Is this acceptable?

[IShallWearMidnight]

Brief history: DD (13) has been fainting since May, started off a couple of times a week, now up to 20 times a day. We've been through 4 GPs to get her seen at the hospital, who finally admitted her, did loads of tests and sent us home. We have a consultants appointment in 4 weeks (which was brought forward from end Sept after a LOT of struggle).

Were back in hospital yesterday as her fainting had got worse (she can't get up the stairs, faints while going to the loo, can't be left alone at all as faints while sitting still even) to be told that it hadn't got worse, she was just getting up too quickly, and that we should go home, sit on the sofa, and sleep on the lounge floor for 4 weeks till the appointment.

I know that the hospital have run all the tests they can and we need the consultant to review everything, but I don't think it's right that we are expected to sit around in limbo for 4 weeks with no-one taking respondibity for working out what the problem is.

Any suggestions as to next moves? We have a GP appointment on Wednesday where DH will rant explain why we're so cross, but the GP has already stuck her neck out professionally getting DD to be seen by a different doctor a couple of weeks ago, and getting the consultant appointment brought forward by a month already.

Tilt Table test can't be done at our local hospital Hazel, but GOOD NEWS! Saw the GP this morning and he's going to make an urgent referral to the consultant I want to see in London, who will be able to sort all that out.

Still not got all the results of the tests which have been done, and DDs fainting has got worse (up to 40 times a day now), and no idea how urgent "urgent" actually is, but I'm so much happier now (after not sleeping last night, and snivelling like a loon at the GP) that something will be happening.

TBH I don't care if they can't find a reason/cause, so long as the appropriate specialists have done the appropriate tests, then I'll know that I've done all I can.

That IS great news!

40x pd is ridiculous, there is no way that that cannot be classed as urgent. Poor her and poor you.

I totally understand the need to have had all the tests, and to have all possible bad things ruled out. You feel like you literally cannot wait, don't you?

I hope your appt comes very soon. If it does not - chase and make a fuss. I had no idea tilt tables were that specialised? They did mine in our local hosp, in a med-sized town.

Oh bugger. Having just been googling to see if I could find out what days the clinics run, and what the waiting lists are like, I find out that the guy doesn't see under 18s. Depending on which hospital the GP referred us to, he has a paediatric colleague who has registered an interest in this kind of thing, but would the person dealing with the mail pass it on? Does it work lime that, or do I need to go back to the GP with a different referral request?

In my experience, assume no one's done anything and do it all yourself. Phone paediatric guy's secretary to ask 'for advice', see if GP referral has been passed on from original consultant. Phone original consultant's secretary 'for advice' to see if referral can be passed on. Phone GP practice 'for advice' to ask if you need to see GP for second referral to paediatric guy.

If you are pleasant and grateful, these admin are your best allies and can give you access, same with GP admin.

If your NHS wait seems unreasonable, you can phone up and make a case for being seen sooner, esp paed. GP is supposed to assess for priority but when it gets specialised they get out of their depth and may rely on you. Secretary will ask the dude what he wants to do and get back to you. It's up to the consultant how he wants to run his clinic, squeeze people in.

Can I just make a plea to people not to contact PALS to try to fast forward appointments. They are to help with complaints and liaise when difficulties arise.

Sorry you're having such a difficult time Midnight , hope you get answers soon

Another very good one is to email the chosen one's secretary with a concise but specifically detailed summary of the case, asking for advice.

They particularly like this because there is something very clear to show the dude for his decision, very quick dealing with query, no chinese whispers, gives them time to think about what to do, they can just forward the email to him wherever. If he has several NHS or private practices the secs can forward these emails to each other.

Careful what you say because email is legally a letter, so relaxed, pleasant but clear. When I started with this, the secs used to say 'you can't...' but once the dude has indicated he's comfortable with email queries, the secs can see how it shifts their work pile and lifts the responsibility of 'triage'.

PALS have always been very kind about explaining the 'system', which is a mystery to the uninitiated.

