Summary
The project involved taking groups of carers to remote rural parts of Scotland to take part in a supported, residential short break. Activities included Foraging, Astronomy, Art Workshops, Singing and music, Island tours and exploring the area.
What Stepping Out Remote Rural Breaks for Carers, Nature, Music, Stars did
Creative Breaks funding supported us to provide places for 16 carers on 2 remote rural breaks. It supported a range of activities from rural walks, island exploration, Singing, music and art sessions to supporting carers to join in Astronomy activities. There was lots of social time, always the opportunity for free time as well as cooking and eating together. Due to Covid19 restrictions both residentials took place in September 2021 and each provided 4 nights on the Isle of Lismore. The first break was on the 3rd to 7th of September and the second on the 17th to the 21st of September.
Caring situations included caring for a person with Cancer, Mental Health illness, Learning Disability, Autism, Stroke, Dementia, Physical Disability and Neurological Conditions. We prioritised carers who had been at crisis point over the past year and who needed statutory and or family to provide replacement care in order to get away on the break. 35% of the carers had never been on a residential break with us before and 30% were from minority ethnic groups. The feedback from carers evidences that we have met priority aims by reducing social isolation and improving their mental health and wellbeing. Carers have told us that they were on the edge and as a direct result of getting the break they were able to sustain their caring role, which was in doubt in the weeks before they came away with us.
We could not have made these breaks happen without the strong partnerships we have built on the island from previous trips. The mitigations involved in making this happen due to Covid19 required us to use more venues than ever. It was a huge logistical exercise with a number of curve balls coming our way but our learning from this has been huge too.
What care for carers has learned
We have learnt that these remote rural breaks consistently improve carers mental health and wellbeing at a time when we continue to see a significant rise in carer anxiety (exacerbated by the pandemic) and exhaustion. Ensuring carers can just rest and recover has been vital this year. It is a completely different experience, carers who come may never have been in such a remote setting but something in them is attracted to the idea and that then blooms when they get there.
This area of our Short Break provision attracts more male carers and minority ethnic carers, with typically 30% of the group belonging to this demographic. This is a higher rate than on any of our other break offers this year. During Covid19 we have had more contact with some of these male carers who may not have considered coming on a residential if they had not got to know us prior to the event.
We see improvement scores across all of our outcome indicators for this service from carers evaluation returns. This is the first year that we have held 4 night breaks and they do make a positive impact on how supported and less isolated and lonely people feel. This year because of the possibility of Covid19 restrictions returning we took the decision to rent 4 houses on the island, so that we would be able to easily rejig group sizes back to 3 or 4 households if required. An unexpected outcome of this was the bonding taking place between smaller groups of 4 or 5 carers, it was really strong and lasting beyond the break as detailed in the attached case study. The longer length of stay promoted this too but it seems the small group household was really important.
It did increase our budget for each break by about £2000 but we were successful in getting other trust funds to come on board to support the additional costs.
We were a bit concerned about staff members not being residential in each accommodation (for practical reasons staff stayed in smaller houses further along the island), would carers be happy with this and feel comfortable and safe? They did, in fact we feel they have been able to connect and take their own ‘household’ decisions and choices more easily because there has not been a staff member to ‘defer’ to. They owned the break in a different way from breaks where we have group leaders in the residential venue at all times. We were there, cooking, driving, setting up activities, chatting and available to anybody who needed us but at the same time we were not a constant presence. It was lovely to see friendships developing, people making breakfasts for each other and sharing a lot of laughter, wine and song of an evening!
This service does attract new carers as well as returning carers, this year we had the highest number of new carers coming away with us for the first time, over 30% of the carers taking part in these breaks were new to the service. We also had a higher than normal number of people from the most deprived areas, nearly 50% of the group was from the most deprived areas.
We are constantly learning in relation to the remote rural work, logistics, travel, partnerships, friends on the islands, engagement with the local community are developed with every trip. Having plan B in place becomes crucial, it doesn't matter what time of year it is, that ferry might not run so you need to be prepared to change plans. This year, it became crucial. All the work in ensuring that we know people on the island, invite them in to some activity provision we have where possible, building strong relationships paid off in spades this year. The islanders were from the outset happy to see the carers back and getting a break. This year climate change stepped into the breaks provision on Lismore, it turned out that it had not rained on the island for over 8 weeks prior to our arrival…. Meaning that all the stream and well water fed properties that we were renting were at risk of running out of water. So! New experience for the city based carers but we were on strict water management from day 1! However, one cottage which was stream fed ran out completely, we had this cottage booked for both breaks…. It ran out of water with the first group and so the owner had no choice but to cancel our second booking…. We had 5 days at the height of tourist season to try to resolve it.
