Charlie House Activities Programme
A story by Charlie House
The Charlie House Activities Programme delivers a range of inclusive, fully accessible activities for children with complex disabilities and life-limiting conditions, and their families, in North East Scotland.
We delivered activities for parent/carers as well as extra activities in school holidays.
What Charlie House Activities Programme did
Between April ‘20 and March ‘21 we delivered short breaks to babies, children and young people with complex disabilities and life limiting conditions in North East Scotland. The Charlie House Activities Programme is open to all families supported by Charlie House, during this time 79 disabled children and 163 parents/carers took part. Due to Covid-19 the children we work with, and their families, were shielding so the activities were all virtual, available on our private Facebook page and via email and a shared google drive. We delivered 67 live activities, 88 on demand activities and 79 postal activities with 1604 items sent out. We also saw a 200% increase in interactions within our private Facebook page for the families.
When lockdown and shielding were announced we had to revise the delivery method for our programme overnight. To move our offering online we bought filming equipment. This enabled us to connect with the families, ensuring we continued to provide a break from their caring routine.
Within 24 hours the team had switched our services to a remote model offering online activities, and online and phone support to ensure the families continued to be supported. Moving our programme online allowed us to bring everyone together irrespective of their location. We also found that the on demand activities were welcomed by the families as they could do them at a time convenient to them. We intend to continue providing virtual live and on demand activities alongside physical activities in the future.
To extend the range of online activities we undertook the following: provided Makaton training for our Children and Family Services volunteers, participated in NSPCC Child Protection training, online wellbeing seminars, Mini Me yoga training. Inspiring Breaks Toolkit training programme. We can talk fundamentals of compassionate care to support children and young people presented to hospital in mental health crisis, online safety awareness training delivered by Aberdeen City Council child protection agency. Our Programme addresses the complex needs, sports & active leisure, independence, diversity & under 5s Better Breaks priorities
What Charlie House has learned
Project planning and budgeting - The families’ needs mean in person activities must be researched and planned ahead to ensure they are accessible to all. Planning throughout lockdown has had its challenges. Children at home meant more content and activities needed to be created. When we applied for funding from Better Breaks we had planned and costed for physical activities but when we changed to virtual, we had to find new virtual activity hosts and vendors and plan, film and edit content, and budget for posting items to families to help them through lockdown. In addition, at times, different areas we cover had different lockdown restrictions.
Covid-19 meant that things changed rapidly and frequently so we had to be more fluid, constantly reviewing plans according to the current guidelines and adapting our plans accordingly. We learnt to be more adaptable and responsive to changes, quickly implementing new plans and researching and creating/filming content to ensure continuity of provision for the families we support.
Reaching out and engaging with new families - During lockdown we had 6 new family referrals. Although we have not been able to meet them physically, we have done so virtually using skills learned during lockdown. Once the families had completed the paperwork necessary to join Charlie House, we were also able to immediately give them access to our new library of on demand content as well as connecting them with other families via live activities and sending them postal activity kits – postal activity kits include all the items needed either to join in with an online event or to undertake an activity at home.
We learnt that this approach was necessary to ensure that access to equipment or ingredients was not a barrier to families joining in with activities and benefitting from the support we are providing. We also had to find other ways of communicating with the new families, normally we would meet them at physical events and have the chance to talk to them during the session, this does not work when the event is virtual. Instead, we have used other tools such as messenger to check in with them and begin getting to know them better. The mum from one of the new families, who has only known Charlie House during lockdown, has started her own fundraising for Charlie House because she is appreciative of the support she has received online.
Dealing with unexpecting challenges or opportunities - Covid was about as unexpected as you can get. We quickly moved our offering online, staff had to learn new ways of working including creating content to be shared with the families, this encompassed coming up with a varied content plan as well as overcoming technological challenges of filming, editing and uploading content. We intend for many of the changes we implemented to remain in place even once physical activities can safely resume.
Over the course of the last year, we have found that more companies now provide virtual activities, and this works well for the families we support, this includes the Music Therapy sessions as well as the virtual science and Christmas parties. For some families this can be a preferred option because they do not have their own transport or because it is a challenge for them to get everyone in the family to an activity. For others, online activities will sometimes be preferable because the child with the life limiting condition can join from their bed if that best fits their needs at that time.
