Its no wonder people go to A+E

[HMClumsyChild]

My 6 year old DD has physio and sees a podiatrist. She has custom made insoles in her shoes.

Recently her appointments have been all online which is really difficult for both the HCP and DD, makes getting measurements for the insoles difficult and doesn’t actually tell the HCP if the insoles are working or she needs something added or them changed in some way.

The last two appointments I’ve made have been cancelled. First time in December I was told all routine appointments have been cancelled due to covid, this time staff shortages are to blame. The text threatened me saying that if my child did not use up their allocation of equipment (so insoles, boots, fittings for inside shoes etc) they may be removed from the list and referred back to the GP.

DD desperately needs new insoles, her feet have grown and just getting new shoes doesn’t help as the insoles stop her feet from being too far from the edges. But I can’t get the new insoles. She hasn’t had new insoles since August, she’s supposed to have new ones every 8-12 weeks to help with growing and also change the insoles around her feet. The insoles take 4 weeks to make, so that fits with her growth pattern. I have new shoes but DD is more clumsy and falls over a lot (and we’re not talking grazed knees which is bad enough we’re talking bumped head or hitting face). She’s very hypermobile in her legs and arms, doesn’t put her arms out to catch herself, and her arches collapse so she needs the insoles.

I’ve tried calling but I was on the phone for over 3 hours and still not moving down the queue by more than 1-2 places an hour (I started at something like 75th in the queue and gave up when I was only 72nd) I have to work and can’t have my phone playing random music on next to me while working due to client calls.

If we get discharged due to this then theres no guarantee my DD can get back in with the same team who’ve been providing her care. And it could still

I won’t take my covid positive DD to A+E but I can honestly see why people in my position would, or who’d go when they can’t get basic treatment for ongoing conditions.

I know I am UR to complain about the NHS, but I despair.

*and it could still make her condition worse while we wait

I get your frustrations but I’m not sure what you think A and E would do for someone in that position?

It’s a nightmare, I am in a similar position with the added trouble of the only person in the trust who can measure him for his lycra is on long term sick now.

I would contact your GP about the worry of discharge and see if they can help

@Sirzy

I get your frustrations but I’m not sure what you think A and E would do for someone in that position?

It’s a nightmare, I am in a similar position with the added trouble of the only person in the trust who can measure him for his lycra is on long term sick now.

I would contact your GP about the worry of discharge and see if they can help

@Sirzy I know a+e can't help her/me but I can see why people would think they can in our situation.

Trying to get through to the GP is a whole different ball game. I will try it of course but they also have shortages so no answer or they tell you to go online and fill out the triage form.

That is really frustrating @HMClumsyChild and I do sympathise. However I really don’t understand what you think a&e would be able to do for your daughter? I do think there is a basic misunderstanding about how services work. I don’t deny that you’ve had less than satisfactory care. But you realise the Drs and nurses in a&e wouldn’t be able to help your daughter with insoles? Would you expect them to ring the on call paediatric team? Who are dealing with septic or unwell children? They wouldn’t be able to get the insoles either. So I really am sorry, truly, but I don’t see why people in your position would go to a&e, no.

I know I am UR to complain about the NHS

Actually, no, YABU to allow the NHS to get away with crap care by not speaking up.

If you want the health service we all deserve, then speak up when it fails so something can be done. Complaining when it is inadequate is the only way it gets addressed.

Quietly allowing them to cause harm is not the right thing to do. Advocate for your daughter, make sure they do not discharge her.

Stop accepting shit care and stop feeling you have to be grateful for being failed. You don't. Your daughter deserves better.

@Scrunchies

That is really frustrating *@HMClumsyChild* and I do sympathise. However I really don’t understand what you think a&e would be able to do for your daughter? I do think there is a basic misunderstanding about how services work. I don’t deny that you’ve had less than satisfactory care. But you realise the Drs and nurses in a&e wouldn’t be able to help your daughter with insoles? Would you expect them to ring the on call paediatric team? Who are dealing with septic or unwell children? They wouldn’t be able to get the insoles either. So I really am sorry, truly, but I don’t see why people in your position would go to a&e, no.

That's the point! That people go there in desperation because the services they need have failed them.

Seriously, op, a complaint is the only form of communication the NHS listens to in situations like this.

Are there any charities you can contact for help?

my brother is in his 50s and has a club foot, he used to get 2 pairs of boots a year on the NHS, then it reduced to 1 pair and he wasnt able to get a pair in years, 8 years to be exact he was using super glue to try and glue new soles on the old boots and patching them up with duct tape etc around the leg iron, he eventually manged to get to the top of the list because his boots were too perished and he couldn't leave the house. the boots cost 2 and a half k to be made privately. (probably nearer 3k now.

as its just insoles, i.e nothing you can argue they are literally housebound without, I think you need to find a charity that helps with these things to help word your letters of complaints etc better to get to the top of the queue or recommend where you can buy alternatives and how much they cost.

