Aibu to be shocked my child's doctor doesn't know she has SN?

[PovertyPain]

I'm hoping a doctor can help me out here. If a child/young adult has SN, would it not be expected that it is obvious on her medical records? I asked for a call back from the doctor, which I'm very grateful for, regarding some information I needed put in writing from her clinic. Spoke to lovely doctor that was surprised to hear that my youngest (22yr old) has SN to level that she will never live independently and unlikely to be able to work. The reason for her surprise? There is absolutely no record of her having SN in the clinic's medical records!

My youngest is actually my niece, but I'm her parental figure and carer. She has been a patient in the clinic since birth, I've had to take her on many occasions, including before she lived with me, because medical issues had been neglected, such as untreated shingles. The doctor also put her on a low level pill, due to her horrendous and painful acne, obviously I was with her and agreed. She has always had to have someone speak for her, so why is there nothing on her recent records? Whilst I can understand they may not want to state she has SN on my say so, but surely they could write, patient's representative/parent/aunt 'states that patient has SN? Lovely doctor says she will go back into her old records, but wants my youngest to go down for an assessment. She has been Statemented. Could any doctors suggest why there would be nothing on her records? Bty, I'm not going to complain to them, as other than this strange thing, it's an excellent clinic.

[PovertyPain]

Blimey, that was long. I know better than to drip feed. nods wisely 😉

[Splinterz]

As a safeguarding issue, all patients with a learning disability (which is different to a learning difficulty) should be notified to the community teams, including hospitals. There should be a 'hospital passport' in place.

I assume she has an actual diagnosis?

[PovertyPain]

Actually, the doctor was very shocked and said that it was a safeguarding issue and she should be under a community team. Yes she has been diagnosed with autism amongst other things. She is on levothyroxin and gets her blood taken every few months.

[Glumglowworm]

Imo it should be on there, especially if she needs you to advocate for her, so you don't encounter any issues of them refusing to speak to you on data protection grounds.

(No medical training here though).

[GraciesMansion]

Autism doesn’t mean she has a learning disability though, which is where the safeguarding comes into play. The autism diagnosis should be recorded though.

[PovertyPain]

Sorry, Gracie, of course you're correct. She also has developmental delay. For example she would have the comprehension skills of a four/five year old, at most. She attended primary/secondary school for children with moderate to severe learning difficulties.

[shouldnthavesaid]

Not on the same level but mine had no idea I had dyspraxia - I told my GP at 18 when I started uni , she had no idea. When she helped me fill out DLA form a few years ago I took my assessments from age 8 , 12 and 17 all of which she photocopied for my medical records. All were carried out in NHS hospitals so found it odd no-one kept a record.

[PovertyPain]

It's actually quite worrying. I've been wondering what would happen if, for example, we were involved in an accident and I'm unable to speak for her. There's nothing to say she has SN, so how would they know what help she would need? Silly I know, but I'm sure plenty of parents on here worry about things other people think is silly.

[toconclude]

In what way is this a "safeguarding issue"? Is she being abused or neglected? If not, please don't tell SS it's a Safeguarding, this will lead to time wasted filling in pointless forms to no purpose. If she needs support, get a referral done.

[Sashkin]

Toconclude, the “safeguarding” commenter was just saying that it is a safeguarding requirement that all people with learning disability have it mentioned in their notes, that they have a community LD team, and an LD passport if they get admitted to hospital. It’s to prevent problems arising. Nobody is saying to report this to SS (or log it with 101).

[PositivelyPERF]

Well, I'm still waiting for my youngest's doctor to get back to me, regarding the fact that she isn't on their records as having special needs. The last I heard, they were speaking to her old social worker and waiting for evidence that she has been statemented. In the meantime the benefits people won't pay her ESA, as I can't get a sick line for her (the fact that they need a regular sick line to state someone has SN, is a load of nonsense, if you ask me). Ironically the same surgery had previously supplied sick lines for her benefits, when she was living with her father's girlfriend (That's a thread in itself), yet no one can tell me how! Ffs!