PEG Tube at a late stage

[TinyDancer]

Any experience, knowledge or advice massively appreciated, I'm in a right state.

My mum was diagnosed a year ago with Bulbar onset but following the diagnosis appt hasn't engaged with anyone from the MND team. Her choice was to live her life as though she hadn't been diagnosed and she would not budge from that stance. I brought up the PEG tube shortly after diagnosis because her swallowing was affected but she said she wouldn't have it wouldn't discuss it.

Today, she wrote down that she wants the feeding tube now. I have left a message with the MND coordinator. To complicate matters further, Mum withdrew mine and my sisters consent to talk to anyone medical a few months ago because she didn't like being talked about (as she saw it) so I don't know if the coordinator will ring back.

Mum can hardly eat now and must be desperate. We're in the position i dreaded....approaching a crisis because of not accepting palliative care and not putting things in place in advance.

The last thing I'd say to my mum is 'i told you so' but I did tell her that if she would like to consider a PEG, it should be well in advance of needing it.

Mum is not able to speak, underweight, her breathing doesn't seem good and for the past couple of months has only been able to eat custard and things of a similar consistency. She regularly chokes on secretions and is very weak and tired but still walking.

Do you think they will give her the PEG now and how quickly can it be done? If I brought her to A&E do you think they'd do it as an emergency? Would a private surgeon do it?

Sorry for the barage of questions? 💛

[Ellie]

TinyDancer I am so sorry you find yourself in a crisis situation with your mum. Of course only a medical professional with knowledge of your mum's status can give a proper opinion on whether or not can safely get a feeding tube, or not.

... underweight, her breathing doesn't seem good ...

Do you think they will give her the PEG now and how quickly can it be done? If I brought her to A&E do you think they'd do it as an emergency? Would a private surgeon do it?

To answer some qestions you raised, in general, not specific to your mum:
If a person has lost a substantial amount of weight, it may be challenging to fit a feeding tube.
If breathing is poor, a tube can be placed using a RIG procedure, during which non-invasive ventilation can be used.

No, A&E would not fit a feeding tube. At best, they'd admit her to a ward, pending assessment.
A private surgeon *should* have the same rigorous assessment procedure as an NHS one - it's a safety issue, pros v cons, and not a "we don't want to" issue. The plus in going private might be how soon it can be done.

I can't answer if your mum is well enough for a feeding tube, unfortunately.

Big hug to you Tiny Dancer.

Love Ellie.

[Ellie]

PS. If she is refused a PEG/RIG feeding tube procedure, there is also an NG tube (nose to stomach) which is much less invasive. It's usually a short-term solution but might buy her time to put on weight, get a bit stronger, and be reassesed for a feeding tube. xx

[TinyDancer]

Thanks so much Ellie especially for highlighting the RIG and nasal tube options as possibilities. I highly doubt she's well enough for a PEG at this stage but you never know. Everyone deals with this disease differently and I can't judge since I'm only in the background and don't have it. But I do feel this stressful situation emphasises the importance of having a plan and putting things in place before a crisis point is reached. Mostly, I just feel so scared for my Mum xxx

[Gordan1111]

Hi Tinydancer. If your mum is willing suppose you could try phoning her doctor or AE to see if could get her in for assessment. At least then will know have tried to do all could. x

[Lynne K]

Hi Tinydancer. I’m sorry about your mum’s symptoms and the stress that it’s putting on you. I hope that your mum can get a solution quickly. Lynne x