How Charlie House has benefitted from the funding
The funding from Better Breaks allowed us to deliver the Charlie House Activities Programme and, in light of Covid-19, to move it from a physical to a virtual offering. Our virtual activities were made available to all the families we support across Aberdeen, Aberdeenshire, Moray and Orkney . During normal circumstances families would travel to Aberdeen or Aberdeenshire to attend activity sessions. Virtually, you can reach more families in more remote areas, something which has been a huge positive. For some of the families we support being able to participate in an activity from bed or a space most comfortable to them, whilst being tube fed for example, has been a positive. We have learned new skills behind the camera as well as in front, something we were not too familiar or confident with before. We have also learnt how to run successful groups online – this was a huge change, both for us and for the families we support. It took time, especially with younger ones who want to talk together but could not always hear each other (this is something that takes more practice when being done via a screen rather than in person), however we persevered together and as a result all participants have the space to share and talk. While we were not intending to implement a new service in some ways this is exactly what we have had to do. Pre Covid, our in-person activities would often use resources which were handed out and used during the session and which were then collected in at the end. To deliver similar sessions virtually we discovered that we needed to source items which could then be sent to the families for them to keep and use at home. Better Breaks funding was instrumental in enabling us to achieve this.
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.
79 children with complex needs had the opportunity to participate in over 200 activities, both live and on demand. The emphasis was on fun for both the live and on demand activities. The live activities also allowed the children to see and connect with others taking part in the same activity, helping to maintain their friendships when they had to stay at home due to lockdown and shielding restrictions. The range of activities included music therapy sessions, live bake-a-longs, on demand sensory activity videos, on demand Makaton sing and sing, Makaton stories, virtual magic shows, science parties, doorstep elf visits at Christmas time and Critter Keeper sessions. We also sent a variety of ‘at home’ postal activities (e.g. sensory items, books, baking kits, Halloween party kits & craft kits) which gave the children the chance to try different activities such as baking and crafting thanks to resources provided by Charlie House.
Jane is aged 3 and a half. She has Cerebral Palsy, is partially sighted, and has regular seizures. She lives with her mum and dad and her 6 year old brother. A relatively new family to Charlie House they had attended some in person activities including a visit to a trampoline park, our 2019 Christmas party and a scavenger hunt prior to lockdown. The family said that they enjoy the ‘on demand’ as well as the live content. Jane sometimes attends the family activities, including Family Bingo but Jane noticeably enjoys the Music Therapy sessions the most. The online music therapy sessions began January 2021 when lockdown was ongoing, and children were not at school or nursery. Jane and her family had not previously attended the physical Music Therapy sessions prior to lockdown as one had not run in the short time between the family joining Charlie House and lockdown starting. Jane regularly attends our online fortnightly music therapy sessions. Jane is nonverbal but you can observe changes in her facial reactions and body language throughout the activity. Mum often helps Jane hold or shake different instruments*, constantly changing the sensory experience for Jane. When Emmeline, our Music Therapist, sings the ‘Hello’ song and sings Jane’s name, or when she sings a song that Jane recognises, Jane’s movements and facial expression evidence her enjoyment in the session. Regular sessions mean that Emmeline has got to know the families who usually attend well, and she remembers the children’s favorite songs to sing. Jane’s Mum has shared photographs from the sessions on our private Family Facebook page as well as sharing how much Jane loves the sessions. The family has also received 29 postal activities throughout lockdown. They have been sent items which enable them to spend time doing something together, the items which have been sent to the family include art projects, science kits and baking supplies. "Jane is partially sighted so activities online would usually be difficult for her to join in with. However, Jane loves all kinds of music and noisy instruments, so Emmeline's music sessions are perfect for her. Emmeline is so smiley and friendly, and I love how she personally sings hello to each child at the beginning of each session. She takes requests from the children so they can hear their favorite songs. Jane may be nonverbal but her expressions and smiles she gives while being supported by me to join these sessions shows just how much she enjoys them. Thank you, Emmeline, you do a great job." *Jane’s family had their own instruments but we were able to purchase and send instruments to families who needed them.
