Isolation update

Three and a half months ago I wrote my first blog as we entered isolation, intending to write regularly throughout our time shielding. As per usual the kids have kept me too busy/worn out to write but I thought it was time for an update, as much of the rest of the country returns to some levels of normal.

Thankfully Steve was furloughed near the start of lockdown which has enabled us to cope! We usually have quite a big care package in place for William which has all had to stop. In term time he would be at school full time, we'd have carers four evenings a week and he'd get 3 nights away every six weeks to give us a longer break. During school holidays I would always have a carer or Nana here to help as it's just not possible to look after the three children by myself.

We've tried to embrace the opportunity to spend this time together. It's been lovely to have Steve with us for so long, to not have to stress about being anywhere on time and to enjoy spending time together just us. We are so thankful that Steve's job is secure, we have a garden space and a house well adapted to William's needs. There's been plenty of moments of stress and tearing our hair out - mostly involving getting Eliza to do school work, getting Eliza to tidy up and Cecily's love of screaming! We are also knackered by the end of every day! We rarely finish getting the children all settled and the house tidied before 9pm and then there's often something else to get on with. Thankfully all the children mostly sleep well so we get a rest overnight!

Things are now starting to change though. Steve is now on part time furlough so needs to find time to work. William's professionals have started to book in some more phone or video calls. Lots of Eliza's class are now back in school and more work is being set. We still have a month of shielding to go and we have no idea when we'll be able to get carers back in.

As many people's lives return to some levels of normality in some areas, families like ours are struggling on with no usable care package. We have no idea what is going to come next in this pandemic. Worst case scenario is a second wave and we have to prepare that we will be the last released from lockdown and the first to be locked back down. We were keen to get some care back in place while we can to give us a bit of a breather in case a second lockdown comes but it's not going to be straight forward!

There are government guidelines in place that all carers should wear PPE when providing care in homes. However, where a carer is carrying out an Aerosol Generating Procedure (AGP) they need to wear full level PPE consisting of a fit tested mask, gown, gloves and eye protection. One of William's medical needs is on this list. Last week we began the process of trying to obtain PPE, but it soon became clear that this wasn't going to be easy! Firstly we were told that Public Health England were reviewing the procedures considered AGPs, so they might not apply to William. We are waiting on a decision on this which will indicate which level of PPE our carers would need. Presuming the worst case scenario, that we need full PPE, we then need to wait to find out who will carry out the fit testing assessment on the carers for their masks, who will train them in putting on and taking off their PPE, and of course - who will pay for it! From experience, these things are never quickly solved so we have no idea when we might be able to access home care again. Furthermore, a lot of the same issues will apply to school, so we have no idea if William will be able to return to school in September or if it will take longer to get things in place. There are many many unknowns so it's just impossible to plan more than a few days at a time.

William needs someone to do everything for him, he needs someone with him all the time. He needs dressing twice a day, nappy changes five+ times a day, feeding three times a day, all his feeds making up, he needs playing with because he can't move independently or see, he needs a full physio programme, he needs moving regularly throughout the day because he can't stretch his legs, roll over, or shuffle off an uncomfortable spot. Every time he coughs (which is a lot) he gets into a bad position and needs readjusting. He needs supporting through a seizure several times a day, he needs his airway clearing many times a day, he needs nebs and chest physio every day, and he needs all this kit cleaned and maintained. Bear in mind, he weighs around six stone and has problems with muscle tightness so anything involving moving him is physically really hard work and time consuming. Changing a nappy on William is nothing like changing one on a baby!

It definitely feels a bit like families like ours have been a bit forgotten in several ways. If we didn't have a big mess over PPE at the start of Covid, maybe it could have been sorted by now so we could have carers. If everyone had followed the rules and exercised more common sense, maybe we'd have fewer cases by now. My hopes of avoiding a second wave are really slim. I often wonder how many of the people not following the rules have nothing much to lose. Maybe they're young and healthy with no one to worry about who is at risk. Meanwhile we have strictly followed the rules but will pay the price of others not doing so by being locked down longer, being without care and respite for longer, and not being able to meet all of William's needs.

The challenges faced by families with additional needs children varies so much, and by no means does our experience reflect that of other families. But it is clear that some of the most medically complex and fragile children, whose lives rely on AGPs, have been left with no practical support for their children.