Charlie House Activity Programme
A story by Charlie House
The Charlie House Activities programme delivered regular activities to benefit babies, children and young people with life-limiting conditions and complex disabilities, their parent carers and siblings, in North-east Scotland.
We support them to maintain their caring role and improve their well-being.
What Charlie House Activity Programme did
We delivered the Charlie House Activities Programme for children with life-limiting conditions and complex disabilities, their siblings and parent carers, in the north-east of Scotland. The activities were accessed by 130 parents, 69 siblings and 71 children with complex conditions.
We delivered: 19 Family Activity Clubs, 11 Siblings activities, 8 Parent Carer activities, 10 Holiday Clubs, 10 Under 5’s activities, 24 Coffee & Catch-ups, 1 Activity Short Break.
Activities took place in Aberdeen City, Aberdeenshire and Moray. We used a variety of venues depending on the activity and activities were held at weekends and, during school holidays, throughout the week. We met the following priorities, complex needs delivered fully accessible activities that could be enjoyed by the child with complex medical conditions and the whole family, enabling them to have a break from their caring routine and make memories together
Sports and active leisure, we organised a range of different activities across all the groups including sport and outdoor leisure activities e.g. horse riding, paddle boarding, ice skating, indoor wall climbing and rugby tots, and Independence as we supported families to attend activities where they could meet others, build peer support networks and make friendships which have flourished beyond Charlie House activities.
P6 Under 5s as we significantly increase our provision focused on those aged Under 5. We held 10 activity sessions including soft play, sensory play, music sessions and a rugby tots’ session
Highlights this year included establishing an Activities Volunteer project which has added considerable value to the programme, we have now recruited and trained 16 volunteers to assist with the Activities Programme. We secured funding to purchase Gairn Manual Slings, a mobile hoist, sensory toys and two iPads, all of which we utilise at activities and lend out to families. We tried new activities to great success e.g. boat/dolphin spotting tours, family photo portraits, accessible horse & carriage rides.
What Charlie House has learned
The importance of continued feedback, the families are at the heart of our service and we have always sought their feedback and suggestions to ensure we’re meeting their needs. This year saw us make some changes to our activities in response to feedback which seen very positive results and highlighted the importance of continuing to take feedback on board and always striving for improvement.
Examples of this are: as the siblings have gotten older, we identified a need for different activities to appeal to their age group and established a ‘teen group’ in addition to the Siblings Group. However, we found the ‘teen’ label too restrictive and resulted in fewer attendees than anticipated. Therefore, we decided to incorporate this into the main Siblings Group by increasing the number of activities and ensuring we offered a variety to appeal to different age group.
This year for example we offered an indoor inflatables experiences that appealed to a younger age group and Segways which were more suitable for the older age group. This has worked well, and attendance has increased.
We trialled recreational activities for the parent carers to enable them to have a break from their caring routine which had a great response so we increased it this year to include activities such as crafting workshops, yoga, escape rooms experience and a group meal. These were attended by a much wider group of parents, particularly some Dads who had not engaged as much previously. We also increased the coffee & catch-ups to two per month and ensured they were split between Aberdeen city and Aberdeenshire/Moray. This again was as a result of feedback and has resulted in more parents being able to attend and build stronger links with the community local to them.
Overcoming geographical challenges, our services and activities are available for families living in Aberdeen city, Aberdeenshire and Moray, with 40%, 56% and 4% of carers living in these areas respectively. Therefore, to increase access and maximise opportunities to participate it is important that we offer activities in all these areas. This year we actively sought new activities and venues across a wider geographic area, asked families for suggestions and build relationships with businesses local to those areas. This has resulted in us establishing a relationship with Christies of Fochabers, who now provide a venue for coffee & catch-ups free of charge. Some areas of Aberdeenshire & Moray are quite a distance away, for example, Christies of Fochabers is a 1.5-2 hour drive from Aberdeen city.
The Activities Coordinator and Children & Family Support Manager worked collaboratively to ensure they use time most effectively when travelling greater distances to deliver support and activities. For example, providing additional support to families while at activities or using time before and after an activity to explore other potential venues nearby.
