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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Aibu to want them to explain why it happened like it did? *sensitive post about death*

24 replies

Likeindie · 09/05/2018 11:54

Hello everybody,
After 18months/2 years of taking my mil backwards and forwards to the docs with a condition that was deteriorating,a six week hospital stay last summer. We never found out what was going on.
Two weeks ago she was admitted to hospital because she couldn’t stop choking, this had been a problem before and after a quick visit from the gp was diagnosed as having panic attacks.
Finally with this hospital admission tests were done and she was diagnosed with Motor Neurone Disease.
She died 12 days later.
It has been the most traumatic 2 weeks of our lives. Would I be wrong to ask why did it take so long to find out what was wrong with her. Looking back her symptoms were definitely there without a doubt. I have read on the motor Neurone Disease Association website that it is a life limiting condition I know that, usually a person survives between 3-5 years after diagnosis.
We got 12 days, why?
Would I be wrong to ask the health care professionals why did it take so long.
I feel they let her down.

OP posts:
Original poster
Likeindie · 09/05/2018 12:06

Oh she wasn’t choking, she was aspirating.

OP posts:
mumonashoestring · 09/05/2018 12:09

YANBU, if this was mostly being handled via the GP surgery you should get in touch with the practise manager and ask that the case be reviewed.

KurriKurri · 09/05/2018 12:11

No not unreasonable at all - I think her family are entitled to a full explanation of why she died when she did. It sounds as if she should have been diagnosed much earlier and that there have been mistakes made.

Do whatever you need to do to give you peace of mind - I imagine the thoughts going through your head at the moment are to do with whether anything could have been done to extend her life if she'd been diagnosed earlier.

What a dreadful shock for all of you, I'm so sorry for your loss Flowers

FadedRed · 09/05/2018 12:13

Sorry for your loss Flowers
Absolutely reasonable to want an explanation as to what happened.
You could start by contacting PALS or the Consultants secretary and asking for a meeting to discuss what happened in hospital. Also the Practice Manager at the GP practice to discuss with the previous time up to the final hospital admission.
Write a list of the questions you want answers to before you speak to them, it will help you to remember and get the information you need in such an emotional time for you all.
When you have more information, you may need to take advice if you feel that there are issues for complaint.
MND and similar neurological conditions can be difficult to diagnose, people do have varying symptoms and very different prognoses. I had a relative with MS who sadly died within a few weeks of diagnosis and friend who has had the condition for nearly thirty years and is mildly disabled, so people are very different.

MyOtherUsernameisaPun · 09/05/2018 12:14

YANBU and I'm so sorry for your loss Flowers

When lots of people make mistakes that prevent a diagnosis, as happened in this situation, it's a sign that something is wrong with the system. I think you are entitled to question why and how, in the hope that they will make changes to ensure it doesn't happen again.

It won't bring your MIL back but it might comfort you to know that even though what happened was awful, a positive change came from it.

I'm thinking of you and wishing you all the best going forward.

Osopolar · 09/05/2018 12:15

Absolutely ask for a review. I deal with NHS complaints and it is very normal for grieving families to ask for a review and it can give huge relief or at least understanding.

SD1978 · 09/05/2018 12:17

The MND was a contributing factor, but the poor swallow; aspirating, and subsequent issues from that is the cause of death. An earlier diagnosis would have meant that she was regularly assessed and probably advised a soft diet, with some thickened fluids. It’s mote than reasonable to ask why her symptoms weren’t picked up earlier1 did she ever have any CT or MRI’s offered? I am very sorry for your loss, and it would be reasonable to question why there was not previously a diagnosis made, with multiple GP trips and an extended hospital stay. Both probably would do their own investigation, which may not highlight properly where the fault was. Again I’m sorry for your loss, and hope you manage to find some answers which will help your grieving. MND is a truly shitty disease

DontCallMeCharlotte · 09/05/2018 12:24

First, I'm really sorry for your loss and the terrible shock it must have been for you.

As hard as it has been for you and your family, even with an earlier diagnosis, sadly there would have been nothing the doctors could have done in terms of improving her condition and, having known three people who have succumbed to the horror that is MND, I might look back on it only being 12 days as a blessing in disguise. Flowers

ScribblyGum · 09/05/2018 12:29

I am so sorry for your loss Likeindie Flowers How very shocking and traumatic for you all that must have been. Your poor mil.

You absolutely are entitled to have a conversation and explanation from both your mil's GP and the hospital team that managed her care. Her consultant should be able to explain why a diagnosis was missed during her admission last summer.

I'm an AHP and my experience of working with people with MND is that their symptoms and progression of their disease do all vary. There are four different types of MND and reading between the lines of your OP I wonder if your mil was initially suffering with speech and swallowing symptoms and other symptoms which might have raised red flags in the minds' of her treating physicians were absent, or very mild. That does not make it any easier for you though. Talking with her doctors might shed some light on why her diagnosis came so late.
Again my deepest condolences to you, MND is an absolutely hateful disease.

Cupcakey · 09/05/2018 12:31

So sorry for your loss. Ask the questions you definitely need answers. xxx

Angrybird345 · 09/05/2018 12:34

Did she know whAt was going on and hide it from you, or did she ignore what was going on?

DianaPrincessOfThemyscira · 09/05/2018 12:37

So sorry.

