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Carer Engagement Report

Introduction: 

Following the agreement from senior leadership to recommission the all age unpaid carers contract and all age unpaid carers strategy, Wiltshire Council commissioned an independent arts organisation Rosetta Life to enable unpaid carers of all ages to express their voices, experiences, and challenges of caring in Wiltshire to help develop the next 5 years of unpaid carers support. 

Rosetta Life is led by specialist artists working in health and social care settings working nationally and internationally with a vision to ensure that every person living with life altering illness, facing loss, or caring unpaid has the opportunity to lead a full creative life. 

They engage participants in transformative creative processes through music, writing, dance, performance, and film.

Implementation 

Throughout July 2023- October 2023 Rosetta life (RL) was commissioned to talk to adult carers, parent carers, young carers and young carers transitioning to adulthood. 

Through the 4 months of engagement RL worked with 16 young carers and young adult carers, 4 parent carers and 21 adult carers countywide focusing on poetry and song, movement, and music to reach an emotional and felt response to the theme of care. 

The impact of the work was that there were discussions about feelings and emotions of carers. This led to more creative conversations rather than direct questions about caring for someone that could hinder creative coproduction. 

The outcome was the launch of a campaign named 'caring around the clock' to encourage carers to talk about their lives every day, any time as 'the care does not stop'. 

RL also connected with community volunteers and libraries to share the approach.

Adult carers: 

Case study: 

On 24 July 2023 we ran an online taster session. Although 6 people were registered only two people logged on. They were a couple who cared for each other. The wife (VDR) has been living with MS for several years and has been cared for by her husband who is now living with Parkinson's (JRD). We ran a movement workshop exploring the anatomy of the arm and hands of caring and then ran a free writing task following the movement. VDR wrote independently but her husband was unable to write and so I recorded his voice and we wrote from the spoken words. On 10 August 2023 we ran another online session exploring how we find our centre, finding the anatomy of the feet and exploring finding our ground. We then explored a free writing task. At the end of the session we discussed which theme they would like to pursue and they chose the theme of the first session. I contracted a composer and we discussed creating a duet exploring the themes of their poems. I edited their words online with them and we arrived at this song which is a beautiful exploration of how we connect through care and the challenges we face in so doing as we live with illness.  

SoundCloud: The Person Is Never The Problem (opens new window)

Another workshop was held to showcase more carers voices through poems, the profound emotion that engaged the room captivated the audience to understand more how carers voices were so important and how changes can affect them. 

Please see below the poems shared on the day: 

Vimeo: The Person is not the Problem... (opens new window) 

Vimeo: You Need to Know (opens new window) 

Vimeo: Help Me.Help You, Love Me 4 (opens new window)  

Learnings from the sessions were that carers wanted more meaningful interaction; all carers spoke of the importance of doing something that had meaning rather than just meeting for a chat. They advised of how hard it was to become a person again after the person they are caring for dies- "all support that might have been there disappears, this compounds the feeling of isolation for everyone" 

Verbatim feedback from session: 

Worry gets taken away with other people when you can share. I walk into the Wetherspoons just so I have someone to talk to, it feels like I'm wearing a t-shirt that says "lonely old man.

There need to be more social opportunities for people like us - get togethers. We used to have more, it dropped off in covid and never came back.

The unseen side of caring is the loneliness. The comfort of the kitchen light going on. The sound of the bath running - knowing someone else is there.

Losing a sense of time.

Putting the needs of others first.

No time to be in pain. 

 The endless day, the day never ends.

Humour, you need humour and there can be laughter.

Between 2am and 5am is the hardest time.

How hard it is to go to bed without sharing your day.

No one to say, "you did a good job there", no one to share the difficult parts of the day with.

Following their involvement with carers, Rosetta Life made recommendations for the strategy and contract below: 

Recommendation: More opportunities for meaningful interaction:  All participants spoke of the importance of doing something that had meaning rather than just meeting for a chat. For example, the making of a poem/an artwork/ a song/ film. 

