share the highs and lows of caring for someone with a brain injury. It is a group where brain injury sufferers and carers/families could get together. For some people this is the only socialisation they get. BIG group organise days out and social events throughout the year which are becoming more popular as the years go on. BIG Group has given us as a family so much I would like to do something to give back to them” “J” is still wheelchair bound and has significant speech problems, but he recently challenged himself (sponsored) to climb the Transitions Extreme” climbing wall to raise over £2,000 for BIG. “A” is father and main carer for “J” as well as caring for his wife “L” who has MS and working full time. “J”s sister and brothers also share in the care of “J”. The whole family felt very isolated after “J” accident and both “A” and “J” found social events very challenging. “A” is now a member of the BIG committee and the family are regular attendees at BIG events/meetings.
Fortnightly Drop Ins well established. A range of different therapy sessions established. Regular and rising attendance at carers meals and weekend. More carer involvement in BIG initiatives and committee.
We have seen more commitment by carers to help with the organising and delivering of our events. A sub-committee structure has been initiated to spread the load and ensure that we can continue to provide our social support programme. More carers are now involved in this initiative than previously. We now have a "core" of 15/18 at our Drop Ins. The Music and Laughter and Art sessions are very popular. Involvement in and attendance at the Drop Ins and other events increases carer confidence and this allied to the ability to talk with others who can share experiences makes our carers feel better supported and helps them to sustain their caring role. " I feel I am now part of what is happening. I am involved and can use my experiences to help others."
“K”s heath deteriorated after a sinus operation 12 years ago. She was diagnosed after 2 years of assessments and scans as having brain damage. It was as a result of a rare form of meningitis probably caused by or related to her sinus operation and a subsequent infection. The family (including husband and main carer “I”) felt very isolated and were not made aware of any supports. “I” decided to make family arrangements to ensure that Karen got the care she required. “I” arranged with his work to take on a 4 day on/4 day off rota. Both daughters also arranged their working hours to ensure that care was always available for “K”. “K”s physical health improved but her care requirements and lack of confidence to go out and meet people meant that there were severe restrictions on family life and continuing social isolation. “I” heard about BIG group when attending a Head Injury Information Day in Aberdeen. “I”, “K”, and their daughters are now regular attendees at BIG events and these are thoroughly enjoyed by all. The family are comfortable in the company of others who have had similar experiences able to talk, laugh and share. “K”s confidence has been hugely boosted. “I” is now a BIG committee member. “I” says “Learning about and getting involved with BIG Group has been like a door opening. I wish I had known about BIG Group years ago!”