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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To be sick of NHS false economies?

6 replies

SinkGirl · 08/11/2018 22:09

It feels like I’ve been at the short end of this stick for a long time but it’s now affecting my children and that feels very different.

I won’t go on about the specifics as it’s a long story but sufficed to say my son (2) has complex health needs and investigations and waiting lists for treatment are just ridiculously long. From raising concerns early this year, it will be almost 12 months by the time we even start out the treatment he needs, if we are lucky.

The whole point of early intervention is that the earlier you get to the something, the more effective the intervention will be. I am constantly beating myself up that I can afford private therapy (he is a twin, and his twin also has no speech whatsoever so I would need to pay for them both to have SALT and OT for the one who needs it). Meanwhile they ordered some important blood tests in August and we aren’t going back to see the consultant until February for the results. He’s been diagnosed with a visual impairment but they can’t tell us how bad until he can talk, and he can’t even say one word yet - we were supposed to see the ophthalmologist again around now to talk about other options, but I’ve just realised we’ve never had an appointment through while I’ve been preoccupied with trying to sort out everything else.

This is just so infuriating. I’m on the verge of taking out a load of debt just to get him seen now - we can’t afford it but what am I supposed to do?

The whole system is shooting itself in the foot.

OP posts:
TrueWierdness · 08/11/2018 22:16

I'm sorry you're not getting the assessments and interventions your son needs, and you're right that early intervention is key.

As a parent and health professional in the NHS, i can see that our health service is on its knees.

SinkGirl · 08/11/2018 22:27

Thank you. I just feel like I’m doing everything I can but I’m hitting dead ends. I self-referred to portage so we weren’t waiting months for a referral to be made, so we are now having sessions but they agree we are sort of at a standstill until he gets professional help - some of which he’s waiting for and some he hasn’t even been referred for. He’s obsessively mouthing everything, which is not only dangerous but he can’t focus on anything else but they haven’t referred him back to OT (who discharged him before these problems started as they said he was on track, yet his consultant says from taking his history it’s not just regression, some skills he never acquired so really he shouldn’t have been discharged in the first place).

Sorry I’m rambling. I’m just so frustrated and angry, because they’re not only making his prospects worse but they’re making it harder for themselves (the system I mean, not the individuals who I know are doing the best they can).

Earlier this year he needed an mri of his brain and we saw his paediatrician who told us it was clear, and we had 24 hours of huge relief. Then we saw another consultant who said actually the results show he has a specific type of brain damage, but it’s probably not a big deal. A few weeks later we saw another consultant who said actually it might be related but they can’t tell. It’s just hard to keep trusting a system that keeps cocking things up (and that’s not even getting into the things like screwing up blood tests so they have to redo them, not communicating properly with ward staff while doing dangerous tests so no one knows what’s going on, not knowing the basics of the condition he has and googling it when I ask a basic question, etc). Sigh,

I’ll be okay tomorrow - today I’m just annoyed, tomorrow I’ll find a way to sell a kidney or something to get him what he needs.

OP posts:
Didiplanthis · 08/11/2018 22:36

I'm with you. I have had to pretty much give up work (in the nhs !) to care for my DC with additional needs. I have used all my savings getting them properly assessed in a reasonable time frame... but having worked in the system i know how it is falling apart.

TrueWierdness · 08/11/2018 22:40

I wondered if it would be worthwhile discussing your concerns with your health visitor. Perhaps they can support you and be a 'link' between the services?

SinkGirl · 09/11/2018 08:42

Sadly not - we are on our fourth (I think) HV, I met her once. They’re so stretched as lots of them have left or retired recently. Our portage practitioner is fantastic and trying to chase things up for us, but we aren’t really getting anywhere.

I’ve taken to reading books and trying to work with him myself but I have no idea what I’m doing.

OP posts:
SinkGirl · 09/11/2018 08:43

I’m so sorry @Didiplanthis - your DC is lucky to have you Flowers

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