YANBU at all. The NHS is crap. There is no "service" to be found anywhere in the whole system.

I hope your DD gets her insoles soon x

@VelvetChairGirl She actually needs boots and insoles but the NHS will only pay for one so I get the boots for her as they're easier to get and adapt to her needs than the insoles.

Is it worth writing to the doctor your child normally sees to explain the problem?

@DePfeffoff

Is it worth writing to the doctor your child normally sees to explain the problem?

@DePfeffoff do you mean GP or physio/podiatrist?

If GP I can write a letter to the surgery, if physio/podiatry I email the person she sees regularly.

Contact PALS at the relevant hospital. There’s no reason for them not to have continued seeing her. My ds has insoles for the same reason and throughout the pandemic they have had him in for quick fittings, then I have gone and picked them up when they were ready - and he was a new patient, having moved from paeds to adult care at 16.

I would also query their policy on boots. We were told they could provide boots with built in insoles for my ds, but he prefers to choose his own style.

I have found PALS very helpful when it comes to things like this in the past. I had a similar situation with my Cardiology appointments constantly being rearranged and put back and they had it sorted and me in for an appointment within a couple of weeks.

I can understand turning up at podiatrist clinic but a&e? Doesn’t make sense. Can you email the podiatrist?

You need to make a formal complaint via PALS.

If you can email the podiatrist and haven't done that yet you need to do so.

Can you write to them or email setting out your request for an appointment and making clear your daughter needs insoles appointment asap it’s due to them she hasn’t used her allocation. Maybe involve PALS.
Then at least if you are discharged you have evidence.
The usual failed to attend so we discharge you shouldn’t apply if apt cancellation due to covid.
Trying to fit orthotics by zoom the mind boggles (my dd used to be fitted for prosthetics which took multiple in person appointments and I feel your pain re growth - kids don’t grown in nice 3 monthly appointments so the prosthetic made would be outgrown before she got it)

You're unreasonable to think that you can't complain about the NHS. You can. Nothing will change if we don't say something.

I understand that you weren't going to turn up at A&E asking for insoles, you were making a general point about how people cannot access non urgent primary care services and so resort to A&E.

All my family seems to do lately is go to a and e with horrendous illnesses and injuries that could have been prevented with a doctors appointment. Me and my 5yo had chest infections that went untreated for so long that I ended up in a and e with ruptured rib muscles from coughing for 3 months straight, my ds ended up on a ventilator with a feeding tube for a week as the infection got into his lungs. All we needed was a course of antibiotics when we first got sick. My oh nearly ended up losing his eye. It was red and sore but he couldn’t get a doctors app, he ended up going to the pharmacist twice who merely glanced at it diagnosed conjunctivitis. After me putting my foot down he waited for 7 hours for someone to look at it in a and e, and they immediately found an alarmingly large shard of glass everyone else had missed. He had to have an operation to take it out. Now my dd has pretty severe issues with her teeth which were given until this year to sort themselves out (only just lost the last of her baby teeth). At the last visit at the dentists we were told she needs extensive work (including the removal of 4-6 teeth) that needed to be done under general anaesthetic, she referred us to an orthodontist. We’ve just had a letter saying that her referral has been declined, they’re refusing to do the work as ‘your daughters fit and well’. She’s in that much pain now that a and e is becoming our only option to at least get the teeth removed.

If I was you, I'd get in touch directly with the podiatrist and physio by email, phone or whatever. You say you have their email addresses - so crack on. Demand a proper face-to-face appt to have the required measurements and fittings done. These days it seems the only way to get consistent NHS care is to be prepared to speak up and pester individuals. The 'system' is broken.

My nan always said the 'squeaky wheel gets oiled' and you really have to be a squeaky wheel.

We had similar problems with our orthotics department when my son needed regular upgrades for boots for his club-foot treatment. Our complaints fell on deaf ears so we actually transferred care completely out of Trust. We have ongoing reviews which were conducted by video during Covid, but eventually they requested to see him in person because these issues really cannot be assessed properly merely by sight on video.

You need to get firm. Email the physio, explain the situation. But honestly at this point I wouldn't even wait for them to sort it, I would get straight onto PALS. Make noise, refuse to have your daughter's care compromised because of this.

@Givemepickles

YANBU at all. The NHS is crap. There is no "service" to be found anywhere in the whole system.

I hope your DD gets her insoles soon x

You can't speak for all areas and locales in the entire NHS.

OP, I was chatting to an occupational therapist today (they work closely with physios, etc). He was the only OT in a very large, very populated area due to staffing being so bad. This could be what's going in the physio dept that treats your daughter.

In your shoes, I'd look at the Trust website to see if they have an alternate contact number/email for them. You could see your GP will intercede on your behalf. Last resort, look at sourcing private.