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How to deal with medical negligence of a child?

41 replies

amethyst333 · 17/05/2021 21:57

Hi, I was recommended to post here. It will be long so apologies, but the first paragraph might give you a rough idea of how we're being treated. We would really appreciate any advice or recommendations.

[ My younger brother (8) has been having severe skin-related problems since late 2019. Before that he had eczema now and then which was usually triggered if he ate something he was allergic to. He is progressively getting worse. How do you deal with medical negligence in the UK? Where do we start off with complaints? We're just being passed around like pingpong balls at this point, it's frustrating, hospital points at the GP, the GP points at hospital, nothing is making sense anymore and terrible and consistent errors in the system are made way too frequently to feel like a coincidence. I know C0VID had a big impact on the NHS but this isn't a paper cut. ]

Late 2019 he had a skin fungus on just one of his fingers, that's where it started going downhill because it started spreading to his entire body and scalp with sores, at some point the school refused him, I had to take him to an emergency centre.. They did nothing other than sending us home with antibiotics, just like the GP (he was given antibiotics 3 times with no success). Then when c0vid hit, his dermatology appointments in hospital were cancelled throughout 2020.

Phone/video appointments weren't helping, the prescription (medicated) creams weren't helping anymore. Still no doctor that has actually seen his skin up close and physically.

3 months ago it has been getting a lot more worse, it almost feels like it's no longer related to just his skin. Most creams he used on prescription started burning his skin now. Ointment is the only thing that doesn't burn. However it is not helping.

His skin is constantly red (a deep red, especially on legs), he has eczema all-over, his skin is peeling every single day and night (I wish I could show you his bed every morning, you wouldn't think a small human could shed that much visible skin in a single night, it's even noticeable between the wall and carpet, when he takes off his clothes it looks as if sand is coming out of the clothes), swollen lymph nodes on several places, he complains about sudden sharp pains in his legs and private area, his scent changed, more fatigue, nausea, chills no matter how high the heater is on.. none of this has been diet related as far as we know.

My mother has been trying to get in contact with the hospital for a physical appointment but not with much success because they (despite telling them multiple times, including TODAY) have not updated the personal details meaning appointment letters weren't going to the right address. Neither do they call back and when we call them we're told to ring another day. Even the health centre ignored our emails.

We are aware it doesn't work this way but we took him to hospital today with no appointment in hopes of having him seen by someone at least. We started with paediatrics but the ward was empty and the receptionist advised us to go to dermatology.

The receptionist at dermatology stated that there were no doctors in today, then she took it back and said there were no paediatric dermatologists in. My mom asked about appointments, she replied she can't do anything because she wasn't in charge of appointments. But when I asked her if we could see the person in charge of appointments, she suddenly was able to book appointments. Really strange to witness this gaslighting behaviour. However, she said she updated the personal details in the system and lied about a dermatologist being available at A&E and referred us there.

Nothing happened at A&E other than being informed the receptionist at dermatology didn't update anything and that the dermatologist wasn't even working today. They sent us to UCC.

The doctor at UCC basically went like this "welp, we tried all creams, can't do much now ¯(ツ)/¯" and sent us home with a cetraben lotion prescription.. As if all these symptoms/signs couldn't mean something else and might require diagnostic tests? When my mom brought up the idea of a blood test or any other test she was told to call our GP. And guess what the GP said when she called? She was told to call the hospital. It doesn't make sense anymore.. All trust has been vanished.. it seems like they're just too reluctant or don't want to help. Imagine how this child must feel..

OP posts:
LIZS · 17/05/2021 22:01

PALS at hospital? They can point you in relevant direction if beyond their remit. However A and E/Urgent Care is not the right place for a chronic condition. Practice Manager at gp surgery.

notapizzaeater · 17/05/2021 22:04

PALS at the hospital should be able to help.

RosieLeaLovesTea · 17/05/2021 22:07

If you want to complain about hospital treatment and all of the different services he has tried to access, I would start making a complaint via PALS (patient advisory liaison service). Also Healthwatch services are squally local advocates and councillors who may be able to raise your brother’s case. Contact and write to your MP.

