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Thread: So quick - anger, relief and regrets. (Bulbar)

  1. #1
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    So quick - anger, relief and regrets. (Bulbar)

    Good morning everybody,

    My mum died on Monday after a short battle with the bulbar type. I don't really know what I want from this but just feel better getting it all out. I've written this post a dozen times in my head but still do not know where to begin. I suppose at the beginning.

    Last October my wife and our 3 year old son returned from holiday to notice mums speech was slurred and that her swallowing had become a little uncomfortable (I thought she was drunk!). After struggling a few times with the GP we finally got a referral to the hospital where they found a cyst in my mums throat. This was removed a week before Christmas and we were told she could expect recovery within a month but she might lose her speech worse case scenario.

    It didn't get any better and yes Mum found it hard to speak moving into January. After a number of confusing appointments back with the surgeon they couldn't understand it and said they would refer mum to ENT but it could be some time before an appointment comes through.

    Early February it got worse, mum lost all speech and could not swallow anything solid at all. The GP sent her to the hospital where they kept her in for 10 days doing all sorts of scans. Although the care on the ward by the nursing staff was excellent the co-ordination between the doctors was shockingly poor, repeatedly sending her for the same scans, forgetting to insert the metal tube into her stomach for one of them so having to put her through it again. After 10 days they told us they thought it was neurological and would refer her to that department but for now she could go home with a letter and wait.

    We got home, opened the letter for it to read "likely bulbar onset motor neurone disease". I didn't know what it was, Mum knew David Niven died from it but not the ins and outs but we knew it was bad. Can you imagine the shock when reading online and the anger that none of the doctors had explained this. This is now mid-Feb. So we wait a week fully expecting a letter any day that never arrived so I ring the neurological department in Chesterfield who have no record of my mum and say she will just have to go to her GP and get a referral - can you believe it? My wife works for the NHS so taking her advice I contacted the sister on the ward where mum stayed who was excellent and got it sorted. An appointment was made for the following week which was the end of February.

    During this time we tried best we could to carry on as normal as we possibly could do with none of us wanting to accept that was the diagnosis and none of us really wanting to talk about it. A couple of days before the appointment mum tried to broach the subject with me (bear in mind she was writing everything down at this stage so it was hard) but I didn't really want to know.

    The Tuesday came and we went to see the doctor. This meeting was cold and not very detailed. The news was delivered to us very matter of fact which is fine but when we asked the all important question of "how long?" all the doctor could say was that they do not like to say. I tried to push but he wouldn't even give me an idea. The meeting finished, we were sent on our way back into a busy waiting room with no literature, no support, no nurses on hand just left to get our thing together in the waiting room and go home - is this normal and what the NHS would consider best practice? Poor mums been told she is dying and your sent on your way with no information just told to wait for a referral to speech and language and they would be in touch with the doctor assuming a 67 year old woman can use the internet to do her own research - she could by the way but that isn't the point.

    We went home and spoke about it for a few hours. I felt pulled from pillar to post with this and trying to balance the news and a 3 year old who is also on the asbergers spectrum as well as working full time. We found out that 6-18 months was the norm from diagnosis. In the back of my mind I knew this started back in October so we were already approaching the 6 month point but I do not blame the NHS for thinking it was the cyst - it was the obvious thing at the time.

    It got worse, fast. Mum left a note saying when it gets bad can she move in with me. We agreed of course. It got bad very quickly, she couldn't eat or drink. Speech and language came mid March and discussed a PEG which we asked them to arrange. Mum battled on but didn't move in. I asked her where she would like to visit before she passes and she said Chatsworth House and the historic plague village which she couldn't remember the name of but I later discovered it to be Eyam. We didn't get time.

    A week and half ago she complained of breathing difficulties and that her chest felt hollow. We called the emergency GP out who rang an ambulance. She went to hospital Sunday 26th March where she as diagnosed with pneumonia. Anti-biotics ensured she turned the corner. The Tuesday the hospital staff had arranged for the PEG to be fitted while she stay in hospital on the Friday. On the Thursday a senior doctor sat down with mum and explained the secretions would get worse if the Peg was fitted. Mum asked to die. After a long discussion with the doctors Mum instructed them not to treat her any longer (suction etc) from Monday. We tried to talk her out of it a million times but at the same time I could understand - quality of life was little and she was starting to lose strength in her neck and shoulders.

    A plan was made with the doctors where they would stop treating her but ensure she was comfortable on drugs, I assume morphine and they said she would not be in pain when it happened. Mum got her affairs in order and we spent the whole weekend together - it was sad. We said bye on Sunday night and made plans to see her Monday afternoon thinking it would take a couple of days.

    We text each other Monday morning, at 8.51 she text to say she had slept well, just had a wash and felt fine. I asked her to let me know what the doctors said when they came round. She said she would. Less than an hour later the hospital phoned and said get up here fast. When I arrived she had already died. Obviously it was sad but at the same time I was relieved her suffering was now over.

    The sister told me it was sudden and peaceful and that they gave her some drugs. I didn't believe her and can tell when people are lying to me. I didn't challenge her though as other family members were present and I wanted them to think that. The sister said she died at either 9.35 or 9.40 but she could not remember. So in less than 50 mins from feeling fine, no sign of a doctor at that point and she was dead. Clearly she choked to death with no drugs what so ever but I haven't mentioned it to family. I wouldn't be surprised if she was on her own too. I'm just starting to become very angry with this NHS. I just wish that consultant had given us an idea of time. Within a month of diagnosis she was dead, ridiculous. No time to do anything she wanted.

