Help a desperate mum with this NHS question

[Ladyfromthehill]

Posting for traffic.
I have an SEN nonverbal child. A few days ago he developped a very worrying sympton that has massively got worse. We went to A&E, but they sent us out with nothing as it's not 'urgent'.
GP will try to see if we can be referred to pediatrician. Which can take months. It's unbearable to see him like this and we can't wait (last time it took them 7 months to see us).
I am so desperate I am trying to see if we can't be seen by a private neurologist in the meantime to exclude some things (or confirm what diagnostics would be necessary).
Would that exclude us from being able to use NHS? I have been trying to google but havent had a conclusive answer.
I cant afford a fully private treatment/diagnostics as it would costs thousands by the looks of it, but I just want someone who knows something about the area to give us some guidance, and something I can go to GP/pediatrician with.

What is the symptom, are you sure it would be a neurologist the you need?

Why don’t you ask your GP this question. I don’t think you’ll get a conclusive answer here. Your GP may well recommend a private consultant

I have private healthcare via work for me and DC.

You can be on a NHS waitlist and be seen privately.

You need a referral to the correct consultant though so if you are on a waitlist for paediatrics I'm not sure why you think neurology.

Each appointment is about £250-300 plus tests.

Think problem would be if they confirm that nothing can be done without certain diagnostic tests and you can't pay for them privately then your back to square 1 waiting for nhs.

No, seeing someone in private doesn’t mean you can’t still be in the NHS system. So yes you could see the private neurologist and get a report or letter from them to take to a paediatrician. Just be aware the IT systems won’t talk to each other, so the NHS paediatrician won’t be able to see anything done at the private hospital. So take a hard copy of any consultation.

You can chop and change to an extent yes - so if all you want is some guidance and advice, by all means pay for the private specialist. But be aware that that is literally all you will get for your money, if the private specialist recommends more diagnostics or follow-up or seeing another specialist, unless you can pay for those privately too you'll need to wait on NHS waiting lists. Private prescriptions for medications will also cost more (although your GP may be able to prescribe if medication needed on an ongoing basis).

Obviously you don't have to post your child's medical details but are the symptoms/conditions you are worried about something that can definitely be diagnosed just from examination and history (no need for CT/MRI/EEG?), and are you sure it's a neurologist you need? Just feeling it could be a more frustrating experience than helpful if the neurologist essentially says they can't tell you much without you either again waiting on NHS or £££?

If you’re talking about seizures/absences then I know someone who went though this and they did go private then transfer back to NHS. However they did also keep going to A&E when their child had an episode. Try recording what’s happening if you can bear to - will be useful for the doctors. My friend really had to fight but she got the right diagnosis in the end.

Please don’t be put off going to A&E if you feel it is needed. You may encounter a different doctor who decides they need to be on a ward, especially if the issue is getting worse.

See if your GP can refer you to the AMU for another clinician to examine your son quickly. It's the sort of holding pen for people coming in through A&E who need seeing but aren't a blue light level emergency -but you can get referred to it same day if your GP is worried enough and think you need examining very quickly.

My son started to have seizures, we didn't realise what they were at the time, we presented to a&e multiple times, and despite multiple daily seizures, which were then presenting quite clearly as seizures by this point we had a 7 month nhs wait to see a paediatrician.
Fortunately my husband has private healthcare so we saw a private neurologist who undertook various tests.

By the time we saw the NHS paediatrician my son was referred straight to great ormond street.

To be honest it did help to see the private neurologist, he gave a diagnosis of sorts and started meds but he didn't specialise in paediatrics and so his knowledge of children and modern meds wasnt the best.

My advice would be to pester the nhs, keep on going back, and try ot get details of who you will be seeing and enquire about cancellations

It’s often the same consultant doing some NHS work as well as some private work anyway. You will still be seen by an NHS consultant if you proceed with private tests. All the best.

But at least I'll know I'm not imagining things or that we are looking the right way.

I don't know what were really experiencing. The doctor we see in a&e thought it was "ok", it wasn't. I left with a really heavy heart as everyone around us sees how bad things got quickly. His teachers are really concerned. I think we're going to go back again very soon... 😥

So to answer your question, I’ve recently seen a private consultant- he also runs the local NHS clinic but the waiting list was 9 months and I was desperate. He’s referred me for an NHS CT scan and the waiting time was only 2 weeks. So you can mix and match, in my experience.

Have you tried videoing your child experiencing this new symptom and showing it to doctors?

If a patient is entitled to NHS care, that doesn't change just because they've seen a private doctor. I am a private doctor and routinely refer back into the NHS if appropriate.

Hi I work in private healthcare, by paying or having a private consultation tests or even treatment does not affect in anyway your position or care under NHS

Not neurology but in our case allergies - I took my daughter to see a private consultant after getting the brush-off from the GP, he then wrote to our NHS GP with what ongoing prescription medications she needed and a diagnosis, he also arranged that she would see him as an NHS patient in future - as he was also an NHS consultant in our area, GP didn't question it at all. So totally worth seeing a specialist privately.

Also, your GP can refer you to a Paediatrician, its one of those things worth making yourself a pain in the backside about, phone the GP daily until you get confirmation that the referral has been done, put in a formal complaint if you need to, then phone the Paediatric dept and ask if you can be considered for any cancelled appts, tell them how worried you are etc.

Without describing the symptoms its hard to know whether YABU or not.

I'd just go back to A&E again if i was adamant it is a real emergency. Try and go during Mon-Fri between 9 and 5, because peadiatric consultants should be around then.

If it is seizures, get as much on video as you can.

I’ve paid privately many times for the initial appointment, around £250, but then been transferred to NHS for treatment. It worked really well as it meant we could jump the queue but wasn’t too expensive. Wishing your child well, sounds very worrying so money well spent. I just took my teen DD privately for an iron infusion after awful treatment (or lack of it) on the NHS.

I think we're going to go back again very soon...

As it’s an ongoing problem, best to go back to GP at the earliest opportunity vs going to A&E. This seems like a consistent problem going illness.

I’d keep going to the GP as well, simply because private paediatricians are so rare in the UK, though no doubt less rare than they used to be. I’d ask for a private referral and see what they can suggest.

If it’s Tics also video them

Im not sure what it is, but it's constant. He gets 10 min break per hour at most when he is awake.
It's heartbreaking, I cant eat, I cant sleep from being worried, this is affecting everything he does. It's heartbreaking.

That sounds horrible. Can you describe the symptoms?

I would be straight back to the GP/A&E depending on what they are.

My DS started with tics out of the blue at 4yo, they were severe and constant with only a few minutes in between. Constant eye rolling and head jerking. The GP referred us to paediatric neurology who didn’t really do much, just said really common and he will grow out of them in late teens. Hope you get sorted.