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.

Hearing these stories makes me so so angry.
Children’s health and welfare has been sacrificed throughout this pandemic.
Go to pals, contact your school nurse team every school should have one, even if you don’t see them. Get a letter from school. Letter from your gp. Go to your mp if you have to.
Your daughter has you fighting her cause so I’m
Sure as stressful as this is for you, she will be just fine longer term.
It’s the children who don’t have a voice that will suffer the most and it’s disgraceful.

Please complain.

That's odd.

I've had eye appointments face to face in that time, so that are being done. The eye hospitals are open. I would call again and insist, but not sure how far this will get you.

Would Boots and Specsavers be an option? They can also contact the NHS for you.

Definitely go to PALS about this.

@ChristmasCardDyslexia are they aware that your DD is deteriorating? I'm wondering whether they haven't been made fully aware of this, and therefore are assuming the video sessions are enough?

It is difficult one, I have a niece who needs yearly visits to consultant, and all that changed to video calls, with MRI being cancelled.

The consultation has remained video/phone appointment but of course MRI had to go ahead recently.

I would also ask you to ask a local optician. That is generally the best routine (not the big chains).

Really hope this works out for you. Also, if they are aware that her condition is deteriorating, you have every right to complain, contact PALs.

You are nowhere near being unreasonable.

Complain today if you can. Insist she's seen

It is really strange how some hospitals have managed departments such as Opthalmics and Audiology during the pandemic. DP had hearing aid and has had no problems getting his hearing checked and a 2nd one given to him over the last 20 months. For other hospitals, it's like such departments have never existed

Just go private. It’s not easy and it’s expensive but if it’s a choice between that and your child’s sight…

YANBU. What would happen if you rocked up to a&e with her citing failing eye sight? Bit extreme maybe but would you be seen that way?

I don't understand this at all, the trust I work for is back to f2f where requested or required, video or phone where the patient prefers (and many do). I'm not sure why it's not the same everywhere. We're still dealing with a huge backlog and clinics/ schedules aren't running to schedule due to illness but it's running essentially as normal.

What eye condition does she have, is it a latent/manifest strabismus (also known as a squint)?

Unless she needs atropine, she can be seen by a regular high street optometrist, they may need to order drops in. If she does need atropine, there are many optometrists with a further qualification who are able to use them.

Let me know and I can find someone to help.

I love the NHS but it is not functioning well at the moment. I also have a child with various complex conditions and I spend a lot of time being pushy to get what he needs. Unfortunately sometimes a complaint is necessary and if you kick up a polite fuss it tends to work. I would start with PALS. Good luck.

I sympathise. My father though has 6 weekly appointments for his condition and these have been going ahead at our hospital?

That's rubbish OP and you need to complain today. PALs, ring the consultants secretary, get their email address and send a detailed explanation of how your DD's eyesight is declining and how it's affecting her education.

YANBU, in fact you need to be a little less reasonable and a little more demanding, in the most polite fashion of course. I think we're starting to almost expect that we won't get treatment now. I'm guilty of it myself.

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.

If you do a subject access request you can get a copy of her notes, which you can then give to anyone you like. You're legally entitled to them.

But I would complain. I say that as an NHS clinician. I would do it as a 'more in sorrow than in anger', emphasising that you're happy with the clinical care you recieved up til 18 months ago, but the restrictions due to covid are causing her condition to deteriorate. Do it via your local PALS, who are generally pretty good at cutting through red tape.

It's entirely possible the clinicians are actually wanting complains so they can prove to those who commission services how under-resourced they are. I know there are areas where our service is crap where I would love to have the patient complaints as evidence, but generally our patients are too nice and understanding and so don't.

I've had similar. I need six monthly checkups but after an appointment in December 2018, they were all cancelled due to lockdown/COVID. I finally had one yesterday at a different hospital - a new clinic helping with the overflow of the two year backlog. I hope your daughter will also be seen soon.

My consultant wrote to the ophthalmologists but if the clinic isn't running, there's nothing they can do to magic up an appointment.

The clinics aren't running like @CatJumperTwat (my cat likes lying on jumpers too, and it is annoying) said so there's not much I can do. The staff want to run the clinics and keep telling me they want to, I believe them.

Will complain via PALs and/or MP. Will also get school to write to the hospital trust (again) about her struggling.