Active discussions

Meet the Other Phone. Flexible and made to last.

Meet the Other Phone.
Flexible and made to last.

Buy now

Please or to access all these features

Talk
AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Was I unreasonable to complain to the hospital?

30 replies

NameChanged15729 · 03/03/2022 20:23

I keep flip flopping on whether I was reasonable to have made a complaint regarding my children’s unequal hospital treatment. Every time I think about it I feel angry but I’m not sure the complaint was justified.

Both my ds and dd have a diagnosis of autism and global developmental delay. Both diagnosed at the same hospital but by different paediatricians. When my son was diagnosed he was not discharged from the service and now gets yearly progress reviews. This means that if I need to discuss anything regarding his diagnosis and behaviour I can phone and make an appointment and any further referrals are made easily.

My dd however did not get this privilege. She is severely autistic, can not communicate and has very little understanding. Basically she is severely disabled and cognitively impaired. Due to this I was surprised when at her diagnosis appointment I was told that she would be discharged from the service as her condition is life long. I still don’t understand how that’s relevant to the discharge Hmm

I was a bit upset because I felt like my son was kept on as ‘he is more able’. It honestly feels like they know he will improve with guidance while dd is a lost cause.

I was told when dd was discharged that it didn’t mean the service was closed to her and I could still contact them. I’ve now discovered that isn’t exactly true and I feel like my child has been abandoned. Dd really struggles with sleep and it was suggested that melatonin could be beneficial to her at her feedback clinic. I didn’t think about it at the time but we have reached crisis point with her sleep and it’s impacting the whole family. I phoned to try and get a prescription just to be led on a wild goose chase by the secretary. Gp surgery are saying that she will need to be referred to the paediatrician again to be given a prescription for it as it can’t come through them. I resent having to be re referred as I don’t understand why she was ever discharged! I honestly feel like it was due to her high need levels and they wanted to wash their hands of her. I’m angry that my dd is not getting the same level of support and care that my ds is and I don’t understand the reasoning behind it.

I’m just so fed up. Fed up of having to fight for every single scrap of support and help. Being made to feel guilty asking for something that I know will help her and our family.
Her statement is taking ages to finalise and she is coming home from nursery everyday having been eating sand, paint and mud. Her poo is just solid sand which is causing her pain. She’s sleeping 3 hours a night five days out of seven and there’s just no support. Nothing.

Was I unreasonable to complain to the hospital about her being discharged? Will it even help the situation at all? I’m at a loss.

OP posts:
RedHelenB · 03/03/2022 20:27

Will they prescribe it to your d's with her being so young? I hope you get the support you need when the referral comes through again.

BanginChoons · 03/03/2022 20:30

Absolutely do complain. Nothing changes if we don't. My 2 are under CAMHS and the waiting times are appalling.

Bundlesofchocforme · 03/03/2022 20:31

That sounds so so tough and unfair. I’ve no suggestions I’m afraid but didn’t want to not reply.

NeverDropYourMooncup · 03/03/2022 20:33

I'd be complaining about a nursery that allowed a child to eat non food substances. Nobody needs to be slapped around the face with an EHCP to know children shouldn't be allowed to do that.

Original poster
NameChanged15729 · 03/03/2022 20:41

She’s not far of four, just seems a lot younger.

The nursery issue is difficult. She loves going and I’m so worried that if I bring it up to them they will exclude on the grounds of not being able to supervise her properly. The school were quite difficult when my son started and have made me aware that it’s something they can action. They know she’s doing it and I understand it’s hard to stop her. It’s just really upsetting having to change her when she’s screaming in pain due to the wipes basically turning to sandpaper the minute you try and clean it.

OP posts:
busyeatingbiscuits · 03/03/2022 20:43

@NeverDropYourMooncup

I'd be complaining about a nursery that allowed a child to eat non food substances. Nobody needs to be slapped around the face with an EHCP to know children shouldn't be allowed to do that.
No nursery is going to allow a child to eat non food substances but on a 1:8 (or larger) ratio you can't police all children all the time. The EHCP may make funding available for 1:1 care.

I remember as a nursery teacher having an ed psych suggest that we use barriers in the classroom to prevent a child from accessing any playdough, sand or paint. It just isn't practical to do that in a busy nursery classroom!

