Daughter waiting for major surgery for almost a year

[JoanneH12]

Hi all, my daughter (12) was listed for a bilateral femoral osteotomy in May last year. She had an orthopaedic
pre op in July where we were told all about her recovery etc and were initially told the surgery would be October 2022 but since then we haven't heard anything. Her walking ability has continued to deteriorate and the pain in her hips is getting worse. She was today sent home from school because she was in so much pain she could hardly walk at all. School have suggested she now stays home when she is in alot of pain and they will provide a laptop for her to do her work.

I have spoken to the consultants secretary and the scheduling manager at the children's hospital who have both told me they can't tell me anything other than we will be contacted in due course.

Would it be unreasonable for me to formally complain? Through PALS for example?

(Photo to show the degree of anteversion)

This is so sad and totally unacceptable. I don't have any advice but I do so hope that you manage to get it sorted as soon as possible x

Ops are taking a little longer to get done. I just had some surgery on my jaw. I was waiting a year and a half for it.

That said go back to your GP and get them to give the consultant a kick up the backside. They’re better placed to provide medical evidence of deterioration too.

Poor girl! That must be so frustrating for you all.
Have you looked into having it done further afield or is that not a possibility? If it's got worse does everyone know? Might she be given a higher priority?

I don't know about complaining? Do you think there is something to complain about or is it just that there isn't the capacity?

Also, are you sure your daughter is ok with you posting a photo? My kids would hate it if I did that?

Ask her GP to write to her Consultant citing worsening symptoms and being sent home from school - orthopaedic waiting lists are long but this knowledge can only help - maybe they’ll review her in clinic

This

As above, I’d ask gp to expedite but unfortunately everyone on the list will have done the and so will make Ottie difference.

id start off informally, contact pals and ask where she is on the waiting list, expected time of admission (booking team will be able to work this out but will be subject to change) and why you were booked for a pre op in July but not seem (pre op are only valid for 3 months before needing redoing).

if it’s a case she’s fallen through the net she’ll be seen quickly, it’s it’s a case of there’s just a bloody long wait then they’ll get to her in RTT wait time ( her RTT clock starts at date if GP referral and she should be treated by 18 weeks, though since covid this target is near impossible to meet, but you can still quote it).

I hope she’s seen soon

17 year old DD had major orthopaedic surgery last year on her spine (scoliosis). Waiting lists are awful where we are so I really feel your pain, honestly the uncertainty of when she was actually going to get her surgery was the worst part out of any of it.

Ask if there’s any possibility that she can be transferred out of region - we ended up being sent to the Royal National Orthopaedic Hospital in London due to waiting lists and so have other children/teens in our area. It meant that our expected year and a half wait was cut down to only 5 months. Although getting on a plane (we live in Belfast) isn’t ideal 5 days after major surgery it was well worth it due to the amount of pain she was in beforehand.

I was constantly on the phone to both her consultant’s secretary and the liaison nurse making sure they were aware of her worsening condition, how it was affecting school etc and always chasing up reviews and scans as otherwise they were simply forgotten about. Also see if your GP will write to the consultant echoing your concerns and maybe even look into getting your local MP on to it. PALS definitely a good idea as well.

I really hope your daughter gets sorted out soon xx

I'd still ask GP to write again. Because it the fact another chase letter has been sent adds to your file/case and then it can't be ignored, it's logged as having been chased. I'd then, after a couple of weeks, phone consultant secretary again.

Agree to chase harder
I’d say the fact she’s a child and missing education provides a case for her to be bumped up

ortho is a nightmare as so many elderly people
are all waiting (still !) post covid

but this is a get onto the phones and emails and GP chasing hard situation

private would cost circa £15,000

which most people don’t have to hand I know
but If a loan is possible ?

It's horrible, isn't it? I'm an adult with the same condition and was on a waiting list for two years starting in 2020, then moved and am back on a waiting list at a new hospital with no idea of when I'll be operated on. Unfortunately I don't think chasing will make any difference, as everyone on the waiting list for major orthopaedic surgery will be in a lot of pain and they won't let people jump the queue. When I have called for updates, the secretaries weren't able to tell me much at all about timelines.

@lobeliasb Honestly speaking from both a parent’s perspective and a professional perspective chasing is so important. It shouldn’t be the case but unfortunately it is at the minute with the state of the NHS.

My DD only waited 5 months for her surgery, whereas a girl who was in having her operation at the same time (who had deteriorated to a far worse condition that DD) was waiting 5 years as she had literally been forgotten about and lost in the system. With DD I was constantly on the phone updating them of her condition, chasing reviews etc and it worked.

I am an orthopaedic physiotherapist working in a private hospital, occasionally the NHS sends patients to us and 90% of the time they are the patients who have been vocal and not allowed things to slip by

Chase as the above poster says. Get the consultants secs contact email or number and call, explain she is deteriorating and you want an update as its now 6 months past original date. Just be polite and firm. I had ortho surgery and did this , let them know I could do short notice and it sped things up even if I only got 5 days notice for major surgery. Should say also an NHS physio so maybe we chase more happily!

Your GP had no control over this- yes, they can write but I’m fairly confident (here at least) it has no more impact- and possibly less- than you writing directly to your hospital clinical team citing everything you have just said… negative impact on education, alienation from peers, deconditioning, risk of developing chronic pain syndrome etc.

It feels like everybody needing surgery is on an awful waiting schedule for any intervention. It truly sucks.

But as someone up-post re ‘getting GP to write’ says ‘everyone is doing it so it doesn’t mean much’.

Write to your hospital team yourself. Email them, phone them weekly… copy in PALS and keep at them. But I’d suggest you do it directly.

In this situation using your GP as an intermediary probably won’t get better results- it’s out of their control- and uses incredibly pressured primary care resources for something that won’t really impact the hospital process or outcome. So much GP time is now focused on trying to ‘keep things afloat’ for patients who NEED specialist input but are on an undefined ‘list’.

I’m really sorry for your daughter. It absolutely sucks and should not be this hard.

ps PALS is not just for complaint process. This is exactly the sort of circumstance where they can help/ make a difference.

xx

Hi, just a quick update. I contacted my MP, PALS and the GP chased and we have a surgery date (5th April!).

Thanks for all the advice!

That is wonderful news OP! Also happens to be my DD’s birthday - will be thinking about you! X

Bilateral femoral osteotomies usually have an epidural for pain relief post op. This can only be done if the ward has the correct staffing for the entire time the epidural is running. Usually 3 nights and four days. Which makes it tricky to schedule it. And more likely to get cancelled if the staffing isn't right.

That’s a really good update. Hope everything goes smoothly now.

I'm so happy you have a surgery date - great news.

JoanneH12

thats so soon ! Well
done x

Brilliant news, so pleased to read the update.

Amazing! So pleased your daughter will be back at school soon