Hello, my name’s Francesca and I work as an outreach nurse specialist at Helen House Children’s Hospice and before that I worked at Rennie Grove Hospice Care as part of the children’s team.
What’s the big idea?
I have looked after so many amazing families who face the most difficult of times, and have seen first-hand the difference children’s hospices make. This Children’s Hospice Week I want to tell you about the CHATUK project, my national fundraising and awareness challenge to cycle around every Children’s Hospice in the UK, starting at Helen House as the worlds first children’s hospice and finishing at Together for Short Lives as the national charity for children’s palliative care.
I’d spoken to Together for Short lives about this idea a few months ago and we were really excited to see where it could go, but then Coronavirus happened, and life changed for everyone, especially our children and families.
How has Coronavirus made an impact?
In normal times, looking after a child with a life-limiting or life-threatening condition is physically and emotionally exhausting, but now it is even harder. As many of us ease out of lockdown most of our families are still shielding to protect their children, which means the safest place for them is at home, with as little contact with other people as possible. This puts huge pressure on families.
Looking after a child who is seriously ill and has complex needs is 24 hours a day and parents need to be constantly aware of any changes that need to be made to keep their child safe, on top of the worry and uncertainty they face with their child’s condition. All this is on top of the other pressures families face in lockdown, with work, finances, looking after other siblings and homeschooling and worrying about friends and family.
Whilst our families are doing all they can to stay at home, their children’s conditions mean they can become unwell quickly and need frequent hospital admissions and now only one parent is allowed in the hospital, meaning parents are separated from each other and either their unwell child or any other children. It is such a difficult time and the restrictions have a huge impact on our families.
Why are children’s hospices so important?
As children’s hospices we are doing everything we can to support families in providing this care at home, especially as many of us are currently unable to provide the respite stays that are normally so important to them. With many services restricted and families trying desperately to stay at home, recognising when a child is unwell and any changes that need to be made becomes increasingly important. We support families in caring for their child at home and if they become unwell to the point this is no longer possible we support them in decision making on the next steps, be that going to hospital or coming to the hospice.
Every day I wonder what these families would do without the support we provide, yet every children’s hospice is a charity, and we are completely reliant on donations and fundraising in order to be able to do the essential work we do.
More determined than ever
This makes me all the more determined to do my cycle challenge, which will now be in 2022. Two years seems like a long way away, but actually that’s two years of raising awareness and connecting people which is a huge part of what this project is about. This is not a solo project and I’d love to have as many people involved as possible. So if anyone wants to join a leg of the challenge, or help or support in any way they think might be useful, please get in touch via together for short lives. This is a constantly evolving project and there is a lot of planning to do…my background is running and so planning routes that go all over the United Kingdom, and learning how to fix a puncture are going to be challenges in themselves! This is just the beginning!
Our children were vulnerable before coronavirus, and they will be vulnerable after coronavirus, so let’s join together to ensure we are able to offer the best support possible now and ensure our support is there in the future, as we come through this crisis.