A story by Charlie House
The Activities Coordinator helped deliver a range of recreational activities and activity short breaks for children with life limiting conditions in complex disabilities. This enabled families to spend quality time together, have respite from their caring duties and improve their health and wellbeing.
What Activities Coordinator did
We delivered a range of recreational activities and an activity short break for children with life-limiting conditions and complex disabilities, their parent carers and siblings. Activities enabled families to spend quality time together, meet others in similar circumstances, make friends and try new activities.
Activities included ice-skating, ten pin bowling and music therapy. Our families gained confidence by trying new things, developed a peer support network and had a break from their normal caring routine. Siblings Club is for any able-bodied sibling supported by Charlie House. Many parents have expressed their concern that these children rarely get all the attention they need and during the sessions they can have fun with other children in similar family situations and make new friends. We offered activities including climbing, golf and tubing.
Parents Group gives parent carers the opportunity to enjoy a session just for them to meet other parents, benefit from peer support and share information & advice. The sessions have included coffee mornings, alternative therapies & dance yoga. Activity Short Break took place at Kielder in October. Short breaks like this empower the parent carers, siblings and children to feel more confident, less isolated and make new friends. The 2017 break was attended by 25 families. Activities included, archery, sailing, king swing, orienteering, climbing wall and zip wire.
Under 5’s Club was aimed at pre-school children and held during the week. Only one child and parent attended so it was decided not to hold anymore until we had a better understanding of what the families need. Family Community Facebook Page, is a private page for parent carers supported by Charlie House. This enables us to share information, offer support & advice and receive feedback at any time.
Activities took place at the weekend, with additional sessions during the school holidays. We were able to research and source new activities and support more families to attend. All families registered with Charlie House were able to access the activities which we promoted on the private Family Facebook page and via email.
What Charlie House has learned
Through the delivery of this project we have learned that it’s vital to take the families opinions and ideas into consideration when choosing the activities and short breaks. The families are best placed to tell us what they need, what works and what doesn’t. This includes the types of activities as well as other factors such as venue and duration. As a result, we intend to expand our activities this coming year by running more sessions during all the school holidays as well as arranging an alternative activity for those who cannot attend the Activity Short Break at Kielder.
We are also in contact with other organisations who are developing more accessible venues and activities in the local area to share what we have learned and experienced. By listening to the families and taking their feedback on board we will be able to offer more inclusive and meaningful support for the children and their parent carers.
We have found that for some parents the thought of joining the activities can be overwhelming and this prevents them from attending. They are cautious of taking their children to new places or trying new activities due to their complex conditions. For new parents, or those with a recently diagnosed child, it can feel overwhelming meeting so many new families while dealing with the huge change in their life. Therefore, we will be introducing small transition groups for new families to help them access the activities by proving reassurance and enable them to meet other families. We will provide more support during the Activity Short Break by ensuring that families attending for the first time are there together and will provide a specific helpline number to reach a member of Charlie House staff at any time during their trip.
We had previously identified a need to plan which activities we will be doing and when much more in advance than we have previously and doing this enables more families to attend. In November 2017 we recruited a Trusts and Funding Development Officer, which was a new post in the organisation, who is responsible for sourcing grant funding for this project. Having this in place has enabled us to secure funding at an earlier stage and therefore plan out our activities much further in advance.
As result we have been able to let the families know about the activities much sooner and they can then plan which ones they would like to attend and make other arrangements as necessary. This has also benefited those who want to attend the Activity Short Break as the parents who work are able to book time off. Forward planning our budget and activities made the project run more smoothly, ensured we could deliver all of the activities and enabled more families to benefit.
The Activities Co-ordinator planned & delivered 12 Activity Club sessions, 6 Young Person club sessions and 12 under 5 club sessions for 50 disabled children and young people to try new activities and meet other children and deliver an activity short break for 27 disabled children.
