At the heart of Charlie House is a team of unsung heroes who dedicate their lives to making a difference.
Their shared passion and constant drive means that local families whose children are facing life limiting or life threatening conditions can still make incredible memories together and receive much needed support throughout their journey - no matter what their needs are.
In this inspiring Q&A, Leigh Ryrie, Children & Family Support Manager at Charlie House, sheds light on the profound ways her team can support families. She offers a glimpse into the dedication, compassion and hard work that drives her team, as well as what families can expect when they reach out to us…
Tell us about your career background - what led you to working at Charlie House?
“I worked for the NHS as a play specialist at the Children's Hospital, where I met a lot of families within the hospital setting. However, I was curious to find out what life was like for families outside of a medical environment. I then worked for a few different charities and gained a lot of experience in bereavement and supporting families as a whole.
“My current role at Charlie House didn’t exist before I joined the team, but I really admired what they do and felt that my experience in providing emotional and bereavement support could really help to develop and enhance the services they offer.
“On a more personal note, I had an older brother that was very unwell and for a long period of time I followed that North-east way of just getting on with it, taking on the role of cheering up my brother without proper support for me. This isn’t just a job for me, it’s my mission to make sure everyone in the family who finds themselves in a similar circumstance is supported, because I can relate to how tough it is. Fortunately, my brother is now well but the experience has changed my whole outlook and career path for the better.”
Who are Charlie House services for and why should they get in touch?
“Our services are for families in the North-east with a child facing a life limiting or life threatening condition. We know that it often takes a lot for parents to reach out and ask for help - either because they’re worried about facing more disappointment, or because they want to do everything themselves - which is why we're very family centred in our approach. When a family contacts us, we really take the time to listen to what they want and the type of support they need, rather than assuming we know best. They’re the ones with the experience here, we’re just trying to help them along the way and allow them the opportunity to make some amazing memories or have a bit of relief from what they’re facing.
“Our services come at no expense to the families, and there’s no waiting list - so we could have an initial meeting with a family and a few days later they could be taking part in one of our activities with other families who are also facing complex conditions. If they don’t feel ready to join in at this time, we also offer postal activities once a month that families can do in their own homes - everything is done at their own pace and we take into account that there’s no one size fits all approach. We often see families thinking ‘what’s the catch’ and there really isn’t one, so there really isn’t anything to lose by getting in touch!”
What does a typical day look like for you and your team at Charlie House?
“A lot of our day to day involves receiving referrals, visiting parents and contacting different families to support them with what they’re facing. This could involve applying for different funding opportunities on their behalf, seeking out medical professionals or social workers, liaising with schools. I also ensure there’s funding for the activities we organise.
“Additionally, I liaise with other organisations that we can potentially work alongside in a way that will benefit the families, which could lead to a multi-agency meeting with us acting as an advocate for the family. This often involves a lot of questions about a family’s circumstances so it can be quite daunting for those who are going through such a difficult time, so I can join the meetings for support, help them prepare and talk through it afterwards.
“We've just started a lending library with equipment that we can lend out to families such as foldable shower trolleys, hoists and some amazing new sensory equipment. We’ve also got therapists visiting once a month so we organise that too.”
What is your team’s primary aim at Charlie House?
“The families we support don’t have the option of taking a break and switching off from what they’re going through - everything has to be timed, medications have to be taken at a certain time and routines have to be followed. So, our number one goal is working alongside families to make sure they feel heard and supported, and help them in any way shape or form - even in a small way.
“I've got such an amazing team and we're all super passionate about the work that we do, and that’s helping families make amazing memories to cherish. We see the families have to fight for absolutely everything while they’re going through tremendously difficult times, so if we can help in any small way and make that journey just a tiny bit more manageable, then that's what we strive to do.”
What are some of the different ways your team supports children with life-threatening or life-limiting conditions and their families?
“We work closely with the activities coordinators at Charlie House to organise accessible activities and trips across Aberdeen, Aberdeenshire and Moray. From day trips and city breaks to holiday breaks, families can keep the same routine and choose to take part in the different activities or just enjoy a private family holiday with our support there if they need it.
“We run activities for siblings too, so they have the opportunity to enjoy their childhood or their teenage years and connect with others who are going through something similar. They have this sense of empathy that maybe other children don't have, it's amazing to watch them welcome any newcomers. We also organise activities just for parents too, so they can take a break from being someone’s mum or dad and make friendships with other parents they’ve met through Charlie House activities.
“We also offer emotional support, pre and post bereavement support, parental support. Since we're not social work, education or health, we’re quite neutral and can offer a really safe, confidential space for the families, whether it’s through one to one sessions with parents or siblings, or as a family. We can also attend social work meetings or multi agency meetings just as an extra voice for families as well.”
How do these services benefit families?
“When there’s a child facing a life limiting condition, it feels like so many doors are being closed for the family and they’re constantly being told ‘no, that’s not possible’. We’re all about enabling families to still live life to the fullest and finding activities they can do. We've brought children on dolphin tours, supported them on surfboards, we’ve even had children on paddle boards with wheelchairs and everything! Families would never have thought things like that would be possible before, so everything we do is focused on how we can make things a little bit better and a little bit easier for families.
“There's a lot of families at different stages of their journeys which is a huge source of support in itself. For a family that's at an earlier stage, or their child is younger, the wealth of experience that other families who are further on in their journey share, or things they can recommend is a massive help.”
When a new family first gets in touch, what does that process look like and how do you put them at ease?
“Parents can self-refer through one of our forms on the website, or we can receive referrals through health visitors and social workers.
“If a family qualifies they can complete an individual referral form where they would share as much medical information as possible so we can get a better idea of their needs. I would then contact the families and arrange an introduction with them either through a home visit, a zoom call, meeting up in a cafe - whatever would be as easy as possible for the families.
“In these initial meetings I’m looking to build up a rapport with the family, get a better understanding of what they’re going through, what they’re looking for from Charlie House and what they need. I would then tell them about all the ways we can support them - we go through absolutely everything which can probably be quite daunting at first, but we can go through anything again in more detail or give them time to consider all the options. Again, our goal is to make families feel heard and understood, and let them know that they have options and support no matter what.”
What do you love most about your job?
“I love the people I get to work with - I’m lucky to have such an amazing team where we all work really well together and such incredible families. I know they don't see themselves as this but the families really are an inspiration to me.
“Going through the twists and turns of each family and each individual within that family is really special. It's an honour to be invited to be part of that journey and help them make amazing memories - it really isn’t something I take for granted.
“Some of these activities we do, you could come home soaked or freezing but your heart is just so full because of the joy that you see in the families, making connections and making friendships that will last a long time. It's an absolute privilege and I love what I'm fortunate enough to be doing.”
What are some of the recent highlights within the team?
“I know that a lot of people think the Charlie House ball is the big event of the year but for me, the Christmas party the next day is my absolute favourite. We bring in bouncy castles, putting greens, Sensi massage therapists, a Santa’s Grotto, personalised gifts for the families - it’s really special to see so many come together like this.
“We’re excited to be running a wider range of services in the future and continuing to implement these based on the families’ changing needs. What they need changes all the time and it’s up to us to listen to that and move with those times, especially as we move into our own facilities and expand our services. When we move to the physical Charlie House we don’t want to be starting from scratch - we want to have the staff and services ready for the families as soon as possible so they’re supported in the best way possible.”
How many families does Charlie House currently support?
“Right now we support 120 families, so that means all the siblings, parents and children with life limiting or life threatening conditions, as well as parents and siblings who have lost their child too. Even though a child has been bereaved, their family can still be a part of Charlie House - there’s no time limit on our support.”