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.
163 parent carers/95 siblings had the opportunity to participate in over 200 activities. Weekly virtual coffee and catch ups enabled the parents/carers to meet up, virtually, and benefit from peer support. We provided activities focused on the parent/carers wellbeing e.g. a ‘Fitness Guy 10 week lean and learn’ subscription. The Fitness Guy subscription helped the parent/carers to focus on their own health and wellbeing while learning about nutrition and fitness. Other online activities, e.g., family bingo, were aimed at the whole family joining in and having fun together. We also delivered postal activities including audible vouchers, Birchbox subscriptions, art journals – another chance for the parent/carers to take some time for themselves, perhaps to be mindful or simply to enjoy a pampering treat. The postal activities included activities the families could do together, such as baking together, which again enables them to spend time as a family out with their caring routine.
When Covid hit, family situations changed rapidly. Families were suddenly unable to have anyone in their home to help, be it a family member or a paid carer who had previously been able to provide much needed respite. Everyone was at home 24/7 with different levels of care needed depending on age, stage, medical conditions combined with different home-schooling circumstances. Understandably this different way of living made things extremely stressful for parents and carers. Different families had different needs as regards to activities or support. Through a google document on our private family Facebook page we provided live and on demand content made in-house and set challenges for the whole family. This allowed the families to access content at a time which worked best for them. We have also had produced mindfulness content for families and sent out adult colouring books, birch boxes subscription for three months and massage boxes for families. Gemma is 10, has a neurological condition with epilepsy and an older brother who is 13. Prior to lockdown the family did attend activities but not on a regular basis. Over the last year the family has accessed our ‘on demand’ activities and have a presence on the private Family Facebook page. They do not tend to join the live activities; however they particularly enjoy the ‘on demand’ Makaton stories and the Makaton sing and sign sessions. At Christmas we organised a doorstep visit from Elves to deliver Christmas presents, Gemma’s Mum shared how much they enjoyed the experience as a family and posted photos of the visit on our Facebook page. They have received 38 items through the post so far, this compliments the ‘on demand’ content for their family. They have enjoyed items for the whole family, including: brownie kits to bake at home together, a large variety of sensory toys, face masks and hand sanitiser for the family, adult mindful colouring books, a book to support teen challenges, cross stitch kit for mum, a three month Birch box subscription containing beauty and health products. A family massage kit to help with relaxation and pamper items for the whole family, and a worry monster and worry monster book for Gemma, to help her with her worries especially throughout all the unknowns during lockdown. These items all provide an escape from the normal caring routine for parents. Whether it’s an individual activity such as mum’s cross stitch, or a family one like baking together, these items provide some time out, even if just for a short time, while the families have not been able to leave the house or to access the respite they would have had prior to lockdown and shielding. Quote from another Charlie House family:‘ “We got our brownie kits today along with gloves, beautiful books and activity packs. We are so thankful, one of my personal lockdown highlights will be my son’s reaction every couple of weeks when we get a family parcel delivery whether it be family, friends or Charlie House, his wee face just lights up with excitement, thank you.”
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.
163 parent carers/95 siblings had the opportunity to participate in over 200 activities. Lockdown has made the delivery of activities solely for the parent/carers more challenging as they have been unable to have anyone in their home to provide respite care. We have been able to hold weekly virtual coffee and catch ups, giving parent/carers a chance to connect with one another and benefit from peer support. We have also provided resources to help the parent/carers focus on their own wellbeing, this included sending out items to facilitate them taking some time for themselves, e.g. Birch Boxes and audible vouchers, as well as providing foundation training and subscriptions to the Fitness Guy Lean and Learn programme which focus on their health and wellbeing.