Nothing was available publicly, so we went to the community, could they help? We were at the point of having to decide…. Did we cancel the break for the 9 carers coming or select 4 not to come….not a decision any of us wanted to even consider. A phone call response came in an hour after the call for help went out and saved the day. A local family gave us the use of their lovely family holiday house on the island. It was such a generous and kind thing to do. I don’t believe it would have happened if people didn’t feel a connection to us. Some family members were actually staying in the house when we put out the call for help and they moved out and bunked up with other family in order to let the carers have their break. Not something that happens every day.
The scenario above is just one of many challenges that we had to manage this year. We have had providers retiring, mothballing for 2021, changing their offer, all at short notice, as well as dealing with practical impacts such as limited numbers on the minibus, meaning we had to have more transport options. It has been rewarding but exhausting for staff, its taken total commitment from staff to make the programme work this year. They just never gave up. Some carers did have to cancel because their usual replacement care was not available or pulled at the last minute. This was one of the hardest things to deal with as often these are the carers most in need of a break. The majority of carers relied on extended family members to cover the caring while they were away but we also had covid19 stepping in to this, meaning a family member could no longer cover. For some carers we had amazing support from statutory services to support the breaks but sadly not for all the carers affected.
We have used Creative Breaks support and reporting to help us lever in more funding from other sources. Other funders really respond well to this and we have matched the grant. Funders recognise Creative Breaks as a robust and statutory funder and they rate what the aim is about so we will definitely continue using this evidence in our funding bids to others.
How care for carers has benefitted from the funding
Our organisation has definitely benefited from Creative Breaks funding. It has supported us to try and test a variety of breaks, expand our offer, try something new and untested and take a risk. Creative Breaks is an established short break funder and is recognised and respected. Other funders like to see us having this funding, they know it is monitored and evaluated rigorously, they are happy to support the cost of additional places or contribute to an additional break based on the outcomes from Creative Breaks. It has unpinned a lot of our service development.
I think our learning and knowledge has been supported by Creative Breaks funding and it has supported us to understand and develop good evaluation methods.
Project Outcomes
Outcome
Outcome 1: Carers and the people they care for will have improved wellbeing
75% of carers who take part in the service will report having improved wellbeing as a result of coming on the break.
Results
Over 85% of carers taking part in the service reported having improved wellbeing as a result of coming on the break. The level of carer exhaustion prior to the breaks was high. Only 2 carers had another break for themselves in the previous year. For the majority of the group it was the first time they had been in a mixed group of people in a shared social setting who were not other family members in over 18 months.
We asked carers to fill in snap shot cards with just 3 words that expressed how they were feeling, one side was for feelings on setting off for the break and the other side was for 3 words for how they were feeling on leaving the island to return home. They illustrate how exhausted some of the carers were. Each break involved a huge amount of staff support and input from the preparation and planning right through to service delivery and follow up support.
Case study
Case Study
H cares for his wife who has MS. H’s wife currently has a personal assistant however H still provides a large amount of the care, with the help of his two sons. H’s caring situation can be very challenging, for him and also for his sons. As is the nature of the cared-for’s condition, it has progressively got worse over the last few years and, as with most carers, the last year has been even more challenging due to Covid-19.
H has attended a couple of Still Caring events previously but had not attended a Stepping Out residential short break before. It was after a workshop that H had attended that I first had the conversation with him about the Stepping Out residential breaks, explaining what it involved. At this time, we were not able to run any residential breaks due to the Covid19 government restrictions however I encouraged H to apply once they were back up and running. When our new programme went out, H applied to come on the Lismore break, along with his 18-year-old son who helps with caring.
We were able to offer both H and his son a place on the Lismore break, allowing them to come away together and spend some quality time with each other away from their caring role. H and his son have visited other Scottish Islands before but have never been to Lismore. Although H’s son was much younger than most of the other carers on the trip, he fitted in from the start, both he and his dad were immediately blown away by the beauty of the island – we could see them relax in front of our eyes.
Throughout the course of the trip, H and his son had chance to spend time doing things they enjoy – including swimming in the sea! Most importantly, they had time to relax and spend time together; it was clear that they have a strong bond. As well as the quality one-one-one time, H and his son connected really well with the group, especially the other carers who were staying in the same cottage – much laughter was had, especially during the communal meal times. Another thing that H and his son were really interested in was an archaeological dig which happened to be taking place on the island during the time we were there, and H and his son had the chance to speak to the professor overseeing the dig.
