I am UR but I’m going to say it anyway

[ChristmasCardDyslexia]

My DD is 7 (Year 3) she’s dyslexic and wears glasses due to an eye condition caused by another underlying condition she has – the eye condition is common with the underlying condition she has so isn’t an unknown to the NHS/HCPs (the condition causes other conditions she has in other parts of her body as well – again common)

Her eyes are supposedly tested every 6 months with a check-up every 8-12 weeks if needed. She also has daily eye exercises for her condition which are checked and changed as needed at the checkup (so she goes every 8-12 weeks but only has the glasses check if needed), she also has daily physio and regular appointments with physio because of the underlying condition (these vary between every 6-10 weeks and every 3-4 months depending on how we’re finding the at home physio)

Apart from she’s not had a physio appointment face to face since December 2020. They’ve done video consultations with her but because they can’t test her underlying condition (they have a special mat they use) she’s slowly getting worse. She’s not had an eye appointment since March 2021, every time I call for an appointment I’m told she’s still under them and to just wait because all routine appointments are “on hold”. I’ve been told again today that it’s due to the booster programme as the hospitals/clinics they use for appointments are being set up as vaccine centre.

Both physio and eye consultant talk to each other regularly and try to get DD seen by one of them so we can make progress but both are struggling.

So she’s getting worse, she’s falling further behind at school because she desperately needs new glasses and can’t get them. Her eye condition means she can’t be seen by Specsavers or Vision Express as she can’t have the normal drops in her eye she has to have a special one due to treatment she had for the eye condition as a toddler.

I looked at seeing both the physio and eye consultant privately, but both have said they can’t lift the notes from the NHS (but private can write to the NHS and have their notes added) so we’d have to start again.

Where do I go from here? I want to complain. It’s not fair my DDs being left behind. She can’t have any further assessments for LDs at school until her other conditions are well managed because the conditions are most likely causing her issues.

Probably very UR to complain. I love the NHS, and every single member of staff I’ve come across is dedicated and knowledgable and so so good with DD, but we can’t go on like this. I do not blame her consultants/physio, they’re desperate to see her and tell me everytime I ring that they want to see patients and get through the backlog.

Yanbu to complain.its situations like this that make me cross about the way the vaccine boosters have overtaken everything else.

We are prioritising boosting healthy young adults & teens who are at low risk of severe Covid, over meeting long term health needs of everyone including children, and that doesnt add up in my book. Honestly I think its populism. BJ knows our approach on vaccination is popular and probably the only thing keeping him in role.

You are not unreasonable, I have been moaning, mostly to myself and friends about my mobility problem. I need an orthotic insole for a arthritis deformed foot and ankle,. It is a simple solution, and makes a great difference to my life, but your little daughter is missing out on her education and development, which will make a difference to her whole life! You have every right to complain.

This makes me angry, using Covid as an excuse still. Other health sections ( that I work in ) are cracking on and catching up, while others still blame Covid.
Sorry, nothing to say to help you, but you have my sympathy.

You have every right to complain. I think if your in the position where you can go private I'd do that, we've no idea how long how long this shit show is going to go on for and the backlog of patients waiting for consultations / treatments will be horrendous.

Yanbu. I'm an nhs worker and my department continued pretty much normally through pandemic. I think the kids have arguably suggested the most during the pandemic they absolutely should see her, but probably the decision doesn't come from the staff members you talk to but from higher management. Oyou could submit a PALS complaint then maybe they'll change their practice

Can't you make a UK-GDPR subject access request from the NHS to get a copy of the Notes? That should be done within a month... then take them to the private providers.

You aren’t even a tiny bit unreasonable. Covid is not the only health problem in the world, ffs. Children (and others) are suffering serious harm and worse.

Can you go and talk to an independent optician away from the big chains? My local optician is wonderful and communicates directly with my consultant (for my underlying condition) and would be the first point of call for anything eye related, rather than my GP. I never had this sort of relationship with the big chains like Vision Express, it's a much more medical service. She also orders things in and stays in touch.

It doesn't solve everything but at least she could get new glasses, poor wee mite.

OP this is one of those occasions where you need to go to the top I.e. Letter to the hospital’s CEO, your MP, DHSC both the Perm Sec and Secretary of State.

Have you got copies of the notes you can give them? If not request a copy and that gives them the info they need if going private. We've had to go private for several things for dd makes me livid but had to be done

The reasons private doctors won't accept notes from NHS counterparts are twofold.

Firstly, most obviously, private doctors will make more money this way. The more treatment/investigation work they do, the more they earn. There's no incentive to accept the word of the NHS when they can redo tests and earn more instead. NHS doctors are so overworked they're happy if someone has done the legwork for them, but the reverse isn't true.

Secondly, private doctors are more risk averse. The general perception, to a large extent true, is that private means better treatment. Therefore it is an unnecessary risk to them to listen to the word of an NHS doctor who was probably under more pressure than they are.

You are not being unreasonable at all. I would complain to pals. I hope your child gets the help she needs.

Did you have actually told them on the phone that she was deteriorating and explain why? Write a letter/email addresses to the team and explain your concerns.its not routine any longer if she is getting worse.

I think she should be seen. I broke my ankle in the summer and I've had two face to face physio sessions and a telephone check up so I'm not sure why they can't see her, maybe different areas of the country but for months we have had numbers so it isn't like the NHS are having an easy time here.

It won’t be that the private doctor won’t take believe the work of the NHS one, or wants to make more money doing more investigations
It’s that they are not able to just take the NHS notes/ records legally.

However you can request copies of records, and then bring them to your private appointment.

Have you tried talking to your MP? They can often cut through the red tape.

Our experience going private for eye treatment (pre Covid) was the NHS hadn't done the necessary tests due to shortages, the private consultant got on and made the decisions the NHS one would liked to have done if they hadn't been constrained by lack of resources and we wished we had done it years ago when DH still had his vision.

Sadly it is the way some eye departments have been left so if you have the money I would use it.

I agree that this doesn’t sound like a routine appointment and is urgent!
I’m usually very much on the side of “we’re all in the same boat” waiting around.
I wonder if they don’t realise that she’s getting worse and think you just want a check up?
I say that as an NHS employee too x

Is it possible to obtain the different drops and bring them to an independent optician? Don't bother with Specsavers or Vision Express.

Poor girl, it's such a small, doable thing, if you could just get around the bureaucracy.

I don’t love the NHS its run by over paid incompetent fools. I love the individual nurses and doctors I meet who for there.

I am so sorry you are dealing with this. Good luck following it up.

Can you get letters from the school stating that she is falling behind, and point out that if this continues it will have serious (and potentially life-long) effects?

I had a similar issue with my sons hearing. He was getting further & further behind.

I cried down the phone to the receptionist in the end. They managed to squeeze me in. Not my finest hour, but I finally got an appointment.

You’re doing your best for your dd. You need to put her interests first even if it does mean a complaint.

Pals complaint this isn't routine if her education is suffering.
You need to kick up a fuss as they only will see the moaners first, just the way it is.

Ring PALS at the hospital she attends. Urgently.