Definition of respite (by Merriam Webster)
1: a period of temporary delay
2: an interval of rest or relief
We all know having kids transforms your life. Parents of completely healthy kids struggle with child care arrangements and often miss the carefree days before kids when they could come and go without having to worry about who looks after their offspring.
This gets further complicated when your child is chronically ill or disabled. There is no option of getting a babysitter through an app or ask your friends and family have your kid over for a sleepover when your child has complex medical issues. Even the homecare workers funded by health and social care rarely are allowed to look after kids like Freya alone, meaning that practically parents like us often feel tied to their homes.
Finding out your child’s disability is a watershed moment diving the lives we used to have from the lives we have. Everything changes: Our routines, our jobs, our finances, our relationships. And once the dust settles and we get used to our new normal we realise not all has changed and we still have responsibilities and aspirations outside the bubble we create around our medically complex life; family members still get ill, friends get married, we still need to take time to look after our physical and emotional bodies. How can we partake in our lives if circumstances keep us tied to our homes?
The solution? In theory, provision of respite via specialist centres, like children’s hospices. Whereas there is no such thing as “right to respite”, people like me who look after a sick family member do have a right to have their needs as a carer assessed and ask for respite (and your Local Authority is under a legal duty to consider how to meet your needs – see my previous post about carers assessments, titled “Who cares about the carer?”).
The problem is that both funding for families to take their kids to respite and the funding of the respite centres and hospices have been cut. The availability of respite for children like Freya who are tracheostomy and ventilator dependent is particularly dire. Following an incident in a hospice where a wrongly assembled ventilator circuit led to a child’s death most hospices simply refuse to accommodate tracheostomy vented children without a carer or parent in tow.
This means that when it comes to respite our family has three options: To go with Freya, try to force the local authority to fund an additional carer or make do without.
We have made do without. Where a night in hospice costs about £500, sending 24 care with Freya would cost us an additional £1,000. a day. Unsurprisingly the money is not forthcoming from either NHS or social services and we are caught up in “no can dos” and endless delays.
However nice some children’s hospices are both psychologically and practically a family holiday in one is not what we want. Whereas parents like us often manage to construct a life and a routine where the “life limiting” aspect of our kids prognosis gets pushed away from sight to enable us to function, being in a hospice environment unavoidably brings some pretty difficult thoughts to the forefront of our minds. Secondly we have spent enormous amount of time in hospital accommodation away from our own homes. As far as I am concerned I do not need to wake up anywhere semi-medical with my ass stuck onto a plastic covered mattress. I get to do that plenty when Freya gets admitted to hospital.
It’s not all about cuts though: Where children’s hospices are generally nurse led I simply do not understand why they do not train their staff on ventilators. After all, at home both parents and carers, who do not benefit from academic and practical education nurses have, have to do the ventilator training and manage. If your average tracheostomy ventilated child qualifies for 12 nights of respite you do not need a PHD in mathematics to see the savings involved in cutting out the cost of agency carers going with the child. Particularly as most hospices have more than one child on a similar type of a ventilator in their books.
Instead, tens, if not hundreds of families who most need the respite are denied it, with their kids deemed too difficult for hospices to bother with and local authorities hoping parents are too exhausted to take on yet another fight for services they are legally entitled to.
Disappointing, right? Avoidable, stupid, lazy and bad for families and taxpayers alike? For sure. Families like ours do not need anymore people telling us “computer says no”. What we need is practical solutions to help us with the challenges of our lives. We need to be able to do an occasional weekend away. We need to be able to sometimes go away to weddings, funerals, big birthday parties -to take part in our lives in some other capacity as 24/7 carer.
I’ll tweet this blog post to some of the children’s hospices to see if they have any views on the matter. If you are in similar situation why don’t you do the same?