By the end of the break, it was clear to see that H and his son were both feeling as though their wellbeing was much improved and that they had really benefitted from spending some quality time together. I saw H a few weeks after the trip and he told me that he and his son both spoke about Lismore, almost on a daily basis. H’s son is hoping to go back there and they have asked about renting out a Bothy that we visited. The break gave them both a chance to re-set and focus on themselves for a few days. This was their first break, but we are confident that H and his sons will definitely come away with us again on future Stepping Out trips.
3 word feelings pre and post break from carers:
Start of Trip 3 words
Tired Apprehensive Hopeful Freedom! Excited Awesome
Exhausted Exhausted Exhausted Exhausted Anxious Worn
Exhausted Angry Used Stressed Frustrated Tired Excited
Happy Relaxed
End of Trip 3 words
Relaxed Pleased Positive Happy Grateful Motivated
Relaxed Spoiled Invigorated Happy Enthralled Excited
Laughter Fun Energised Seen Appreciated Chilled
Sad we are leaving
Outcome
Outcome 2: Carers will have more opportunities to enjoy a life outside of their caring role
75% of the carers taking part will report having had a positive break for themselves away from their caring situation with their peer group.
Results
We exceeded our target with over 80% of carers taking part reporting having had fun, made new friends and taken part in activities with the group. A number of carers told us how important it was that they finally got a break away from their caring role. For the majority they have not had another break for themselves this year and have been shielding the person they care for (formally and informally) over the past 18 months. They felt their lives had been put on hold while struggling to single handed replace packages of care and other care services at home.
‘the balance between group recreational activities and time to do our own thing was perfect. Delicious food! Great outings and activities, loved it!’
‘I have been able to put myself first and not neglect/lose myself. The timing of the break helped me. The loss of my dad, I haven’t had time to take it all in as it has been a hectic, stressful and difficult time caring for my mum. I have been so tired, its been a long haul.
Case study
Case Study 1:
L and M live some distance away from Edinburgh and as such are only able to access our Stepping Out Breaks as well as regular updates and communication from us throughout the year via our newsletter.
They care for their daughter who has profound learning difficulties. All their holidays and breaks have to include their daughter except for this one where they are able to organise care for her. It is the only break that they have on their own.
Their first words to us when we asked how they had been were:
‘It has been awful. We have not received any help during the pandemic and have been left alone with our daughter with no support. Your contact with us has been a lifeline. We felt that someone was thinking about us, that someone cared. Even though you were a long way away, we felt we could pick up the phone and talk to you. We cannot tell you how much that has meant to us’.
They felt that they had not received the support they had wanted with their local organisations and were very thankful to have the opportunity to come on the Stepping Out break with us.
They both seemed very tired. L has ongoing, chronic pain whilst M had felt very isolated. They were very very friendly but also a bit hyper and excited. It did not feel that they could relax. As time went on however, both had time to themselves, away from the group and even managed to complete a complicated 5000 piece jigsaw puzzle together over the course of the break.
They both also really enjoyed the silk scarf workshop. Both did their own small tester piece but then worked on a design together – had great fun doing this. It was lovely to see the wife shining- with her art work- as she was very much the quieter of the two.
We also did a garden/foraging tour on Lismore which they thoroughly enjoyed. They both love foraging and experimenting with food and have their own allotment of which they are very proud. They shared their knowledge and enthusiasm with other group members ( the majority of them who were from different cultures) and exchanged recipes and ideas.
They have since gone onto maintain contact with 4 other carers on the trip and have been invited down to Edinburgh for a meet up and dinner.
They were also invited with their daughter, which means a lot to them and are planning to make this into a wee break for them all.
This has helped enormously with their confidence, their outlook- they are looking forward
to the break with their daughter and for her to be included. They have made very good contacts and friendships with other carers and have gone on to maintain this relationship. They are already thinking about their next break with us and have made suggestions as to how we can include their skills and knowledge with regard to foraging and cooking as they would very much like to share this with other carers.
Strategic Outcomes:
Carers have been extremely anxious and concerned about the risk of infection during Covid and have been very reluctant to go out or to be with other people. L and M both said how good the trip had been for their confidence and had helped to alleviate a lot of their anxiety around this. Their desire to come on the trip meant that they had to come away from the safety of their home and be around other people. They felt reassured with our Covid procedures and checks and felt that they could trust us to look after them. As a consequence they are now also thinking of a short trip to Edinburgh with their daughter later this year.
