Respite

In the past we have received respite from a number of different places, however our current system of support is something called Direct Payments. This is where William's needs are assessed and an annual pot of money is allocated to him according to his needs to buy in PAs/carers. I am the employer and am able to hire my own employees and I set the rota. This has worked incredibly well for us as we have three brilliant girls that come in one evening each per week and for longer days in the school holidays to help care for William. They all know William through school and that cross over of care has been vital to the success of it all. As I am the employer we are able to be much more informal about how things are set up and this suits us all. We could not get by without the help of our direct payment PAs, but what they provide isn't really respite. They are here because come 4pm we are a three parent family if we want to get to bedtime at a reasonable hour without a ton of stress. It takes three hours (if you're quick) to get William to bed every night. Managing his full on bedtime routine, cooking dinner for us all and getting a three year old to bed can be a bit crazy when it's just Steve and I. 

When we talk about respite what we really mean is a break away from your caring duties and a chance to switch off a bit from your day to day life. Respite for us, getting a true break, means William being cared for out of the home overnight. Having someone in your home to help you get through the evening without going crazy is fantastic, but it's not a break. 

Two years ago we switched the way we fed William, with the support of his medical team. Unfortunately as this is still a relatively unorthodox way to feed a tube fed child William has been unable to receive respite at our local hospice while they work on a policy to allow them to feed him. This has left us without proper respite for about 18 months. We had just about reached a stage where we thought he could start having breaks at the hospice again when diabetes hit and that threw a real spanner in the works!

While type 1 diabetes isn't an overly rare condition, it is very rare in children like William. His diabetes has to be managed with the most specialist equipment currently available to type 1 diabetics and in order to be able to use this equipment properly you need to use it often because there's a lot to remember. This set us right back to square one with the hospice because their rota pattern isn't compatible with caring for William on a frequent enough basis. 

As a result we went to panel last month requesting approval for respite through a service called Link. This is run by the local council as part of the fostering team and would see William cared for in another family's home one weekend a month. This seemed the ideal option for us as it suited our preference for more informal care and would ensure continuity. After a lot of work from the team around William and myself we were approved, despite William being two years younger than the usual starting age for Link. Of course though, as with anything involving William, it has not been straight forward and the only family registered with Link who are able to take in someone of William's complexity have had to be ruled out because of a number of practicalities. 

So we are now back off to panel in search of another solution. We have another idea we are putting to them but who know if it'll be agreed as it's quite unusual. But William is unusual. 

There is a strong chance we just won't end up with any overnight, proper respite. How can it be that a family like ours, caring for one of the most medically complex children in the county, cannot access respite? The temptation is to stamp our feet and berate the NHS and County Council for not meeting our needs but it's just not that straight forward. William has been assessed as being eligible for overnight care, that is not the problem. The fact is that children are able to live with ever increasing medical needs supported by increasingly clever technology. As a parent you have to become the expert in your child's care because their life depends on it. Steve and I find ourselves uniquely trained to meet William's unique set of needs. We are a bit of a continuing care nurse mixed with a bit of a diabetes specialist nurse, with a bit of dietitian, physiotherapist, doctor, occupational therapist and intervenor thrown in for good measure. Where do I even begin to find someone else with this unique mixture of skills to care for my vulnerable, fragile child? The truth is I don't. There is no one. I can search for a best fit, the closest match, but they will never have the same knowledge and skills Steve and I have. 

So what's the solution? I don't really know! For us, I suspect the solution is perhaps in two parts. And I imagine these ideas would suit a lot of families in our sort of situation. 

Firstly, continuity/crossover of care is absolutely vital. The key to the success of our direct payments set up is that we have good carers who have a great relationship with me. The girls work with William in some capacity at school so they are seeing him most days. They've had the opportunity to become confident and familiar in his care needs and have had the training they need for the many medical tasks they have to carry out. But we are now also friends, so any little change in William, anything new we see, any thoughts we've had about improving something...we share it all with them via WhatsApp. We've been able to do this because we have become friends and because they actually care about William and want to know what he's been up to. They don't do it as a job or for the money, they do it like a grandparent looks after their grandchildren, because they want to be with William. If Steve or I aren't there these girls are the next best thing because they know William so well. Currently, I can only see a way forward with overnight care if our PAs are part of it. 

Secondly, I think we need to start flipping around the way we look at providing help and support to families like ours. The parents' expertise is unparalleled and they will always be best placed to provide their child's care. In many cases, especially where the child might be severely life limited, the parents will want to spend as much time as they can with their child and caring for their child. So why do we always look at taking the parent away from the child to release them to do other things? Some weeks we have carers in four nights from 4pm-8pm. We need this help, but that can mean I go a week with barely communicating with William. What if instead of paying someone to come and care for William all the time there was a balance, and sometimes people came and helped in other ways? What if someone came to clean once a week or to do some admin? What if someone cooked a meal instead of feeding William? 

Our local hospice are just launching a campaign (https://www.each.org.uk/support-us/fundraising/appeal---each-help-at-home) to raise money to start a service to support families caring for a complex child in alternative ways. This is very exciting! As my lovely friend Suzanne shared on her facebook page:

"Ok, so I'm not a natural fundraiser, but this, as innocuous as it seems, is a revolutionary idea within U.K. support paradigms. We want to be with our children, and yet the only support available involves people looking after our children. So much cheaper (and effective, and also meeting the needs of the families concerned), to do the jobs we necessarily put to the bottom of our "to do" list, where they languish for evermore. And that in turn affects the way we see ourselves. A cleaner or gardener does not require training in seizure support, tube feeding, sensory needs, sign language. And yet the impact of having a clean orderly house, dishes done, plants flourishing in the garden... immeasurable. So even if you don't feel that it's right for you to give, please share this far and wide, and bear it in mind when offering support to a family such as ours."

There's no doubt there's lots of types of help and support out there for families like ours but I know of more and more families whose needs aren't being met because they can't find a service to meet their specific needs. We need to rethink about how we provide care for our most complex poorly children so but the child's needs at the centre.