Charlie House Activity Programme
A story by Charlie House
We delivered Charlie House Activity Programme which provided a range of activities and short breaks to children with life-limiting conditions & complex disabilities, and their families, in North-east Scotland.
It gives families a break from their caring routine to enjoy quality time together and improve their wellbeing.
What Charlie House Activity Programme did
We delivered the Activity Programme for children with life-limiting conditions and complex disabilities, and their parent and sibling carers, in North-east Scotland. This project addressed the Better Breaks priorities, Complex needs and Sports and active leisure. In total, 186 people accessed this support; 47 children with disabilities, 50 siblings and 89 parent carers.
We delivered: 11 Family Activity Clubs, 7 Siblings Groups, 9 Parent Groups, 12 Holiday Clubs, 1 Teen Group, 2 Under 5s Groups, 1 Activity Short Break. We offered a range of activities to appeal to different ages and stages. Activities included; coffee mornings, graffiti art, therapy ponies, sensory disco, ice skating, farm visits, trampolining, laser tag and music therapy. They were delivered at venues in Aberdeen and Aberdeenshire, based on suitability of the venue and type of activity, to make it as accessible as possible for all to attend. They took place at various times; evening, weekends and during the week, depending on the activity and anticipated attendees.
The purpose of the project is to give carers a break from their caring routine, enable them to receive support, advice, have an opportunity to relax and improve their wellbeing and ability to carry out their caring role. It reduces isolation and gives families a chance to spend quality time together taking part in fun activities so they can truly enjoy being a family and make memories for the future. We expanded our Holiday Club provision which was a great success with high attendance and positive feedback.
We began to deliver a Teen Group and Under 5’s Group, both of which we have been planning for some time, but previously did not have the capacity. We have introduced activities for parent carers in addition to coffee mornings and held one ‘Dad activity’ which went very well, and we intend to offer more this coming year. Overall our project went to plan, we delivered activities that are popular with the families and introduced new ones. We were able to identify more accessible venues to widen our reach and encourage more families to engage. We have actively sought feedback from the families to inform future project delivery.
What Charlie House has learned
Forward planning, the families have extremely busy lives, with work and family commitments on top of their caring commitments. They must work around medical appointments and hospital stays and it’s important that they have enough notice of what activities are on offer and when. Therefore, we now plan activities much further in advance and communicate the details to families by email and on the Family Community Facebook page on a regular basis. We do this by communicating a monthly activity plan to the families in advance and then highlighting the individual activities again closer to the time.
Developing new activities, Many of the families have been engaging with us for several years now and the children and siblings are getting older and interests and needs change. To address this, we continue to seek new activities and venues, as well as repeating previously popular activities, so that families continue to have something new to try.
We have also introduced a Teen Group, Under 5’s Group and Dad specific activities as these were identified as the groups that needed more/different specific support and short break activities. We also intend to deliver an additional Activity Short Break to Kielder next year as the demand for the October trip was higher than the number of places available. To manage this, we prioritised those that had never attended and then those who had attended less often than others.
The second trip will enable us to offer this fantastic opportunity to an additional 18 families and offers more flexibility for those who need to secure time off work or accommodate other family commitments by giving them two trips to choose from. We now send out the information and sign up instructions much earlier so that families have time to book holidays and make appropriate arrangements.
Reaching out to and engaging new families: In addition to the short break activities Charlie House provides emotional and therapeutic support via the Children and Family Support Manager and medical support via a Community Nurse based at Royal Aberdeen Children’s Hospital. Some families access some aspect of this support but not all of it. This year we worked more closely as a Services Team to identify families that would benefit from more of the support we offer and supported them to engage. This is resulted in several families attending activities and the Activity Short Break to Kielder for the first time.
We have now identified more venues for activities in Aberdeenshire, as many of the families we support live out with the city, and this improves access to support. Gong forward, we will be offering monthly coffee mornings in both Aberdeen City and Aberdeenshire as well as other short break activities.
