Summary
Charlie House’s activities programme is made up of free, fully-accessible, inclusive activities for children with life-limiting or life-threatening conditions in NE Scotland and their families. The activities programme is designed our activities co-ordinators in consultation with the families.
What Charlie House Activities Programme did
Between April ’21-March ‘22 we delivered short breaks to babies, children and young people with complex disabilities and life-limiting conditions in NE Scotland. The Activities Programme is open to all families supported by Charlie House. Activities are advertised to the families and they have the option to sign up to them. 79 children with life-limiting or life-threatening conditions and 134 parents/carers took part. We delivered 20 in-person, 45 virtual and 16 postal activities. The in-person activities took place throughout Aberdeen and Aberdeenshire at different times of the day, on weekdays and weekends to increase accessibility. During the past twelve months varying Covid19 restrictions remained in place. As these eased throughout the year we were able to reintroduce in-person activities. We continued to deliver virtual, live, and pre-recorded sessions and postal activities, as feedback from the families had indicated they wanted this type of short break support to continue. Some shared that this support was valuable as, at times, it was easier for them to access and fitted with need. 2 new Children and Family Activity Co-ordinators have been recruited, they are experienced in providing an extensive range of activities, online & in person, in Aberdeen and Aberdeenshire. Both Children and Family Activity Co-ordinators, have recently completed level 1 and 2 in Makaton, allowing them to communicate, and develop activities, more efficiently for children that we support. We have increased our resource library and now have a range of Gairm slings, and a shower trolley, available for families to borrow. Unfortunately, due to COVID restrictions we were unable to hold our in-person Christmas party this year. Instead, we provided online activities over a weekend, allowing families to choose activities best suited to their children and drop in and out of sessions as they pleased. We offered sing alongs, party games, bingo and door stop elf visits. Feedback on the virtual Christmas party was extremely positive. The Charlie House Activities Programme addresses the complex needs, sports and active leisure, independence, diversity and under 5s Better Breaks priorities.
What Charlie House has learned
Project planning and budgeting
Throughout the year we have had to adapt to the ever-changing COVID-19 situation, to achieve this we have delivered a mix of in person and online activities.
To ensure that we were taking every possible step to keep children and families safe we issued all attendees with a Covid questionnaire which had to be completed and returned prior to anyone attending an activity. During activities we took extra precautions to ensure that all current guidelines were followed and adhered to.
The in-person activities took some extra planning to ensure that all Covid-19 restrictions and mitigations were complied with, for example, ensuring that spaces allowed for social distancing between children and families.
As always, the safety of our children and families has been priority and has on occasion led to some last-minute changes to activities due to COVID cases within attendees. We have continued to be adaptable and vigilant through these experiences.
Partnership working
We also experienced problems between vendors and mailing systems, which meant resources didn’t reach families on time to complete activities at the scheduled times. This taught us we needed be flexible and problem solve to find suitable ways of ensuring these activities were still able to be carried out by families. We overcame this by either rescheduling to a suitable time or providing a pre-recorded link to enable the families to carry out the activity at a time convenient to them.
Dealing with unexpected challenges or opportunities
Alongside the challenges faced with COVID-19 we were also faced with challenges of extreme weather conditions causing activities to be cancelled and rescheduled within quite a small-time frame. This taught us that no matter how prepared we are, some things are beyond our control.
How Charlie House has benefitted from the funding
Providing online activities allowed us to bring together families from different geographic areas for the first time. This led to an increased sense of community in the group. We have also researched and used new vendors to provide some of the online content and to expand to different areas for in person activities.
Project Outcomes
Outcome
Up to 83 children and young people with complex disabilities and life-limiting conditions will have the opportunity to attend and enjoy up to 24 activities throughout the year.
Results
79 Children with complex disabilities and life- limiting conditions have had the opportunity to participate in 62 activities. Including 15 postal activities and regular music therapy sessions. Activities have been a mix of online (29), on demand(2), in person (16) and postal(15).
In person activities have included cinema and bowling trips. Online we have had wizard workshops, parties, and music therapy sessions. Postal activities have included baking kits, bath bombs and sensory items.
Case study
Alex is a 5-year-old boy who has a diagnosis of a chromosome disorder which affects his physical and cognitive development. Alex also has a diagnosis of epilepsy and experiences seizures daily. Alex lives with his parents and his older brother and sister. The family joined Charlie House during the pandemic and until recently, they had never attended any in-person activities.
We have observed Alex enjoying the online activities, particularly our Halloween and Christmas parties. Alex was seen dancing and playing games with his older brother and sister. The family also enjoyed participating in some postal activities, particularly the buttery baking kits. Mum had shared pictures of Alex looking delighted with his finished butteries. Without the introduction of online and postal activities, we may never have had the opportunity to reach new families like this one and help them create precious memories like those mentioned above.
Prior to the reintroduction of our in-person activities, Alex had only known Charlie House through a screen at home. In-person activities have enabled Alex to meet Charlie House staff and other supported children and their families face-to-face, which he has been visibly delighted about. Alex is always enthusiastic to meet new people and this joy has been evident during our activities. The first in-person activity that the whole family attended was a 10-pin bowling session. This was a fantastic opportunity for Alex to meet a smaller group of other families. Alex appeared happy to have the opportunity to play with other children.