Adapting to change, at the start of each year the Activities Coordinator creates a project plan with anticipated activities, number of attendees, budgets etc. This enables us to communicate with families about the activities in plenty of time, which is better for them. However, from time to time circumstances out with our control can change, and we have learned the importance of being able to adapt quickly so that families do not lose out. This can include venues or activity providers no longer being available, more families wishing to participate than anticipated therefore requiring additional sessions to be held, children becoming unwell and families/parents having to cancel at short notice.
As a result of these experiences we try to keep activities start/end times as flexible as possible, established good relationships with various companies so that they allow us to change bookings if required and offering additional activities alongside the main activities to increase choice or reduce the pressure to join in if a child is not having a good day.
The biggest change we have encountered is as a result of Covid19 since the lock-down began, we have seen an 80% increase in requests for support from our families. Many families have been instructed to isolate for 12 weeks so are unable to receive carers into their homes at a point when they have additional demands with siblings at home in need of support and attention.
We have had to change from face to face support to online and phone support. We have also arranged delivery of 40 isolation packs which include sensory toys, games, arts & crafts and pamper packs; delivered disposable gloves and hand sanitiser; and made available pre-recorded informative videos and on-line activities and resources.
This has been an incredibly challenging time for the families as they have additional concerns around the safety of hospital visits, cancelled appointments and limited access to medical care due to demands in other areas, and we’ve continued to adapt our support to meet their needs. Feedback has been crucial during this time as the families will face different challenges and, as it is an unprecedented situation, we are unsure of how it will unfold. We are currently taking it week to week, and we have several online activities and resources we can offer depending on feedback received.
How Charlie House has benefitted from the funding
Having Better Breaks funding has enabled us to continue to deliver and expand the Activities Programme. This has allowed us to try new activities and methods of communicating with families, introduce a very successful Activities Volunteer project supported by the Activities Coordinator, increase the number of activities we can offer and accommodate the rising number of families who require our support. We are continually monitoring and evaluating our service and we use the learning to better meet the needs of the families and to work more cohesively as a Services Team and with other local organisations to ensure there is no duplication or gaps in service provision. Having funding for the Activities Coordinator post secured from Better Breaks, helps us to meet the requirements of The Robertson Trust who match fund the post, and to secure other funding for the cost of the actual activities. Being able to demonstrate a commitment from funders helps us to plan our future provision and to build our reputation locally as we can deliver on what we have planned. This year the Activities Coordinator has undertaken training including, a two day Beginners Makaton course, Self-harm Awareness, Mental Health First Aid for Children and First Aid in the Workplace. This benefits the Activities Programme and families directly, but also adds value to the whole organisation as we now have those skills and knowledge in house. It has also helped to strengthen our relationships with local companies who support us. Many wish to support the families in a more direct way in addition to or instead of fundraising. As a result, we have been able to secure additional activities for the families at no cost to Charlie House. This has included season tickets for Aberdeen Football Club, complimentary beauty treatments and tickets to Disney on Ice, Strictly Come Dancing, Bill Bailey, Proms in the Park and the HMT Inverurie pantomimes. The companies appreciate being able to see clearly how they have helped the families, and this makes it more likely that they will continue to support us in other ways.
Up to 50 children and young people with complex disabilities and life-limiting conditions will have the opportunity to attend and enjoy up to 30 activities throughout the year.
71 children with complex disabilities and life-limiting conditions accessed fully accessible activities, including up to 19 Family Activity Club sessions,10 Holiday Club activities,10 Under 5s activities and one Activity Short Break to Kielder Forest Park. We offered different types of activities to appeal to different ages, stages and abilities. For example, planetarium experience, therapy ponies, harbour dolphin tour, messy play and trampolining. Many of the children had not experienced these types of activities before, however, we ensured they were fully accessible and safe, and we supported parents to have the confidence to try them. Some families have gone on to do these activities again in their own time as they could see how much their child enjoyed them. We used surveys, Facebook polls and information conversation with families to ascertain which activities were of benefit, how they benefited and what other activities or support they would like to see offered in the future.
