ReCHarge FREE MAGAZINE
Our year so far 4 Day in the life 6 Fun & free activities 8 Our familiesâ€™ stories 10
Our year so far
Day in the life
Fun & free activities
Our familiesâ€™ stories
Save the date
How you can help
Chair’s message We’re delighted to introduce you to the first edition of our new look magazine ReCHarge. Through the magazine we will keep you up to date with the latest goings on at Charlie House HQ, share your terrific fundraising support and importantly, let you know how your donations help children here in Grampian.
In the North-east of Scotland alone there are 1500 children with complex disabilities and life-limiting conditions. Since the charity began in 2011, we’ve been committed to supporting these children and their families. It’s been a busy few months here at Charlie House developing services and activities for the families we support. In February this year we welcomed our Children & Family Support Manager to the team. Hear more from Leigh about her role and the plans for the future on pages 6 & 7. You can also read more about the activities and opportunities we have planned for families on pages 8 & 9.
We continue to progress the plans to realise our dream of building a purpose-built specialist centre here in the North-east. We’re currently in the first stage of planning and look forward to releasing further exciting developments in the coming months! Charlie House simply couldn’t continue to offer the support we do without our incredible corporate partners, volunteers, fundraisers and supporters. To hear about how you can get involved see page 14. On behalf of the Charlie House board, thank you for your support of Charlie House.
- Tracy Johnstone
Thank you for your support of Charlie House.
voluntary board hours
people signed up to challenge events so far
Our year so far
attended our activity clubs
Stand with Charlie House
Volunteers needed! Join the team Get in touch today firstname.lastname@example.org 01224 313333
Day in the Life As part of our new look ReCHarge magazine, we will be featuring a ‘Day in the Life’ of not only our team but also our fantastic families, fundraisers and volunteers. Our first feature takes a sneak peek into a ‘Day in the Life’ of our Children and Family Support Manager, Leigh Ryrie:
Name: Leigh Ryrie Job Title: Children and Family Support Manager supporting children with complex disabilities and life-limiting conditions and their families Company: Charlie House
Morning: I am usually woken up by my two very vocal sausage dogs, whose wake-up time is dependent on how hungry their little bellies are. I get them and myself organised, before heading off to work, often involving a ‘car’aoke, (usually the Greatest Showman!), on route. We have a team meeting in the morning. This gives everyone in the team a chance to reflect on the previous week, celebrating the small successes, a recent activity or a successful partnership opportunity or fundraising event. We currently have nine staff within the team. As a team, we are evolving and developing every day. It’s fantastic to see and be part of this. It may come as a surprise to some people, but we also have a lot of laughter within Charlie House HQ. It’s an exciting time to be part of the Charlie House family. Next, I have a meeting with our Activities Co-ordinator Elin, regarding the activities we offer. These activities allow an opportunity for families, at no cost to themselves, to participate as a family, while being supported to do so. It’s a huge step to take your child on an ice rink in a wheelchair for the first time. However, the child’s enjoyment, laughter, verbal and non-verbal reactions are priceless. It can also be helpful for families to meet other families of children who may have a similar diagnosis, and for siblings an opportunity for peer support.
Lunch: I often have lunch at my desk or sit at our wee ‘nook’ in our office and catch up with the team or go out and get some fresh air and make some phone calls.
Afternoon: As this is a new role, I am taking time to develop our services further, so spend some of the afternoon working on this. These services include: one-to-one support for children, siblings and parental support, supporting adults to have difficult conversations with children, how to manage worries and feelings, sibling groups, under five groups and worry groups, preparation for funerals, pre and post bereavement, and keeping memories safe. I also support carers and professionals working alongside the families as an advocate for the family. This is hugely rewarding and I feel extremely fortunate to have this position. I can also meet up with a family at home. We talk through the services we provide and what they could benefit from through Charlie House. We fill in a referral form and discuss options and the opportunities that are open to all members of the family. Currently, we are planning our annual short break trip to Kielder Forest Park and are holding various planning meetings in regard to this. Kielder is a family activity short break that we fund, allowing families an opportunity to short break together. Kielder is the closest venue to Aberdeen that provides this specific activity short break for the families. There is an array of outdoor activities for the families to try out together. This is a real ‘step out of your comfort zone’ opportunity. I don’t think some of our families ever thought they would be sending a child with a lifelimiting condition down a zip slide! I can’t wait to accompany the families later this year. It has been a whirlwind few months further developing the services for the children and families, but I am loving every second of it and can’t wait to see what the future holds.
