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  • Ellie
    replied
    Originally posted by Claireflo View Post
    I plan to complain about her
    Absolutely do complain and remember that Bristol MND Clinic is funded by the MNDA.

    We know all too well that MND is an uncurable, progressive and fatal condition, which is why interventions to improve quality of life are of the utmost importance, be those interventions psychological, medicinal or physical, which is why treating people with such disdain whilst sitting in an Ivory Tower is utterly unforgivable.

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  • Claireflo
    replied
    It's easy to see why that's the case. She barely whispered the word MND at the first appointment "I think I can say the results are consistent with MND". We'd been told 3 weeks before that the EMG test wasn't really needed for diagnosis as it was clear that he had MND. She suggested he go away and think about riluzole and was surprised when he said he wanted to start it now. She told me my information needs were different to dad's and we needed to be led by Dad - she had no clue what my dad's information needs were as she'd only just met him and hadn't asked him.

    After leaving the feeding tube decision as late as possible we were told he couldn't go on the waiting list until dad had seen her - after 6 weeks delay, by which point dad was struggling to eat and losing weight, she asked "have you thought about any alternative ways of eating?" I wanted to ask if she was suggesting he put the food in his ears but managed to restrain myself! By the time he had the op the first doctor couldn't fit the tube as his stomach was high up near his chest, thankfully a second doctor managed to fit it.

    Whilst I've seen some worse horror stories about care others are receiving I plan to complain about her, when I can get the time and energy in between working full time and juggling various medical appointments/calls/emails etc for Dad. It shouldn't be this hard to get the care needed. Thankfully the community team have been great but appear to have done pretty much all they can in respect of the bulbar symptoms.

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  • Ellie
    replied
    Originally posted by Claireflo View Post
    Sadly she's apparently the top MND consultant in Bristol.
    Oh her... 😬 She has a terrible reputation on this forum, I'm sorry to say 😑

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  • Claireflo
    replied
    Thanks Ellie, another of her sayings is that "we treat patients not numbers". I used to come away feeling like a rubbish daughter pushing for something he doesn't need when all I want is the best possible care for him. Sadly she's apparently the top MND consultant in Bristol.
    Thankfully with the physio getting involved he's now being reviewed by a separate respiratory consultant. To be honest he's struggling so much with the mucus he can't cope with the thought of anything else medical at the moment. I'm not sure if the mucus issue will affect how he gets on with the NIV if/when he decides to try it.

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  • Ellie
    replied
    Originally posted by Claireflo View Post
    ​​​​​Dad was still not having headaches or confusion when waking which is what the consultant said would indicate monitoring was needed
    It makes me both sad and mad when I hear things like this, Claire - monitoring respiratory function should be an integral part of your dad's ongoing care, similarly swallow and physical assessments.

    Respiratory failure can start much, much earlier than this symptom which, in itself, is not a universal symptom... (I never exhibited classic physical CO2 retention symptoms but my blood gases said I was: numbers don't lie 😏)

    Is there any hope of bypassing the Neurologist and your dad getting a referral directly to a Respiratory Consultant? I gather he doesn't attend an MND Clinic - might that be an option? xx

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  • Claireflo
    replied
    Originally posted by Ellie View Post

    NIV isn't just for when you're struggling, it's best started early, before you have any obvious signs of breathlessness or trouble getting good quality sleep.
    I wish my Dad's consultant was reading this as she has patronised me each time I've raised monitoring of Dad's breathing by saying "we treat the patient and their symptoms rather than doing tests for the sake of it".

    I read the MNDA guidance about regular monitoring and asked about it at the second consultant appointment to be told the above. The physio ended up writing to the consultant to ask for the overnight monitor and all we were told of the results was that it was good. I asked again 4 months later as we could tell his breathing was declining and got the same response. 4 months later with no consultant appointment in sight the physio asked for a referral to the sleep/NIV clinic as he was concerned, along with the hospital as Dad ended up in A&E (due to the mucus issue). The referral was made and the ear lobe blood test showed raised levels of bicarbonate in the kidney and they said they arrange overnight monitoring and would likely recommend NIV.