The Taylor family were referred to Charlie House in May 2019. Mum told us that the family were feeling isolated especially because, as a single parent, she struggled to find activities that the whole family could participate in together and she couldn’t be in two places at once. Mum has two children Claire aged 7 and Chloe aged 10. Chloe had a neonatal stroke, she has mesial temporal sclerosis, drug resistant epilepsy, complex partial and generalised seizures with previous episodes of status epilepticus. She has electrical status epilepticus during sleep, autism, learning difficulties, mild right sided weakness and fatigue. Due to this, Mum was worried how Chloe might cope in large group settings. We visited the family home in Aberdeenshire and talked though all our services and activities. Mum is quite shy, and it was quite overwhelming at first, but with a little support she couldn’t wait to get started and take both children along to the activities. Chloe can walk but gets tired every easily so sometimes relies on a wheelchair. However, we ensured mum that all our activities are fully accessible so this wouldn’t be a problem. The activities are usually around 2 hours long, but most are structured so that families can arrive and leave when it suits them, and this takes away any time pressure. This was perfect for Chloe, sometimes she slept in the car on the way there and was feeling refreshed for the activity, or if she felt tired during the activity then they could leave without anyone in the family missing out. We often use an adult day centre as a venue for activities. This worked well for Chloe as it has a sensory room that she could use to enjoy a calm sensory session, or simply have a lie down with mum, if things became too loud or she needed some time out. Mum also felt reassured knowing that her other daughter, Claire, could stay with our staff or other siblings and carry on with the activity. The family attended a dolphin boat tour, adapted ten pin bowling, a therapy pony session, Disney on Ice, a critter keeper session and our Christmas party. Claire has been able to attend a horse-riding session with Siblings Group as mum was able to stay with Chloe and watch. Chloe was able to meet some ponies separate to the main activity and could go to the car with mum when she wanted to sleep. This meant Claire could stay for the duration of the activity and have time with her friends, which made a big difference to her. The harbour dolphin boat tour was a real standout for the family. Chloe loved it, you could clearly see her enjoying the sensory experience of the wind blowing, the spray of salt water, the sound of the seagulls and the motion of the boat. We sang songs from the Little Mermaid and when she had a chance to ‘drive’ the boat she became excited and was verbalising, shaking her hands and making lots of happy expressions. We took some photographs with mums’ own phone, so she had a keepsake from this very special day. Over the course of time we have seen mum really come out of her shell, not only during family activities but also at the Coffee & Catch-ups. She has felt much more confident in going out and about with both children and taking part in activities that benefit both Chloe and Claire, who is establishing new friendships. We have observed a real change in the way Chloe is adapting to different activities and benefiting from the new experiences and environments.
Up to 70 parent carers and 60 young carers (siblings) will have the opportunity to attend up to 69 social activities to meet others experiencing similar challenges, share advice and develop friendships.
130 parents and 69 siblings attended activities, enabling them to meet others, share information, and develop peer support networks. They got a break from their caring routine which improves well-being and reduces isolation. We achieved this by expanding the activities we deliver. This year we increased the range of activities for siblings by delivering 11 activities such as paddle boarding, Segways, horse riding. We doubled our Coffee & Catch-up sessions to 24. We introduced more Parent Carer activities, such as weaving workshops, yoga and an escape room experience followed by dinner. We also delivered 10 Holiday Club activities and one Activity Short Break, where families could spend time together and with other families. This helped families to feel refreshed and recharged, supported and listened to, and better able to continue with their caring role. This, combined with access to fully accessible activities, also improved the well-being of the children with complex conditions.