Pre lock down we held monthly coffee and catch-up sessions, one based in Aberdeen and one in Aberdeenshire. This was an opportunity for parents to come together, each from different stages in the journey to share experiences and support one another. We have continued this on a weekly basis, online, varying the days and times; meaning anyone can join in regardless of geographic area. One of our parents, Joan is a regular attendee. She has two children. Tom is 12 and has a chromosome disorder, has sight and vision impairment and is nonverbal. Tom has a 13-year-old sister, Debbie. Prior to lockdown Joan would be a regular attendee at the physical Aberdeen Coffee and Catch Ups. Joan usually attends alone, whilst her children are at school. This year Joan has attended the virtual Coffee and Catch Up when she can, which maintains the continuity she had before. An advantage of the virtual coffee and catch ups is that Joan can meet families from both Aberdeen and Aberdeenshire, something she would not normally do at the physical catch ups. She is a fountain of knowledge and always makes a new parent attending coffee and catch ups feel very welcome and included. On occasion Joan has been the only attendee, however this gave her the chance to talk freely with us about what was going on, unwind and share how she and her family are coping throughout lockdown. This is her time and based on her regular attendance and her feedback it’s clear she gets a great deal of benefit from it. ‘Through the Charlie House Community Facebook page there has been discussion and support, as well as regular ideas and activities, and opportunities for virtual get togethers. Knowing these things are there is sometimes as much as doing them, as is the flexibility and understanding toward circumstances on the day. However, we have valued the friendly contact as well as enjoyed the activities we have joined - including siblings and family bingo, foundation therapy, stories, Lego challenge and chats. We have also received special gifts in the post giving us fun things to do. Amidst time full of day-to-day care and needs and ongoing isolation, these things are significant joys, and we hugely value the care and kindness with which they have been given as well as the things themselves. Thank you, Charlie House team, as ever for your fantastic thought, attention to details, and ongoing care and support.’
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 wellbeing.
79 children with complex needs/ 163 parent carers/ 95 siblings had the opportunity to participate in over 230 activities. We delivered weekly virtual coffee and catch sessions to enable the parent/carers to connect with others. We also delivered a broad mix of activities focused on improving the children and young people with disabilities and their families’ wellbeing by delivering a break from their normal caring routine – these included music therapy sessions, a virtual science party, live bake-alongs, on demand sensory activity videos, on demand Makaton sing and sign, Makaton stories and virtual magic shows. We have also delivered lots of at home postal activities such as – sensory items, books, baking kits, Halloween party kits & craft kits., audible vouchers, Birchbox subscriptions, art journals and massage kits. Many of the postal activities are creative, sensory, or mindful and can have a positive impact on wellbeing.
Ben is 7, an only child and has Pfeiffer Syndrome. Ben has regular virtual Music Therapy sessions not only within the Charlie House, but 1-2-1 virtual sessions organised through school and Ben will receive physical sessions at school. The difference is now with the virtual sessions, mum can join in too. We have had 4 Music in Hospital sessions and Ben is a regular attendee. It can be seen that both Ben and mum, by attendance and through live observations, enjoy the sessions together, but a standout would be during the Music in Hospital sessions. Music in Hospital take song requests for any genre and style, for example we could have a nursery rhyme then a song from S Club 7 or The Proclaimers. All the children get to select songs, and parents can make requests too. You can visibly see the joy in Ben’s mum’s face when her songs are chosen as well as her son’s. She lights up, dances or they play musical instruments together. She often chooses older songs, and the joy translates through the screen. On one occasion, she picked a song played during her wedding. Music can transport you to a different time, spark different memories and sensory sensations. Again, this is not a long-term fix or change, but, during lockdown, moments like these, which can relax parents or carers or take them to another place, can be rare and are precious, and their benefit should not be underestimated. The family often access the on-demand sessions such as the Makaton sessions and have received 16 postal activities including several baking kits, cross stitch, Birch box and a selection of sensory items. Mum often posts pictures of the completed baking on the private family Facebook page and has fedback on some of the live sessions. Quote from another Charlie House family ‘When COVID-19 first appeared, it was terrifying for most people, but maybe a bit more so for the families of our vulnerable children. We went into isolation before lockdown was imposed so the novelty had worn off before lockdown even started. I do not think any of us appreciated just how much it meant to have our support network of carers, support groups and friends to get us through life, until we had it taken away. But in true Charlie House style, they quickly adopted a new norm for our community and suddenly we had access to online support, activities for our kids and siblings and interactive ways for us to connect. Not only this, but we now have a library of activities to be used at any time, which is helpful when you have a child who may spend a lot of time off school, siblings who need support when their brother or sister needs more attention than them or just something to connect the family together.’