How to deal with medical negligence of a child?

[amethyst333]

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..

For private I normally go through Bupa, and read through the consultants to pick one

No idea on medical negligence I’m afraid - sounds like death by a thousands cuts rather than one big mistake.

However, this condition really sounds awful and I’m always shocked to hear about people being bounced around like this with children. Can you change GP and make a complaint about your current GP? Mine have been amazing with my little one.

I also reckon private healthcare - I have mine through work and usually use someone at the Spire as it’s local but you can probably just google. Often the consultants work at the local hospitals so will diagnose and treat and then refer you back to the right team at the right hospital (that is what happened for my husband with a severe type of arthritis as private insurance doesn’t fund the drugs but the NHS does). It has also been an invaluable way forward for me for chronic conditions - I had recurrent uti’s with kidney infections for years and took hundreds of antibiotics in that time - the last straw was a GP at a massive London doctors surgery telling me to learn to live with it. Saw a consultant privately shortly after, op later that month and all sorted now. Haven’t had it back in over a decade. Also saw someone privately about chronic digestive stuff after 10 years of the GP and he knew immediately what it was, had a scan to confirm and meds to take. Much better now. It can be life changing.

I find the nhs is best for emergencies rather than anything chronic but I’m sure (and I hope!) plenty of others have different experiences!

All the very best luck OP. Xx

Eczema can be as bad as you describe, and can very quickly become uncontrollable. It sounds like he has been diagnosed with eczema and given a treatment plan but it has become unmanageable. You have lost confidence in the GP / doctors and are looking for answers. I’m actually very surprised you were allowed into the hospital today - my local hospital has staff on the doors and you’re only allowed in if you show an appointment letter, or are going to A+E which has a separate entrance.
Your mother needs to contact the GP - its no use you doing this, you’re not the next of kin so they cannot discuss your brother with you. Request a telephone appointment in order to review his treatment plan, with another referral to the dermatologist. It’s important to understand that if the prescribed treatment plan isn’t followed to the letter that could have an impact on his progress.
Having a niece who has been hospitalised several times due to infected eczema I understand how upsetting it can be to see little improvement.

Well I don't know what you should do but I know what I would do. I would march into your GPs surgery tomorrow and kick up a very loud, visible fuss with as much public attention as possible, and make everyone as uncomfortable as possible until you have what you want. And I would want a very very good dermatologist for this. You have absolt nothing to lose and everything to gain by being a complete and utter pain in the ass.

Is he under a hospital based dermatology department? Is there a help line fir a clinical nurse specialist in that department ? If so get on to them first thing tomorrow.

Has he had a recent course of oral antibiotics? atopic eczema can get infected especially if he's scratching a lot so I'd push for someone to examine him ASAP

OP. It looks like you are in the area of a centre of excellence for pediatric dermatology

Click the link, look for the consultants and then google each of them and where they run private clinics, pick one

Google the phone number of the clinic, call it and ask to book a private appointment with Dr XYZ

They will transfer you to the secretary for the doctor, book an appointment, dont get into the back story, just describe your brothers current status and say his care over the last year has been problematic because of covid.

This should jump start his care. The doctor will put together a treatment plan and then you can opt to stay private or go back to NHs care. If you go back to NHS then you will have a plan that your GP will have to stick to. If you do go back to the NHS, make sure you have a copy of the treatment plan yourself, and make copies of it

Good luck

Sorry, here is the link

bwc.nhs.uk/dermatology/

I completely understand what you're going through trying to get your brother physically seen by a dermatologist. My son has suffered severely with Eczema since birth and has been under the care of Great Ormond Street Hospital since age 5, he's now 15. During lockdown he also became very unwell with his skin like never before, was dreadful to watch but after having hospital appointment with his consultant she put him on two weekly injections which suppress the part of the immune response that triggers the eczema . He has had the usual immunosuppressants in the past which partially worked but gave awful side affects but this is a new one and is working amazingly with no side affects so far. We never got anywhere with local dermatologists other than the usual topical treatments and food diaries etc etc which were all a waste of time as when we got to Gt Ormond St they tested his Ige levels and they were through the roof , they said there are things foods etc that can aggravate the eczema but in his case it's a gene he has that 40% of the population carry so he will always have this and it's about managing it at this level so there's quality of life which your brother sounds like he desperately needs . As posters have said if you can afford one consultation with a private paediatric dermatologist please god they help him as unless you have a child this severe people don't realise how unwell they get .The Professor we saw initially was Professor John Harper , look him up online he still practices privately . Read a s much factual medical information from reputable websites like the national eczema society so you are armed with relevant information to put to the doctor . Wish him a speedy recovery xx

Big hugs for your little brother Op. This was me when I was a child. Constantly in and out of hospital. When you say fungus, do you mean blistering?
Is your brother still having dairy in his diet?

Also have you tried organic creams? Moogoo is a good company. Expensive but worth it.

I don't have any advice on the complaining side of things. I hope things get sorted soon! I know how painful eczema is.

@Cocopops2 dupixient??That's what I was going to suggest to OP!

Out of interest OP is his mouth affected ? As in the mucus membranes of his mouth ?

I can highly recommend a private dermatologist but he’s in the NW, so probably an hour or 2’s drive.

Ask your gp for a referral to Birmingham women and children’s dermatology team. You are allowed to be referred out of area .....some GPs drag their feet more than others due to CCG funding, etc.

Also contact the practice manager of the gp surgery. To see a consultant, you need a referral from the doctor first.

@Plumedenom

Well I don't know what you should do but I know what I would do. I would march into your GPs surgery tomorrow and kick up a very loud, visible fuss with as much public attention as possible, and make everyone as uncomfortable as possible until you have what you want. And I would want a very very good dermatologist for this. You have absolt nothing to lose and everything to gain by being a complete and utter pain in the ass.

There s squeaky wheel insisting on referral repeating key phrases like My child is unable to sleep due to pain My child is becoming withdrawn and anxious My child is getting worse every day My child needs to be referred Here are the photos Here is the week s symptoms diary Etc

Vs screaming and shouting and having a tantrum which will get you marked on notes as a difficult parent and won't get him seen any quicker