To say I don't want to see this neurologist anymore

[spidermomma]

Ok so long story short this all happened in the last 4 weeks (been diagnosed)

Ds has a terminal illness this doctor suspected at the beginning of 2020, he ran tests specifically for this and we did them and he had the results back 6 weeks later saying the test wasn't carried out as the samples failed etc
He admitted he had a strong feeling about the diagnosis we just got - from a different hospital via my other child with the terminal illness also) but he couldn't do much as I wasn't due a review until 2021 - year review and he had no capacity to see me. Not even call me back or email me back after I tried for months and months on a weekly basis and we have proof of this. He even ignored other consultants and neurologists trying to contact him on my behalf as a mother going out of her mind.
He rang last week after I had my diagnosis and just totally defended himself as I told my nurse I was writing a formal complaint about him (she must of said this to him or someone as it's clearly got back to him) because if he strongly suspected this diagnosis of my son we could of been into treatment 8 months ago and saved ALOT of his mobility and he knows this. He just kept saying he did all he could and he was sorry and their was nothing else he could of done better. But like I said if my dd didn't fall ill and get diagnosed at a different hospital we stil wouldn't have answers from him or know of this diagnosis of my ds

I won't lie I got really pissed off with hearing him on the phone defend himself for 30mins straight and then he tried to end the call as our yearly checkup. I told him to pretty much stick his concerns were the sun don't shine he should of done this 6 weeks after our first appointment when he had the results in his hand and these strong concerns but yet has ignored me ever since. Even my nurse has said he's ignored me because I was trying to reduce a specific medication for a few months and couldn't without his say so, eventually they got fed up of waiting and we just did it.

Anyway his secretary just rang and asked if I would have a face to face meeting with him next week and I said no I don't wish to deal with him no more he's caused me enough damage and hurt and seeing him is wasting valuable time and isn't going to help me as I'm in no right mind to see a man who left my son terminally ill for 8 months that he strongly suspected he had- without treatment that could have slowed it down by 90%! So in that 8 months he can now barely walk when I told him he was struggling at the first appointment

For some reason I just think he's now contacting me and trying to see me so urgently to cover his own ass as he's been so negligent towards me and my children when Iv tried so hard to contact him and get answers as I knew something wasn't right

AIBU to tell him where to go and not see him again?

Sorry for the essay !

I also havnt told my oh about this as he said I shouldn't of been so shitty last time with him and thinks I'm always in the wrong.
I'm a broken mum right now. He could of helped and he didn't. I see him as a big problem and I can't talk to my oh about this.

I think he’s worried you are going to complain to the GMC.

I’m so sorry about your children.

@Egghead68 what's the gmc ? I do think he's worried though as last week he was still ignoring me now a phone call for 30mins and his secretary ringing to get a face to face appointment in 5 days time. Pretty quick change isn't it

Xx

The GMC is the General Medical Council.

OP, I just wanted to say I am so, so sorry x

So sorry for you.

Just to clarify was the test carried out or not last year?

Yes, I think he's worried a formal complaint will be made which you are in your rights to do. Could you swap treatment to the other hospital?

YANBU if you want to tell him to buzz off. It sounds like you and your son have been treated appallingly. Sorry for what your family is going through. :(
GMC is the UK General Medical Council, it’s where you can raise a complaint if you have a concern over a dr in the Uk

What a dreadful dreadful man. OP I am so sorry for what you are going through. Please do not give this man any more thought for now and do not meet with him. You are right to think that he is trying to do damage control. He really doesn't care. Document somewhere every detail of your encounter with him so that in future when you do put in a formal complaint against him, you won't forget any important bits but after doing this, forget about him because you really don't need the anger and stress, and just focus all your emotions and energy into giving your children all the attention, support, love and care they need during this difficult time.

Yanbu to,want choice over which consultant provides care.

However if your son has such a risk are you able to get an appointment with another neurologist to get help ASAP?

