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.

Could you afford to go private? IME the waits are typical of the NHS, so if you want to avoid them you have to pay. Not the way it should be, but there it is.

Have considered it , but the test results are all sitting in the hospital with the consultant, and I can't afford to get them all redone (24 hour ECG, EEG, MRI, heart ultrasound). Surely the hospital wouldn't just hand them over?

Do you know what the results are?

If not could your GP find out?

You see the same consultant who already has access to your notes but privately. Don't ask me about the morality of that , it's how the system works. And if you can't see that same consultant, you ask them for a referral to somebody else. If you can't access your same consultant, then beg your GP to help you find a few names to ring & try to book urgently; they will have channels for being able to access your test results quickly (it's all electronic now, anyway).

can you request all her medical notes? i thought under data protection you had a right to see everything they store about you?

I think there are some quite aggressive posts about going private. I tend to go private myself but, for something that serious, you still ultimately have to depend on the NHS, especially if any intensive care is going to be required (e.g post operatively). In addition, all a private paediatrician could do is review existing results, unless you are ready to pay for admission to a private hospital and any follow up tests or procedures that are required. I guess the upside of getting a private appointment is that the paed could create a fuss for you to be upgraded within the NHS.

That amount of fainting sounds incredibly serious, and it also sounds like it is getting worse. I think it is outrageous for them to expect you to wait four weeks and I definitely would not tolerate it for either of my children.

Where in the UK are you based? Could you try another hospital A&E department, especially one with a good reputation in paediatrics. Alternatively, phone the consultant and say you are going to the local newspaper and getting them to feature your family in an article saying how bad waiting times are in that hospital for serious conditions, unless they make your appointment much more urgent (today would be good).

Results of everything bar the 24 HR ECG are normal, haven't those results back. Consultant has apparently said he doesn't need to see her sooner. We have seen two other consultants at the hospital (one of whom is on the list of possibles to see privately) both of whom said we need to wait to see the one we have the appt with.

Is there some kind of "can't step on someone else's feet" thing with doctors?

Larry, it's not as bad as it sounds from your post! I'm happy that they e checked there's nothing physically wrong with her heart and brain (tumour, epilepsy and so on). Noone so far has come up with any diagnosis (one possible one which needs three months of symptoms and to have excluded everything else to diagnose), and her faints aren't causing any damage themselves, it's just if when she falls.

DH has rung the consultants secretary this morning, and he's on holiday now, and his next clinic is the one we're being seen at.

What do you want to achieve by going private (I know that sounds a bit of a stupid question, but what would you hope to get out of a consultation)?

If the two consultants that you had seen at the hospital thought that your daughter needed to be seen sooner than the appointment she has then they could have arranged that.

If you asked them about going private and they advised against that then that is most likely because they dont think it would benefit your daughter.

It all sounds a bit strange.

Yes, the NHS does like to follow a very rigid procedure, and departments are incredibly bad at liaising with one another (it took over 24 hours to get an obstetrician to have a look at my wife when she was admitted into hospital with a severe viral infection, and the baby with tachycardia).

If all the tests are normal, what do they now suspect? And, if it is getting worse, surely it needs to be reassessed. Does your hospital have a good paediatric reputation and are there others locally which could be a better bet?

Definitely, follow your instincts and don't be fobbed off.

Just another posibility for you to look into

en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome

DP's (much) younger sister went through a huge battery of tests last year before finally being diagnosed with POTS. She too spent huge amounts of time having tests that showed nothing and it was all terribly stressful for her and her family.

She has not been in school for the last year but is now in the process of working with her school to sort out a way of going back in September on a part-time basis and she is beginning, slowly, to find ways to cope with her situation. She is 15.

Putting the morality of it to one side, I would speak to the Consultant's private secretary, and explain that you need to try and get your daughter well. Ask if you made a (quick) private appointment with him/her, could he bring you up to date with his findings.

At that point you may find that he can help you access faster treatment thru' his NHS list.

Hope you can sort it soon - can only imagine how worrying this must be.

You could ring PALS at the hospital and see if they can help - they are the patient liason/complaint service.

I feel for you, we had a similar mess about with DD and we kept being sent away. I just kept taking her back to A&E (and kept being sent away to wait to see the consultant). In the end, her symptoms got worse and they had to admit her. The only thing, that I hope might reassure you a bit, is if they found anything urgently serious then they would bring you back immediately, you wouldn't still be waiting. We were sent home after a week of testing (AGAIN) to wait for another consultant appointment, but a fluke blood test showed up what was really wrong and because it was very serious we were phoned at home and brought immediately back into hospital.

Dysgu, yes, POTS was the thing one of the consultants mentioned, and having looked it up, she does seem to fit most of the symptoms.

What I'm after at the moment is for someone to look at all the notes and results and files, and tell me what it is, or could be, and what we then do about it. I'm fully prepared to accept that there's nothing which can be done and that she'll grow out of it; it's just that at the moment no-one is prepared to do that. And i'm pretty unhappy with being told, go away, it's nothing major, sit on the sofa for four weeks, and if she faints, it's because she's getting up too quickly. This is despite the fact that we spent over half an hour last night (and at unchtime and the previous night) having her shuffle up the stairs backwards on her bum, only get half way, while fainting half a dozen times. Sorry, have started ranting there......

