So angry no one cares

[respectrager]

My son was finally diagnosed with a condition, but the signs were there 18 months ago and the doctors didn’t do the tests they should have. I can’t stop thinking about how much he’s suffered during that time, and there is a possibility of long term effects due to the delay. I'm so angry but my husband thinks it will all be fine. My mother couldn't be less interested either. Just feel done with all of them.

More information needed… diagnosis, symptoms, what long term effects

That’s awful, I’m so sorry. I would feel exactly the same 💐

Sorry to hear this OP but I agree with @Enrichetta regarding a bit more information needed?

Hashimotos and delayed puberty. Now only just started puberty at 16 years. Has had years of problems in school and didn't achive any GCSEs due to fatigue. Has gained so much weight and this is unlikely to resolve now even with treatment. Long term effects on his health because of this. Could also cause him fertility issues. Been taking him to GP for 2 years for delayed puberty and thyroid tests. All ignored. Now took him back again had to list the tests I wanted. Now showing thyroid worse, and puberty very delayed.

Sorry, but without details, nobody can possibly say. Maybe the tests were invasive, or have a lot of false positives, or false negatives, or are incredibly expensive for a statistically unlikely condition. The doctors may have justifiable reasons for not testing. Or they were completely negligent and should be struck off. There's no way any of us can know.

Edit: Sorry, cross-posted.

Nice guidlines say delayed puberty and his TSH levels last year should have been referred !😡

I'm so sorry. The nhs is completely unfit for purpose.

So sorry, OP. Keep fighting for justice for your boy 💙

Not being angry doesn't mean someone doesn't care. I'd probably be the same as your DH. What's done is done and the focus needs to be on improving your DCs future with optimism rather than being angry about the past.

So sorry, my son also had a misdiagnosis & a missed diagnosis which nearly killed him.
I kicked off, I wrote to NHS England and the doctors who misdiagnosed him explaining what happened. They all had to be retrained in ds disease.
I also keep a close eye on the local group for ds disease and so far it hasn’t happened again to any other kids so it was worth it.

Kick off, ask why they failed to refer him. Write to nhs england. They should know about the doctors who failed your child.

I get it, I've been told for nearly two years that my symptoms were just tiredness that's what mum life being 40 is (!) , to take vitamins and get more sleep. I've got a heart condition. It took me being admitted to a and e for anyone to actually take me seriously.
Follow the complaints procedure.

What awful & upsetting position for you to be in.
Can you make some sort of complaint? I realise it won’t change anything for your child or you, but there may have been other mistakes made by that GP/practice before? And could help future patients?

So sorry to hear this, but doesn’t surprise me. My cancer was put down as IBS and I was left a prescription for buscopan!

Would a complaint to PALS be helpful?

Ask yourself what you want to achieve with the anger. An apology? A change in guidelines? A different response from your husband and mother?

Anger for the sake of it is draining and has no value. Either direct it or drop it.

This is awful. I hope that you are recovering.

Yes, I am going to get a record of all the appointments and make a complaint. Hopefully this will ensure they start treatment and don't delay anymore, as well as making sure it doesn't happen again to someone else.

I'm using the energy from the anger to push for prompt treatment and to ensure no more delays.

If you have the energy, I would bring a claim against the GP(?) who failed to follow guidelines and refer your son for further tests. Will he need additional care/medication/treatment because of the delay? Even more reason to bring a claim. But if you don't have the energy, I understand and wouldn't blame you for just trying to carry on as best you can.

Several GPs missed the links of his TSH levels and we frequently went back about concerns about puberty but was told he has a deep voice and the GP did not follow with tests. Even after last TSH level of 10.3 which needs treatment, I had to go back and requets hormone testing and antibodies. The hormone testing shows he is only just in tanner 2 at 16.5 years

I meant to say, I will be making a claim if he is left with any long term conditions because of the delay.

I hear you. Took us ages to get DS diagnosed with diabetes despite a raised Hba1c and finger pricks of 17. Hospital told the GP that had referred him that was normal 🙄 Luckily the GP argued back and we got him diagnosed before he became really poorly. Make a formal complaint, it’s not good enough how little parents are listened to sometimes.