    I feel better for typing it up. Like I said at the beginning I didn't know what I even wanted out of this.

    Kind Regards,


    Steve.
    Last edited by steve84; 5th April 2017 at 17:34.

  2. #2
    Forum Member WendyWooG's Avatar
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    I am so sorry you have had to go through this with such poor support. I am just sending my thoughts and condolences.

    Wendy xx

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    Forum Member Barry52's Avatar
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    Hello Steve,

    Please accept my condolences for the loss of your mum. The rapid decline in her health must have been traumatic for her and your family.

    You pose many questions about the NHS and how they handled your mum's case. MND was unknown to me when diagnosed and some neurologists can be very matter of fact when giving the prognosis. Not all hospitals are set up to handle patients with MND and you mentioned Chesterfield as the location where your mum was admitted. I am surprised that she was not transferred to Sheffield where they have a department set up for MND care. At the very least the hospital should have set up a care at home plan which would involve an occupational therapist, speech and language therapist and dietitian.

    No one can answer the rate of decline as every person diagnosed with the disease responds differently and the medical people tend to use averages. I was told to go and sort my life and finances out as the prognosis was 2-5 years. I am 5 years in and lucky that my progression is slow but sadly your mum was the wrong side of the averages scale.

    I understand your frustration and anger over the poor care your mum received and I hope that you and the family grieve properly.

    Best wishes,
    Barry
    Life is a journey, not a destination.

  4. #4
    Forum Member Ellie's Avatar
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    I am sorry for your loss Steve and for the manner in which your mother was treated.

    Your mum, and the whole family, were badly let down by the NHS at numerous stages. It’s inexcusable.

    Thank you for posting your mum’s story Steve and heartfelt condolences to you.

    If you want to chat to somebody, MND Connect 0808 802 6262 are good listeners.

    Love Ellie.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  5. #5
    Forum Member Terry's Avatar
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    Hi Steve;

    That is so sad to read and to think that it could have been worse if your wife didn't work for the NHS.

    I do feel for all of you.

    Love Terry
    The forum is still the best sorce for friendship and information. TB

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    Thank you for the kind response. It helps a lot.

    Barry the doctor in Cfield was actually from the Hallamshire and visits Cfield a couple of days a week. He did want to refer her to Sheffield but we never got that far. Speech and language did manage to visit twice but again it was only a month from diagnosis to death. I hope the disease for you still progresses slowly and they make some breakthroughs in time.

    I am glad she is no longer in pain. I do feel a bit better today.

    I cannot help but think what might have caused it. Mum was very fit, walked a lot in her job before retiring a couple of years ago but I can't stop thinking about a fall she had in May walking to the shop where she broke her ankle in a pothole. It does make me wonder if the trauma of that was the trigger, who knows.

    I hope they make some progress with it soon and will look to do some charity work for research in the future.
    Last edited by steve84; 5th April 2017 at 14:38. Reason: Breach of community rule 6.6

  7. #7
    Forum Member Terry's Avatar
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    Hi Steve;

    I must say that you post was one of the longest free hand posts that I've read.

    Maybe the Mnda can use parts of it to highlight some of the faults and look at improving things for some in the future.

    Mnd seems to be more prominent in super fit people but I guess for many of us it's waiting in the background and something triggers it off. Maybe a bit like cancer, most people could get it but don't.

    It would be good if you are able to raise some monies in the future for research and there must be something soon coming out that is better than we have at the moment to slow it down.

    Although this does not help those that are not diagnosed to late.

    Hugs Terry

    PS:- what is "Breach of community rule 6.6"?
    The forum is still the best sorce for friendship and information. TB

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    Hello Steve. Firstly I must say how sorry I am to read about your Mum. When I was reading your story of the way you were handled at the time of diagnosis it took me back two years to when I was diagnosed by the same neurologist. Sadly not much has changed. We were dealt with in the same way. No help, no information, no nurse, no counselling. Nothing. I think its very disappointing that after all the work done on NICE guidelines etc that you and your mum were handled so badly. I must say that the care I have received at Sheffield has been terrific, but we will never forget that first day. MND has been particularly cruel in your case but your mum deserved more respect when diagnosed. Kind regards Philip

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    Quote Originally Posted by Terry View Post
    PS:- what is "Breach of community rule 6.6"?
    Terry, originally I mentioned the neurologists name so the admins removed it to an asterisk which I removed.

  10. #10
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    Quote Originally Posted by philipb View Post
    When I was reading your story of the way you were handled at the time of diagnosis it took me back two years to when I was diagnosed by the same neurologist. Sadly not much has changed. We were dealt with in the same way. No help, no information, no nurse, no counselling. Nothing. I think its very disappointing that after all the work done on NICE guidelines etc that you and your mum were handled so badly. I must say that the care I have received at Sheffield has been terrific, but we will never forget that first day. MND has been particularly cruel in your case but your mum deserved more respect when diagnosed. Kind regards Philip
    Hi Philip, it was honestly unbelievable. At the time I was just in shock I think at how it was handled. It was only that evening and the next day I began to get angry about it. It has made me particularly bitter towards the NHS that and the other problems we encountered.

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