Unfortunately children die assuming docs/admin have prioritised them according to their 'clinical need' rather than the need of an overstretched clinic and random appointments made on the outpatients' computer over which clinicians have no control. I was just reading a GOS comment on parents waiting 2y for a letter, child deteriorating, assuming docs knew what they were doing. I've learned to be proactive on presenting a case for decision.

Transparency on clinic hours, access to specialist, waiting lists, clinic priorities, NHS target funding in the child's specialism, allows patient/parent choice and relieves overburdened units.

Huge variance on waiting lists with same guy in different NHS practices. Of course private eg Spire, you can see him/her immediately.

www.drfosterhealth.co.uk/consultant-guide/ different NHS practice.

And another thing.

Paediatrics is not included in NHS targets and there is zero funding. My DD has chronic eye inflammation and can't be treated in PCT or county - tertiary referral, a day trip every time, even to get eye pressure checked, no local co-care at all. Try holding a job down and dealing with that including flare-ups. The local ophth triage service are not licenced for under-16s. There are no paediatric ophth in secondary care. This is because all the money goes to NHS targets glaucoma and quick-fix cataracts for elderly and independent centres follow the money.

Paediatrics respond very differently to drugs and treatment, and it's not just about doses/kg. Look at newborn compared to 9yo compared to 16yo. This is extraordinary separate medicine, can't be treated by generalists.

See how OP has to go to London to get paed neuro.

Hoping that PALS can help doctor/patient liaison for children seeking fair assessment and access to treatment.

thanks everyone, we have a little bit more progress.

The wonderful person from STARS spoke to a nurse specialist at the Royal Brompton, who was horrified and said that her consultant would be more than happy to see us. So I wrote to the GP last week asking for a new referral which he faxed through on Wednesday. We rang the nurse yesterday and left a voicemail message to make sure that she knew the un-named patient she was being told about on Monday was the same person as the referral on Wednesday, and could she let us know when we might get an appointment as we need to know whether to cancel the uncaring local paediatrician's appointment next week.

I'm still pondering making an official complaint about how mixed the treatment has been so far (some doctors have been really keen to help and get tests run, but then have dumped it all back to the paed consultant who hasn't wanted to know, so nothing has been done to progress anything. We're still waiting for the results of the 24 hour ecg which was finished on 19th July for example ), so willl contact PALS for advice on that. I'd like to have a date for the appointment with this new specialist first though, don't want to jinx that .

that's dreadful eicosapentaenoic, DD1 had a huge problem last year with uveitis in two parts of both eyes, but once we'd got her diagnosed via the optician, the eye casualty department saw her same day each time it flared up (main eye clinic took three months for an appointment, and the locum doctors were generally rubbish at reading notes "so which eye is it then? it's both eyes actually, really, are you sure ), but we're still on first name terms with the casualty doctor.

It's appalling how much treatment varies depending on where you are in the country.

Ishallwear Hi! We are treading the same NHS pathways... I really want to follow this thread but I've got to drive to Bath right now for 1wk. Aargh. I'll be back soon as I get wifi access. Just quickly on complaints - try to avoid 'complaint', puts their backs right up, can get dumped. In reasonable innocent confused tone, reflect the history of what's happened in note form so they can sort it out without losing face or pass you on as appropriate. Imagine you're them, dealing with these people/system/funding, and it gives you an insight on what's the most effective approach.

Lovely piece of manoeuvring with Royal Brompton BTW. You're right about jinx, everything goes in notes.

midnight Just wondering how she is now? also whether anyone had useful thoughts about cause of uveitis inflammation? just wondering whether you've been able to get visual field and eye pressure assessed recently? whether she's got a regular neurologist? whether anyone's thinking about a head MRI or CT?

Just bought a handy blood measure monitor from Boots £35 - to attempt to distinguish DD's intracranial hypertension symptoms (vision blackout, headache) from raised BP from anxiety - neuro suggested breathing in/out paper bag, practising yoga breathing, actually quite helpful advice for us.

Really hope it's going well, very best wishes for good progress.