Carers Recharge Project
A story by MECOPP
MECOPP provided ‘group’ residential short breaks to Minority Ethnic carers resident in Edinburgh and the Lothians.
This enabled them to have a break from their usual caring responsibilities. Participants were given the choice of attending either with or without the person they care for.
What Carers Recharge Project did
Over the lifetime of the grant, MECOPP provided 6 residential short breaks to Chinese and South Asian Carers. For the Chinese community, these entailed 4 x 3 night/4 day breaks and for the South Asian community, 2 x 2 night/3 day breaks. All participant groups were accompanied by staff throughout the duration of the respective short breaks.
No additional staff were recruited due to spare capacity (ie. unfunded) within the existing staff group. Participants were identified on the basis on the extent of their caring situation, the length of time they had been caring, access to other services, the impact of their caring role and availability to participate.
A significant amount of work was undertaken prior to the residential breaks to ensure they were jointly ‘produced’. For example, a number of ‘planning’ meetings were held with participants so that they could discuss and agree the type of activities they wanted, provide the relevant medical and emergency contact information required as part of the risk assessment process and complete emergency care plans (10 carer participants).
The breaks were held at the Atholl Centre, Pitlochry and the MacDonald Marine Hotel, North Berwick for the Chinese and South Asian Carers respectively. Activities provided at the Atholl Centre included, Highland Safari’s x3, visits to a Red Deer Sanctuary x 2, visit to barn owl sanctuary x 1, Blair Castle visits x 4, ‘Enchanted Forest’, ‘Fish Ladder’ visits x 2, Scottish Country Dancing and Pipe Music nigh, massage therapies (workshop and individual sessions) and country walks.
Activities provided in North Berwick included complementary therapy sessions x 2 per carer, visits to Tantallon Castle x 2 and boat trip x 2 to the Bass Rock. Replacement care costs of £135 were provided to carers who did not attend with the person they cared for. Replacement care was provided by other family members who undertook a range of activities with the individual being cared for.
Mrs A has never participated in any form of short break service before, she expressed feelings of loneliness, isolation and helplessness to the MECOPP worker. With the encouragement of the MECOPP worker, she agreed to attend the break whilst her adult children were cared for by other members of the family. Mrs A was also reassured by the preparation of the emergency plan prior to the break.
The break provided Mrs A with an opportunity to meet new carers, share experiences and provide support to each other. Mrs A also fully participated in the range of activities provided as part of the break. It was noticed by the support worker that a real bond developed between this group of carers during the break.
These friendships have been sustained post- break with the group meeting regularly and also providing mutual support through via Watsapp (social media). The break has also led to increased confidence levels for Mrs A. Since the break, she has joined the MECOPP computer class and is about to graduate, she has also participated in focus groups as part of the consultation to inform the new Carers’ Act.
Mr C has never felt able to participate in any form of short breaks before as he was concerned about leaving his father and also the impact his absence would have on his father’s emotional well being. As the model MECOPP used for the short break enabled Mr C’s father to accompany him, he was able to take up this opportunity.
Mr C was reassured that accessible transport and venue were provided. Mr C and his father took part in separate activities during the break and were able to share their experiences at mealtimes. Mr C explained that it felt more like a holiday for them both and because of all the support provided, he was confident that his father was enjoying himself when his son, Mr C, was not by his side.
Feedback received from Mr C post-break highlighted the impact the break had had on his relationship with his father. He explained that he felt more able to discuss ‘sensitive’ topics with his father about his caring role and that their relationship had significantly improved.
Miss X is struggling with her caring role since her mother’s diagnosis. Miss X is a full time student and struggles in keeping a balance in her studies and caring role.
Miss X provides all personal care for her mother, practical help with cooking, and feeding her mother due to the inflammation in her hands as well all cleaning and other household tasks, she also supports her mother to maintain her social networks, and to maintain her mother’s independence for as long as possible. She is also worried about her younger sister taking on more care tasks and tries to ‘shield’ her from this as much as possible.
