Give the invisible children a break too

A few years ago I wrote a blog post about whether respite was a right or a privilege.  It has always felt like I should be so grateful to the powers that be for the opportunity to get a full night's sleep.

When you become a parent you expect that the early years are going to strongly feature broken sleep and long hours watching the latest Disney offering, but eventually your child will sleep through and become independent and your evenings are reclaimed.  And as they grow older they go on sleepovers at friend's houses, stay with Grandparents and go away on school residentials.  Eventually you find yourself (as I often do with Theo) texting them to see if they are coming home that night and will it be OK to put the lock on the door!

Except of course, if you have a child like Daisy. Daisy doesn't do sleep.  She does not sleep during the day, unless she is poorly, and at night time it takes hefty doses of medication to help her get to sleep.  A sleep that is characterised by constant moving and twitching, apneas and snoring, coughing, sometimes seizures and vomiting.  Now Daisy does not sleep unless there is someone awake nearby to make sure she is safe.

We are fortunate that a few years ago, when we were on our knees with fatigue, a nursing package was put in place to support us overnight.  We endured 5 long years of living like zombies to get to that point, but now most nights a nurse sits with Daisy for 8 hours and I can get some sleep.  This still leaves 16 hours in the day when I care for her, and her care is becoming more and more complex.

The one constant in our life with Daisy, along with her every changing and deteriorating medical picture, is our hospice, ShootingStar-Chase.  We were first referred to them when Daisy was 6 months old and they really have been our lifeline.  There are so many ways that the hospice have supported us over the years, from a very special stay over Christmas when we were going to have to spend yet another one in hospital, sitting with Daisy in PICU so that we could take our son out for a birthday lunch, supporting our older children as they adjusted to life with Daisy's constant curveballs and surprises and now as Daisy is older, giving her the space she needs to be independent away from us.

Andy, Daisy, Xanthe & I at a recent fundraiser for ShootingStar-Chase

The times when Daisy goes into the hospice for a short break allow us to catch our breath.  It's not really respite because there are still three other children with all their individual needs and Andy's cancer treatment but at least I can go to bed early , or watch a TV programme all the way through (when Daisy is at home I am in her room for a minimum of 2 hours an evening running through intravenous meds and sorting her out for sleep, all before our nurse arrives) and if Andy feels well enough we can get out of the house.

The respite breaks that we get from the hospice don't cost us anything, when Daisy is there she has a highly experienced, IV trained nurse plus a carer looking after her, that's how complex she is.  But as well as being free to us, they also don't cost our local authority or health authority a penny.  This is the reason I focus so much of my spare time on raising awareness and funds for children's hospices, they provide an invaluable service to families like ours yet there huge inconsistencies across the UK in how they are supported and funded.

To be able to get a break from caring for Daisy is essential so that we can continue to care for her safely.   No nurse would be expected to provide the sort of care I adminster day in day out without a break, and now that Andy is ill my caring responsibilities have doubled.  Factor in the two boys with high functioning autism and the mental strength that is needed to manage their needs and you can see why I need a break now and then. However very early on I learned that the more complex your child the less support is available, because it costs so much and because staff are difficult to find.

The previous government committed £800 million for short breaks for disabled children over four years. This funding ran out at the end of March this year and there is currently no commitment to continue it.  The problem is a lot of that this short break funding did not meet the needs of the most complex children, children like Daisy and as always it has fallen to the voluntary sector to pick up the slack.  ShootingStar-Chase alone has to raise £9.5m each year to provide their services through their two hospices and their hospice at home team.

And despite providing short breaks to some of the most complex children in the UK, many children’s hospices, including our own, have not benefited from this investment in short breaks. Nearly half of children’s hospices in England receive no funding from their local authorities.

Why should children like Daisy be denied the chance of short break and a childhood because their complexity makes them expensive?  Daisy fought to be born, she survived her first year, she has survived infections and huge surgeries, she keeps on fighting, and she is determined to have time as a little girl and have fun.  She can't go to Saturday clubs, sleepovers, brownies, youth clubs, discos all the other things that 10 year old girls do, but she can go to the hospice and have some time away to be herself and decide what she wants to do.

Short break funding needs to be renewed and ringfenced so that local authorities have to spend it on precisely that, short breaks, for ALL children who need them.  And for the most complex children this means ensuring the service that they lean on heavily to support them also gets a share of this funding.

For me this is just the starting point, correcting the inequality in short break funding.   But we also need to wake up to the fact that children's palliative care services cannot continue to provide their essential lifeline without some guarantee of year on year funding.  There are hundreds of children like Daisy who have defied the odds and because of medical science are still alive, children who would not be here a few years ago.  Parents and carers are saving local services millions by providing the day in day out care of complex children but we are on our knees.

It's Carer's Week in the UK (8-14 June 2015) and I want to make sure that the carers of medically complex, life limited children are not forgotten.  We work tirelessly day in day out to keep our child, not just alive but thriving.  We fight to make sure they have the same chances as other children, including those with less complex needs.  We educate ourselves on their care to make sure that we can give them the best.  Simple things like getting to the park are complicated military operations but we do it because we want our child to have the best possible chance to just be a child and not a patient.  And this is why we rely on the support from our hospices, because they get it, they know how hard it is, day in, day out, they know the inevitability of the life we live and will be there for us at the end.

Simon Cowell is Vice Patron of ShootingStar-Chase and a loyal support of the work of Children's Hospices in the UK

So my plea to Mr Cameron and his new government is not to forget the complex children, ringfence short break funds so that they don't disappear into bureaucratic black holes and make sure that they are distributed fairly, not just for the quick, visible wins, but for those of us hidden away, those of us parenting medically complex, life limited children, day after day, night after night, on our knees, often on our own, but still going because our child deserves this chance to be a child. 

 Maybe one day I won't need to fundraise and go on about our hospice because it will receive guaranteed funding year on year, but in the meantime, please excuse me if I do, it's important to me, and it's essential for Daisy.