Carers Whistle Stop Breaks (an intergenerational journey)
A story by Capital Carers
Our project supported Young Adult Carers and Adult Carers in North West Edinburgh to enable carers to enjoy time away from their caring roles; get to know other carers and help with the smooth transition from one age group to another through a supported programme of social activities and day trips.
What Carers Whistle Stop Breaks (an intergenerational journey) did
We delivered Xmas lunches; meals out; day trips- North Berwick and Safari Park, Stirling; barge trips x 5;Chips and Chat; Edinburgh Dungeons; Edinburgh Playhouse Musical; Murder Mystery Tour; Chocolatarium Visit from Winter 2021 - Autumn 2022. Apart from our Day trips, all other activities were within the Edinburgh locality – old town, new town, Corstorphine, Ratho, Lauriston and South Queensferry.
Our beneficiaries were unpaid carers - Young Adult Carers (YAC) 18- 25 years; Adult Carers (AC) 25 plus years and those they supported. Through previous 1-1 conversations and group discussions with our carers, it was clear that they were really struggling as a result of Covid 19 and lockdown. Our carers are used to regular programme of events and are encouraged to make suggestions and get involved in the planning process.
We reflect on what went well, what we need to change and what type of activities would be most beneficial. For this particular project we consulted the Young Adult Carers and Adult Carers and sent out letters to see who would likely take part. We scheduled the trips into our programme of events and circulated these to the Adult and Young Adult Carers, via post, email and social media, highlighting that we may need to prioritise if over subscribed.
Our organisation has a well established Volunteer service and we were able to utilise them for additional support.
This project was addressing the needs of unpaid Carers in North West Edinburgh to reduce isolation; increase carer confidence in their involvement within their community and beyond and to assist with transitioning into the appropriate age related service through intergenerational events. Capital Carers also have planned their service to be inclusive of the cared for person to attend where relevant.
All events were successful and the feedback was always positive. The chips and chat event stands out in terms of the best social and peer support as much laughter ensued. Covid impacted first 6 months of funding and staff capacity and unplanned organisation changes to premises altered plans in the latter half of the funding year. We modified and planned alternative events to the Programme
What Capital Carers has learned
Reaching out to and engaging with new families -as a service we recognise that there are carers who are hard to reach and engage. New carers often comment on how the service is exactly what will help. However, when they realise we do not provide transport this becomes a stumbling block to engaging in short breaks or other activities they could benefit from. This project has made us realise that funding applications to cover transport costs are imperative to engage the type of beneficiaries who use the service. Transport costs had risen in price from our initial budgeting. It was also more difficult to secure community transport so taxi's were more heavily relied on.
Developing new short break activities - It has been recognised through the change's and modifications to this funding that we need to reassess short break activities. Our aim was to give different types of experiences to our carers and to give them opportunities that are not so easily available. This is definitely important and we would want this to continue. What we did learn was that sometimes shorter breaks and smaller capacity had the same positive effect. Indeed, some of these events were more beneficial as group support and cohesiveness formed much quicker. Carers also could leave the person they cared for for this shorter period without as much stress and concern.
Unexpected challenges or opportunities -Whilst we accounted for Covid 19 and changes to plans, we had not anticipated staff capacity - maternity issues and staff sickness at the time of application. Going forward, these things will need to be anticipated. Neither did we anticipate that we would have to relocate our base at such short notice due to the building no longer able to accommodate our service as it had to close its doors for reasons out-with our control. This was a very stressful period of 2 months (August and September) where we had to find suitable accommodation and then relocate by the start of October.
Opportunities' were provided - when we planned these intergenerational events we were hoping that the Young Adult Carers and the Adult Carers would have a fun, social time together. This did occur and has actually helped us realise how important it is to continue this. Another carer service is also very keen to learn from us about our intergenerational work and we hope we can offer them the benefit of our experience and they can introduce this to other carers in areas we do not cover.
Carers participation at events - it was evident that some carers lost out on this as they were unable to leave the person they cared for alone. Alternative respite was not available to them and some services such as Day Care were not available; reduced or not wanted. Although we could offer some carers the opportunity for them to bring the person to the event, it was not always feasible.
Any short break event will need to address these issues and try to form a plan to help these carers access the services. As mentioned, Capital Carers do provide a programme of activities that is inclusive for the cared for person to come along with their carer. This works really well and is particularly important for our carers who care for someone with Dementia, whom we have a higher percentage of. It is imperative to plan for this in Short Breaks funding to ensure equal access for all carers.