We delivered 19 Activity Clubs which enabled children to take part in recreational activities, along with their parent cares and siblings to enable them to spend quality time together. We delivered 1 Under 5’s group but this was not well attended, and we are reviewing how to improve this. We did not deliver any Young Person’s groups as at the time there was no demand, but we are reviewing this for 2018/19. We delivered an Activity Short Break for 27 families at Kielder. The trip included outdoor activities e.g. zip lining, canoeing, king swing and climbing, which most children had never experienced before. The activities took place at weekends, with additional sessions during school holidays. The activities were very successful, and we received positive feedback from families. The activities took place at venues in and around Aberdeen, based on their accessibility and facilities. Activities included beach pony rides, ice skating, music therapy, silent disco and bowling.
John* age 12 has Angelman Syndrome, which is a genetic disorder that mainly affects the nervous system. Symptoms include; a small head and a specific facial appearance, severe intellectual disability, developmental disability, speech problems, balance and movement problems, seizures, and sleep problems. John requires a wheelchair and sometimes has a carer. Mum, Dad and John attended a sensory disco session, during the school holidays. It was noted by staff that the John had become irritated and had not stayed for the duration of the activity. We contacted Mum after the activity to ensure John was okay. Mum said that John doesn’t like music activities for long periods of time, that sensory discos are not really for him and he gets bored very easily, but she wanted to try. We assured mum that we had expanded upon the current activities due to feedback we had received, and that the next activity might be more appropriate for John and the family. The following activity, Circus Skills, was new to us and completely different from previous ones as we have been working to ensure each activity is different and have been measuring the popularity, documenting which families are engaging in each activity etc. John attended the circus skills workshop and his Mum guided him to participate in juggling, scarf work etc, whilst his dad and his teenage sister (who also attended on this occasion), tried out the tightrope, juggling and mini unicycles. Mum approached us to say that John loved this activity! She again referred that John doesn’t really like sensory discos and not all children like this type of activity. We let her know that we had taken this on board and we will continue to provide a large variety of different types of activities. She said, this was exactly the type of activity that John needed, and it was perfect for the whole family to participate together, they absolutely loved it! To reflect, we take on board the families’ needs on an ongoing basis. We take the feedback from every activity, using mediums including, the private Facebook family community page, where the families openly discuss and reflect upon all activities, and any further verbal or written communication. We also are present during every activity and see the child’s verbal and nonverbal communication and this influences our activity choices. *Names of child has been changed.
We organised clubs for sibling carers to meet others in a similar situation, reduce feelings of isolation & improving wellbeing. We organised activities for parents, which gave them the chance to make friends with other parents, receive support & discuss issues in a safe & supportive environment.
This was achieved by offering activities targeted at the different groups. Activities Club and the Activity Short Break were accessible to the whole family. These provided fun activities the whole family could enjoy and a break from their normal routine. We delivered 6 Sibling Club sessions for the siblings of children with life-limiting conditions and complex disabilities. Siblings often miss out on regular activities and time with parents as the needs of the disabled child take priority. These sessions gave them a break from their family circumstances and gave them time with their parents and peers. This helped increase their confidence, communications skills and general wellbeing. We delivered 17 Parent Group support sessions, which included coffee mornings, yoga and alternative therapies. These s provided an opportunity to share information, concerns and advice with peers as well as take part in relaxing activities. This gave parent carers a chance to ‘recharge’ and ‘de-stress’.
Sheila* lives in Aberdeenshire with her husband and their two children: Emma* (8) and Noah* (4). Emma was born with brain damage, has cerebral palsy and is unable to either walk or verbally communicate without aid. Emma also suffers from extreme anxiety and global development delay and has recently also developed epilepsy. As Emma has grown older she has also started showing signs of aggressive behaviour toward her Mum – a behaviour that Noah has not only picked up on but has also started mimicking as he’s gotten older. Emma’s mood generally dictates whether the family can face leaving the house, which has resulted in Sheila’s anxiety and stress levels increasing over the past couple of years. Due to situations like Sheila’s we identified the need for a Parents Group to offer support to parent Carers. During these sessions parent carers can have time for self-care, benefit from peer support and take part in therapeutic activities, social events and regular coffee mornings. Some of the most popular sessions during 2017 have been our relaxing therapy sessions where parent carers had the opportunity to try a range of different therapy treatments. Sheila, who has been able to benefit from three treatments, said: “My treatments have been wonderful! I would never prioritise something like that these days – time wise or financially – so it has just been brilliant!” By offering Parent Group sessions, we can provide parent carers with much needed peer support and the chance to have a short respite from the pressure of their daily caring routine. * the names of the family members have been changed
Parents Group met regularly, offering a safe space to discuss relevant issues, offer & receive peer support & form friendships with parents in similar situations. These were organised by the Activities Co-ordinator to take the stress away from families & allow them to enjoy the time.