Response: In the new commissioned service as part of the consortium the adults' carers provider will be offering voice groups, singing and creative arts as a way to continue the work done by Rosetta Life, this will be provided by Wiltshire Music: Celebrating Age (opens new window) 

Recommendation: Important to include services for those who have been carers but after the cared for person dies, all support that might have been there disappears. This compounds the feeling of isolation location for everyone. 

Response: There is an expectation in the contract that all carers are to be supported by our Carers Together Wiltshire provider up to 18 months after their caring role has ended. 

Recommendation: Possible linking of grief and bereavement services with services for carers. 

Response: Another provider awarded under the consortium of Carers Together Wiltshire is Tell Mi: NHS and Local Authorities (opens new window) an online counselling safe, anonymous app expanding to supporting adults, alongside Dorothy house hospice for bereavement support. 

Recommendation: Better awareness for health and social care staff through fostering greater understanding and empathy of the experiences of carers. Carers to create a resource or be actively involved in a training day to ensure their voices are heard and their experiences are understood. A strategy to value carers is desperately needed.  

Response: A Wiltshire Council carers charter and memorandum of understanding which was coproduced with a carers champion and independent carer board member listed face-to-face training all social care staff as a priority. This includes carers having the opportunity to detail their lived experience to support social care staff to identify carers. A strategy has been created with a working action plan to be worked to throughout the length of the contract. 

Recommendation: A point of contact for crisis. During moments of despair carers felt they had nowhere to turn and were directed to the Samaritans.  

Response: In the digital element of the carers contract, there is an expectation for 24/7 access to support 365 days a year, using the advanced technology of Artificial Intelligence (AI) powered chat bots which are programmed to understand and respond to a wide range of queries, providing instant support and guidance all hours of the day. 

Recommendation: A carers champion in each town feels vital as a hub. Salisbury has a dynamic carers champion, and services feel much more connected here than elsewhere in the county. 

Response: This was identified as a priority in Wiltshire in the Wiltshire Council carers charter and memorandum of understanding, which is being completed alongside the Salisbury carers champion. There is a key performance indicator for the Carers Together Wiltshire providers to ensure carers champions in Wiltshire feel supported. 

Recommendation: Social and cultural activities for carers that their cared for can also attend, dementia choirs and art sessions were encouraged.  

Response: Carers Together Wiltshire has an extensive range of support for carers under the new contract including activities in which the cared for can attend 

Recommendation: Training for carers to get online. Some spent 20 years caring and not gaining the skills and now find themselves digitally isolated. How to re-enter the world after spending so long caring  

Response: Will be promoting our libraries services over the lifetime of the contract to support with getting online: Wiltshire Together: Tech made simple (opens new window) 

Parent carers 

RL worked with our Wiltshire Parent Carer Council (WPCC) to conduct engagement with our parent carers as they had managed to maintain a relationship over covid. 

Callouts for feedback and engagement were placed within the parent carer newsletter with also hosting family day events. 

Main responses advised of financial challenges and understanding where and how to access support with housing, cost of living crisis and educational support. 

The parent carers we met with are juggling and there is a sense of not asking or complaining as caring responsibilities are entwined with parenting responsibilities. "Asking for help can make you seem like you aren't coping as a parent

One mother commented that the opportunity to spend the morning with her child taking part in a structured creative and free activity was wonderful and would certainly like more opportunities.  

Overall, there was a feeling that you had to 'fight' for access to support.

Recommendations:  

Recommendation: The communications service that parent-carers receive from the council seems to be effective. This could be expanded with more digital and social media engagement and become a real hub for communication and the development of an offer of online social events for parent carers in the evening and some weekend family events at central arts spaces across the county. One parent had attended a session after seeing a paid advert on Facebook. Instagram is widely used as the preferred social media platform. 

Response: It has already been identified that online support is particularly beneficial to parent carers and our Carer friendly Wiltshire website Carer Friendly Wiltshire: Helping create Carer Friendly Wiltshire (opens new window) 

They will be supported with: 

  • what's on calendar
  • daily zoom sessions
  • wellbeing reflection
  • carer journey E-news
  • online chat
  • benefits calculator 

Response: Recognising and valuing the care and the labour involved in the care is important so that carers don't just see it as part of parenting but understand they are working hard and that it's recognised. A parent carer champion would be a great idea, but given that people are so stretched, perhaps a digital champion would work best - utilising AI and basing a digital persona on the lived experience of local carers. 

