Stupid is as stupid does

Ugh. Just ugh.

I have numerous times written about the bureaucratic nightmare living with a chronically ill child is and the endless battles we have faced in the last two years to ensure that Freya’s needs are properly met, but the events of last couple of months take – like people far politer than me would say – the biscuit.

Let me  quickly explain what has been going on. A couple months back Haringey’s continuing care nurse got in touch to carry out Freya’s (overdue) yearly assessment for funding for home care. The lady carrying out the assessment turned up with intentions of recommending cutting the hours, despite not having sought any updates from any of Freya’s teams. Even her final draft was riddled with mistakes; She had used someone else’s form, lazily leaving some of the previous patient’s information on the form and used big chunks of directly copied sections from a discharge letter from a year and half ago as main body of the assessment, discarding the fact that kids, even those with complex medical issues, tend to change from being an infant to a toddler.

With the usual stamping of feet and going directly to the head of service we got the assessor replaced and the new assessment seemed to be going better when I received a letter from Haringey CCG informing that Freya’s hours had been cut (the mess I was writing about in my previous blog). Haringey CCG has now admitted that this was a mistake, but not until numerous emails, threats of legal action and publicly drawing attention to their mistake.

As things started looking more settled our home agency sent in their notice. We have had a fraught relationship for months, us as family feeling that our concerns were falling onto death ears and promises made by the agency were simply not met. Quite frankly we welcomed the change – but also knew that transferring a package would be a time consuming and a complicated exercise. As our package is managed by Haringey CCG this job is theirs – and theirs only – to do.  As they are the “money men” we can’t instruct an agency ourselves. All we can do is try to get them to their job.

But nothing was happening. Haringey CCG was simply not replying to anyone’s calls or emails – not ours, not our outgoing agency’s or the proposed agencies. I felt like we were sitting on a ticking time bomb – as of 1 August we would not have any care whatsoever.  and despite me spelling out to Haringey CCG that we simply cannot safely provide 24/7 wake care that Freya requires to stay alive no one bothered getting back to me.

When this got no reply, I  pointed out the alternatives. If Freya did not have an agency in place Haringey CCG would have to pay for emergency cover from paediatric nurses. Whereas a home care package of trained carers costs that tax payer something in the region of £2,000 – £2,500 a week, emergency cover by an agency with paediatric nurses could easily cost £800 a night (that’s £5,600 a week). If this could not be organised then the only option would be to put Freya in a hospice (£500 a night), though with school holidays approaching these tend to be fully booked up by families well in advance.

The final option that I pointed out to them was hospitalisation, though as Freya’s local hospital cannot admit her for lack of tracheostomy – ventilator competent staff our only option really would have been  intensive care unit at a hospital; with a price tag to the tax payer of a well over thousand quid a night, this clearly makes least financial sense.  Putting a medically complex kiddo who is relatively stable to a PICU  just because the CCG can’t be bothered to do their job is simply stupidity to the highest degree; PICU beds are desperately needed for kids who are critically ill; it’s not a baby sitting service. And why, should we as a family have our lives turned upside down because someone did not fancy doing their job properly? Are our lives not difficult and complex enough without authorities failing their duty of care so blatantly?

So I was left with no other option than to lodge a formal complaint.  After a couple of days there was some movement. The chap whose job it was (the one who in the past had been sending out letters by mistake and struggled to spell his own name wrong) was on holiday. He had just forgotten to switch on his out-of-office on, tell any of us as that he had buggered off or given any sort of handover to any of his colleagues.

Since then it has been very much of one step forward, two step back. I got told our allocated hours had been increased to 90. Then I got a call from someone from CCG telling me they weren’t, as they had not had the right people at the panel where this was discussed (I did ask the point of whether it was generally useful or prudent use of tax payers’ money to have panel meetings where decisions could not be made, but this remains unanswered). Mere 24 hours later I got another call telling me 90 hours term time stood, but the agency we had picked up from the list provided to us by the continuing care wasn’t the list to be used, so all the leg work I had completed already on their behalf was for nothing.  But hey, which overworked stressed mother of a medically complex child with a life threatening condition does not enjoy spending hours on doing pointless work?

So as another week of uncertainty and stress is about to start us I cannot but ask – why is it that we are feeling that the very services that are supposed to be there to help us and to make sure Freya’s care needs are met safely and properly seems to be doing the opposite? Am I worried that airing all of this out in public will have a detrimental effect on how Haringey CCG will deal with Freya’s care? Of course I am, but then I ask myself do I really have other options?  Although there has been some indication our current agency would extend their notice by some weeks nothing is confirmed – there is no rota in place, no agreement in writing. And with no progress in identifying a new agency the truth the problem has by no means gone away – it has just been delayed.

And it makes me wonder –  in a Local Authority of a grim past of lethally failing its most vulnerable child residents, like Baby P and Victoria Climbie, has anything really changed? For weeks I have been shouting from roof tops, urging Haringey to act, with little progress. We are all the time receiving less actual care hours than they themselves have assessed Freya to need  – currently we are provided 20 hours a week less than allocated. What would have happened to a family with less of a – ahem – vocal spokesperson? Are sick, disabled and vulnerable kids safe in Haringey?  You can guess my answer to that.

P.S. Freya update. It has been a hard week. We had our first orthopaedic appointment on Monday and our fears were confirmed; Freya is developing a curve in her spine. Whereas a lot of people live with scoliosis, for someone as unique in their structures as Freya this really can develop into something life threatening. A lot of the treatments available to normal kiddos simply are not suitable for Freya.

Fortunately the curve is not currently affecting Freya’s respiratory function, but it was a stark reminder to us of fragile the hope we hold is.  The best hope the surgeon offered us was that compared to a normal child Freya is so unpredictable that any textbook analysis ought not to be entertained.  After a period of relative calm medically this news hit me hard and it has been a tearful week. The fear of the unknown and the knowledge that in the best case scenario we are likely to continue the highly medicalised life we lead is not an easy burden to bear.