YANBU to want more information. Take care of yourselves.

kateandme · 09/05/2018 12:48

would she have wanted you to take on any blame.
was there really anything else you could have done.i don't believe so hun.and I think you no that.ur hurting someone needs to be blamed but don't even think of turning that inwardly to yourself. its not your fault.you did not make her ill and many times you stepped up to look after her and seek medical advice.therefore no guilt should be yours.
feel the grief that's ok.that normal and needed.but don't blame or feel guilt on yourself.
if you want to take this forward do so.
get support.support eacohter.feel loved.
feel your love for her and remember her for all the wondwrful things she was don't hold on to how sick she became.that wasn't her.that was a nasty illness and one that took her too soon.im so sorry.
but she was so muh more than that wasn't she.beforehand. so keep her smile.the twinkles in her eyes or whatever golden bits in your mind.let them help you feel comforted.

TireSwing · 09/05/2018 12:48

I'm so sorry, OP. Thanks

YANBU - it does sound as though there should have been something built into the system to stop your MIL's diagnosis having been missed at so many opportunities.

GreenFingersWouldBeHandy · 09/05/2018 12:57

Sorry for your loss, it must have been an extremely stressful time for you all. FadedRed posted some useful practical advice about where to start. I would definitely follow this up, to give yourselves peace of mind that you've done all you can, and also to stop this happening to another family if something preventable was missed. Be kind to yourselves too. Flowers

StealthNinjaMum · 09/05/2018 13:00

Sorry for your loss. Flowers You definitely would not be unreasonable to find out why she wasn't diagnosed earlier.

Sugarpiehoneyeye · 09/05/2018 13:15

I'm so very sorry for your loss OP.🌹

IHeartMarmiteToast · 09/05/2018 13:32

I'm really sorry to hear this. It's a very distressing time for you all.

My father had MND and it was very unusual as his GP had already had one other patient in his career so sent him for tests immediately. My father only lived with MND for about 18 months in total also. The problem with MND is that it is so rare its very unusual for a GP to have more than one case in a single career and often the initial symptoms are so varied that people get sent to all sorts of different Specialists or physio etc etc. Also with MND onset to death can vary wildly. I've heard of cases taking only months and a colleagues father had it for 10 years.

However this does not excuse that this should have been picked up sooner. Especially with her hospital admission. Please do ask for answers as this can not only help to bring you peace of mind but also could help others in the same situation.

Original poster
Likeindie · 09/05/2018 14:37

Thanks,
The first doc visit about 18 months ago bad ankle and heavy leg, Gp sent us to a rapid clinic to be seen by a doc at hospital, the best we got from him was why do you need this 3 wheel walker and “ well likeindie mother in law you are a mystery to us”
She had a ct scan on her back summer of last year they said it showed arthritis, when we asked but why the loss of power in her leg and the jumpy nerves in her leg ( she called it a shaking Stevens leg)they said it was because she had a foot drop, but no investigations as to what was causing the footdrop, I mean no one seemed bothered about the legs I even joked with my mil and said to her do the doctors know that you have got a pair of legs.

The last 12 days certainly were not a blessing in disguise, more like a fucking evil nightmare. There was no time to do anything.
The consultant told us having looked back on her notes that it was probably slow progression MND. He did say that had she of had the diagnosis 12/18 months ago they may have given her the rizuole to try slow down the disease and give her more time. It wouldn’t of changed the prognosis. I told him I understand that but instead of us spending all our time trying to get her medically sorted we could have planned, talked and enjoyed the time we had left. We feel a bit robbed of that.

Instead we got MND diagnosis and sorry there is nothing more that we can do have you thought about hospice care.

OP posts:
ThatsNotMyToddler · 09/05/2018 14:56

I would definitely ask the questions OP. Doesn’t have to be a formal complaint but, as above, the consultant’s secretary or PALS are a good place to start for the hospital and the practice manager for the GP.
I’m a GP and epipd he heartbroken if this were my patient. I’m sure the practice will review everything that happened with your MIL anyway, for learning purposes - we certainly would, as a team. As pp said above MND is a rare bugger and can present in many different ways. And as GPS we see many weird and unexplainable things every day. Sometimes only hindsight is our friend. That doesn’t mean there’s nothing to learn here, though, and as I say we would definitely be reviewing the notes.
I’m so sorry for your loss. And also that your final time together was so awful Sad

ThatsNotMyToddler · 09/05/2018 14:57

would be heartbroken

Mammasmitten · 09/05/2018 14:57

That's awful Likeindie. I'm so sorry this happened to you and your family. Flowers

zara020 · 09/05/2018 15:04

Bless you. Sorry for your loss. my grandad died of MND in his 70s and had similar problems with swallowing and a loss of dexterity in his hands etc. It's a terrible disease for both the sufferer and the family so I'm very sorry for you.
It took a while for diagnosis as his symptoms appear to have been treated as separate issues and not woven together as they should have been. Consequently, he died about a month after he was diagnosed which came as a real shock as he was a fairly fit man in his 70s who still helped my dad out with his business up until about 3 months before he died.

As others have said, I think you are more than entitled to be told how your mil came to diagnosed late and what the hold may have been. X

ReggaetonLente · 09/05/2018 16:31

Similar happened to us with my dad, except he had cancer. I truly understand what you mean by traumatic, I would not wish what happened to my lovely dad on my worst enemy. It was like torture, one of the most horrible ways to go I can imagine, and like you I feel robbed of the peaceful death I wanted for him.

I am so sorry this happened to you and your family, it is just so difficult and horrible to cope with.

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