I suppose what i'm really asking for MN advice on, does this 4 week wait seem (NHS) acceptable, and how likely is it that i can get a referral to either a different consultant in the saem hospital (where all her notes are) or to a different hospital? For preference I'd quite like to be seen at the Royal Brompton as it's a specialist heart place, but I don't know how possible that might be within the NHS structure (would a different doctor say what does the original consultant say, and why haven't you waited to see him?).

oh, and the discharge notes from last week aren't right, they say she was fainting up to 20 times a day, when it was 10-12, so now that it's 20+, apparently that's not a change which needs dealing with.

Whether you think 4 weeks wait is acceptable depends to some extent on what you can tolerate.

If the test results are all normal, and there is no drug treatment suggested then a 4 week wait won't be harmful in itself (as it sounds like you arent expecting the appointment to change the approach). In that context a 4 week wait may be acceptable in terms of the NHS and what care is necessary.

If it isnt acceptable to you and your daughter and you do want to go private then in terms of acessing records it is probably best to try to be seen by someone in the same department as the consultant yor DD has been allocated. If you want to do that you could phone one of the secretaries there and explain that you want to see a consultant privately and could she let you know how to go about that.

An alternative would be to ask if your DDs consultant could phone you prior to to clinic appointment - if they have not yet seen your DD then there probably isnt a great deal that they could tell you, but it might help.

bit of an update (thanks everyone btw, it really helped to clarify my thoughts before DH saw the GP this morning):
we're now on GP no 5 (no 1 was useless, no 2 retired unexpectedly, no 3 was great but not senior enough to have any clout, no 4 got us seen at the hospital) who couldn't advise us what to do as the hospital haven't sent through copies of the test results, and the dates on one set of discharge notes don't match up to when she was actually in hospital . So he's getting his secretary to ring up and shout at the hospital ot get the results, then will ring us to discuss what we can do.

In the meantime I'm trying to get a wheel chair from the Red Cross and have ordered a disabled loo key so that we can go away this weekend (6 hours on the motorway, so we'll need loo breaks, and i'm not having her standing in a queue in public toilets fainting). Plus i've found the name of what seems lilke the top consultant for these kind of things, so getting a referral to him will be my next challenge.

Take a look at www.stars.org.uk they were extremely helpful when my daughter had RAS as a baby.

Is it possible that she isnt "fainting" but infact has narcolepsy (sp) ??

a couple of people have suggested that KilledBill, but i'm assuming it would have shown up on the EEG. Having had a quick look at the symptoms, I'm not sure that they fit as well as the other things we're looking at.

Qwerky, I found the STARS website last night and spent ages reading through all the patient stories - the years off school stuff worried me, but the fact that everyone seems to be either gettig better, or at least coping, did reassure me a lot.

I feel better now that I have a Plan of Action .

All sounds really worrying, and time consuming too, if she's having to spend half an hour shuffling upstairs every time.....hope you get this resolved soon.

Just posted as I wondered if you/DD had been keeping a log of what was happening? Just so that consulants/doctors can see how huge an impact this is having. Also keeping a note of how you are trying to avoid this happening, and the time this is taking - like the shuffling upstairs example you gave. Only saying this as have found in the past that writing it all down helps whoever you are seeing to assimilate all the info......

Sounds like good idea re wheelchair and loo key. Please let us know what happens re consultations/diagnosis.

OP, how is your dd now?

I am not an expert, but I do know a couple of people that have POTS (as Dysgu linked to above) - what you said about your dd certainly rang a few bells compared to how my friends are.

I hope that the wheelchair helps, my dd uses one because she has cardiac issues amongst other things, as walking is difficult for her. I second the "slow bum shuffle up the stairs" idea to minimise the risk of falling. Hopefully, your dd will make a speedy recovery but if this does turn out to be a long term problem, ask for a referral to Occupational Therapy as they can come and assess your daughter to see if she needs any safety stuff, eg, a bath board/ handrails etc.

www.nhs.uk/chq/pages/1309.aspx?categoryid=68&subcategoryid=160 NHS guidelines on obtaining notes

Got full copies of notes same week from one tertiary hospital - email request to Medical Records Officer 4.30pm Friday, instant reply, complete pile including imaging printouts arrived following week, all free (the woman's a saint).

Second hospital dithered initially on copies of notes as if I was up to something (as if...), talked about charging per sheet, refused copies of MRIs - applied to Medico-Legal Dept, they authorised release of copies of MRIs, gave me Medical Records officer, including tracing back historical notes to another hospital.

Third tertiary hospital, haven't even tried - apply to Clinical Director, presumably of each clinic, to view notes in presence of doc, hell would freeze over before they gave copies, notoriously robust medico-legal policies.

As the NHS guidelines say, it varies, stick at it, and you get there.

thanks again everyone! We managed our weekend away, although the drive back was quite stressful as she fainted A LOT, and at one point started hyperventilating, thankfully we were a couple of minutes away from some services, so pulled in there - I really didn't fancy dealing with that on the hard shoulder.

Tomorrow morning will be chasing up the GP, and making contact with the London consultant to see if he will see us (consultants secretaries very helpful I've found ).

...Midnight has she had the Tilt Table Test? (can't see it mentioned above).

Exactly as it sounds, you get strapped to a table, hooked up to heart monitors etc and then - tilted! The aim (crudely) is to see if you faint. Thus proving POTS. I had it - it is fine.

I was fainting lots (but not as much as her!), I had a battery of tests. Mine turned out to be for another reason entirely. But the tilt table test I was told was pretty much definitive for POTS. but just to forewarn you, I was also told that a large % of fainting episodes could never be explained. 'Unexplained Syncope'.