What if we viewed lived experience as an asset? As an asset of professional, economic,…
It’s Children’s Hospice Week this week (23rd-29th May 2016). It’s an annual week-long event and the aim of children’s hospice week is to raise awareness of the services that support children with life-shortening conditions and their families.
This year’s theme is Time to put families first and the campaign will focus on getting the right support for the whole family so families can treasure their time together.
Caring for a child with a life-shortening condition is 24/7, parents don’t get a break and so they need adequate support. Having a child with a life-shortening condition has far reaching effects and it impacts on every member of the family. The parents have the enormous task of looking after the child, they give up their lives to do so and frequently have to learn medical procedures in order to keep their child alive. They spend their lives juggling medical needs, equipment, orders, deliveries, medications, appointments, therapies, meetings. They spend their lives trying to give both their healthy child/children enough time and attention, and their poorly child the attention they need, they try to find ways to spend quality time as a family, and frequently parents barely spend time together as one always has to be looking after the poorly child, whilst the other takes care of the other child/children. Parents have enormous pressures on them, they rarely get time to take care of themselves and have to struggle on no matter how exhausted they are. However it’s easy to forget about the siblings who don’t get as much time with their parents as the average child does due to the demands of caring for the poorly child, but also, whatever their age, they have to deal with topics, procedures and feelings and see things no child should have to, and they have to learn to cope with the unpredictable world they live in.
“Will mum and dad be picking me up from school today? Or will it be someone else?”;
“Will my brother/sister wake up tomorrow?”;
“Will my birthday be spent at home and will I have a party, or will we be at the hospital again?”.
It’s terribly difficult for siblings as well as parents and other family members.
The often complex and demanding care required to manage the needs of a child with a life-shortening condition takes its toll on the whole family, and it can be hard to spend quality time together as a family as it is complicated to even to the simplest of activities. Parents also have to grieve, even before they have lost their child, as they grieve for the child they thought they were going to have, and they also grieve in advance knowing they will lose their child. It’s a sad and lonely world to live in without the right support, and that is why children’s palliative care services and children’s hospices are vital. They support the whole family, give the parents respite, allow them to spend quality time together as a family and they are there with the family through the whole journey, from life, to the end of the child’s life, their death, and right through to bereavement; these services are there for families through it all. We need to raise awareness of the amazing work these services do and the wonderful staff who make the services what they are, and hopefully to break the myths surrounding the word hospice so that more families can benefit; so many are put off by the word hospice, thinking it’s a dark, sad and upsetting place where children go to die and that’s it, but if they knew what wonderful, bright and happy places children’s hospices are and the scope of the care and support they provide, it would mean these services could reach more families who need it. However, funding is crucial since all children’s hospices are charities and cannot depend on reliable and sustainable government funding. The amount of funding they receive from the government, CCGs and local authorities is very low, so they depend upon the generosity and kindness of donations and fundraising.
Children’s Hospice Week is spearheaded by Together for Short Lives. This year the charity are asking for support by sharing an #ourselfie image on Facebook or Twitter – it could be a family selfie, a child’s drawing or painting, or a family picture from childhood. Alternatively you can share what family time means to you by using #myfamily which could be a family memory, tradition or something special you enjoy doing as a family. Be sure also to use the tag #ChildrensHospiceWeek in your posts and tweets too.
Here’s what Together for Short Lives have said about this year’s Children’s Hospice Week:
Throughout the campaign week we’ll be showing what life is like for families caring for children with life-shortening conditions and how services help families make the most of their time together. We’ll also be calling on the government and the public to put families first to ensure that they get the care and support they so desperately need.
Please tag any social media posts on Facebook or Twitter with #ChildrensHospiceWeek and #ourselfie or #myfamily.
So please, get posting and tweeting with the above hashtags and show your support for families caring for children with life-shortening conditions, and for the services that support them.
This year to celebrate Children’s Hospice Week, I thought I’d do something a little different. I do enjoy writing poems, so I wrote a poem. However rather than just write a poem and post it here on my blog, I decided to turn it into a video and recording as well. So here is the finished result.
Thank you to the families who allowed me to use photos of them and their children.
I hope everyone enjoys the video.
Here is the written version of the poem.
What do you know about children’s palliative care?
I bet some will think it’s too painful to bear?
I daren’t think of what horrors appear in your mind
If I said the word hospice to most of mankind
An image of a place, full of death, doom and gloom
Which couldn’t be much farther from the wonderful truth
A children’s hospice is a home from home
Where families are supported, and feel less alone
Where care is provided for each family member
Where memories are made, for families to remember
Yes it’s true children can go there to die
Their final journey ends and their family will cry
But it’s also full of children, who are there for respite
For the family to regain their strength to fight
Support includes finding the right medication or treatment
And extends all the way beyond death to bereavement
It means that a child, who was struggling in pain
Is now comfortable and able to live life again
It means that suffering is reduced or abolished
The difference it makes, could leave you astonished
So why so little funding for such an important support
For children whose lives will be sadly cut short?
For families who will suffer the most dreadful loss
Surely that gets the message across?
Children’s palliative care is an extremely vital service
In hospital, home, or hospice fit for purpose
So these life-limited children have all their needs met
Through the end of their life, but also right from the outset
Please help support families and life-limited children
Don’t let them be forgotten, or worse still, hidden
The world needs to know that palliative care
Is a vital and growing area of healthcare
So it need recognition, and adequate funding
So that these vital services can continue running
We also need to break down the myths that surround it
So that more families understand and can benefit from it
So that they can make the most of the time they have left
With their child with whom they were incredibly blessed
And then families have to learn to cope and to grieve
To accept their pain won’t go, but that it can ease
As they learn to remember the good times they had
And try not to think about all of the bad
The hospice is there every step of the way
And helps them to cope with every new day
Please help these families to access support
The ones whose child’s life will be sadly cut short
(c) Lucy Watts MBE – May 2016