Response: This is a desired outcome with our carers champion launch and will be heavily advertised, there is an experienced parent carer on our Independent Wiltshire Carers forum feeding back carers voices to the commissioner and providing strategic oversight to Wiltshire Council initiatives.  

As well as a dedicated parent carer support worker has been recruited in the Carers Together Wiltshire consortium. This worker will have responsibilities such as: 

  • providing support calls, and wellbeing assessments for parent carers
  • offering 1:1 tailored support 
  • signposting and referring parent carers to other services
  • providing some group and peer support 
  • carrying out carers assessment for parent carers

Young carers

RL attended many school holiday activities created by an independent young carers charity to offer drumming and poetry sessions, which resulted in music and photography to introduce the theme of care-caring hands. 

See poem created with young carers:  

Vimeo: Help Me.Help You, Love Me 4 (opens new window) 

As well as existing creative sessions provided by an independent young carers' charity Community First/Youth Action Wiltshire: 

YouTube: Wilts YCs June 2019 - One Song - Shining Bright Together (opens new window) 

YouTube: YC Wilts Nov 2019 - Starlight (They Bring Hope) (opens new window) 

Recommendations:  

Recommendation: Developing the confidence of the group to reach a point where they feel skilled in working with artists to share their stories and raise awareness where they feel no one is listening - particularly school and wider society. Including Photography and music clubs/programmes. Response: Now that the independent young carers charity Community First/Youth Action Wiltshire which supported this work has been successful in the bid for young carers support, they have detailed how their approach will support with giving young carers the confidence to share their voices and continue to be involved in arts. Wiltshire Council have also committed to recruiting in house young carers school's worker, young carers advocacy worker and a young carers voice worker to create even more support which will work in partnership with the carers contracted provider.

Recommendation: Work with RL and the Wiltshire cultural teams to design an offer/programme that is structured, well-staffed, engaging and held in warm, clean, inspiring arts spaces/venues.  

Response: RL have since started working with the Kingston young carers to apply for national funding to design a young carers arts programme, this is to bring together young carers across England to make it a peer-peer exchange. 

Recommendation: Specialist, highly experienced staff supporting who offer clear structure, inspiration and understanding of complex health and safeguarding needs. Counsellors and trained therapists needed to support sessions. 

Response: From this recommendation the decision was made to split the unpaid carers contract into different lots with different elements of support, lot 1 is specifically to support young carers and young adult carers - this provider (Youth Action Wiltshire/Community First) has over 25 years of experience delivering young carers services and consistently raises £200,000 yearly. 

With the provider delivering: 

  • support planning 
  • 1:1 coaching and mentoring
  • individual development and self-help activity
  • respite and targeted workshops
  • internally funded 'talking therapy' counselling
  • conclusion 
  • using the materials created Wiltshire Council have since implemented: 
  • comprehensive unpaid carers contract for support 5 years old onwards
  • 4-year strategy to compliment the contract
  • implementation plan to compliment the strategy designed to be worked on throughout the lifetime of the contract
  • internal funding to support Wiltshire Council teams to support carers
  • the creation of the Wiltshire Council carers charter and memorandum of understanding
  • comprehensive carers assessor training based on how to conduct a quality carers assessment
  • creation of performance outcomes group for children and adults' data  
  • thorough key performance indicators
  • co-produced young carers assessments form 
  • creation of the Independent Carers Forum consisting of carers of different ages and support areas to feed carers voices to Wiltshire Council 
  • reinvigoration of the carers emergency card to support carers more with contingency planning

Wiltshire Council are confident that these changes will support unpaid carers' satisfaction rates and provide meaningful support through services and assessments. 

Please see the finished film at the end of the 4-month engagement piece, taking all materials from engagement sessions countywide: Vimeo: Caring around the Clock (opens new window) 

Georgia Tanner, Commissioner leading on unpaid carers - Resources Commissioning 

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Discover your local support in Wiltshire for families and young people with SEND, special needs and disabilities, from years 0 to 25. Services, advice and ways to feedback.

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