NHS waiting lists are a mess (paeds)

[ARMSDOWN]

Just here to have a moan. My son has sleep apnoea (huge tonsils and likely big adenoids) and severe glue ear. Waited nearly a year to see ENT after first referral and likely to be another year before he gets surgery with other tests in between. His sleep is awful (therefore mine is too), he can't hear properly, his behaviour is awful in loud settings because he has to work hard to hear so gets angry, there's a small risk of permanent damage to ears etc. I don't understand how we've got to a point that a simple surgery and grommet insertion takes 2 years to get to (ok, I do understand but I really, really hate it). We're exhausted. He's only 5. Has anyone had a similar wait? Did things improve quickly after surgery?

DT1 (aged 3 1/2 at the time) was seen in April last year after 2 previous appointments and various tests being done. and was put on the waiting list for adenotonsilectomy for sleep apnoea and severe snoring. Consultant told us his waiting list was approximately 6 months.

I rang hospital in late October to find out how much longer they thought the wait would be (this was triggered by receiving a request from hospital asking me to complete a survey about remaining on the waiting list for the procedure!) to be told he is still 115 on the waiting list and it would probably be at least another 12-15 months until he gets to the top of the list!

My daughter has had hearing loss since birth, we’re only now moving forward with the hearing aid clinic and she’s almost 1. She is supposed to have audiology and ophthalmology appointments every 3 months and that’s not happened either.

My other daughter is waiting on a biopsy of a mole. She’s been waiting 2 years so far!

I also keep getting texts asking me 'do you still need this treatment' like I'm qualified to just take a 5yo off the waiting list. It makes me want to scream every time (sleep deprivation getting to me). Can't get angry at NHS as they're doing their best and brilliant when we do finally get an appointment but feel so very failed. To think this is happening to people with much more severe issues is awful

Not great is it. My son is also suspected neurodivergent but they won't assess him until he's had the sleep apnoea sorted as it can present the same way. It's all just hugely delayed.

It’s high time people started asking questions about how money is spent. My ‘chain of command’ pays a lot of money to managers who add nothing. At all. £80k to do nothing, several times over.

that would pay for 2.5 physiotherapists.

I work in paeds, our waiting list is 2 years. Money is wasted. A lot of it!

The thing is, what are we as patients meant to do? Years ago a 2 year wait would have been unacceptable and worthy of a complaint, however in the current climate it is just accepted as the way it is. All we can do is sit back and accept that our children aren't getting the care they need and are suffering for it.

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.

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.

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).

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.

My son has nightmares, doesn't sleep properly, is exhausted all the time, is not being seen for suspected neurodivergence because we need to rule out sleep apnoea, falls asleep at school, gets earaches monthly which could cause permanent damage due to the frequency, can't hear properly so is falling behind in school etc etc. It's been like this for 1.5 years now, potentially another year. He should have had the surgery months ago. Yes, he might grow out of it in a couple of years, but that's not without then 2 - 3.5 years of being miserable, branded as badly behaved because he 'doesn't listen' (aka can't hear), and suffering with sleep deprivation. This is why they operate on children who are suffering with it and why it is so important, if their quality of life is being affected, that they do it quickly.

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.

To be honest I haven't really done anything other than take him to the docs and waited for an appt. I wish I had the money to go private.

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.

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.

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.

Absolutely not! I'm a lone parent who earns 30k a year, gets some top up in universal credit and is perpetually skint despite working every hour under the sun. Tory is not the party for me (though I'm not sure if there is one anymore). And no, I voted remain. I'm angry too.

I can't until he has a hearing test and their next appt is in 4 months. I will definitely enquire after this.

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.

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.

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 😬

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.

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...

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?

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