When can we use medical lpa?

[denise]

I know I dont have medical training but I am aware of mnd and of course my husband's diagnosis. I had a concern on Sunday when I visited the hospital in that he was breathing in oxygen. I said he shouldn't be on oxygen, he should be wearing a bracelet that states this but it was too small anyway and the print had long worn off, but they wouldn't listen to me. The doctor had dictated this action and it being Sunday no doctor was present!

I also said I wanted to take him outside as I felt being inside all this time with not even TV for company was detrimental to his dementia. I was told no because he was on oxygen and I said once more....... for the life of me I couldn't recall why he shouldn't be using oxygen but hey I'm a mere mortal.

I sent an email to Jon palmer and tracy Thomas asking for support but again it was Sunday...... I went to the hospital on Tuesday and Stephen looked fine and the chest nurse caught up with Stephen and phoned me later. she was pleased that I had brought this up and declared medical lpa. (Which I had done 3 times when asked about dnr) And she had seen his results and his carbon dioxide levels were high. She went through what they wanted her to agree to such as cough assist and I think niv. Stephen had declared no he wanted nothing to do with either and nor did I.

So my question is why do we draw up a medical lpa (at great expense) if we are ignored or not even consulted? Hes on Shipley ward at derriford which has nothing to do with his condition so I'm not sure how aware the doctor is of mnd/ftd.

Can we have more bracelets? I had taken info to the hospital of all of those involved in Stephen's nursing but when they transferred him from Mayfield it didn't go with him.

I did get to take him outside. 🌝

[Heather R]

Yes it’s confusing for us unqualified people isn’t it? When I was just being wheeled into my PEG operation, they told me I was getting oxygen, and protested but surely that’s not okay for MND? I was told by the nurse, no, oxygen is good. And after, that it’s only dangerous when you’re not being monitored all the time. And with lpa, shocking that no one consulted you (though I don’t know if they absolutely have to follow what you say, like in advanced decisions about treatment). Hopefully someone will make all this clear for us, but horrible for you going from left on your own completely in charge of him, to now being so excluded x

[Maria C]

I am still able to speak for myself, but my daughter is authorized to make decisions on my behalf. She is a nurse, so more likely to be heard and listened to.

I’m so sorry that you are being put through this nonsense trying to get Stephen the care he needs and deserves. 🤗🤗🤗

[MNDConnect]

Dear Denise,

I am sorry to hear that you were ignored by medical staff when you expressed your concern about your husband being given oxygen. Has Tracey Thomas contacted you as yet? It does indeed sound as if the ward he is currently in and the doctors treating him do not understand the condition.
Oxygen is not recommended for people with Motor Neurone Disease because as the chest muscles weaken not only do the lungs struggle to breathe in oxygen but they also struggle to breathe out carbon dioxide (CO2). CO2 is a by product of the breathing exchange. A rise in carbon dioxide can cause a toxic build up in the body resulting in disorientation, unconsciousness and possibly coma in extreme circumstances.
Occasionally oxygen will be given to people with MND, these are usually in palliative circumstances or if there is an underlying medical condition.
We can of course send out wrist bands to you, could you please let me know your full name and post code, I can then check for you on our system.
With kind regards
Jacqui Anderson
Senior MND Connect Adviser

[Heather R]

MNDConnect is it that the lungs might give up permanently (or temporarily) if there seems to be enough oxygen? They are not stimulated to work by rising carbon dioxide?

[denise]

hi MNDConnect yes ive spoken to tracy and the chest team have been to see stephen. i was congratulated on bringing up the oxygen thing but not good if they dont listen. think they'd just look it up but what do i know. ive printed off your answer and i shall give it to them.

things is what is the point of medical lpa if they just ignore us? imconfused

[shelly21]

denise I brought up your recent bad experience with my other half. I let him read your account. I explained that this is what happens.

At a recent mnd meeting one of the members wives told us that the nurses kept lying her husband flat! He had a serious breathing issue. She asked 3 times and they ignored her.