Life and interest outside of caring, feeling supported and safe as well as making new friendships and future plans.
Personal Outcomes:
It has helped to strengthen their relationship as a couple and to give them much needed time together away from caring. They have engaged with people from other cultures and have really benefited from this exchange. The break has meant that they can go back refreshed and recharged and look forward to seeing their daughter again.
They have written to us since- to say how much they enjoyed the break and to send us photos of their allotment and the produce.
We have not had this kind of contact or relationship with them previously; the ongoing relationship has strengthened their link with us; it has also fostered trust in that they are more open to talking and sharing their situation.
They have a clear area of interest and expertise in gardening and foraging and have been able to share this as well as learning something new. This has meant a great deal to them; lockdown, lack of contact with others and isolation had left them feeling unappreciated and disregarded and the trip has helped to alleviate this considerably.
Wider Impacts
The forthcoming trip to Edinburgh is very important to them – to be able to Introduce and include their daughter to the other carers that they met whilst on the break.
It has also meant that they do not have to miss this opportunity. Had their daughter not been invited too it is unlikely that they could go. This in itself helps them to sustain their caring role. It has reduced their isolation and they feel that they are valued and respected.
This has also given them an increased opportunity to share their interests and to come away to the city- again something which they would not normally do .
They feel supported.
Case study can be shared publicly Yes x No
Outcome
Outcome 3: Carers will feel better supported to sustain their caring role
75% of carers will report that taking part in the break has helped them to cope with and continue with their caring role
Results
Over 85% of carers told us they felt supported, safe and cared for while away with us. Some of the carers were in very difficult family situations, bereavement, family breakdowns, complexity of caring having increased to name a few issues emerging over the break. Some of these carers were at tipping point when they came away with us. They all reported not feeling like that any more at the end of the break. They had made new bonds and friendships, felt rested and recharged and able to stand back a bit from the frontline. Finding out that you are not alone was mentioned in a number of feedback returns.
‘This break has stopped me from walking away from my roll as a carer. Its made me feel a bit more in control of my circumstances’
‘the ladies I stayed with helped me to laugh again something I haven’t done for a long time’
‘The break gave me perspective, viewing the situation of being a carer from a distance. I realised I simply never have this opportunity in daily life'
Case study
Case Study 1: Stepping Out to Lismore (Creative breaks)
A is a full-time carer for their partner who had a severe stroke several years ago and is now wheelchair bound and reliant on 24 hr care and support, they are unable to do anything for themselves. They have paid carers who come in four times a day, but the rest of the time A is providing the required care and support.
A had taken part in many of our ‘virtual’ activities over the course of the pandemic, participating over Zoom. This was easier for them to schedule in to their day and could pop away when their partner needed some support.
Our staff team had additional, focused planning that was required this year, to ensure that the Stepping Out® breaks are compliant with all Covid19 Government guidelines. As is the case with A, most of the carers attending have not had a break at all for the last year and a half and many have been feeling anxious about leaving their cared for person and also being away with a group of people they don’t know.
Whilst the online activities have provided A with much needed interaction throughout the Covid pandemic, they were encouraged to apply for our Stepping Out programme so that they could have a complete break away from their caring situation.
We prioritised a Stepping Out break that would link up with when they were able to get respite care arranged for their partner. A was allocated a space on a break to the Island of Lismore, for a 4 night break. Staff were regularly in telephone contact with A prior to the break, ensuring they were happy with our Covid19 guidance and compliance and felt safe with us as well as providing support and advice.
As the respite care required for A’s partner, was very specific with additional requirements for nursing care, this made it even more difficult to access and arrange replacement care than for some other carers.
A’s Social worker was heavily involved and replacement care was arranged. Then just 3 days before the planned trip, the planned respite care was cancelled due to there being a case of Covid19 within the respite establishment. A was distraught after all the planning that had been done and arrangements made. Their Social worker stepped up and was instrumental in frantically searching for alternative respite accommodation that was suitable. They found some suitable accommodation but there was a shortage of staff, they didn’t feel able to take on the care needs required and had to refuse the placement. A was distraught and ready to collapse, in tears, near breakdown, the social worker had one last option. They agreed to provide care but A was informed that their partner would have to be confirmed as Covid19 free, by having a negative PCR test prior to entering the respite facility. This was the day before the break to Lismore began, 24 hours before A needed to be on the minibus! A then had to drive their partner to a testing facility asap and get a PCR test completed. It was then an anxious wait until they received the negative result, which came in at 8am the next morning. Just in time for A to get the cared for person into their respite placement and to hop in a taxi to get to Care for Carers in time to get on the minibus and away!
