Respiratory failure

[Ellie]

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 😡

[Claireflo]

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.

[Ellie]

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.

[MMG]

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

The NIV is set at very low levels, they have just adjusted to provide a small increase in pressure as he couldn't feel any pressure when he tried it.

His overnight oximetry results, and latest blood gases test- both from hospital are still within normal range, so no need to use NIV at this stage, but they do advise beginning to trial its use to get used to it for when he does need it. He can't face it at this stage, but knows that he will "need" to at some point. He hasn't yet decided whether he will use it when advised to do so. He has quite strong feelings about it.

The NIV's were issued at first respiratory appointment post diagnosis as this is a NICE recommendation. I like the fact that they are there to provide him with choice when the time comes.

[PeterPan]

He hasn't yet decided whether he will use it when advised to do so

My experience is that you feel so awful, gasping for breath, that the decision to use NIV becomes quite easy to make.

I certainly won’t be able to stop using it without symptom management and sedation. My palliative care nurse is coming to see me tomorrow with the medical director of the hospice- to discuss how withdrawal will be managed when the time comes.

[shelly21]

PeterPan I was actually reading about the process re withdrawal. Its something I was avoiding and I still have not completed my choices/ care plan. But I have started now to read about it. I found good in on the 'my breathing mnd' site.

It must be a tough time for you and your family. I follow your blog and sorry re your having to give up your 2nd home (caravan).

But from reading information I now feel confident in explaining it to my loved ones.

Can I say thank you. By reading your post pushed me to learn. X

[Ellie]

My palliative care nurse is coming to see me tomorrow with the medical director of the hospice- to discuss how withdrawal will be managed when the time comes.

I've had that discussion Peter and found it truly empowering - I even asked the nurse to bring along a syringe driver to give me the complete picture.

IDK if Sue will sit in on the meeting, but I think it's fair to say that partners don't see it as a 'fact finding mission' in the way many of us do and, if she's there, it will be awfully tough on her... 😥💪 xx

[PeterPan]

IDK if Sue will sit in on the meeting, but I think it's fair to say that partners don't see it as a 'fact finding mission' in the way many of us do and, if she's there, it will be awfully tough on her... 😥💪 xx

Yes, Sue and I will be together for the meeting. It will be tough for her, but we’ve both thought long and hard about this and know that NIV withdrawal will need to happen at some time.

[Ellie]

I have been looking if there is any research done on different use of ADRT by people with mnd??

I'm sorry to ask, but can you explain what you mean? I don't really understand, thanks. xx

[MMG]

We have had some very harrowing discussions regarding ADRT with each other, the wider family, clinical staff and the hospice.

I am very much of the opinion that the more you know, the better you are prepared to make difficult decisions.

Early discussions centred around withdrawal of either NIV or nutrition and hydration (with or without a PEG). Awful as those conversations were, at a time when he was still mobile and could speak, eat and drink, it was what stopped him travelling to Switzerland because before those difficult conversations he thought it was the only option available.

Knowing that when the time comes he will have control over his end of life is what eased the significant emotional trauma that he was initially in.

In terms of me being included in those discussions, it is difficult and hard to hear, but no harder than hearing the diagnosis, but, we were advised that it is really important for me as next of kin to know what his wishes are, and I feel very blessed that I am trusted sufficiently by him to ensure that his wishes are carried out when he chooses.

Our sons are supportive and take the view that it is up to him, quality of life versus longevity is his choice. And only he can know when his quality of life is less than bearable.

Other family members have said that I should "make" him change his mind as he should fight on as long as possible. But, its not their opinion that matters and if I get grief from them then so be it.

I don't think that knowing his wishes is the hard bit, but I do think that being there beyond the decision actually being made will be unbearable. As he doesn't yet need NIV, he is quite open about withdrawing from use of his PEG but hasn't yet reached that point.

I worry everytime a new deterioration happens, will this be the thing that prompts his decision? I don't ask, as I don't want to encourage it, but I will support his decision. I have promised that I will, the hospice have promised to provide comfort and support at home, he trusts them too.

I wish we hadn't started this journey at all, but we have - and nothing will change the eventual outcome - but he can control the level of "suffering" he will have to endure and I am so supportive of that. His limits may be very different to someone else's, but I think in a strange way that he is still here only because his original fears of the "end" have been calmed.

Sorry that turned into a bit of a ramble.

[Ellie]

MMG I know that 'great' isn't the most appropriate word to describe your post above, but it is a great post, thank you. xx

[shelly21]

MMG I also think wthink interesting post. Whilst I have minor speech I've explained to my partner what some of my wishes are. I haven't decided on some other decisions yet.

How awful that people are pushing their thoughts on your partners choices. Even worse wanting you to persuade him.

I've always said as a couple you both go hand in hand on this journey xx

[Ellie]

Heather R Thanks for the explanation Heather.

Have you spoken to your Palliative Care Nurse about what might happen should such a situation occur? It's best to know in advance what the possible complications of not getting antibiotics for a chest infection might be and, more importantly, how palliative care can help you at this time.

Love Ellie xx

[PeterPan]

I've had that discussion Peter and found it truly empowering

We had the formal conversation today with the hospice about NIV withdrawal. You’re right Ellie it was truly empowering and very well handled. I was particular keen to learn about symptom management and sedation. I feel like I am now in control again and no longer a ‘sufferer’ of MND

[Ellie]

I'm glad you found it good PeterPan

We have had so much control stolen from us that it feels good to regain some...