I have been quiet on the blog front recently, with all kinds of nonsense popping up left, right and centre.
There’s been the continuing care assessment where the nurse assessor quite happily completed documents herself with spaces for my comments and signature without showing them to me. The Social Services agreed to put in some money in the pot for us parents to have an occasional night out, but then have not followed up on it. For 6 months and counting. Then Haringey CCG secretly and without any sort of notice or consent, decided to give Freya’s, mine and (according to the lady I spoke to) a database-ful of personal information relating to some of the most vulnerable Haringey residents) to a private company specialising in care package consultancy, including selling services on commission. I couldn’t make this stuff up even if I tried.
But the biggest bug bear at the moment, AGAIN, is Freya’s access to nursery. For six months now we have been saying we want Freya to start trying out full 8 hours days at nursery. Maybe a day or two a week to start off with.
As Freya is starting school next year (I know! How quickly did that come about?) we want to get her used to longer days. Freya’s got significantly lower lung capacity that a medically typical child – which in turn means that she will get tired easier. It is important for us to see now how she manages now before we plonk her in a mainstream school and realise she cannot manage a whole day. Plus I after years of struggling on one income I have finally gone back to work and need Freya to attend childcare.
So six months ago I approached the relevant professionals and decision makers about all of this, repeatedly sending emails and having meetings about it …. just to be told day before nursery that if I wanted Freya to attend I would have to go with her for part of the day.
I know that this is Haringey’s preferred (and completely unlawful I might add) way of dealing with kids with tracheostomies so I told them they had to find another solution or I would start discrimination proceedings against them. Enough is enough – besides the initial settling in how many medically typical children’s parents have to go and stay at the nursery with them? After all, there had been more than ample time to put all of this in place.
The only solution left was for Freya to attend nursery for short days until the agency Haringey had instructed recruited and trained carers.
This is obviously not what we want. But the real reason why I wanted to share this with you is to show how poor planning by professionals working with sick and disabled children costs all of us disproportionately in tax money.
Let me explain:
Had the professionals involved listened to me and the training of the carers would have been started in the spring Freya could have started nursery for two and half days in September. That would have been 8 hours x 2 + 1 half day at 6 hours (as the shortest shifts the agency can staff is 6 hours) = 22 hours. The agency rate for a carer is £26.20 per hour so weekly cost would be £576.40.
In rare moment of decency (and under threat of legal action) Haringey agreed last year that until carers could be trained they would fund paediatric nurses. The problem we now had was that the agency could not find a nurse for the 8 hour days and instead could only find one for 6 hour shifts. So if we wanted Freya to get her 15 hours we would have to either go with her to nursery (a definite no no) or for Freya to only do short days, 5 days a week.
As the training of the carers has not been completed (they only started recruiting end of August) Freya goes with a nurse (£42.95 per hour). Because no one bothered training the nursery staff to be tracheostomy safe a carer must accompany the nurse to be a back up, for toilet breaks and such. So that is another £26.20 an hour. Where minimum shift length is 6 hours the grand total is as follows: £42.95 x 30 + £26.20 x 30 = £2,074.50.
That is a whopping £1,498.10 difference. A week.
(Please also note that it is Haringey’s own decision to use an agency and they have themselves commissioned the one we use. Some Local Authorities hire teaching assistants directly and train them up to be tracheostomy competent, but not Haringey. And if you are wondering, according to http://www.payscale.com average hourly rate of a teaching assistant in London is £9.45. )
“What is this woman on about?” You might think. “She is complaining about local government spending too much on her kid!” .
To be honest I spent a lot of time before publishing this one. I didn’t want to seem selfish. But I thought the whole situation seemed too absurd and wasteful not to share.
Let me use an analogy to explain: Let’s say your doctor told you that the medication you needed to heal an illness was not available because he had not bothered to order it, even though you had repeatedly begged him to do it for months. Instead he would offer you a medication that was many times more expensive, but worked a lot less efficiently. How would you feel? I doubt you would feel elated about getting something more expensive. More likely you’d be livid that you couldn’t get the medicine you needed because your doctor had been a numpty and not done his job right. Just because something is more expensive doesn’t make it better – or even fit for purpose.
Families like ours are constantly told that our kids needs cannot be met because there is no cash in the pot. That we should be grateful for what we get and shut up. That there are people even in worse situations. We are being shamed and bullied in silence.
That is quite frankly bollocks. What we need is to be listened to. Professionals need to be working with us openly and honestly. We need the authorities to be spending the tax money responsibly and smartly – and us parents can help them in finding such solutions if given the opportunity. We all know that doing things cost efficiently ensures more services exist for kids like Freya. Our authorities should be held accountable when things go wrong and lessons should be learnt.
Our public services are not struggling just because of funding – though obviously that is a HUGE issue. But we need to also admit that many of our public services are provided and managed in a way that is just not good enough or even fit for purpose. To me one of the biggest problem is the lack of accountability and failure by management to ensure that things are done right. And people in management positions persistently not doing this need to be sacked before they cause more havoc. Sure there will be instances where even if best planning things go wrong. But with no planning you can pretty much guarantee that they will.