Activities Coordinator

Outcome

The Activities Co-ordinator will have 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.

Results

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.

Case study

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 ok. 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 had been changed.

Outcome

We will organise clubs for sibling carers to meet others in a similar situation, reduce feelings of isolation & improving wellbeing. We will organise activities for parents, give them the chance to make friends with other parents, receive support & discuss issues in a safe & supportive environment.

Results

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’.

Case study

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

Outcome

Parents Group will meet regularly, offering a safe space to discuss relevant issues, offer & receive peer support & form friendships with parents in similar situations. These will be organised by the Activities Co-ordinator to take the stress away from families & allow them to enjoy the time.

Results

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.

Case study

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 meds. 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

Outcome

The Activities Co-ordinator will visit new facilities, mainstream facilities not previously used by Charlie House and review their suitability for Activity Club. Activities will be held at mainstream facilities where possible and new activities organised when their suitability has been assessed.

Results

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.

Case study

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, focussing 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.