It has been very special to be able to see Alex enjoy the activities in-person and witness him enjoying the additional sensory experiences that online activities unfortunately cannot provide.
Outcome
Up to 160 parent carers will have the opportunity to attend up to 41 social activities to meet others experiencing similar challenges, share advice and develop friendships
Results
134 parent carers have had the opportunity to attend 65 social activities, these include our weekly coffee and catch-up meetings which allow parent carers to socialise online with each other and with Charlie House staff.
Case study
Kate and her family have been with Charlie House for 6 years. Her 15-year-old son James has a diagnosis of a rare chromosome disorder and requires 24-hour one to one support. Despite their extremely busy home life, the family regularly make time to attend our activities.
Throughout lockdown Kate appeared to enjoy the online and postal activities and often contacted us with kind messages of thanks. She expressed that she and her family were very grateful for the distraction and entertainment the activities were bringing throughout a very difficult time, and it provided a level of normalcy for them. Kate participated in and enjoyed activities such as our Christmas Wreath Making Workshop. This activity was posted out to the families and the session was recorded so they could build their wreaths at home in their own time. Kate, like many of the other parents who participated, voiced that they particularly enjoyed this activity as it was something new and different, that they could relax and focus on in their own time. Many stated that they felt proud of themselves after having created something for themselves and for their own enjoyment, which was a feeling that they do not get to experience often.
More recently, Kate has had the opportunity to attend in-person Charlie House activities which gives her more of an opportunity to socialise with other families who also have caring responsibilities for a child/young adult with similar complex medical conditions as James. She has attended recent in-person activities such as our paddle boarding session. Kate stated that she was grateful for the opportunity to try this activity as it was not something she would have normally done, and she got to experience this with her husband while their children were at school. The feeling of pride in herself for trying something new and her increased confidence were evident in Kate’s manner after the session.
Outcome
Up to 160 parent carers will have the opportunity to attend up to 22 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.
Results
134 Parent Carers have had the opportunity to attend 81 activities. These have been a mix of online, postal and in person. In person activities included things such as a visit to the Wreck-It rooms, as well opportunities to use corporate ticket to see the local football team. Online activities include wreath making, coffees and catch ups and rock and roll bingo.
133 Parent carers also have access to a private Facebook group which is monitored by Charlie House Staff. This safe space allows them to ask their peers any questions they may have at any time.
Case study
Last year, new parents Rachel and Scott joined Charlie House. Their daughter Chloe, who is now 2 and half years old, was given the diagnosis of a neurological condition and has been living with symptoms such as delayed development and gradual loss of eyesight. She also experiences regular seizures.
As a new mum this had taken a devastating toll on Rachel’s emotional and mental health. Rachel reported that she did not have any friends or family who had experienced caring for a child with complex medical conditions and though they try their best to support her she still felt lonely and isolated.
Charlie House has given Rachel the opportunity to meet and socialise with other parents/carers who have children with similar conditions to Lucy. Our weekly Coffee & Catch-Up sessions provide a safe space for Rachel to talk to others who have had similar experiences so understand the worries and emotions that Rachel is having. It also provides opportunity to ask other parents/carers advice on many different things, from recommendations on equipment like appropriate wheelchairs to providing advice and reassurance on how to cope with the range of emotions that they can experience.
Outcome
Up to 83 children and young people with complex disabilities and life-limiting conditions, and 160 parent carers will have the opportunity to attend up to 19 social activities and short breaks which may reduce feelings of stress and isolation and improve feelings of wellbeing.
Results
79 Children and 134 parent carers have had access to over 150 activities. These included weekly virtual coffee and catch ups and twice monthly music therapy sessions.
A wide range of experiences were on offer throughout, with activities held online while others were in person. Having the option to attend online activities has allowed parent carers and children to socialise with others from different geographical areas.
There has been the opportunity to take part in online bake-alongs, paddleboarding, bowling and cinema trips. The variety of activities available has allowed families to spend time socialising in different ways. In total there has been access to 15 postal activities ranging from baking kits and home knits to sensory items and pamper packs.
Case study
Michelle and John are parents to 4 children, their eldest child Ryan, is 13-years old and has a diagnosis of Cerebral Palsy and epilepsy. The family has been with Charlie House for 6 years.
Ryan particularly enjoyed our online parties such as our Halloween Disco, the online Christmas Party, and our Rock n’ Roll Bingo sessions. With the help of his parents and younger brother, Ryan was able to participate in party games and dancing. The feelings of delight and joy were evident in Ryan’s facial expressions and laughter as his mum was dancing with him around their living room and his little brother was wrapping him in toilet paper for the “Halloween Mummy Game”.
Since resuming in-person activities, the family have enjoyed getting involved. The parents have appreciated getting the opportunity to socialise with other parents. Ryan has also benefitted from socialising with other children. The Charlie House in-person activities have alleviated most concerns that the family have about taking Ryan out to events/activities. For example, they do not have to worry about accessibility or safety as we assess all aspects throughout the organisation and planning of the activities. This allows the family to focus on getting themselves ready for the activity and then to concentrate on the excitement of the activity without having to worry about any of the extensive planning that is needed for each activity.