NHS waiting lists are a mess (paeds)

That's exactly how I feel about the NHS. So much money wasted that could be spent on the staff that's actually needed 😞

Not paediatrics...though it was when we started which kind of says something! My DS started with a visual problems when he was doing his GCSEs. He's just going into his final year at University and things are finally resolved because I have paid for him to have his treatment privately. He did have something done on the NHS about 3 years ago but it failed and when he was seen for a follow up appointment we were told he'd be seen by another Consultant within 6 weeks. Still not had that appointment! Apparently the doctor left, hasn't been replaced and everyone has just been left hanging. No information was provided, I only found out by ringing repeatedly. It's taken 2 years of private treatment to correct the problem and mistakes were definitely made at our local hospital so I probably wouldn't go back anyway but the lack of communication is appalling. I know they can't run clinics if they don't have the staff but failing to communicate or offer advice on alternatives is appalling. They didn't even seem surprised or bothered when DS rang to tell them what had happened to him since he was last seen.
I hope the new government can improve things but I fear it's all too far gone now.

Been waiting since November 2023 for a community peadatrican appointment. 8 year old son is waiting for ASD panel for austim and ADHD. The wait time for panel is ,+48 months. It's all so draining!

Have come back to the thread because, on Friday, I received yet another text from the (not so) local hospital (we live in an area where there are 2 hospitals that we can be referred to which are both around an hour’s drive away with nothing closer, not even a private hospital) asking us to complete their questionnaire Co confirm either
a) we had sought treatment elsewhere
b) the issue has resolved and we no longer wish to stay on the waiting list
c) we would like to discuss with the consultant whether the treatment is no longer needed
or
d) whether we wish to remain on the waiting list

This is the 4th time we’ve been asked to complete this futile exercise - last time, I received the same request twice in 4 days either side of a weekend and, when I rang to query why I’d had it twice so quickly and also to confirm it was for the same reason (you get the same thing if you’re waiting for an appointment or surgery so I wanted to make sure I wasn’t confusing things!) they said that we should receive it when we reach 40 weeks on the waiting list and then at similar intervals until we reach the top of the waiting list!!

DS was referred to ENT just after his second birthday for issues with severe snoring (he snores worse than his DF - and that’s saying something!), possible sleep apnoea with daytime somnolence and enlarged, asymetrical tonsils that, even with no evidence of infection or inflammation, touch. He is also diagnosed with asthma and possible allergy induced wheeze plus reactive eczema. His first ENT appointment was when he was 3 years 3 months where they agreed that he definitely needed skin prick testing and further input from their team once that was done. He was prescribed steroid nasal spray and saline washes to try to improve the situation - we used them for more than 6 months with no beneficial effect so stopped them - the skin prick test took around 3 months to be done and showed allergy to pet dander, house dust mite and tree and grass pollens. Their only solution was to have the steroid spray and wait to see the ENT surgeon again. We were lucky, that follow up appointment only took another 3 months to come through (so 6 months from when he was last seen by the team) and the consultant was immediately happy to add him to the surgical waiting list and said it should take around 6 months for him to have surgery. He also said they would continue to follow him up afterwards as, if the snoring and sleep apnoea weren’t resolved by surgery, he would need further investigations.

That appointment was in April last year and the N only thing we’ve heard since then was, when I chased up in October last year, when I was told that he was 115 on the waiting list and it would possibly take another year for surgery depending on whether more urgent cases were added after him that would take precedence. I’ll probably contact them again in a few weeks to see if that has changed at all especially as I’ve had another of their ‘questionnaires ’ to complete. I’m sure they hope parents will get fed up waiting and seek private treatment but we can’t afford to - while some people may be able to put the cost on a credit card or cancel a couple of holiday’s to be able to afford to, or even pay for a private care policy such as Benenden Health, we aren’t amongst them so rely on the NHS for treatment no matter how broken the system is and how long we have to wait for appointments or surgery.

Yep. My 2.5 year old can't walk. We can't get an appointment.