We received a referral from a family in May 2019. They initially found out about our services from the Charlie House Nurse whilst in neonatal in 2017 and later met a family at a toddler group who were receiving support from Charlie House, at that point they made a referral to our services. The family have a 3-year-old daughter called Sophie. Sophie has Infant Hypoxic Ischemic Encephalopathy, which is a type of brain damage that occurs when an infant’s brain doesn’t receive enough oxygen and blood. She has Spastic Quad cerebral palsy, is partially sighted and has seizures. Sophie cannot sit up unaided and cannot walk. Mum was also pregnant at the time and now has a 9-month-old boy, Paul. Our referral form helps us to identify what support the family needs and wants and what they would like to achieve. In this case, they indicated they would like to find out more about our Activities Programme, including the Activity Short Break, family support and opportunities to make memories. They highlighted that they would like to meet other families and increase their confidence in taking part in activities and having difficult conversations. When we initially met mum, she was quite chatty but spoke quietly and listened carefully while we explained some of the activities we could offer, some of these were things they had never done as a family or thought would be possible for Sophie. Within a short space of time the family had attended several activities. Mum actively participated at the Coffee & Catch-ups, sharing her stories and experiences with other parents. The family attended the Under 5’s group, which was a sensory activity, and Holiday Club activities, such as the adapted horse and carriage rides. It was clear to see how much Sophie and Paul were enjoying themselves, they could often be heard giggling together during the activities. They also attended a trampoline session as a family. With our support they were able to try Rebound Therapy where they could see how much Sophie benefited from the experience, this gave them the confidence to try it again out with Charlie House and are now looking into having private sessions. Mum even suggested an activity for the families that we had not done before. As a result, we organised a walk around the scenic grounds of Haddo House followed by a chance to sit and have a coffee together while the children played, Sophie and Paul loved the sensory experience of the swings and the fresh air. Sophie and Paul have had the opportunity to enjoy activities that they might not have otherwise and can continue to have new experiences as they get older. Both parents have embraced the Parent Activities, Mum has participated in a weaving workshop and singing sessions where she had the chance to get her creative side out. Dad has attended some AFC football games with other parents as Charlie House were gifted season tickets. They have both benefited greatly from meeting other parents and spending time out of the home and getting a break from their caring routine. Mum has been a great contributor to our private family Facebook page, a safe and private space to find out about activities, add photographs and comments and participate in conversation with other families. Mum often posts photographs and feedback after the activities and participates in surveys and discussions. We have seen Mum’s confidence growing as she attends more activities and interacts with other families, she is especially mindful of new families and always makes them feel welcome, having been that ‘new’ family not that long ago.
Up to 70 parent carers and 60 young carers (siblings) will have the opportunity to attend 47 activities and have a short respite from their caring role, and access advice, information and support from their peers and Charlie House staff and volunteers.
130 parents and 69 siblings accessed activities designed specifically for their needs this year. This included 24 Coffee & Catch-ups, 8 Parent Carer activities and 11 Sibling activities. These are activities they could attend without their child with complex conditions, giving them an opportunity to meet others experiencing the same challenges, develop peer support networks and genuine friendships out with Charlie House activities. Some of the Siblings keep in touch and have had sleepovers at each other’s houses. The activities are an excellent opportunity to share information and advice and get support from Charlie House. The private family Facebook page, managed by the Activities Coordinator, is very active, with parents regularly posting comments/questions, giving feedback and passing on information to each other. By holding activities in different geographical areas, it has enabled families to connect with others living locally to them, further building their support network.
This family have been involved with Charlie House since 2016. Within the family there is Mum, Dad, James aged 14 and Anna who is 12. James has Chromosome 18Q, Global developmental delay, low muscle tone and mobility issues, hearing and visual impairment. James requires one-to-one hands on hands support to help him interact and play and lots of encouragement and responds well to music and song. James communicates through tonal sounds and facial expressions and uses switch. The family have attended many activities over the years, however, there has been a significant increase within the last year and in 2019 the they have attended Family Activity Club, Holiday Club and Anna has attended Siblings Group activities. This year alone the family have enjoyed, ice skating, Lego brick live, ten pin bowling, Jump In trampoline park, a sing and sign session, Disney on Ice and our Family Christmas Party. With the Sibling Group Anna has attended a pamper party, tubing, horse riding. paddle boarding, Innoflate inflatable adventure park, rock climbing, Segway experience and a singing, dancing and acting workshop, which was Anna’s suggestion. The family had never had the chance to try some of these activities before so were brand new experiences for them. The family also attended the Activity Short Break to Kielder forest park in October. The whole family, and Anna in particular, have had many opportunities like this to socialise with other families and enjoy activities out with their caring role. This year we offered some activities for the first time, such as horse riding and paddle boarding for siblings, and these offered some great chances to work together as a team and support each other. The paddle boarding was a big hit, we have never seen an activity where the siblings laughed as much as they did and there was great enjoyment and encouragement from the family members who watched from the harbour. Any initial worry that the parents may have had watching the sibling paddling out to sea quickly turned to laughter. Like many of the siblings, Anna’s confidence has soared with each new activity and as a result of taking part in the activities she has made some strong friendships with other siblings. A big step for the family was when Anna had a sleepover at the home of one of the other siblings. A sleepover can be huge for families like Anna’s and it’s significant cannot be underestimated. It must be acknowledged that your sleep might be disturbed, or you may see a child have a seizure for example. Some siblings may choose not to tell school friends that they even had a sibling, as they may go to different schools and may fear being an easy target of bullying, and therefore would not consider having a school friend stay as they do not get the peace and privacy they may require. Having a sleepover was a huge milestone for Anna, it enabled her to have time with her friend and for mum and dad to have some time with only James, knowing Anna was enjoying herself. As important as it is for the family to spend quality time together making memories, it’s equally as important for them to have time apart, doing things they enjoy and building their own peer support network. The Activity Programme achieves this by introducing them to others facing the same challenges and building their confidence in trying new things and discovering their own interests and skills.
