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'm so sorry for you. Patients have the right to request to be moved under another consultant/team or even hospital, absolutely

OP, I'm so sorry. There is no doubt your child has been neglected if his condition was suspected but not followed up and this could have improved his prognosis.

I wish you strength x

Your priority is to get him under the care of another neurologist, can you Google who are the experts in this area?

Or if you reveal the condition the hive mind of Mumsnet may know.

This is your priority of course as swift action could still improve your son's situation.

But I would actually speak to a medical negligence lawyer as I think you need professional advice as to what to do next.

@Noconceptofnormal we are under a new team and we are getting treatment now so the swift change resulted in a 1 week turn around too get treatment. Il fight to the end of the earth for these babies and everyone knows that. He suggested a treatment but nhs wait was 18months +. I got him the treatment in less then a month of it been suggested whilst we waited for them results. I can't sit back waiting and knowing their is ways to help my kids. I want it now no matter how hard it is. Il find a way !

Someone has mentioned a lawyer and I think this is why he could possibly be trying to contact me also to cover his ass again as I have it in black and white and at first I was told he didn't do it until I found it on my follow up letters.... this made me happy as everyone was saying he didn't. I knew he did, don't doubt me I know what I'm talking about?? That really annoyed me. I just want him to accept his fault instead of telling me he did all he could, he would have redone it in the future and we need get the the bottom of my problem. I did turn around an say your the bloody problem by not doing tour job ! 🤬

I think in your situation I would try and make some detailed notes about the phone call etc., but then just ignore it all for a few weeks. Focus on yourself, and your children. As you can see, even now that you have a diagnosis, he's more interested in saving himself than asking how you are managing, giving you got the original notes / any advice etc. etc.. your time is far more precious than him at the moment, and you don't want the coming months to end up being about him, rather than your son.

Whatever you decide to do, your children are so lucky to have such a strong and vocal mum, fighting for them.

OP you need to contact PALs as others have said

Thank you all. My kids are all that matter, I am a strong believer in karma and he will get it one day. Xx

Make your complaint. Then please get some support for yourself. Prioritize it. You have a cruel, hard road to walk and no one on the planet could walk it alone.

I cannot really follow your post as it is coming across to me as very confusing. However, I will say that the GMC are unlikely to handle a complaint unless you have been through the hospital procedures first, and that, if I was you, I would meet with the neurologist and see what they have to say, as well as putting in a written request for copies of your son's medical records and discussing it with PALS. This will all make a GMC Complaint much stronger.

Ultimately, whilst the neurologist takes the samples it is not them that analyses them - they are done within a lab, my lab staff / pathologists.

Your timings hit with the pandemic, and whilst I would still make a complaint because this is really serious (or what I am understanding is really serious), it may not actually be that specific doctor's fault- it could have been that he was redeployed etc., so more the fault of the hospital.

I don't understand why there would only be an annual check up for a neurological condition that deteriorates 90% within a year - I have a degenerative neurological condition and I am seen every six weeks to three months, now six months (due to the pandemic) with two scans within a year and regularly blood tests. It seems odd a doctor would consider such a degenerative condition as high suspected but not see a child for a year - maybe ask this too?

Good luck and all the best for your son.

@WoolyMamamoth we had a 30 min conversation discussing this last week with the neurologist over the phone. This was only done once everyone was aware of myself making a complaint so it obviously got back to him. Throughout the year I have contacted him countless times and had no response from him and his secretary once passed a message on were he told me to speak to someone else about it"

Your right he doesn't analyse the results but he knew 6 weeks after the test was done it did not get carried out as the date in the letter he received was 6 weeks after the test and he did nothing about it even with his high concerns for my son and the suspicion of his condition/ that has turned out to be the case

I have all of my sons medical records and I keep all of my letters and follow up letters all in a big folder I have everything and I will follow the correct procedure to file a complaint about this waste of space.

Right now the letter will be sent to pals at the hospital and hopefully they sort it without myself having to take it further. He isn't my main concern the letter is nearly finished and sent then that chapter of our lives is done with.

@WoolyMamamoth also I said this about seeing us as it should of been a 6monthe check up or phone call atLeast and I didn't get this from him at the time he was completely ignoring me. He then answered it to say he didn't have enough compacity to see me
I went to the hospital once with my daughter for an eeg test. He walked straight past me whilst I was in the waiting room just nattering away and went and sat in a room. He didn't look busy at all so he could of easily seen me as capacity wasn't high at all it was important appointments only and all routine ones got extended. Plus it doesn't hurt to send an email or a phone call and say look we need re do these blood tests il order then you just pop in.

OK apologies, I am not sure what your AIBU is about if the letter is almost ready to go to PALS.

Good luck and all the best to your children (and you).

I can hardly imagine how you must be feeling with 2 children so ill. I'm wondering is it muscular dystrophy? (You don't have to say of course) You have every right to be angry.

I would say don't go to the appt. It will be him trying to explain himself but doesn't seem as though anything he says could help.

Do go through the formal complaints process. Don't go straight to the GMC as they will send it back. Write your letter to PALS at the hospital. They will do a formal investigation and if you aren't satisfied with that you can take it higher.

Whilst you could contact a solicitor have a think about what you want the outcome to be. Proving medical negligence is very hard and compensation not usually forthcoming. A court case would add a lot to your stress which must be huge already. If you mainly want the person to change their ways, apologise and not do this again then the PALs route is probably most effective.