My eldest had severe ear infections after starting preschool at 3. For 18m a cycle of bursting both drums about 4x in that time.
Like a pp we also had behavioural issues.
she is now on a indefinite asd and adhd waitlist.

she is already 12.
Even when being referred still not one hearing test...

i agree we are ending up with kids with behaviour issues and social issues beceause we arent treating the root cause.

yes the ear infections might stop but saving nhs 2k when its going to cost probably that much to do the asd referral and if dc ends up unable to work.

op can you get allergy testing?

Did the dc have reflux etc?
or try increasing vit d and omega 3 to fight off the colds/bacteria

would you say they get dehydrated?

I'm a SALT. Relatively recently qualified (I've been working a year and a half or so) but there was no way on this earth I was going to work in paediatrics because the entire system is a fucking mess and the idea of doing a couple of clinic appointments and then putting people back onto the waiting list again is totally against what I believe in.

Peers who graduated alongside me who work in paeds are running at caseloads of around 150-200 kids... meanwhile I work with very complex adults and have a caseload of up to around 25-30. We're currently being hammered with staffing limits though - I've gone from working alongside 2 other colleagues in a very busy, complex, massively deprived (I've got two of the top 1% for deprivation areas in the country in there) area, to holding it down solo as a just-about to be moved to Band 6... I've raised concerns that our waiting lists are going to go through the roof and there are going to be cases of clinical complexity that I'm not capable to handle solo - but it's a situation where now the shit needs to start hitting the fan before management will listen.

Incidentally I retrained to be a SALT after my child was born and had huge issues developing intelligible speech (her understanding of language is pretty solid, great vocabulary etc - it's just motor-planning, and basically she has Childhood Apraxia of Speech - but no one will give the formal diagnosis) - waited and waited and went to an assessment appointment where I was basically told not severe enough to be supported... and I sat on the bus home, with this little chatty 4 year old trying to talk to everyone with tears running down my eyes - and set to work trying to figure out how to help her myself.... I may periodically regret this decision when I'm arguing with a pre-teen mini-me about the necessity of wearing pants...

2 to 2 and a half years for a tonsillectomy here, was almost a year for the initial ENT consultation before that too. My 5 year old currently has tonsillitis for the 15th time in less than 2 years. He gets 10 days of antibiotics everytime, sometimes needing 2 or 3 courses. He's autistic and it's a bloody nightmare getting medicine into him. I call every week for an update and to enquire about a cancellation slot, they know I'm willing to take a last minute cancellation but no joy so far. Its shit OP, I sympathise.

Pre Covid my 6 year old was seeing the allergy clinic regularly as they were monitoring her allergies and helping her wean into the past allergen when her reactions had lessened.

Have not heard from them since feb 2020. I’ve called, left voicemails, asked the GP to get involved. Nothing.

It is ridiculous. We are avoiding foods that we don’t even know if she is still allergic to and the school doesn’t have an up to date allergy action plan (which they need in order to be able to give her medication). WTF?

And no Mumsnet, I can’t afford to go private 😬

Deffo start calling. I couldn’t believe how much sooner I moved my dd forward with a few calls. It’s not Q jumping, you are filling a slot which otherwise wouldn’t be used. Call today, then diarise to call every week. Huge best of luck to you.

You’re right - this is absolutely appalling and symptomatic of the NHS being utterly broken.

Are you ringing up regularly asking for cancellations, and are you on the last minute cancel list? I had to do this for my daughter who was awaiting general paeds; she got seen in 2 weeks as opposed to the 5 months we were initially given, and it also meant that a last min cancellation wasn’t wasted.

In terms of experience, I can relate to only one of your son’s issues. My son needed gromits. Same experience as you - hard to hear in outside environments resulted in bad behaviour, in his case, hitting out. He didn’t have many ear infections, but his hearing was so bad he wasn’t talking properly; he was mimicking speech rhythms, but all of his words were a variation of ba. I got the ball rolling when he was coming up to 2. I found the process of referral for surgery slow (around 6 months, felt like a lifetime then) due to watchful waits, but this was 8 years ago so there weren’t massive delays in terms of appointments. Complaining about a 6 month process now seems ridiculously entitled doesn’t it? The NHS has changed so much in just a few years, and as a nation we have just accepted what is now, a truly inadequate service. When he was OKd for surgery we looked into private operation as he really couldn’t communicate and it was heart breaking. We were advised that it could be a long wait. As it happened, whilst we were waiting to get onto the waiting list, a cancellation came up which went to him as he was technically high priority due to not being on a waiting list, so we didn’t get very far with private. I seem to remember the online prices were 1-2k; obviously this might be very different now.