Why I love my job: 1. The families we are fortunate enough to work alongside. With a hope that, in some small way, Charlie House can make a difference. 2. As this is a new position, I am fortunate in that I can create and develop the role, to enable us to do our utmost to ensure that we are doing our absolute best for the families who access our service, whilst engaging with the new families to join us. 3. The new services my role will be providing, it is a very exciting opportunity. 4. The Charlie House team. I am only a few weeks into the role and am like a sponge just now, learning from the families and the team. 5. The inclusive activities we provide. 6. Our Kielder Activity short breaks. 7. The memories. Memories that are made every day, within our team and creating opportunities to make more memories for the families. If I have learned anything from my professional career, it’s make every moment as special as you can!
It’s a huge step to take your child on an ice rink in a wheelchair... the child’s enjoyment, laughter, verbal and non-verbal reactions are priceless. 8. The multi-agency partnerships. It’s interesting to see what fantastic services and opportunities we have within the city and the shire. I enjoy working alongside these agencies helping to create further opportunities for the families. This could be NHS, education, other charities and independent agencies. In addition to this, being invited to be an advocate for the families within a multi-agency.
Fun & Free Activities For the children and families we support, there are limited opportunities to take part in activities together as a family. We work alongside a variety of organisations to develop and create opportunities to put together an array of activities, that are inclusive, fully funded and most importantly fun!
During the past three years, over a thousand people have participated in activities from trampolining sessions to dance classes, theatre performances to music therapy, Critter Keeper and circus skill workshops. All activities are free of charge. Currently, Charlie House run several different activities clubs.
Family Activities Club These clubs run monthly and all activities are fully accessible and tailored for the whole family to participate in. Previous activities have included ice-skating, ten-pin bowling, music therapy and pony rides at the beach. In addition to this, we are often kindly gifted fantastic opportunities for the families such as tickets for our local Lynx Ice Hockey Team home games or to see Aberdeen Football Club in action on home turf. These are the family activities that many people take for granted, but they can seem impossible when you have a child with a
specific need who requires specialised facilities & equipment and needs regular medication. Having activities organised, which the families know are safe and appropriate, takes away the worry and stress for them. It gives them a short break from their caring responsibilities and enables them to simply enjoy time together as a family, creating precious memories and building their confidence in trying new things. Watching the families learn to skate together, feeling the cold on their faces, stimulating their senses and making memories to cherish is wonderful. It also enables families to meet others experiencing the same difficulties and builds an invaluable local network of peer support.
School Holidays Families Activities Club This is the same format as the Family Activities Club but organised specifically during the school holidays. The holidays can be a long time to go without the usual school routine and can often become quite isolating. We endeavour to run an activity per week during the holidays.
Siblings Club These clubs take place once every two months and are solely for siblings who are accompanied by their parent(s) and or carers. Previous activities have included tubing, canoeing and adventure golf. When their brother or sister have medical appointments or hospital stays, the siblings may miss family time and possibly miss usual routines and hobbies as a result. The Sibling Club enables them to have dedicated time and attention. It also gives them the chance to spend time and make friendships with their peers who are experiencing similar family situations.
Parent Carers Club These clubs run on a regular basis, providing an opportunity for parents to meet others from the local area who may be in a similar situation. Creating the opportunity to ask questions and share experiences is crucial to helping parent/carers cope with their longterm caring responsibilities and helps them navigate the many challenges they may encounter during their childâ€™s life journey. This is especially important for new parents or those with a recently diagnosed child. These range from coffee mornings and yoga sessions to exclusive spa afternoons or trips to Aberdeen Football Club. Charlie House host a private Facebook Family Community page for parents where they can connect and communicate at any time, supporting each other.
Activity Short Break This takes place annually during the October school holidays and is held at the Calvert Trust in Kielder Forest Park. Families attend the trip together and try a range of activities, all of which are fully accessible. When you have a child with multiple needs, lots of equipment and routines that need to be managed, having a break together and creating wonderful memories can feel like a distant dream. Short breaks like this empower the families to try new things, feel more confident and to come away with new friends. Families take part in activities such as archery, sailing, orienteering, zip wires and canoeing. In addition to the outdoor activities, there is also a hydro-therapy pool and a sensory room. The 2017 trip was attended by 25 families, which included 27 disabled children, 30 siblings and 43 parent carers. This break is fully funded. For the families that cannot attend this short break, we also provide additional activities locally. None of this would be possible without our generous supporters. On behalf of the Charlie House families and team, a heartfelt thanks to you all!