How Charlie House has benefitted from the funding
The Better Breaks funding was instrumental in us securing match funding from The Robertson Trust for the Activities Coordinator post. We secured funding in July 2018 to match the salary, national insurance and pension costs and they have committed this for a three -year period. This gives us a greater sense of security around the post and being able to continue to deliver this must needed project. Having the funding from Better Breaks also helped us to secure funding for the actual activities as funders felt confident in supporting us as they knew we had the member of staff in post to deliver the project as planned. The funding has enabled to further develop this project in response to the needs of the families we support. This has included delivering activities in a wider geographical area and deliver more age and need specific groups. We receive new referrals on a regular basis and this project enables us to support the families to engage by providing a variety of options and activities that best suits their needs. The Activities Coordinator has worked closely with our Volunteer Coordinator, who took up post in December 2018, to develop volunteering opportunities within the Activity Programme. The Activities Coordinator has been able to give guidance on what skills, attributes and knowledge a volunteer would need and what training and support they would require. The Volunteer Coordinator is now working on appropriate recruitment, training and on-going support for potential volunteers. Volunteers would add significant value to the Activity Programme, they would increase our capacity enabling us to offer more activities by attending the activities and supporting the team with admin and organisational tasks. We aim to roll out volunteering with the Activity Programme as an option this coming year.
30 children and young people with disabilities will have accessed one or more recreational activities during the Summer Club 2018.
We delivered 6 activities during Summer Holiday Club, some included two sessions, which provided 9 opportunities for children to take part in a fun recreational activity. The activities offered were, Critter Keeper, Duthie Park Ranger Service, Therapy Ponies, Adventure Aberdeen team building, Easter Anguston Farm visit and indoor trampolining. We sourced a mix of activities e.g. outdoor, sporty, nature, animals, to appeal to different interests, ages and abilities. This was the first time we had offered some of the activities, such as Therapy Ponies and Ranger Service, and they were very well received. Summer Club was developed following a trial last year and based on family feedback. In addition, we also ran Holiday Club sessions during the April and October school holidays. The Holiday Club activities were attended by 30 children. We had some cancellations due to illness/hospital visits, however, this the nature of the children’s fluctuating health issues and is to be expected.
As part of the Charlie House Activity Programme we delivered Holiday Club sessions during the school holidays to increase the number and variety of opportunities for children with life-limiting conditions and complex disabilities to take part in recreational activities with their peers. One child who accessed these opportunities was 13-year-old David Jones. David has Chromosome 18Q, global developmental delay, low muscle tone and mobility issues. David communicates through tonal sounds and facial expressions and has moderate hearing and vision loss and needs to be up close to see and hear. He wears classes and hearing aids, and needs longer to hear, process and respond. He needs one to one assistance and encouragement via music and song to be able to interact and play with others. We knew that trampolining was an activity that David really enjoys as he had an opportunity to try it some time ago. We also knew from feedback from other families that it’s a firm favourite but can seem impossible due to accessibility and due to the size/weight of some of the children they would require a hoist to move from their wheelchair on to the trampoline. We wanted to offer this opportunity to the Charlie House families and to ensure that families that previously could not have attended would be able to participate. We identified a trampoline park in Aberdeen, Jump In, that was fully accessible. When speaking to them we found out that the Manager is a Rebound instructor and fully trained to assist people with disabilities. We then secured funding to purchase two manual hoist slings in different sizes which would enable more children to participate. The trampoline session was attended by 30 Charlie House family members. David was able to safely access the trampoline where he happily remained for the duration of the activity. His Mum, Dad and 11-year-old sister Sarah took turns to bounce gently with David and Sarah also had lots of time to trampoline with her peers. Other attendees would come over and sit on the mats to interact with David and were also on the trampolines surrounding him and he was able to enjoy the noises and movements. David loved his session on the trampoline. He was very expressive throughout the session and was so relaxed he fell asleep once back in his wheelchair. It was evident that the parents had enjoyed their 1:1 time with David whilst also spending time with Sarah. Sarah clearly enjoyed the activity and spending time with old friends and establishing new relationships. The family spent time in the café area afterwards with other families unwinding and chatting. This was a great opportunity for David to take part in a group activity that he clearly loved with his family and peers. It enabled the family to create new memories, empowered them to participate in more activities with David and has given them confidence to try trampolining again, both with Charlie House and on their own. The family expressed that it was a real joy for the family to take part together and were appreciative for the opportunity.
120 children with disabilities, siblings and parent carers will report feeling happier and more relaxed.
In total, 139 carers (parent carers and siblings) and 47 disabled children accessed support via the Charlie House Activity Programme. We delivered a variety of groups and activities including Family Activity club, Siblings Club, Parents Group and an Activity Short Break. We also offered Under 5’s and Teen Groups. By providing activities for different ages, stages and needs, we were able to support the family members in the way that suited them e.g. gain peer support, have fun, relax, get advice, share experiences, spend time together as a family and get a break from their caring role. We used various methods to gain feedback and measure the impact and success of the programme. This included observation, informal face to face feedback, surveys, photos and voluntary feedback and quotes via our closed Family Community Facebook page. Together, with attendance figures, this demonstrated the positive impact of the programme for the parents, children with disabilities and their siblings.
