Gp’s attitude towards disabled child .. WWYD?

[Glitterzzz]

Hi

On Friday I had to contact the gp for my son who had been complaining of pain in his ankle since Monday. He has Autism, learning difficulties and a high pain threshold ( he doesn’t feel pain easily )

The gp called and I explained that with him having high pain threshold and never complaining of pain it was really odd, I also mentioned he was Autistic and I had to keep him home that day so she agreed to see him at the surgery.

She needed to examine him so he laid down. She began moving his foot in different positions and asked him ‘ does this hurt ? Does that hurt ! What about now ... he quickly and quite obviously wasn’t able to keep up and just as I was about to interject she said ‘ oh come on! IM NOT A MIND READER ‘ !!

Without skipping a beat I said to her that excuse me this isn’t about you being a mind reader, your patient is Autistic with learning difficulties and has a high pain threshold so he’s finding it hard to answer / to know how.

She said oh sorry I didn’t know !! In a insincere way, I looked over to my sons notes on the computer screen and remembering I had told her this information before we came in I asked her how can you not know?

She got very flustered and began to show him some stretching exercises ... which he couldn’t do so I had to inform her that he has hyper mobility in his joints ( yep she didn’t know )

She did apologise to me one more time, when I said to her what she had said given my sons conditions was very offensive . My son is nearly 14, she didn’t look to apologise to him.

I can’t shake it off. Should I complain to the surgery ? I’m thankful I could advocate for my son today but makes me think about other people who might not have someone to advocate for them when being mistreated for their inability because of a disability

Yes complain
It's deserving of a complaint
I haven't had the guts to complain to mine and how rude one was to me

Absolutely you should complain. I’m sorry your son had that experience but so glad he had such an awesome mum to have his back. Definitely complain because he may have to see her alone in 5 years and you need to be sure that this doctor, and others like them, understand that this is an unacceptable way to treat any patient, especially someone they know is autistic, even more so a child with autism! So upset for your son and you. Hope you’re both ok

Yes complain I know my son would struggle to keep up with fast paced questions especially if some asks/says something different before he’s answered the first. He needs more time to process things.
She was rude with the mind reader comment autism or no autism! “I didn’t know” is no excuse either. She made an assumption that a patient could answer her questions and follow her examination technique. If that wasn’t happening the onus was on her to adjust how she was approaching things.

YADNBU! Can I just say though, well done for speaking out so impulsively. In those situations I would be full of self doubt and convince myself I’d misunderstood and then berate myself later! Your son is fortunate to have a mum like you.

I’m like a post office safe. Always on time delay.

Complain... there's research regarding poor quality of medical care in the LD population. It needs highlighting and changing.

A number of barriers are stopping people with a learning disability from getting good quality healthcare
These barriers include:
• a lack of accessible transport links
• patients not being identified as having a learning disability
• staff having little understanding about learning disability
• failure to recognise that a person with a learning disability is unwell
• failure to make a correct diagnosis
• anxiety or a lack of confidence for people with a learning disability
• lack of joint working from different care providers
• not enough involvement allowed from carers
• inadequate aftercare or follow-up care.
(Heslop et al. 2013; Tuffrey-Wijnes et al. 2013; Allerton and Emerson 2012).

I’m so sorry this happened op YANBU

Yes definitely complain. Your sons GP absolutely should know about his condition and her attitude was appalling.

I used to work with people with learning disabilities and I had gone to the GP with one of them.
The GP said to me in front of the person, "This is just like being a vet"
I was so shocked I didn't say anything.

Yes 100% complain.
I’m sorry you both had to go through that.
Well done to you for speaking up!