A was understandably exhausted, desperate but also very anxious and unsure about going away at this point. When they arrived at the minibus, the group did not know anyone else, other than having met them previously on Zoom (this is something we have been doing this year in order to minimise carer stress, bringing the group together online before we meet in person), which definitely helped to alleviate some concerns. A quickly relaxed and chatted with the other carers, bonding immediately with a small group of them. A loved being on the Ferry and informed us that this was their first trip to a Scottish Island, as it was for most of the carers on the trip. The carer’s were all allocated accommodation in small groups, establishing one household for the duration of the break.
A was in accommodation with a group of 3 other carer’s. A immediately formed a bond with these carer’s and was laughing and joking. The carer’s were left to cook their own breakfast and the foursome quickly forged a working team, helping each other and supporting each other. The carer’s are all from different social, ethnic and cultural backgrounds. They shared cultural differences and A managed to learn some new Scottish words, some funny and some rude which caused a lot of laughter and was shared with all the other carers when we got together as a whole group for evening meals.
By the end of the trip, A had created new memories with their new friends and shared telephone numbers, they created a ‘whats app’ group so that they can keep in touch and were sharing photographs with each other. They all agreed to meet up and within weeks after returning, they met and enjoyed each other’s company, reliving the fun that they had.
A could not believe what a difference this short break made to how they felt and admitted they were almost at crisis point and if the respite care had fallen through, they think it would have pushed them over the edge. The group loved having the chance to get away to a Scottish Island where they would never have gone on their own and the fact that they made new friends was an added bonus. They all discussed how difficult it was to access replacement care for their cared for people. Individually they felt unsure about going away with their cared for person alone, they were not sure they could manage and it would certainly not be a break for themselves. However, they discussed the possibility of going away together. Could they go together with the people they care for and support each other with their caring responsibilities and getting a break together as carers at the same time? They have decided this would work and when a Respitality offer came up this month which provided fully accessible accommodation and bathrooms they enquired about it. The original Respitality offer was for one family to get a break but the staff member contacted the provider and asked if there was any chance that they would consider supporting 8 people to get a break together, 4 carers and 4 cared for people. The provider has agreed which is fantastic and the group of four carers are planning their shared break which they are very excited about.
A is also looking forward to getting away on another Stepping Out® Break next year. The group would like to go on Stepping Out® again together, we’ve never done this before but it is definitely something we would like to offer. We have had a number of carers request this over the years but never had the capacity to provide it but in these most challenging of times when carers are exhausted and creating their own short break solutions it feels like something that we should prioritise as well as supporting new carers.
Carer Feedback from carers in the above household group:
‘just wanted to say thats the first teip were I've made really really good friends that i want to see all the time and want to have them near or on every trip ivģo on it was the most wonderful time I've ever had and I've been on a few and it was the kind of trip were a lot of tge time it was just us 4 and we just laughed and talked and cried a wee bit bhut it was ok to be like that but it was the first time that i never at any point felt alone which I've felt like that on every trip at some point even though there was people around and when we came home they all gave me thier numbers and its the first time I've ever in my life been in a group chat and its like they are always there and you wonderful care for carers made that happen for me i cant thank you enough in fact theres not enough space i feel i could write a book and I'd never run out of things to tell you xxxx’
‘It was amazing to get away with like minded people and really helped my mental health having people to talk to without being judged. Caring is a very rewarding as well as challenging and isolating role that only people in similar circumstances can under stand. The Joy's the guilt and exhaustion can only be felt with experience. So care for carers are a life line I'm sure for us all. Thank you from the bottom of my heart . You guys are so ,so appreciated Xx’
Strategic Outcomes:
Carers are better able to continue caring and to sustain their caring roles. They have been able to build strength and resilience from each other.
Personal Outcomes:
Time away from the person they care from, to relax, laugh and share experiences with likeminded carers. New friendships formed and networks made. New experiences eg Ferry, Scottish Island.
Confidence building and desire to support each other going forwards.
Wider Impacts
New friendship group. Support from statutory and third sector staff coming together to enable the outcomes above to happen.
Enabling people to think outside the box and feel able to find some different solutions in difficult times.
Case study can be shared publicly Yes X No
‘My husband has been so happy to hear about my trip, I see how much he wants it for me which reassures me that he does know what a strain caring for him can be for me. It is not something we find easy to discuss’