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To not know what to do from here?

(10 Posts)
SnorkellingCat Fri 06-Oct-17 14:32:25

I've posted before, but will quickly repeat myself.

DD is 2.3, but has a developmental delay of around 4-6 months. She has a hip condition, a hearing problem we're waiting to hear back from ENT about, a squint in her eye which will be operated on but is stable enough right now for other conditions to be more important and take presidence. She's also suspected imunocompromised as she picks up every cold and cough going, and seems to have constant sickness bugs.

I've rung up 2 departments today to chase appointments - ENT and the Child Development Centre (CDC) where the paediatrician is.

The CDC did some assessments on DD in July and I've been waiting for an appointment with them, they told me they were waiting to hear back from ENT but ENT never got back to them about when the appointment was or when they planned to see her they apparently wrote to DDs health visitor (who made the original referral) to say that they'll expect her to re-refer DD when ENT have seen her. I rung the HV who said she'd tried her hardest to persuade them to at least see us once before discharging us but apparently the paediatrician won't see us until he has "the full picture".

So I called ENT to chase them, they have an appointment for her at the end of January but I want to be sorting this sooner so was going to pester for a cancellation (again this was the second time). According to the lady at the end of the phone if they get a cancellation in time then the it's offered to people at the top of the waiting list not those who already have a long wait for an appointment. So I said I could go to a same day appointment if they got a short notice cancellation, but I have to go on a waiting list for that, they only call the first 3 on the list even if they can't take it as they don't have to offer it to anyone else (fair enough I suppose) and DD is now 1002 on the waiting list for a same day appointment. We're not going to get one are we? Apparently you can be on that waiting list whether it's your first appointment or your 14th, so people can keep rejoining the list after appointments and if you can't go to the appointment on that day you don't move off or down the list you just sit on it. ENT can't even tell me how many appointments they think DD will need as they haven't seen her to be able to know.

Suppose this is a bit of a moan. I want to sort my beautiful girl out but can't afford to go private so am at the mercy of the NHS. And also to ask what do I do now? Is there anyone else I can contact?

CardsforKittens Fri 06-Oct-17 14:46:55

That sounds like a very difficult situation your poor daughter!

You could try contacting your member of parliament. I don't know if they can help but it might be worth a try. Most of them take an interest in what's going on with public services in their constituencies.

Hope you get an appointment soon.

Ttbb Fri 06-Oct-17 15:04:05

Typical NHS. I would strongly consider moving to Australia if you can. You'll never get the treatment that she needs in the UK unless you pay for it.

sickofital Fri 06-Oct-17 15:04:39

Sounds a lot like our trust! I ended up going private for the initial test and then transferring back to public with my littlest

sickofital Fri 06-Oct-17 15:06:18

@Ttbb it isn't always as simple as that, with pre existing conditions it's unlikely the daughter would actually be granted a visa and if she does they'll probably have to pay for any medical procedures relating to those themselves anyway

SnorkellingCat Fri 06-Oct-17 15:21:13

Ttbb I don't want to live abroad though, I'm happy here in the UK and it's all DDs every known.

SnorkellingCat Fri 06-Oct-17 16:16:32

Sick How much did it cost? I can't really afford it but I do have a credit card so could put it on there, it's worth getting into debt for.

Cards Local MP may or may not care (he's conservative) but I'll find out his address to write to him about it.

Schroedingerscatagain Fri 06-Oct-17 16:33:29

Snorkel

Ring your local private hospital and ask it about an initial appt with your ent consultant privately will be in the region of £200 you will need a gp referral letter

When there ask the consultant for all tests to be done as nhs. Although some may say it’s unfair this is a well used route to bypass the initial waiting time

SnorkellingCat Fri 06-Oct-17 18:11:43

Schroed Thank you I'll have a look into it

sickofital Fri 06-Oct-17 18:36:45

We paid about £800 I think, but ours was higher then normal, most people I know who've done salt or ent privately have only paid between 2-300

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