Would that be more possible by sucking up seeing him face to face to get referrals in your sons best interests?

What happens if you don't take the appointment? What can be offered to your son as an alternative in the same timescale?

Sorry may have misunderstood. Has the care already been transferred to the same neurologist your daughter sees?

If so then yeah make the complaint now and don't wait until after you've got what you need from him!

I'm so sorry what's happened, it's unforgivable . Please note everything and send it in to PALS (Patient Advice and Liaison) at the hospital too.

This is awful. You definitely should complain. I am sorry for your children.

@itsgettingweird my son has started treatment at a new hospital and a new neurologist and a new team as soon as this got confirmed

The test for the disease they have got carried out at beginning of 2020- 6 weeks later he had the results to say it didn't get done as something went wrong (April) he didn't contact me or get back to me to say this when I was contacting him over the results and other things to do with medication and referrals in regards to my sons walking at the time- he said he was going to mention it at my next follow up appointment with him early 2021

I got my daughters diagnosis at the very end of last year then that hospital carried out my sons also and I had the results within 2 days. Otherwise If my dd didn't fall ill. I'd still have no answers from this man over my son so he would only get worse

I have started to write my complaint to the hospital he works at as I didn't know their was anyone else but they will ALL be getting a Avery strong letter from myself about this man and I will be getting the people who have tried to support me and contact him also to write one for me to send with mine (their happy to do this as some aren't nhs their private)
He won't get nothing from me. As I said he isn't anything anymore I'm sending this letter to get my anger out and make them aware of how we've been treated as I wouldn't wish this on anyone then that's is il close my book on that part and look forward to our new book with our new team that so far seem amazing
Thank you all for your kind words. Means so much at this moment in time x

I would ask his secretary to ask what the meeting is regarding as none of the family are currently under his care.

I don't have anything constructive to add but just wanted to say how sorry I am you are going through this. Hoping you're getting the emotional support you need and deserve.

I thought Id misunderstood () but pleased you got the right care.

Sending a virtual hand hold. My ds has a degenerative neurological condition so I empathise those feelings of waiting and despair.

I’m so sorry you’ve been treated this poorly by such an unhelpful doctor, and I’m glad you are going to complain.

Yanbu. Have nothing more to do with him except to tell him to get lost and do complain. Sorry for your children and all you have been through.

I'm so sorry.

Lots of love to you and your beautiful children xxx

Thank you all. Didn't know where to turn as my oh just seems to give me more shit lately for having an opinion specially if it's a shit one towards someone xx

www.gmc-uk.org/concerns/raise-a-concern

Thinking of you. Are you getting any support for yourself? Maybe there is a charity for your children‘a condition that might provide support for parents?

Sounds like a palling care. I have no easy answers, but I just wanted to say I am so sorry to hear of your children. I can’t imagine what you are going through. 💐

PALS at the hospital is your friend I'm so sorry that you and your children are so badly supported by medical professionals and it would seem your OH.

There's a lot for anyone to process can you get support from a counsellor. It's often very challenging to be everyone else's support network and yet no one is yours that's what I'm hearing in your post.

There are charities and organisations that can help you with support not just for your children but for you too. This isn't a situation that can be best handled alone too many moving parts and too many people to handle. Too much practical day to day things to take care of.

Sending you a virtual warm hug and a cup of tea ☕️

@freeingNora it really feels that way atm. When oh has his meltdowns he says all kinds of silly things and I just support him but when Iv had 1 in the past he just went mad when I said silly things like he did.
Genuinely think this is going to break us I can't handle much more. He wasn't great before this and I was planning on leaving in the new year once I had saved some money..... feel so bad if I left now though and I do need his help it would be so hard for me to do alone.

Il get their in the end and I will try get some support for myself as I do need it. Everyone asks if I'm okay and iv always been strong but inside I'm dieing.
I am in contact with a charity for their condition to x

Thank you all for your kind words xx