Our families’ stories Meet Joanne Jamieson - mum to Rory and Mollie and Chairperson of ‘Friends of Charlie House’ in Inverurie. We asked Joanne to highlight a typical day caring for a child with complex disabilities to give an insight to our readers:
“Our seven-year-old son Rory has Cerebral Palsy and Dystonia. When you read this, bear in mind that we are ‘fortunate’. Rory does not need breathing apparatus or require help in that way. So many other families live the below with even more restrictions and tasks than us. Many families Charlie House support are dependent on a medically structured life which limits them in what they can do. So many families have to deal with daily struggles, but some families don’t get the chance to balance that out with happy times when they can relax and enjoy some quality time together however, Charlie House offers that support. I have written about a typical day in our family household to enable people to better understand why Charlie House is vital: Rory starts his day at roughly 2am when he needs to be turned in his bed as he does not have the ability to move himself and gets uncomfortable lying in one position too long. He then requires 5 of his 12 medications to be administered at 5.30am, and one of his 3 daily feeds started, which is done by an electric pump directly into his stomach via a gastrostomy tube, as he cannot eat or drink in the normal way.
Joanne & Rory
His feed runs for 2.5 hours and after this requires another medication dose. He then needs to be cleaned and changed, which is a big task as he is unable to move so has to be lifted and turned on numerous occasions simply to change a nappy, take off pyjamas and put on clothes. He then will be positioned into his supported seat and this is done using a sling and hoist. The whole
process of getting him up and dressed and into his seat takes approx 30-45 minutes. We then have roughly 90 minutes until our next round of meds and feed so use this time to get ourselves dressed, get Mollie dressed and given breakfast and then administer the next round of medication. Once again, we then switch on his feeding pump for 2.5 hours. Should we decide to go out of the house at this point, we need to transfer Rory into his wheelchair, which is not suitable for indoor use, which again requires us to hoist him in a sling into his wheelchair, all the while being careful with the tube connecting him to the feeding pump. Once in his wheelchair, we need to plan for our outing. If it is simply a quick trip to shops, then little preparation is required. However, if we plan to be out for longer than 30 minutes we need to think ahead. Do we require his next dose of medications to be made up into syringes, to save carrying the five glass bottles containing his meds around in a bag? Do we have enough supplies to do any change of nappies while we are out, as we often require change of clothes for Rory due to his size, and the fact that immediate changing is not always possible? We cannot use baby changing facilities as he is too big for these, and the provision of changing facilities for adults is very limited. Once we have prepared everything for making the trip, we then have to get Rory into car. We are fortunate enough to have a Wheelchair Accessible vehicle, so this involves opening the car, getting the lift into position, loading Rory onto the lift, getting him into the car, attaching anchor
points to the chair and belting him in, then reloading the lift back into car. Everything has to work to a tight schedule as we know when his next dose of medicine is due and next feed, so we need to ensure we will be able to do this at the required time. Next meds dose is 10.30am with another feed running at 10.30am for 2.5hrs. After this we require another nappy change and clean (hoisting routine once again). The next scheduled meds and feed dose is at 4pm which means we have a window of 2hrs (allowing 30mins for his feed to settle) where we can do physical exercises with Rory to help with flexibility and movement. This is not an easy task as Rory has a lot of tightness in his muscles due to his sedentary life and condition. At 4pm we do another round of meds and start his final feed of the day. Rory does not sleep during the day as his condition means he is
unable to just drop off. In the evening after his feed has finished, we then move onto our bedtime routine, which again involves a hoisting routine to get him changed and ready for bed. Bedtime medications are then administered at 7.30pm, which includes the medication required for him to sleep. He can be asleep by 8/8.30pm at which point we can now go through our preparation routine for the next day which involves making up his daily feed which is a combination of water, supplementary powders and a special milk mixture which provides him with the correct nutrients. We also usually take this opportunity to make up the overnight meds to help avoid too much disruption overnight. Usually around 9pm Euan and I get to sit down together for at least an hour. 10pm sees the next medication dose due and by 10.30pm we are usually in bed until at least
2am. All of this is a standard routine but does not include trying to factor in family times or events or exercise for us. This does not include the times when Rory is sick and needs a full change out with our scheduled times. This does not include the times when one of us needs to hold him constantly when is suffering from muscle spasms. This does not include frequent hospital stays, hospital appointments or weather restrictions. This may seem a very long winded explanation but it is the story of our lives and this is why we desperately need a local respite centre where we can go and stay and have the help and support of medically trained staff who will take on the tasks of medication doses and feeds and changes and allow us to sleep through a whole night, allow us not to work to a timetable and just enjoy being Mum & Dad to both Rory & his sister Mollie.â€?