@NameChanged15729 you are right to raise this. You at least need a coherent explanation of why your DD was discharged and how she now can access the same level of support as your DS.

aceyace · 03/03/2022 21:04

We have a group/charity within our county that helps parents with send children, can you access anything like this? Sometimes having a support worker or a carers group makes life a bit easier, are there social workers involved that could help?
it's so hard and I'm sorry to hear you are struggling,💐
There are probably a few support groups on Facebook as well

RedHelenB · 03/03/2022 21:13

@NeverDropYourMooncup

I'd be complaining about a nursery that allowed a child to eat non food substances. Nobody needs to be slapped around the face with an EHCP to know children shouldn't be allowed to do that.
It can be very hard to stop them. Hopefully there will be funding for a 1 to 1 which would help.
Getmeoutaherenow · 03/03/2022 21:24

It's the only way to change the system - they don't understand anything else. Hope things improve for you.

TheHoptimist · 03/03/2022 21:27

@NeverDropYourMooncup

I'd be complaining about a nursery that allowed a child to eat non food substances. Nobody needs to be slapped around the face with an EHCP to know children shouldn't be allowed to do that.
Would you like to share how you would prevent it?
Fml1980 · 03/03/2022 21:38

I have 3 children with Autism and not one of them got yearly reviews.
The 2 older ones had a review 6 months after diagnosis and that was it.
The younger one was discharged the day he received his diagnosis and I was told I knew what I was doing and basically be on our merry way!
Autism services as with many others are shocking!

Original poster
NameChanged15729 · 03/03/2022 21:45

It’s unbelievable shocking Fml1980. I’m sorry that your experience wasn’t much better. When my first was diagnosed I was told that in an ideal world he would benefit from occupational therapy and he is entitled to it… but the demand is so high they will probably only provide a telephone consultation. I don’t see how any of this can be justified.

The thing is I don’t know what I’m doing! While they have the same diagnosis they couldn’t be more different from each other.

OP posts:
cansu · 03/03/2022 21:50

I think complaining and calling out unequal treatment is the only way forward. FWIW the GP can prescribe it. They are passing the buck as it is easier to get someone else to do it. My GP who has now retired prescribed it for my ds. He told me he had the discretion to prescribe it off label and he did. I know however of other GPs who prefer to get someone else to make the decision.

hibbledibble · 03/03/2022 21:52

Here it is diagnosis and discharge as well. Parents are told to get further advice from a voluntary organisation. I think it's fairly standard nowadays, and the difference in treatment between your children is likely due to the timing when they were diagnosed.

NeverDropYourMooncup · 03/03/2022 21:53

Well, not leaving the child who tended to eat non food substances as unsupervised around things that will fit into the mouth, largely. It's a few years since I last did the job (I've worked directly with all age groups at one point or another in my time before going for a slightly less physically demanding job), but you know your group, you know who is more likely to demonstrate vampiric tendencies, the one who is a known flight risk, who is generally biddable verbally but will benefit from a little more encouragement - and you adapt with the circumstances.

But then again, I've also worked in places with a different ratio where it was less a case of eating sand and more who is likely to pick up the table and throw it out of the window or might quite feasibly embed a Staedler HB in the arm of somebody who thought it very entertaining to keep nudging up against them to see what's going to happen next

At least toddlers and preschoolers are less likely to be waving a fuck off kitchen knife at you because they're looking for the one who won their punch up on the way home yesterday afternoon. The little ones definitely felt easier to me compared to the larger groups, for all their playdo eating proclivities.

ISmellBurnings · 03/03/2022 21:58

Our GP can’t prescribe melatonin (I spoke to them about it), it can only be prescribed by a paediatrician and like you my DS was discharged after diagnosis so we’ve had to be re-referred.

I do feel like once you’ve got a diagnosis you’re waived out the door, before thinking ‘well now what?’.

Melatonin has made a huge difference though.

busyeatingbiscuits · 03/03/2022 22:05

@NeverDropYourMooncup

Well, not leaving the child who tended to eat non food substances as unsupervised around things that will fit into the mouth, largely. It's a few years since I last did the job (I've worked directly with all age groups at one point or another in my time before going for a slightly less physically demanding job), but you know your group, you know who is more likely to demonstrate vampiric tendencies, the one who is a known flight risk, who is generally biddable verbally but will benefit from a little more encouragement - and you adapt with the circumstances.