How Capital Carers has benefitted from the funding
The Intergenerational Groups were not a new concept to our service as we had carried this out in the past with the Young Carers and the Adult Carers. We did not have a service for Young Adult Carers previously so this funding was a pilot experience for the Young Adult Carers and the Adult Carers. We want to continue to offer this service and expand this within our normal programme planning so all these carers have a regular group to come together. We believe our organisation's reputation has been strengthened as other bodies have been keen to promote the service to service users and they have all commented on our various events. We have established better links as a result. We are also meeting with other partner organisations to discuss this project. The experiences gained as a result of the funding will help when we seek other funding to justify our aim and objectives. As always, we wish to build on our skills, knowledge and capacity. We have identified staff capacity is important to deliver the service and we will be seeking additional support for this. We recognise that change from planning is normal and we hope we are better equipped to identify this and build more of this into our applications.
Outcome 1 : Carers will have more opportunities to enjoy life outside their caring role. Success: Carers will inform us that they are feeling more confident about going out and feel that they are again part of the community.
Carers had a total of 15 events to participate throughout the funding year. We believe this has undoubtedly helped carers to enjoy a life outside their caring role as the events were planned with this outcome in mind. This has enhanced their confidence as the collective support with others has left them feeling less isolated and helped them feel part of their community again. They were particularly pleased that transport was included as many of our carers were reluctant to travel by public transport still; many did not have own transport. Some carers were keen to attend but could not leave the person they cared for. For these carers, as long as capacity allowed and if the need was great, the person supported could also attend. It was felt that this was necessary as otherwise, the carer would not get a break and hence respite from the caring role. It also was seen as a break still as it enabled them to have a shared social experience of mutual benefit."
M was feeling very isolated as a result of Covid 19 and lockdown. She cares for her husband who has dementia and had no support from other services. She used to get Day Care provision but this stopped and was only just re-opening when she responded to our Whistlestop Programme. She was feeling very isolated and reluctant to use public transport. She reported that she had not been anywhere social for this past year and her days were very hard as her husband's dementia had worsened. She could no longer leave him alone as he constantly called out for her. She found this distressing. M commented she would love to go on our day out event to the Safari as this held fond memories for them both. However she could not be away for the duration as she would not be able to relax knowing her husband was distressed with her not being there. She did inform us that she could probably get someone to watch him but it usually causes too much upset and not worth it. It was agreed that M could bring her husband with her for the trip. As a result, their day was very enjoyable, her husband who was a keen bird watcher, enjoyed the Bird of Prey shows and actually helped the Young Adult Carer's feel less anxious as he was so knowledgeable about the flight of these birds. M was delighted to see this as she had stopped seeing her husband having this positive impact on others for a long time. Indeed, she commented how he seemed just like his old self. Both this carer and the person supported were feeling confident once again. M and her husband has participated in other events as part of this funding. Each time, they both enjoy all outings and they are now confident in being out and about in the community. M and her husband have also attended groups and activities out-with this project and are starting to enjoy their life outside the home again. They are grateful for this opportunity and feel life has improved immensely.
Outcome 2 :Carers will feel better supported to sustain their caring role. Success: Carers will report that they feel supported and feel confident to continue with their caring role.
This outcome is possible the most difficult outcome for carers at the time of this funding as it was a period where we were all moving out of lockdown and attempting to normalise getting out and about. It was still fraught with anxiety and uncertainty. Individual conversations and group discussions helped carers feel supported but having limited time away from more meaningful social events was lacking and services which they had previously used were drastically reduced or remote. Whilst ZOOM had a role in keeping carers engaged and help support them in their caring role, it was not a substitute for any relief from the person cared for. The Creative Breaks were so needed and carers are now more optimistic about their future as the events offered to them provided a well needed break and re-energised them which helped them to sustain their role. By the latter half of the funding year, carers' confidence was improving and carers were feeling less isolated and more empowered.
B is a Young Adult Carer cares for mother who has physical needs. In order to get a break from caring for long periods she needs to get someone to sit with her mother. B loves to attend group events and outings and was able to participate in many outings and short breaks from our Whistle stop Creative Breaks Programme. B wanted to get involved in all events and as a primary Young Adult Carer her needs were great to help her sustain her caring role. This was particularly poignant as she reports how she gets limited time to socialise with her friends and peers due to her caring responsibilities. Whilst she does not feel resentful, it was evident that B was missing out on normal Young Adult experiences. B enjoys being in the company of older adult carers and gets a lot of support from them also. She thoroughly enjoys the intergenerational events - so much so that she is keen to attend other activities within the service with the Adult Carers - eg Bingo, knitting, quizzes, movies and general social groups. This is in addition to the Young Adult Carers support available to her. She takes her caring role in her stride and recognises that our service has been invaluable in helping her have a life outside her caring role; feeling part of a community and helping her to sustain her role. She has been with the service for 10 years, as a young carer and now a young adult carer. This has enabled her to cope and help her mental health and wellbeing. She is most thankful and texted after attending Edinburgh Chocolatarium event to express her gratitude: " I just wanna say thank you on behalf of the young adult carers that we appreciate for everything you have done for us...Thank you so much for today!" B has grown in confidence during her time with us. The Creative Breaks truly give her experiences that she would otherwise not be able to do. From days out to North Berwick and the Safari trip and experiencing a Barge trip to spending time in the company of others who understand what it means to be a carer.