We achieved this by offering support sessions specifically for parent carers. We held 17 Parent Group support sessions, which included regular coffee mornings, yoga and alternative therapies. Caring for a child with a life-limiting conditions and complex disabilities is very stressful and parent report feeling isolated, lonely and stressed. These sessions provided an opportunity to meet other parents in the same situation, to share concerns and gain advice. This type of peer support network is invaluable for families as they navigate the challenges of their child’s condition. They enabled parents to relax and enjoy something that was just for them without having to look after their child at the same time. This helped alleviate some of the stress and anxiety felt by parents and improved their mental and emotional wellbeing. This was enhanced by accessing our other activities with their children to simply enjoy time together like any other family.
Leah* and Michael* are parents to seven-year-old Jonathan* who has quadriplegic spastic cerebral palsy, dystonia, hypotonia and epilepsy. Because of his condition, Jonathan is wheelchair bound and non-verbal, but communicates through smiles, giggles, cries or babbling noises. Jonathan also gets easily overwhelmed and can have a hard time coping with new environments. In November 2017, Jonathan had his first visible epileptic seizure and was taken to hospital by ambulance. The same evening, Leah posted on the private Charlie House Families Facebook page, for support and wrote: “Jonathan had his first clonic tonic seizure this morning. Really terrifying and all new to us. We’ve been querying seizure activity for a while but that’s the first fit we’ve witnessed. Ambulance took us up to hospital in the early hours and now waiting around to be seen by neurologist. Feel like this is a whole other ball game from what we’ve got used to with our wee man.” Within 24 hours, Leah’s post had over 50 comments from other Charlie House parent carers who offered support. One mum wrote: “There’s nothing we can say to make it less scary, but just remember that you’re not alone.” Another mum, whose son has had similar epileptic seizures over the past couple of years, commented: “I remember that feeling – a whole new ball game I had hoped I might not have to engage with. William* had lots of oddities we weren’t sure about before he got his diagnosis a few years ago. It now feels like a part of everyday life and he is more stabled thanks to his medications. His feeding and sleeping have also stabilised since then. So hang in there, one step at a time.” Another mum gave Leah and her family advice on how to get the right equipment, who to talk to and what numbers to call. By the end of that week Leah’s post had over 60 comments from other parents supported by Charlie House. As a final comment, Leah said: “Thanks all for your support and advice. Just so comforting to know you’re not alone.” To date, the page has 76 parent carer as members with different posts and comments being posted on a weekly basis. By running the page, we can provide parent carers with peer-support, advice and round-the-clock support to sustain their caring role. * the names of the family members have been changed
The Activities Co-ordinator visited new mainstream facilities not previously used by Charlie House and reviewed their suitability for Activity Club. Activities will be held at mainstream facilities where possible and new activities organised when their suitability has been assessed.
Due to the complex nature of the children’s conditions many families find it difficult to access leisure activities as there are few locally that have appropriate facilities e.g. wheelchair access and changing facilities. We researched and arranged a range of different activities at different venues that many families had not accessed before. Many parents found it daunting to take their child out or try new activities, but with support they were able do so and have built up their confidence and they are now familiar with more venues that they know are accessible. In many cases the lack of changing facilities created a barrier to engagement, therefore we hired the PAMIS Mobiloo to ensure as many families as possible could attend. Taking part in different activities has also shown the parents that there are more things their child can do, with the right equipment and support, than they realised. These are things they can continue to do as a family out with the Charlie House activities.