We received a self-referral from a family who wanted to find out more about Charlie House family activities and support after seeing our website. They have a 7-year-old son, Ali, who has Wolfhirchhorn Syndrome, has severe global delay and is non-verbal. Ali is mobile but has a large buggy as he easily becomes tired. They also have a 3-year-old son, Kai. English is not the family’s first language and they had recently moved to Aberdeen from a small town in England and did not have any family or established social networks in in this area. Ali attends a local school for children with disabilities, however, he uses organised transport to get to and from school, so the parents haven’t had the opportunity to meet other families via the school. Being new to the area they are not familiar with places they can take the children which are accessible and inclusive for the whole family. The parents were keen to meet other families as they didn’t know anybody in the area, let alone families in a similar position as them. The Dad works from home which also limits his amount of day to day social interaction with other parents. They expressed that the services and opportunities accessible to the family in the area they previously lived were extremely limited, certainly not the level of opportunities that they now have access to via Charlie House. All the Charlie House activities, groups and support we discussed with them were completely new to the family. At their request we added them to our closed Family Community Facebook page so they could see the types of activities we had to offer and how the families are supportive of each other, often sharing experiences and advice. Within two weeks of meeting with them the family had signed up to and attended a ten-pin bowling session, which they had never tried as a family, and they absolutely loved it! They met six new families who they had never met previously. The parents have also attended a Charlie House coffee morning which enabled them to meet additional new families within a relaxed informal setting. The Mum then signed up to attend a forthcoming evening event for adult carers, a complimentary therapy session and a family ice skating session, again another first for them. The Mum has expressed to us on several occasion that this has been such a positive move as a family. They have access to services they never had before and are beginning to meet new families and have had opportunities to try things as a family, with their able-bodied child and with other parents. They are really enjoying watching the boys try new things and the boys are thoroughly enjoying making new friends. For the Mum attending these additional parental activities has allowed her to have a relaxing break from her caring role for a short period of time and she has been able to establish peer support relationships with other parents in a variety of new surroundings and settings.
15 parent cares will attend one or more Parent Group sessions throughout 2018/19.
We delivered regular activities specifically for parent carers. We offered coffee mornings and recreational activities that parents could attend as a couple or as a Charlie House group. This enabled them to relax and have a break from their caring role. For some this is the only chance they get for some time as a ‘couple’ not just as ‘carers’. We delivered a Dads only Brunch activity for the first time, as we found it was mostly Mums accessing activities, it was very successful with great feedback. In total 23 parent carers accessed these opportunities. In addition to this, we were able to offer carers the opportunity to attend other events with friends and adult family members that were gifted by our corporate supporters. This included beauty therapy treatments, a burns supper, music gigs, corporate football and ice hockey tickets. This gave carers a chance to spend time with their partner or friends and to build on friendships with other parents they have met through Charlie House.
The Booth family referred themselves to Charlie House. They have a 4-year-old son, Ben, with Lissencephaly Miller-Dieker Syndrome Epilepsy. Ben gets upset by loud or sudden noises and prefers to be taken away to a calmer quieter area to calm down. He has learning disabilities, physical disabilities, seizures, uses a wheelchair and is PEG/tube fed. Ben uses other disability aids, such as splints and is on regular medication. The Booth family also have a 1-year old son Joe. The family appeared quite anxious upon meeting the Charlie House Service Team. Whilst we were talking through all the groups and activities that we offer they expressed how fantastic it was that we offered new experiences for families and they had never even considered trying the types of activities we were offering, however, their anxiety was still evident. We were holding an ice-skating activity that coming weekend and we discussed the possibility that they could attend with Ben, who would be able to access the ice rink whilst still in his buggy. The family were in disbelieve that they could try this type of activity with Ben and although still anxious, were curious to see how it could work for them. On the day of the activity they met with the Service Team who encouraged them to take part. They were still very anxious, however, they had taken the brave step of coming along, which for this family was clearly a huge achievement and a step into the unknown. The Charlie House team supported the family throughout and assisted them on to the ice, as they were still anxious. These anxieties decreased very quickly once on the ice and we watched them skate round and round for more than an hour. Their happiness and relaxed demeanour was evident. Dad told us that Ben, who is non-verbal, expresses his happiness with smiles and by stamping his feet, both of which he did in abundance. This really helped build the family’s confidence and over time they felt able to attend our Activity Short Break for the first time. The family were supported to try zip sliding, canoeing and a boat trip, all things that they never even considered they could do as a family with a child with a complex life limited illness. You could see their confidence continue to grow during the break and the family went on to do more activities on their own. They now have memories that they can treasure for life and it has given the family the confidence that they can achieve what they first thought to be unachievable engaging with Charlie House and attending the family activities has been a real game changer for the family, it has opened endless possibilities that the parents would never have considered before and they have achieved things they never thought possible and the difference to them as a family is clear. Through the activities they have also been able to meet other parents experiencing similar situations, building their own informal peer support network. The family have gone on to attend other Charlie House activities and the parents feel motivated to re-engage with their own activities and hobbies such as running, the therapeutic benefits of which are well documented. The parents seem much more equipped and empowered to cope with their family situation and their child’s illness and have continued to engage with our support.