Outcome 3: Carers and the people they care for will have improved wellbeing. Success: Carers and cared for will report an increase in positive relationships with each other.
We previously reported that this outcome will become clearer once a period has elapsed. The responses immediately after events were very positive and these were that they feel significantly less isolated, feel recharged and energised; less stressed; had a break from the caring role and felt it would help the relationship with the person they cared for. This remained a constant response. On further conversations with the carers over time it was notable that those who attended events more frequently had a better relationship in general and well - being was better sustained. Reasons provided for this were that they felt part of a community and knew activities were planned that they could look forward to. They also commented that spending time with others helped them develop new skills to manage. One 'hard to engage' carer came on her first event with us and enjoyed being with other carers so much that she now attends every event possible and her relationship with husband has improved.
J has attended our service for 5 years. She is an Adult Carer supporting her husband with neurological and memory needs. Throughout this time J was coping really well and never complained - "just got on with it". This past 6 months however there was a notably change in her well-being. J is now in a lot of pain and is finding the pain quite unbearable at times, having to rely more and more on pain relief to get through the day. This is on top of having to attend to her husband' needs which simultaneously have become greater and more demanding. During lockdown J was offered the chance to attend activities and Peer support on Zoom but refused as did not enjoy this form of interaction. Whilst she was supported by phone and text by staff, J and husband missed the social events and this impacted on their positivity and mood. When we resumed in person activities they were delighted and even more delighted that a series of events were planned as a result of this funding. J's mood lifted and she reported that it was her saving space as she had made many friends within the service and relies on them to express some of her worries to people who "get it." J and her husband both attended any events that they were able to. Her husband had deteriorated and had lost some of his social ability but by the end of this funding year he was getting a lot of confidence back and felt part of the community. They both benefit from intergenerational events and look forward to meeting up with the younger carers. At the Chips and Chat event, J was struggling with pain on the day and the pain was evident from her body language. As the event progressed and the YAC spent more time chatting with them, you could see the strain lift. These Adult Carers and 2 of the Young Adult carers were bantering and in fits of laughter. It was a pleasure to watch and it was great to see the camaraderie. After the event, the Adult carer commented on how much fun they had and how it helped distract from her pain and role. She also commented how great it was to see her husband enjoying himself and praised all the Young Adult Carers for helping to bring a new energy to the groups. J later texted saying " Thank you for all your hard work this afternoon. We enjoyed the whole event we have never laughed so much for a long time. The young adults are a pleasure to be with and it was nice to see so many people there." This has helped their relationship and well - being and it is great that the funding has made this difference to them.
Additional project outcome
Carers have more confidence to make choices. Success: Carers will report feeling very respected and valued within the service, given a voice to make decisions that affect them
One of our new Young Adult Carers has become socially isolated and relies on our service for a lot of their social interactions. They are relatively new to the service so we did not know them as a Young Carer who had previous experience with us. L was keen to attend as many of the WhistleStop breaks that was possible as this helped her to develop new peer to peer support in a social setting as well as getting time away from the home. L struggles with anxiety and finds it extremely difficult to use public transport. Without the funding for transport the project provided, L would have been further isolated as she could not attend. L reported how appreciated she was and how it made her feel worthy and valued as this enabled her to attend activities. Throughout the year of this funding, L's confidence improved and she was able to feedback her experiences with the service, what she had enjoyed and what she would like more of. Like other of our Young Adult Carers, L started to enjoy being with the older Adult Carers. She attended the Joseph and technicolour Dreamcoat Musical at the Edinburgh Playhouse. She loved the whole show and experience but as we were all leaving and gathering up outside, L had a slight panic attack as she found the crowds leaving all at once difficult. She immediately sought me out and asked for support and to hold her hand. At the same time another Adult Carer noticed her distress and came over to support her and her anxiety abated quickly. The Adult Carers support reassured L and she commented again how kind it was that people wanted to support her. We also discussed future events and that now we are aware that this could be an issue then we can plan for this and provide support and reassurance. L's confidence has improved a lot since participating in the intergenerational events and she feels more respected as a result. She has also been able to express her needs more and will now inform staff of situations she is likely to get anxious and overwhelmed in. She knows staff and her own peers and the Adult Carers will support her too and this has made it easier for her to attend events.