Was I unreasonable to complain to the hospital?

[NameChanged15729]

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

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.

That seems unfair and a rather stupid decision. Surely if your DD has more needs, is more affected by Autism she’ll need their help more, not less.
Complain to PALS. Are you members of the Autistic Society? Would they advocate for you too?

I’ve complained to PALS. I don’t suppose it will amount to much but thought it was worth a go.

I suspect that’s why the dr won’t speak to me. She has made it clear that she is aware that I’ve made a complaint.

I don’t really know where to go from here. Can I get her re referred to the service or will they make me try whatever it is they have prescribed first?

@NameChanged15729

I’ve complained to PALS. I don’t suppose it will amount to much but thought it was worth a go. I suspect that’s why the dr won’t speak to me. She has made it clear that she is aware that I’ve made a complaint.

I don’t really know where to go from here. Can I get her re referred to the service or will they make me try whatever it is they have prescribed first?

Difficult to say, because it depends on what the paediatrician has told the GP. Hopefully the GP will have a letter from the hospital, so will have more info.

Are there any other hospitals in your area? You have done nothing at all wrong, but sometimes it's just easier to start again with a new team.

@NameChanged15729

I’ve complained to PALS. I don’t suppose it will amount to much but thought it was worth a go. I suspect that’s why the dr won’t speak to me. She has made it clear that she is aware that I’ve made a complaint.

I don’t really know where to go from here. Can I get her re referred to the service or will they make me try whatever it is they have prescribed first?

They can’t make you do anything....you can ask for a referral ....but would she still meet the criteria for referral? Are your comm paeds there simply for assessment purposes? Where I am.....ASd children remain under the care Of a community paediatrician until they are 19 with a yearly review....they have open access to the service.....was she diagnosed via an ASD pathway ? ....here any diagnosis decision goes to panel....the decision would not be made solely by a paediatrician......can you ask the HVs to refer to continence team.....where I am they accept referrals from age 4.....can you ask for a referral to ASD nurses for support? Does your local hospital have a paediatric sleep clinic? ....do you live somewhere quite rural....sounds like you’ve not many services around....hope you get sorted

Kitkat151 I’m willing to try whatever it is they have prescribed. I don’t want to cut my nose of to spite my face so to speak. I also want to know that if it doesn’t work I’ll still have the option to refer dd back to the service.
The pead said that she will only prescribe melatonin to children under her care so there’s got to be some kind of ongoing service there. I suspect it’s through the sleep clinic.

Honestly, I’ve rejected the sleep clinic because the advice won’t be relevant to dd and it will upset me. I have been to these types of courses and clinics when ds was diagnosed and learnt that the advice is targeted more towards children like ds. Children who have some level of understanding and are verbal but very routine based and resistant to change… broadly speaking anyway.
Dd can not communicate and doesn’t have the understanding to respond to her own name. The advice just won’t be applicable.

That open access is why I’m so angry. My ds has that and it’s brilliant whereas dd was discharged. The only difference was they were diagnosed by different doctors. The same clinic, same pathway, both assessed by multiple specialists and assessed at panel. It makes no sense and the only logical explanation I can find is maybe the funding has been cut since ds was diagnosed and now they discharge after diagnosis. It hardly seems fair though, particularly as dd in all honesty needs the continued care more.