30 parent carers will report feeling better informed and less stressed.
We ran 8 Parent Group sessions in a relaxed coffee morning format. This enables the parents, mostly attended by Mums, to relax and chat and for us to share information and advice. We received very positive feedback from the attendees that these sessions are very beneficial in giving them a bit of ‘breathing space’ and to feel like they are not alone in what they are dealing with. We ran a Brunch activity solely for Dads as it was noted that they weren’t often able to attend the coffee mornings due to work and were less likely to come together as a group than the Mums. This was very well received and gave them time and space to chat and support each other. We held a Family Fun & Information Day where families could get advice about funding, fuel efficiencies and support offered by PAMIS. We use our closed private Family Community Facebook page to communicate with the families and share information about support available, we now have over 100 parent carers engaging with the page.
During the school Summer holidays, we held weekly Family Activity Club sessions. One family we support attended all the activities offered. The Ingram family have three children, Daniel aged 7 who has Spina bifida, is confined to a wheelchair, has no bladder control, is verbal and can drink but can’t eat solid foods. Daniels siblings are Sara aged 3 and John aged 11. The children attended most of the activities with their Mum only as their Dad was working, however he was able to join the family for one of the activities. The Mum expressed to us that due to the children’s various ages and abilities she found it very difficult to find activities that they could all take part in together and that accessing separate activities for each child in different locations simply wasn’t possible. This often meant that one or more of the children missed out and she found this very stressful to manage. Also, the cost of participating in different activities for each child was out with the family’s budget, however they were able to access all the Charlie House activities at no cost. The family participated in activities such as bug collecting, flower/veg planting, therapy ponies, trampolining and a trip to a local farm with an accessible playground. We arranged the activities so that every age group got something different from it and we selected venues where we had the luxury of safe spaces for the children to run around and have some of freedom, which the younger ones particularly enjoyed. At the activities there was ample space for Daniel to mobilise in his wheelchair independently and they spent time with families that they had previously met as well as new families. It was clear to see the confidence they gained when trying new things and meeting new people and how they embraced the opportunities as individuals and as a family. They took part in activities they had not tried before and we took lots of photographs to encapsulate the laughter, family moments, the friendships and the memories, which we shared with the family. The Mum shared what the summer activities meant to her on our closed Facebook page. She expressed that during the summer the activities were truly accessible for the whole family, which meant no was stuck watching from the side-lines, they could all have fun together which had a hugely positive impact on the wellbeing of the whole family. Family feedback: “We have had the BEST summer holidays! I can't even begin to describe the difference you guys have made to our family. I hope you know just what your hard work means to us. There is a stark difference between our lives before and after Charlie House. I used to dread holidays and how we'd fill the days and weeks. Activities that we can all participate in are few and far between, my husband is usually working, and I have no childcare for any of my kids. They used to get bored and frustrated and turn into tiny terrors which, in turn, drove me crazy and made me feel like a total failure. Holidays over the last year have been a wonderful mix of fun and exhaustion. We've made so many memories and experienced things we wouldn't have managed on our own. You guys make it so easy for us. We don't even have to plan! No need to make a hundred phone calls to try and find somewhere suitable. No worrying about the facilities available. No worrying about whether the "accessible" label on something is actually accessible. No effort at all! It's amazing going out knowing that we can just have fun together and it's even better to have someone else taking photos when our hands are full of kiddos. I absolutely love spending time with my 3 and I love that you make sure I can focus on them instead of the details. You have given us the gift of carefree fun and it means the world to me! Thank you”