Up to 63 children and young people with complex disabilities and life-limiting conditions, 60 young carers (siblings) and 70 parent carers will have the opportunity to attend 24 social activities and short breaks which may reduce feelings of stress and isolation and improve feelings of well-being.
71 children with complex conditions, 130 parent carers and 69 siblings accessed support via activities. Activities were designed to support each group individually and as a family unit and were tailored to meet the needs of the families. Activities enabled families to relax, have fun and, crucially, make special memories together. They were able to meet other families who truly understood their lives and could provide peer support. It helped build their confidence in going out and trying activities they never thought possible for their child. Holiday Club helped reduce isolation at a time when families were typically ‘stuck’ at home and give them something to look forward to. Providing activities free of charge reduced financial stress and making arrival times flexible took away time pressure. Incorporating therapeutic activities such as yoga, craft workshops and massage workshops helped participants to feel more relaxed, lessened feelings of stress and improved their well-being.
The Russell family began engaging with Charlie House in 2014. The family includes Mum Lisa, Dad John, Ben aged 6 and Ami aged 9. Ami has Cerebral Palsy; she can verbalise and bum shuffle but requires a wheelchair when outside the home. The part of her brain that controls her impulse control is damaged so she has no fear or thought process and can, at times, lash out. Over the last couple of years, we have been expanding and enhancing activities for siblings and the whole family and this year we have really focused on parental support and activities. This is to allow parents the opportunity to have time out, as a couple or as individuals, and gain support to improve their well-being and maintain their caring role. The Russell family have really embraced these opportunities and have enjoyed time together, on their own and with other parents. They have been able to recharge and reconnect with themselves and each other out with the demands of caring and day to day family life. Mum, Lisa, has enjoyed some time to herself at a beauty salon and enjoyed a few short beauty treatments, which she loved, but wouldn’t normally prioritise. Lisa and John used tickets, gifted to Charlie House, to see a comedian together and attended an escape room experience and meal with the Parent Carers group. This was a great success with parents enjoying a night out together as a couple, but also having the opportunity to interact with other parents. Having met at activities, Lisa and another Mum now go walking together and are regularly in contact. However, the Dads had never met, and this activity was a nice opportunity for them to sit, eat and socialise with others. As a parent, Lisa is used to being asked how everyone else is, but this time has enabled her to really exploring her feelings, created a safe space to express herself and have the opportunity to spend time on herself for a change. In addition to the activities, Lisa has been having one to one support sessions, giving her the opportunity to share her worries and concerns, to vent her frustrations and a chance to talk about herself. Tips and techniques have been shared to help with certain situations concerning Ami and Ben, and Lisa has told us the difference this has made and how much calmer things are at home. We have worked together to get more respite for Ami, which will also have a significant impact on the family, and we have worked with the school to help Ben which is also having a positive effect. The family have also attended several activities together, including trampolining, the family Christmas party, a sensory disco, horse and carriage rides, ten pin bowling, Macduff Aquarium, Aberdeen harbour dolphin tours and the pantomime. They had family portraits taken by the Activities Coordinator, who has photographic training and made it a relaxed and natural setting, giving families lovely photos and memories to keep. They attended a family massage workshop together, learning skills they can now practice on each other at home. Ben has attended Siblings Club activities including, a science session, horse riding, a soup making workshop a and a singing, dancing and acting workshop. In addition to attending activities, Ben has been receiving support for managing feelings and working on his confidence. The combination of activities and one to one support has made a real difference to the family’s life. Lisa feels much better knowing the children can enjoy themselves at activities and are getting the support they need, while she feels supported by Charlie House and other parents and is more able to cope with the challenges the family face. Lisa and John have benefited from more time together and with other parents, giving them the time to relax and recharge, ready to continue with their day to day caring routine.