We met with Heather* at one of our Parent Group coffee mornings. Heather is the parent of 21-year-old young adult, Judith*. Judith has Down syndrome, heart issues, developmental delay, confined to a wheelchair, mobility issues and is PEG fed. Judith requires two carers, round the clock. During our coffee morning Heather mentioned how much Judith enjoyed the ice skating session she attended with her family and carers, thanking us for this opportunity. Judith is a regular attendee at the family activities, having previously enjoyed recreational activities including; sensory discos, bowling and the ice skating, which she especially enjoys. Heather spoke about a local Day Centre that Judith has just enrolled at, how fantastic the facilities are for Judith and how much she has settled in to this new facility. Heather vocalised that the changing facilities are exceptional for young adults. This is an area that we have been looking into as we have found many of the venues we use do have disabled changing facilities, however they not suitable for all young adults. The children and young people we support have complex needs and life limiting illness’, however, it’s had been recognised that due to advances in medical interventions their life expectancy is longer than previously thought and they are living longer therefore we expect to be working with more young adults in the future. We have a duty of care to ensure that our activities are inclusive, so we need to be proactive and ensure the facilities we use are fit for purpose for all. We began sourcing new venues and opportunities, focusing on changing facilities for our young adults. We have been able to access the facility Judith uses which meets all our family’s needs without the need to hire a mobile changing facility (We often hire this for longer recreational activities or activities we know we have young adults in attendance). Through this collaborative working we have been able to secure additional facilities for smaller group activities, whilst increasing our partnership networks with other local agencies. The needs of the families are of the upmost importance to us and we recognise that we need to change and adapt constantly through each age and stage of development and needs of the individuals and families.
The Activities Co-ordinator aimed to develop relationships with local Additional Support Needs schools, Community Child Development Teams and Social Work Disabilities Teams. Experiences will be shared through blogs/stories from families who attend activities and on our social media channels, website and newsletter.
We carried out monitoring and evaluation of our activities and requested feedback from families after key activities using short surveys. This has enabled us to learn more about how the families benefit from the activities. It has also helped us to identify which locations, activities, venues, times etc are best for the families. This meant we were able to plan more suitable activities and increase family engagement. As a result, we will be expanding our activities in 2018/19 to include more activities during school holidays as well as an alternative activity for those who cannot attend the Activity Short Break in October. We are currently in contact with other organisations who are trying to develop more accessible venues and activities in the local area. We can share our learning and provide feedback based on our experiences and the experiences of families who attend our activities, and this will help to ensure that their needs are taken into consideration.
Vivienne Samuels* and her two children, Louise*(14) and Jordan* (9) attended the Kielder Activity Break at Calvert Trust Kielder for the first time in 2017. Vivienne’s husband Mike, the children’s father, was unable to attend the activity break due to work commitments. However, the family were accompanied their carer Muriel to help Vivienne and Louise care for Jordan. Jordan has Spastic Quadriplegia Cerebral Palsy, epilepsy and asthma. He is wheelchair bound, unable to sit unaided due to a very low trunk control and needs hoisting to be able to move. Jordan also has verbal communication issues caused by his condition. The trip to Kielder was the Samuel family’s first activity-based interaction with Charlie House and the other families supported by us. However, the family weren’t daunted by the rather adventurous activities, instead, Vivienne said, “It has been fantastic seeing our son getting to experience the activities that he would not normally be able to participate in. One of our favourite things about the Kielder Activity Break has been getting to experience new adventures and activities together.” Some of the many, fully accessible, activities available at Kielder include sailing, canoeing, indoor wall climbing, zip wiring and king swinging. In addition to this there is a hydrotherapy pool and a sensory room. Kielder can also be beneficial for families from a peer-support point of view. Vivienne said: “Meeting other parents & sharing similar issues has helped me realise that we all share the same experiences, issues and difficulties.” By giving families such as the Samuels the opportunity to attend 2017’s Kielder Activity Break, we can demonstrate the role short breaks have in supporting caring relationships. It also builds a better understanding of children and young people’s need for short breaks and lets the families see the amount of fun, new experiences and freedom they can provide. * the names of the family members have been changed