But then again, I've also worked in places with a different ratio where it was less a case of eating sand and more who is likely to pick up the table and throw it out of the window or might quite feasibly embed a Staedler HB in the arm of somebody who thought it very entertaining to keep nudging up against them to see what's going to happen next

At least toddlers and preschoolers are less likely to be waving a fuck off kitchen knife at you because they're looking for the one who won their punch up on the way home yesterday afternoon. The little ones definitely felt easier to me compared to the larger groups, for all their playdo eating proclivities.

So you’re sitting round the play dough table with the eater on one side of you and the kid that bites on the other, supervising everyone, and then another child falls off their chair and you have to help them and the eater eats some play dough.

Or one adult is changing a nappy, another is preparing snack and you’re reading a story to 20 kids on the carpet, when the eater decides to wander over to the sand tray and grab a handful.

It’s not a question of leaving a child unsupervised. If you have a child who eats things you would need to have an adult within reach of them, focussed only on supervising them and never distracted by any other child or task to ensure they never had an opportunity to put anything in their mouth.

parietal · 03/03/2022 22:06

The financial pressure on the NHS is probably the reason why they are now discharging kids after diagnosis rather than providing continuing care as they did a few years before.

do keep complaining & advocate for your child.

Imitatingdory · 03/03/2022 22:45

When my first was diagnosed I was told that in an ideal world he would benefit from occupational therapy and he is entitled to it… but the demand is so high they will probably only provide a telephone consultation. I don’t see how any of this can be justified.

Does DS have an EHCP? OT can be included in section F, therefore it must be provided. If the NHS can’t or won’t provide it the LA must commission independent provision.

Does DD have an EHCP?

Ask if a referral to a sleep clinic will be quicker than to a paediatrician, in some areas it is and on others it isn’t.

Have you had social care assessments? A carer’s assessment for you and assessments by the disabled children’s team for DC.

BlondeWidow · 04/03/2022 11:39

@NameChanged15729 My DD was prescribed Melatonin by her GP? She just had to contact the Paediatrician who diagnosed her (she was also discharged after diagnosis) for permission. This was a quick phone call apparently then my GP was able to prescribe it. All done within a day.

I also feel resentful that DD's support ended at diagnosis :(

Dithercats · 04/03/2022 11:55

Our GP said to prescribe melatonin they have to consult with the paediatrician.
I was advised to use priton at night in the interim.

OP can you contact your DS autism follow up service and say you need help with your DD?

TroublesomeTrucks · 04/03/2022 12:03

@cansu

I think complaining and calling out unequal treatment is the only way forward. FWIW the GP can prescribe it. They are passing the buck as it is easier to get someone else to do it. My GP who has now retired prescribed it for my ds. He told me he had the discretion to prescribe it off label and he did. I know however of other GPs who prefer to get someone else to make the decision.
It may be that regulations have changed and GPs are no longer allowed to prescribe it off label, but it may also be the case that it has to be started by a specialist but GP can prescribe repeat prescriptions - regulations may also vary from place to place.

OP - it may be possible to request a referral to a particular doctor so you might be able to ask for your DD to be referred to the doctor treating your DS if you prefer. This isn’t always possible for all specialties though.

Iamkmackered1979 · 04/03/2022 13:11

Could you speak to the secretary again? Seems futile having to be referred back again are there any other supports in place? Sorry you’re going through this, the system is really broken for kids like your daughter (and my son)
He is on melatonin and it is a paediatrician who needs to ok it then the gp prescribes, it’s electronic so if you can get them to prescribe it that would be helpful, it’s really helped my son.
Take care op, really hope you can get somewhere. Would your gp contact original consultant?

Original poster
NameChanged15729 · 07/03/2022 19:06

The paediatrician has said she won’t prescribe it to children who are not under her care, I.e. been discharged. I’m furious.
She has prescribed something else which is apparently very similar, I didn’t catch the name of it but I imagine I’ll find out tomorrow when the gp calls me.

I don’t know what to do. I want an actual appointment with the paediatrician to discuss my daughters sleep issues properly. As it stands she won’t even speak to me on the phone.

OP posts:
MissLucyEyelesbarrow · 07/03/2022 19:17

I''m a GP. Legally, any doctor can prescribe any drug (with a tiny number of exceptions). However, all doctors are required to follow national and local guidance on prescribing. Local guidance on who may prescribe melatonin varies, which is why different PPs have had different experiences.

It's not a question of GPs passing the buck, or avoiding work: it's actually a lot more hassle to have to keep referring patients back to a service than to issue a prescription.

Hope you can get DD seen soon, OP - the whole thing sounds incredibly frustrating.