    ​​​​​Dad was still not having headaches or confusion when waking which is what the consultant said would indicate monitoring was needed, if other medical people hadn't asked for the referral I expect I would have got the same response as I'd had before.

    At our last appointment she didn't mention his breathing despite having had a letter 10 days before from the sleep/NIV clinic. When I showed her dad's copy she just said his kidneys were OK.

    Sadly the consultant appointments seem to be pointless, other than an opportunity for me to be patronised despite having driven a 4 hr round trip in the hope of gaining some value from the appointment.

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  • WheelsOfSteel
    replied
    Originally posted by Ellie View Post
    NIV isn't just for when you're struggling, it's best started early, before you have any obvious signs of breathlessness or trouble getting good quality sleep.
    please don't fear NIV, it's not the enemy πŸ˜‰πŸ˜˜
    Wise words as ever - thanks for the advice and encouragement Ellie

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  • Hope
    replied
    Ellie thank you for your wise words. I will bear them in mind, I have a respiratory appointment soon. x

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  • Ellie
    replied
    Originally posted by WheelsOfSteel View Post
    I am still breathing on my own
    That's the thing though Eddie and, well, all nearly-newbies, NIV isn't just for when you're struggling, it's best started early, before you have any obvious signs of breathlessness or trouble getting good quality sleep.

    That's why pulmonary function testing and/or overnight pulse oximetry tests are so important - I was in respiratory failure with no obvious physical signs, but the tests proved otherwise.

    If you do decide to use NIV, remember that it's a support for your respiratory muscles, cuts down on the amount of hard labour they need to do and increasing their effectiveness at maximising O2 and minimising CO2 in the blood.

    I fear that too many people put off starting to use NIV because they think it's the start of the end when, in fact, those extra months of use could well have the opposite effect - please don't fear NIV, it's not the enemy πŸ˜‰πŸ˜˜

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  • WheelsOfSteel
    replied
    Hiya folks
    Just to let you know I am reading all of this as valuable advice for the future.
    I am still breathing on my own, but I can feel the limited lung capacity starting to kick in - so it's only a matter of time until NIV.
    It was mentioned at my last (and indeed first) respiratory consultation a couple of weeks ago, and I should be seen by them again in 2 months.

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  • Ellie
    replied
    Originally posted by MMG View Post
    My husband had 2 issued last year. Doesnt yet use them as breathing still OK - fortunately
    I'm very sorry for being so blunt but... was it the hospital who said that your husband's breathing is OK or does he feel it's OK? (just wondering why he was given NIV, presumambly preprogrammed) xx

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  • TinyLady
    replied
    Doug Carpenter - thank you for your detailed post. I am learning so much from all of you. Whilst I don't need NIV yet, I feel so much more confident of what to expect and ask for as a result of this type of post. Really appreciated x

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  • MMG
    replied
    Originally posted by Sarahw View Post
    I’m completely with you peterpan! Shocked by how much I need it now. What a good idea to have 2 machines!! I’ll get on to my hospital. Good luck! X
    We were advised that it is NICE guidance to issue 2 at the outset. My husband had 2 issued last year. Doesnt yet use them as breathing still OK - fortunately

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  • PeterPan
    replied
    Originally posted by Ellie View Post
    Something to consider maybe, it's a shame if a mask inhibits your speech. xx
    There is only one person in the world who understands my speech now and we do
    have lots of laughs (and frustrations!) so not really a big issue πŸ˜€

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  • Ellie
    replied
    Originally posted by PeterPan View Post
    I did try that in hospital but my mouth kept getting blown open !
    You may not need as high an IPAP with the nasal mask and/or for daytime use, i.e., when you're not supine.

    I have two different NIV settings, a day one and a night one.

    Something to consider maybe, it's a shame if a mask inhibits your speech. xx

    Leave a comment:

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