If he has new symptoms the. Keep reporting back to GP. Especially about the swollen lymph nodes, nausea and chills. He may have an infection.

Interested in this thread?

Then you might like threads about this subject:

Ravenspeckingearly · 17/05/2021 22:08

OP, are you in the UK? (i'm asking because you say 'mom'). I'm sorry you are having such a tough time, but you haven't described medical negligence. You won't get access to any specialist service in the UK by rocking up to the hospital, because that isn't the way it works, you have to be referred by your GP (thats who pays for your appointment, so if there is no GP referral there will be no payment) The only other way to see a specialist is by being referred via A&E. You will only get referred via A&E if its a true medical emergency - which, from what you've said, it isn't. Lots of hospitals in the UK don't have a resident dermatology service in any case. Many specialities are still only doing online/virtual clinics (including dermatology in my area), and whilst I appreciate your situation is extremely frustrating you aren't alone. I was talking to someone today who advised that their dermatology appoints had been moved back by a year. Private clinics around me are also only doing virtual consultations. If you can afford a private consultation (usually £120-£250 depending on where you live) then, even though its virtual that is the road I would go down - ask you GP to refer you privately. Unfortunately the NHS isn't a system that can easily be beaten unless you have a genuine emergency in which case you'll get world class treatment immediately and for free.
But you don't currently have a case for negligence

BitOfAFaff · 17/05/2021 22:13

Yes definitely PALS.

You know with this much neglect in his care I would take him down to the doctors first thing tomorrow tell reception you're sitting down until you're seen.

This is not acceptable. You want blood tests and you want them now.

DaisyDreaming · 17/05/2021 22:19

Have they ruled out red skin man syndrome, it can be caused by the creams?

I would look to find a consultant who specialises in the area and go private if you can, just one private appointment can get the nhs ball rolling and get things to come together

Embracelife · 17/05/2021 22:21

See a private paediatrician?

Has he been tested for coeliac?
See a different gp

Turning up at hospital won't help
Go back to gp
Ask for blood tests and paediatrician referral
Calmly.

DaisyDreaming · 17/05/2021 22:21

Sorry it’s red skin syndrome I was thinking of (the red man one is related to an antibiotic) www.healthline.com/health/red-skin-syndrome

ChiefBabySniffer · 17/05/2021 22:24

This is heart breaking to read. Your poor brother, no child deserved this sort of medical neglect.

I would start with PALS , write them an email and copy your local mp into it. Included photos and a detailed explanation. Really explain about the impact this has and how you feel there is something else going on. How you are not being taken seriously.

And I would move heaven and earth to get a urgent private dermatologist appointment.

Good luck.

Brokenpencilsarepointless · 17/05/2021 22:30

Really, at this point you should go private. It isnt fair to have to pay out to have this sorted but I would he prioritising finding the money for that.

Continue with your NHS complaint, maybe try and get compensation to reimburse what you pay out for a private diagnosis, but go private and get the kid sorted out.

Shelddd · 17/05/2021 22:51

I agree with everyone saying private. You should still complain to anyone and everyone who will listen but priority has to be care for your brother. You don't have to get treatment privately... but you can just use private care to get a better diagnosis. Then go back to NHS with that diagnosis and get treatment there.

If you do go private, do an in person consultation. Most private providers are doing in-person consultations and have been basically this whole last year (I have been seen privately in person during peak covid). Do not do a phone/video consult.

I know it sucks to spend money when we are paying tax dollars for this, but even if you have to borrow it, it will be worth it.

amethyst333 · 17/05/2021 23:01

Thank you for the responses about PALS! I'll definitely write them along with the others mentioned. And when going private, which private healthcare provider would you recommend?

