Children’s Hospice Week runs from 17th to 23rd June in 2019 (see #ChildrensHospiceWeek on social media). It represents a full seven days dedicated to raising awareness and funds for children’s hospices and organisations offering palliative care services to children and young people in the UK.
Currently, 49,000 under 18s live with life limiting or life threatening conditions, many of whom need round the clock care. There are 54 children’s hospice services to provide clinical, practical and emotional support, as well as respite care.
The theme of this year’s campaign is ‘Moments that matter’, which is something that resonates with me more than ever. Elijah has spent so much time in hospital in 2019, all I can think about is how much I want to give him moments that matter, moments that make special memories, wherever we are.
One place that has always helped Elijah and I have moments that matter is the amazing Children’s Hospice South West at Charlton Farm. I want to dedicate this blog to them and tell you more about the difference the place and its people have made to our lives.
Getting to know Charlton Farm
Children’s Hospice South West was founded in 1991 by Eddie and Jill Farwell whose two eldest children, Katie and Tom, had life-limiting conditions. At the time, the only children’s hospice in the country was Helen House in Oxford, more than four hours’ away. Eddie and Jill recognised that there was an urgent need for hospice care in the South West.
A much-needed break
In November 2009, two years after Elijah had suffered his catastrophic brain injury, we moved to Portishead to be nearer various support organisations. It was just a few months after this big move that Social Care mentioned the children’s hospice at Charlton Farm.
By this time, Elijah had spent more of his life in hospital than out of it. He was – and continues to be – under the care of numerous healthcare services and professionals. It felt like we never had time to breathe.
I was told Charlton Farm might be able to offer us a space - some downtime and fun away from all of the appointments, corridors and endless waiting.
Thankfully, our referral and initial assessment panned out. There was room for Elijah.
I remember our first visit to Charlton Farm vividly. The hospice is located in a stunning converted farmhouse and surrounded by countryside as far as the eye can see. Step outside and you’re moments away from sprawling fields, wildlife and livestock (who doesn’t love lambs?) and woodlands carpeted with bluebells.
It was like our world slowed down and softened for the first time in years.
Inside, there are eight child-friendly rooms with accommodation for families too. There’s a sensory room for chilling out, a spa bath to ease stiff joints and muscle spasms, playrooms, soft play areas, and even dedicated teen-only rooms.
Despite the sadness of the children and young people at Charlton Farm having life-limiting conditions, happiness was - and always is - palpable in the air.
Part of our lives
That was ten years ago. Since then, Charlton Farm has become part of the fabric of our lives.
Most years, Elijah has been able to have 12 to 14 planned overnight stays at Charlton Farm. We quite often celebrate him being discharged from hospital with a respite stay at the hospice. Sometimes, we’re able to grab an emergency space if one is available.
Usually, one or two members of Elijah’s care team can come to Charlton Farm with him but this can be flexible. I have the peace of mind of knowing that his care can be covered by in-house staff who know about tracheostomy care.
People matter too
It’s not just moments that matter at Charlton Farm; people matter too.
Approximately 40 staff support six or seven children and their families at any one time. In the weeks and months between visits, someone is always in touch to make sure we’re OK. I know I can pick up the phone to Charlton Farm at any time.
Elijah is 100% happy and cared for during his stays at Charlton Farm. He gets to enjoy new experiences, meet new people and enjoy a fun, enriching environment.
But Charlton Farm has done a lot for me too. When Elijah and I visit, I’m able to go to decompress and unwind. If I want, I can have a massage, go for a walk, enjoy lovely food, watch TV or even stay in bed all day – there are no demands on how I spend my time.
During these precious days, I don’t have to think about planning the rota, managing staff or organising training. I can switch off from being a care manager completely and spend time alone and with my son. It’s wonderful.
If I have to go away for any reason, I also know that Elijah can visit Charlton Farm without me and that his every need will be met. As a single mum, that support is priceless.
Supporting Charlton Farm
If you’re looking to support a charity, then Children’s Hospice South West is a wonderful one.
This organisation recognises the physical and emotional strain of caring for a child who isn’t expected to make it to adulthood. But although sad things are faced there, it isn’t a sad place. Charlton Farm, for example, is brimming with love, happiness and friendship.
I’ve realised that I don’t always stop to appreciate just how special Charlton Farm is and how many magical moments it has given me and Elijah. This blog is about giving a fraction of the love back that has been given to us over the years.
You can find out more about ways to support Children’s Hospice South West on their website at: https://www.chsw.org.uk/get-involved
From giving a one-off donation or sponsoring a nurse to organising a fundraising event, I know that organisations like Charlton Farm always appreciate whatever support you can offer.
Now, let’s spread this blog far and wide to tell as many people as possible about the amazing job children’s hospices do J
Download this poster as a pdf: https://www.chsw.org.uk/sites/default/files/event-files/C16315 CHW 2019 Awareness A4 Poster_hse.pdf
Elijah Hodges and Kaddy Thomas.