...it is the story of our lives and this is why we desperately need a local respite centre.... Charlie House
Corporate partners We’re delighted to be working closely with organisations across the North-east of Scotland who raise vital funds for the charity. Here are just some of these wonderful companies.
The cocktail and catering company, 10 Dollar Shake, has partnered with Charlie House over the past two years. Every time someone orders a popular ‘Queen Street’ cocktail at The Tippling House, £1 is donated directly to the charity. The team also donated a decadent cocktail party which was auctioned at our 2017 ball and raised an incredible £4,000. Finally, Rye & Soda generously offered to host a gin tasting evening for the mums of the children we support in May this year as a special treat.
Total raised to date: £2,500
KCA Deutag has supported Charlie House since the start of 2017. Staff have organised bake sales, raffles and taken on sporting challenges such as Ride the North and the Beast Race, to help raise funds. The company also sponsored our first Pony Axes event at Balmedie Beach which allowed many of the children we support and their families to experience their first trip to the beach together. Finally, at the beginning of the year, the company matched the terrific fundraising efforts of the staff to bring them to their incredible total.
Four of the TSB branches across the cityHolburn, Kincorth, Rosehill and Torry- have been busy fundraising for the charity. The Kincorth branch has supported Charlie House since 2015 and were joined by the three other branches late last year. From in-branch raffles to sponsored walks and seasonal fundraisers they’re set to reach a fantastic total in aid of Charlie House.
Total raised to date: £3,259.77
Total raised to date: £20,000
Our sincere thanks for your incredible continued support!
Save the date Dates for your diary
Run Balmoral, 21st & 22nd April, Aberdeenshire
Kiltwalk Glasgow, 29th April
Etape Loch Ness, 29th April, Inverness
BHGE 10k, 20th May, Beach Boulevard in Aberdeen
Forest Gump Private Screening, 26th May, Belmont Filmhouse
Edinburgh Marathon Festival, 26th & 27th May, Edinburgh
Beach Ballistic, 4th & 5th August, Balmedie
Charlie House Craft Fayre, 27th May, Ashdale Hall in Westhill
Kiltwalk Dundee, 19th August
Ten pin bowling, date TBC
Celebrate Aberdeen, 26th August, Aberdeen city centre
Cinema experience, date TBC
Ride the North, 26th & 27th August, across the North-east
Great Aberdeen Run, 27th August, Aberdeen city centre
Aberdeen Harbour Tour, date TBC
Camperdown Country Park day trip, date TBC
Ice Skating session, date TBC
Sensory Disco, date TBC
Summer Raffle, date TBC
Kiltwalk Aberdeen, 3rd June
Tough Mudder, 16th & 17th June, Thornhill
Music therapy session, date TBC
The Critter Keeper session, date TBC
Gung-Ho!, 1st September, Castle Fraser
Duthie Park activity day, date TBC
Fizz & Fashion Friday, 7th September, Malmaison Aberdeen
Pony Axe S session, date TBC
Kiltwalk Edinburgh, 16th September
To have your event in aid of Charlie House featured in the next edition of ReCHarge please email email@example.com. Make sure you pick up our next edition for late 2018 events. Charlie House
How You Can Help Donate:
Your donation goes towards supporting the children and families we support. Just £10 enables one child to attend one of our activity clubs.
Shout about us! We have various social media platforms which we use to update our interested followers and supporters with our news, achievements and general good stuff. Sharing is caring so please help us spread the word about Charlie House.
As a small team at Charlie House we rely heavily on our volunteer network. Could you stand with us and make a difference in the lives of children in the North-east?
Whether you like to bake and are having a coffee morning with friends or have decided to run your first marathon, why not fundraise for us at the same time? Whether you choose to bake, walk, run, cycle or swim, the Charlie House team can support you throughout your fundraising. If you are looking for a challenge, they can also advise on available spaces for various events throughout 2018.
Volunteer: We are always looking for: • • • • • • •
Race marshalls Raffle sellers Cheer teams Refreshment hosts Event support Event promoters Bucket collectors and much more!
Sharing is caring so please help us spread the word about Charlie House. 14
If you are interested in
donating, fundraising or raising awareness
please get in touch with the Charlie House team
01224 313333 firstname.lastname@example.org 38 Albyn Place, AB10 1YN, Aberdeen
Registered charity - SCO42643 16
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ReCHarge is free quarterly publication which showcases charity Charlie House' services.