Miss X found her caring situation very stressful because at a very young age she had to be responsible for her mother’s care needs leading her to get very frustrated and alone. She was particularly concerned about her mothers’ safety when providing personal care as she had fallen in the past when assisting her mother out of the bath.
Miss X contacted MECOPP as she was aware of the services we could provide. The South Asian Development Officer made contact with the family, she carried out an assessment of needs, and the worker supported the family through a referral to social work for community care, carer assessments, occupational therapy assessment, carer training opportunities and respite breaks.
Through providing this support the MECOPP worker established trust within the family and most importantly the parents of the carer. Traditionally in South Asian cultures a young female would not be permitted to go anywhere overnight unaccompanied by a family member but because of the intensive work carried out by the MECOPP worker in providing support and services for the family. So, when the opportunity for a respite break was given the parents happily agreed and the carer was delighted.
The following testimonial was received from Miss X:
“As a result of the support I received from the MECOPP worker I feel a lot more confident in my caring role. I never believed that I could have this opportunity as in my culture this is not allowed, but my parents realised I needed this break. I was excited to go the activities which were organised massage, day trips and access to a spa. I felt very relaxed and removed from my caring role because this was time for me!
I met some really nice people and we all shared our caring experiences. The best part of the break for me was being listened and feeling valued, I am really grateful to the support worker for helping me access this respite break.”
What MECOPP has learnedOur experience of developing and delivering the project has demonstrated the importance of involving beneficiaries in all aspects of planning. Our original application was based on the outcomes of two focus groups to ensure that what was delivered was relevant and appropriate to the needs identified.
When funding was awarded, MECOPP undertook a further consultation process with prospective beneficiaries to discuss options such as locations, type of accommodation, activities, length of break, emergency care planning and options for replacement care. As each group of beneficiaries was ‘formed’, we undertook planning meetings with the group to finalise the programme of activities, discuss the outcome of the environmental risk assessment to ‘match’ participant mobility with the external terrain, ensure current medical and emergency contact details were available to staff and that participants brought any medication required with them.
For carers attending without the person being cared for, individual home visits were arranged to explain and complete the emergency care plan and to finalise replacement care arrangements. Prior to the short break being delivered, a final group meeting was held to remind participants of arrangements and to provide an additional opportunity for reassurance should any be needed. Our feedback highlights that the extent of involvement provided was hugely valued.
Our second learning point has been the opportunities provided by the short breaks to develop ongoing support post-break. In the feedback, one group of carers who attended without the person being cared for shared how the relationships they had made during the break had continued on their return. Benefits noted included a reduction in isolation, an increase in confidence and being better able to manage their caring role. The group continues to communicate regularly on Watsapp (social media) and regularly meet up.
Our final learning point has been a greater understanding of how participants view the idea of making a financial contribution. We noted very real differences between the Chinese and South Asian communities in this respect. Despite some carers who attended with the person being cared for having to make a joint contribution of £100 for the two places, this was not seen as a barrier.
Comments received from the evaluation noted that making a financial contribution made the experience feel less like ‘charity’ and more like a ‘well deserved treat’. However, the financial contribution element proved to be a real barrier in encouraging South Asian carers to attend despite this being made clear throughout the planning process. We overcame this in negotiation with the funding officer who agreed that we could offset this additional cost by reducing the amount of money paid for replacement care to families. This option was discussed with prospective beneficiaries who agreed to this compromise. On this basis we were able to secure the participation of 10 South Asian carers in acute need (2 x 5 participants).
With regard to South Asian Carers, we would like to highlight one more point. In discussion with prospective beneficiaries it was noted that there were significant concerns both about the duration of the break (originally 3 nights/4 days) and the location. As none of the participants had previously taken time away from their caring situation, concerns were raised about being able to return home quickly should an emergency arise, how would other family members cope as they were not the regular carer and did not know the routine and also managing feelings of ‘guilt’. Again, we were able to overcome this by identifying a venue nearer Edinburgh with good public transport links and to shorten the break to 2 nights/3 days with the agreement of the funding officer.