Yes, complain.
I have a close friend who is autistic. They have, at their GPs surgery:
Been told to sit down in the waiting room (overly bright, noisy and crowded) despite saying on many occasions that they get sensory overload from that environment.
Been told that 'because you're autistic you make more of a fuss' with regard to experience of chronic pain
Been shown a screen which the Gp scrolled through really quickly listing all their medication and asked if they knew what it was all for
Been prescribed one medication which reacts badly with another that they're on and had their concerns dismissed (subsequently had a bad spate of health as a result of this)
Been told that effectively they are imagining their pain is worse than anyone elses

Absolutely dreadful and thoroughly inexcusable.

Definitely complain. I hope your son is ok

Good for you for speaking up. Yes if I was you I would put a complaint in writing to the practice manager.

Complain. This is completely unacceptable (I have an autistic sibling and an autistic child)

I suggest you make a complaint and reference the papers @Tottington has posted. And think about what actions you would like them as a practice to take eg training on needs of patients with LDs, Autism etc and put it in your complaint.

Just saying "I'm not a mindreader" isn't going to get the best out of a neurotypical patient without learning difficulties at the best of times is it? It's bloody rude.

In my opinion, the LD of your son make what she said even worse, but it wasn’t acceptable to begin with.
I personally am neurotypical, usually a good conversationalist, etc BUT when I am in pain I find it incredibly difficult to describe what’s wrong, I find it hard to compare quickly ie is something more or less painful, - I find it very difficult when getting anaesthetic when they ask if you can feel it still because usually I can, (have some kind of high tolerance for anaesthetic!) and get very flustered because can feel things when they seem to expect me to be anaesthetised. Pain can cause stress in anybody and she has no right to make sarcastic/annoyed comments; she should be finding a different tact. It makes me angry for your son because I know how I’d feel in that situation and I’m not an autistic child. I’m glad he had you there but I would definitely complain.

Yes, complain. Strongly.

And, get ready for the inevitable 'stop slagging off GPs' shite in response to serious, genuine concerns.

My Dd has several co-morbid conditions ( all diagnosed by recognised NHS medical professionals) as well as autism.

As a young adult,

1. A NHS consultant told her there was absolutely nothing wrong with her and she should get off her backside and get a job.

2. A specialist physio told her that because she has autism, the pain she thinks she feels isn't pain, it's just "a different sensation" so she should ignore it.

3. I've also intervened in a medical exam for a suspected broken wrist when the speed of the movement the Dr. did and the questions asked were far too fast for her to process.

4. I've had a nurse insist DD must be seen on her own to the extent that DD was distraught because she likes me to be there to 'interpret' what she's being asked and she likes me to answer for her then tell her all about it at a pace she can understand when we've got home and she's relaxed enough to process it all. In that instance, DD was terrified and refused to be seen alone.

@Glitterzzz our GP surgery has a form to sign when vulnerable people are 16 to appoint someone as their 'go between' and advocate.
DD wanted to do that because she cannot speak well for herself, will nod and say yes to absolutely anything to get out of a room when someone's talking (which is dangerous for her) and can be selectively mute with anxiety.
That form means I can be her 'voice' for requesting anything, I can get results, discuss treatment options etc. and accompany her to every appointment IF she wants me to. So far, she has wanted me there every time but maybe one day she will have the confidence to go in alone.
It may be worthwhile seeing if your GP surgery has a similar system.

No idea why the voting shows 32% of 102 people feel YABU??? None of the nay-sayers are commenting though!

YADNBU! And well done for challenging the GP. So many things wrong here - but they should read their notes beforehand and know the basics. It's unacceptable to speak to any patient the way she did - how rude! And horrific to think a trained GP wouldn't have at least a vague awareness that many people, including those with autism and/or learning difficulties, might need a little time to process things and provide responses?

Please do complain. My DS sounds very like yours - he doesn't always feel pain and would find it hard to articulate how he felt. He also can't be rushed - he often says 'I want marmalade on my toast ....no I mean marmite'. The first thing he thinks is not usually the right one. If pushed he would say anything just to be off the hook.

It's also shocking she spoke to you and not your DS, he must have felt awful!