The difference after the operation was huge, and immediate. He came round from surgery and said a new sound, (he was 2 and an half) and over the next several months was transformed into a gentle soul. Close friends with children really noticed as well; this wasn’t my wishful thinking. He had speech therapy and by school age, his speech was only mildly delayed, and certainly not noticeable to his peers. The grommets fell out naturally when he was around 8, by which time he didn’t need them as his ears had grown sufficiently.

Knowing what I do now, I would pay for him to have the surgery, to the price of about two annual holidays (even if it meant sticking it on a credit card). The longer the wait, the longer that psychological impact is there, bad behaviours get set in, as well as in his case, impact on his older sibling who bore the brunt of his frustrations. Obviously objectively he was at an age where behavioural changes are huge, speech is changing, many children without issues start talking at 3, etc etc. But as his mother with nothing to prove, I could see the differences and attribute it all to that quick procedure. If you can in any way afford it please look into the cost of private surgery. Keep calling for the cancellations to get to the operation-approved stage, but once you are there I just wouldn’t hesitate. Your son is at such a crucial formative age, and it sounds really rough on both of you with the sleep deprivation, plus it’s limiting your access to other assessment. You shouldn’t ‘need’ to go private, however the morals of it won’t help your son.

Benendon is really good value- but you should check whether the procedure your DS will need is included in the things it will pay for- but definitely worth looking in to.

It's 3 years where we live for Grommets our 6 year old has temporary hearing aids to help him. Ask your audiology if that's possible if he's falling behind in school.

Did you vote Tory in the last election? Did you also vote for Brexit? Because those of you who did are directly involved in this. You cannot have low taxes and excellent public services. No party seems to be able to crack the issue of excess middle management, so that’s a red herring, we just have to pay more for our services.

And it won’t just take one Govt cycle, this is a long term issue also involving training more doctors, which takes eight-twelve years before they become GPs, Consultants etc. Low taxes and filling the coffers of people like Michelle Mone have decimated our public infrastructure.

Brexit meant many EU doctors and nurses went home. Which is a disaster because when I visited in hospital just before Brexit most of the doctors were Greek, German etc. It also cost a lot of Govt time and resources to effect, taking them away from other Govt business. It is also much more bureaucratic in terms of employing more customs staff etc.

I’m sorry you’re on waiting lists but if you voted for this repeatedly then you have to take some responsibility for it or be annoyed with those who did.

The thing is, what are we as patients meant to do?

Keep bothering people and checking where your DS is on the list
Vote for a political party which values the NHS and which isn’t trying to create an environment where private healthcare becomes essential
(Ironically given the above) consider private healthcare until the situation improves (I think some, maybe Benenden, cover pre-existing health conditions but you have to pay in for 6 months first- might be worth looking into), or just get this operation done privately if the wait goes on much longer.
Watch for deterioration in the meantime.

It’s hard but sounds like you’re doing the right things- just keep fighting to get your DC treated properly.

Yes, I remember the long wait. We were also removed from the list for not attending appointment which I rang and cancelled just before lockdown as we had 40c temperatures.

Grommets were also transformational for my child. The long wait has probably worsen some issues eg balance so she needs other inputs eg physio, which she may have not needed if she had had more timely treatment.

Waiting lists aside, my elder dd had grommets and her hearing was transformed overnight. I hope this gives you some hope that it will help (when it finally happens).

My middle one needed grommets, adenoids removed and tonsils. Awful sleep apnea, tonsillitis, ear infections.
The ENT wait was quite quick, the operation nearly a year. It was then cancelled on the day. She actually grew out of the issues waiting for it to be rescheduled so I cancelled the op.
Near had an infection since. The doctor said it’s quite normal as the tubes get bigger it resolves.
If we’d had the op I always would have thought it resolved because of the op.

I’m so sorry OP- it terrifies me, years ago I accepted you’d be fucked as an adult on the nhs but always thought children would be fine. Not any more. No advice just wishing you the best of luck.