OP posts:
Foxhasbigsocks · 17/05/2021 23:03

If you are in London Portland hospital is good

amethyst333 · 17/05/2021 23:11

@Ravenspeckingearly

OP, are you in the UK? (i'm asking because you say 'mom'). I'm sorry you are having such a tough time, but you haven't described medical negligence. You won't get access to any specialist service in the UK by rocking up to the hospital, because that isn't the way it works, you have to be referred by your GP (thats who pays for your appointment, so if there is no GP referral there will be no payment) The only other way to see a specialist is by being referred via A&E. You will only get referred via A&E if its a true medical emergency - which, from what you've said, it isn't. Lots of hospitals in the UK don't have a resident dermatology service in any case. Many specialities are still only doing online/virtual clinics (including dermatology in my area), and whilst I appreciate your situation is extremely frustrating you aren't alone. I was talking to someone today who advised that their dermatology appoints had been moved back by a year. Private clinics around me are also only doing virtual consultations. If you can afford a private consultation (usually £120-£250 depending on where you live) then, even though its virtual that is the road I would go down - ask you GP to refer you privately. Unfortunately the NHS isn't a system that can easily be beaten unless you have a genuine emergency in which case you'll get world class treatment immediately and for free. But you don't currently have a case for negligence
Yes, I am in the UK. We're Dutch and have been here for 4 years. We are very much aware that showing up at a hospital won't get you specialist service, which I specifically mentioned before but what can we do? We're desperate for anything at this point, don't you see the frustration in those paragraphs? I was trying my best to stay coherent and less emotionally all over the place. If you saw this kid right now you wouldn't believe your eyes. This isn't just some eczema here and there, the poor boy is ill.
OP posts:
amethyst333 · 17/05/2021 23:12

@Foxhasbigsocks

If you are in London Portland hospital is good
We're located in the West Midlands but thank you for the recommendation.
OP posts:
RAOK · 17/05/2021 23:13

Definitely go private. Agree you shouldn’t have to but your brother must be in so much pain.

nocoolnamesleft · 17/05/2021 23:20

I would suggest that you can help draft it, but it needs to be your parents who put their names to anything you send to PALS. PALS would not be able to reply to you as you don't have parental responsibility.

amethyst333 · 17/05/2021 23:25

How could someone say it can't be a case of negligence if your emails pleading for help including pictures have been ignored? If your phone calls have never been returned to? If personal details have never been updated despite many corrections? If receptionists have a dismissive attitude before you even get to explain the situation? If you've been referred back and forth between different healthcare settings? If asking for diagnostic tests gets you stared at as if you were a unicorn? If a doctor throws his hands up in the air and basically says he can't do more than prescribe a lotion?

I've been crying this entire evening, only if you could see this child.

OP posts:
Joeblack066 · 17/05/2021 23:28

@Embracelife

See a private paediatrician?

Has he been tested for coeliac?
See a different gp

Turning up at hospital won't help
Go back to gp
Ask for blood tests and paediatrician referral
Calmly.

I think this is excellent advice. Def test for coeliac. Research online for a private consultation. I’m not rich at all and had to use all my savings for DD23 but worth it. Will be circa £1200 once meds sorted but happy with our results.
IhaveMyMoments · 17/05/2021 23:29

Can I just ask has a diary of food been kept for any reactions too.
It may help when you do get to see someone.

Dddccc · 17/05/2021 23:31

How often does he bathe? My ds and dh get really bad skin and have to only bathe 2 a week max to help the skin also have you tried body stocking, you cover child head to toe in cream or ointment and cover in a full stocking overnight, also I would pay for private allergen tests they cover a huge range of items and could help you find a trigger

RandomMess · 17/05/2021 23:35

Has he been tested for strep A?

When DD had this (took years to diagnose needs to swabbed for) the GP then prescribed an insufficient strength & length of antibiotic course. Fortunately we happened to see a dermatologist whilst she was taking them so dermatologist gave a fresh prescription of what was actually required.

Look images for peri-anal
Strep A. Sore peeling skin Sad

BuggerBognor · 17/05/2021 23:39

This reply has been withdrawn

Message from MNHQ: This post has been withdrawn

Babyroobs · 17/05/2021 23:44

I would pay for a private consultation if you can. I understand not everyone is able to. It sounds awful for the poor boy, I really hope he gets the help he needs soon.

qualitygirl · 17/05/2021 23:48

Sounds like a very bad bout of atopic dermatitis OP?