@spidermomma I would not include the nattering away bit in the letter (just in case you have), it could have been a teaching session etc.

I would ask why the blood tests were not repeated straight away - as you say that is just a case of a form being filled in and you popping in when it's convenient (or at a certain time of the day depending what the test is for).

It's not unusual for doctors not to communicate directly with patients via e-mail or phone without appointment (at least in the UK) without appointments, however, given how crucial this all was, an appointment should have been made, or rebooked bloods and follow up within two weeks.

Sorry I haven't ready the whole thread yet... Before making the complaint, I would ask for a full copy of his file. May need to be a formal data request. Check with the hospital (website may say). Obviously as the dr is clearly concerned of a complaint records may have already been tweaked.

Obviously as the dr is clearly concerned of a complaint records may have already been tweaked.

If this has happened it will be obvious - there is a record of everyone who accesses and every change made to medical records if electronic, and paper copies of records will have been filed a long time ago - again access requests outside of a clinic appointment will have been noted, so please don't worry about this OP.

He is arse covering. If he has nothing to hide, then he won't be worried by a complaint. I second the advice to talk to a solicitor.

I'm so very sorry about your children. I simply can't imagine how you cope

If you go to the meeting, don't go alone. Any third party to witness would be good but even better if it is a hospital complaints person or a solicitor you bring with you. He's already shown himself not to be trustworthy. He may well exploit you being under so much pressure at this time. Be careful. If you can't deal with it now, put it on hold, you don't have to do anything immediately but postpone to a later date.

Incidentally, when I was seeking a face to face meeting with hospital staff for poor care, PALS were too busy but referred me to formal hospital complaints team, which have to respond to you within a certain time frame, and we had a meeting with them present, which was recorded as well. I'd recommend that if/when you are ready to do that. Not many people are aware of this option, I certainly wasn't until PALS put me in touch with the formal complaints team.

@okokok000 I assume this but I do have 90% in my folder and I have original copy's from my nurses that they have sent over

I don't think I'm going to try get medical negligence as i cannot be bothered it isn't going to give me more time with t my kids. I want to complain. Make people aware of how we've been treated and leave it at that really.
They have a condition that only gives them a few years to live

But exactly @WoolyMamamoth it wouldn't of taken more then 10mins to call and say this is the case an re book bloods. He knew how seriously it could be if his suspicions were correct. And they are but if he did his job and did this I could of been 8month into treatment and slowed things down for my son. It progresses so quick it's shocking.

He isn't worth me keep thinking about now so thank you all for your advice and nice comments. I'm sending the letter to pals and hopefully that will be all. Just glad you agree I shouldn't see him as my oh wasn't as supportive but i don't want to waste my time to see him when he's only doing it to make himself feel better !
My baby's are the main focus now and making memories ❤️

@spidermomma I'm so sorry that you're facing this situation. Aside from anything else, I just wanted to check that you know about Disability Living Allowance? Also, if money is tight, Family Fund give small grants for equipment/furniture and Cerebra do, too. It's obviously not going to make the outcome any different, but it might help to provide what they need.

I will get a third party to check my letter though!
Thank you all so much
But please don't be sorry. I am lucky to be able to have my baby's with me right now and have cuddles and have them draw all over my walls still haha and make these memories not many people get that chance to make and it will be hard yes more definitely and the road ahead won't get easier but we have to be positive and be strong for the children. We're here for the now not the future so we cross every bad bridge when we get to it. Not now whilst their not at our feet just yet
I'm so so lucky to be blessed with these amazing little people ❤️❤️
But thank you all again xx

@Lougle I have just applied for dla as they rejected my claim early in the year as I didn't have this diagnosis! The hospital have put me in for extra help for me so it could possibly be this but they are taking care of it thankfully. Take some pressure off. ❤️

@spidermomma hi op. Totally understand. I have been in a similar position and my very close relative died. I don't have the energy to fight it like you said it wouldn't have changed anything for us. Really sorry you're going through this. Best of luck to you.

spidermomma I’m so very sorry you are going through this. I’ve been in a sort of similar position though it didn’t affect my DC. I did consult a lawyer who was amazing and did almost everything for me.

If you are no longer under the care of the first hospital I would park that for now. You have three years to file a complaint. You are busy with your situation, you don’t have the energy or headspace to be preparing for meetings which will be attended by very senior people and even lawyers who will appear king and sympathetic but are actually just covering themselves to reduce the risk of a claim.

Keep all records. Focus on getting the best for your DC. Do consider getting a legal view on this. Sick DC mean additional costs. Time away from work, travel, home renovations, specialist and expensive equipment, extra help, and so much more. They may be able to help you achieve this.

PM me if you’d like a recommendation, do NOT use a firm advertising on tv. Law works very slowly indeed so don’t give it too much of your time just give them information as they need it.

Try very hard to convince your DH that you will work best in a team without bickering about all of this. Sending you very best wishes.

Also, it might be worth looking at EHCPs to meet their educational needs - you may already have done that. The special needs board here is very helpful and friendly.

I think a quick conversation with a medical negligence lawyer would be helpful, because you have a certain amount of time to bring a case against someone for medical negligence. You could do the bare minimum now, but still have the option to proceed in the future which would allow you to focus on your children now but also send some karma spinning towards him later on (it might become important to you in the future that he couldn't do this to another family, although that isn't your responsibility of course. Different things prove important at different times, and now is clearly not the time to put this front and centre)