Friday, 3 September 2010

Maggie and the NHS

Maggie's taken a few steps back recently. She's been throwing up, for these past couple of weeks, with every feed. Projectile vomiting and constant churning as she's feeding. It makes her very upset, very loud and very unsettled. Our nights have been nightmares.

Plus - a big plus - it means that she doesn't put on weight. Which is so important for her and her development.

It occurred to us the other day that if Maggie were a normal baby we'd just ring the GP and get her seen to. But because we have open access to the hospital's Children's Assessment Unit - where doctors reside - Shannon took her there instead. She took Alice too. Shannon with twin babies, one of whom was in an obvious state.

They kept them up there - the vast majority of the time just waiting around - for almost seven hours. Seven hours! That's practically a full working day.

Bear in mind that it wasn't them just sitting there. Shannon had to feed them both and entertain them and, most importantly, fiddle about with Maggie's feed machine etc. With Maggie constantly howling.

I complained about this via Twitter and the fella who looks after the hospital's Twitter account said he'd look into it. He came back with the suggestion that the reason they kept them there so long was that Maggie was under observation. Not so, I said. He then came back and said he'd spoken to the sister and that she'd said that as Maggie had had a temperature they wanted to wait until it went down. I pointed out that Maggie didn't have a temperature. He then told me that she did. I insisted that she didn't and suggested that he might have got his facts wrong. He countered this by saying that the senior nurse told him that that was the case and that it certainly sounded like Maggie. I suggested he ask again.

So, basically, he was insisting that the length of time they were there could be explained by the fact that they were observing her.

The next morning I received an apology from the Twitter fella. It turns out that I was quite right after all - Maggie didn't have a temperature. It was 'crossed wires'. But still, there was no explanation of why they were kept waiting for so long. I suspect it's because there was absolutely no fucking good reason why they were kept waiting for so long.

I mention all of this as a way of providing insight into what it's like sometimes. It's not just us sat at home with a disabled kid. She's really difficult and requires constant attention. Everything about our lives is to do with, and affected by, Maggie.

So occasionally we seek outside help. And almost every time we do that our lives become a little bit harder, instead of easier.

Except for Quidenham. Who are so great and helpful and lovely. God bless them.

That hospital experience, by the way, isn't an isolated one. It happens every time we go up there. They get us in, they have a quick look, they fuck off for hours and then - when we've demanded, time and time again, that someone sees her because we've been there for hours - someone turns up, sheepishly apologises and mutters something about observing her.

Crossed wires and miscommunication are par for the course.

This isn't really a complaint about shit NHS service. This isn't really a complaint about incompetence. This is a complaint that comes from wanting what's best - and what's right - for Maggie. She hasn't got a broken leg or a fever or something that can easily be patched up. She's got something that will affect her for the rest of her life. That has ruined her life. The only chance we've got of making it bearable for her is trying to get on top of things in these first two years.

So you can perhaps appreciate why we get so upset and angry about the fact that some of the people we have to rely on let her down so often.


  1. My heart bleeds for you. I had 3 wonderfully healthy kids who make me proud but if i was in your situation i would be screaming! As you already know I so appreciate my luck with my kids - the whole "but for the will of god i go there" thing - that ANYTHING i can do to help i will, just ask, it breaks my heart and your strength in dealing with it all is amazing you have tons of respect from me and I worry about you. Any way just ask and hey if you really want the birthday cake at least tell me the date - dont worry about the design etc I will give you my best!!

    Love Gill

  2. really sorry to hear Maggie's not doing so well. And how the hell can they keep you waiting for so long everytime you go to that hospital?? Shannon, you are truy amazing & strong for managing that. When I think about Analou having to wait anywhere for more than 10 minutes... Wish I could be there to help you out...Hope Maggie will get better again soon. xxx Wini

  3. i know that if i were in the same situation, i would no act so calmly. i just feel like when it comes to hospitals and places where waiting is the expected thing... its very hard for me to behave. i cannot imagine how difficult it must be, but i can tell you that its gotta feel good to have these new ways of communicating that seem to be working, at least better than we have had the ability to in the past.

    i mean, you twittered this complaint and got some response. if you had been there with shannon maybe things would have gone differently. but that would have only been because her hands were full, not because she was any less motivated to get help.

    i can only say that if me and mary were there, we would do anything to make the day easier. you have to know we love you all very much.

    bob and mary

  4. I've often thought that if May was "normal" she'd be seen at her GP that day, but instead, like earlier in the year when May was having seizures at 3-4/ hour, we didn't hear back from May's neurologist for three months! Three months!

    I gave up after a while. Even now, I am shocked thinking about it, but the NHS broke me. My daughter was having seizures and I stopped calling and emailing asking for advice.