The hospital would be in serious trouble denise if anything happened. If you want to ever raise his care with them ask for your concerns to be recorded on his care record on the computer. They have one for each patient.

Your experience is just bad bad nursing.

[denise]

Hi shelly21 it did go through my mind that they would be in serious trouble. I don't know how long he had been on oxygen but anyway now I've put a message on his notes. I'm still not sure why we have lpa or when to use it. Obviously hospital isnt going to phone up each time they have to make a decision but I do think they should at least liaise with Stephen's nursing team. So I have a medical lpa, I can make decisions but cant if no one asks. For some decisions I would rather not make the call anyway but from what I was told they would not revive him anyway because of his diagnosis. So again what is the point? Sounds a bit callous but I could have saved our money.

News article yesterday about a couple complaining about how their mother had been in an ambulance 25 hours after banging her head and having a suspected brain bleed. She was in the ambulance opposite us. Stephen must have gone in just before her. Now he's blocking a hospital bed because there's no where for him to go. What happened to all those nightingale wards they put up and ne

[denise]

Drat. What's app message comes in and my post gets sent🤔 those nightingale wards they never used. Why dont they bring them back and use those for triage? Suppose then the argument would be they need more staff. I would feel better if we had wards more dedicated to mnd and similar diagnosis. Perhaps we have? 🤷♀️

[MNDConnect]

Dear Denise,

The NHS website gives this information about a Lasting Power of Attorney.

Health and welfare LPA

A health and welfare LPA gives your attorney the power to make decisions about your daily routine (washing, dressing, eating), medical care, moving into a care home and life-sustaining medical treatment. It can only be used if you're unable to make your own decisions.

Has the LPA been recorded onto your husbands medical records? If so, the ward team should have taken note that this was in place and consulted you accordingly. It may also help to have an Advance Directive (ADRT) in place, this document can be used to help the medical team make decisions in the best interests of Stephen, this should also apply to the LPA.

I am sorry that you were ignored by the medical team treating your husband, if you would like us to send any information leaflets for the ward staff please let us know. We can also provide an 'Understanding my needs' leaflet, this form allows you to record what directives are in place and also sets out basis care needs, to help hospital staff understand how to care for someone. The link below will take you to this form on our website. We can also send out a paper copy.

https://www.mndassociation.org/app/uploads/2021/06/Understanding-My-Needs-Nov-18-INTERACTIVE-V2.pdf

Please do let us know if you would like us to send any literature to you.

Kind regards
Jacqui
Senior MND Connect Adviser

[MNDConnect]

Dear Heather R,

A rise in CO2 would not stimulate the lungs to breathe, unfortunately if the muscles are weakened it will only be the pressure from the ventilator which could stimulate the lungs to breathe in and out.

Kind regards

Jacqui
Senior MND Connect Adviser

[denise]

hi MNDConnect i did provide the ward with a list of nursing staff involved with his care. unfortunately when they moved him from one ward to another they didnt bring the details with him. i cant believe they didnt know that tracey thomas is the mnd-nhs co ordinator . i told them 3 times i have lpa medical and i spoke to them 3 times about dnr. apparently they wouldnt revive him anyway. so ............???

[shelly21]

denise the whole countries hospitals are clogged up with elderly or complex care patients. Waiting weeks & months to get them a suitable home or chc care. Then ambulances are stuck at hospitals because a & e depts are rammed because there are no beds on wards free.

This winter with the mega flu outbreak thats been warned about, will cause major crisis for the nhs and paramedics. Added on that vulnerable people will not have their heating on and then get ill.

Its not going to be a good winter x

[denise]

I'm worried about winter coming. The whole system is a disaster area. I'd like to say that I don't see how it can possibly get worse but that would be tempting fate.

I was having breathing problems so the doctor booked me for a chest xray and spirometry. All I had to do was phone and confirm but as it was busy this computer told me to leave my name and it repeated my phone number back to me (15 july). I waited 3 days and phoned again. 17th August I phoned again and they phoned me back. My referral had been cancelled because I took so long to call. So I got an apology but she insisted they didn't have a phone number for me. So how did she call me back? So then I phone the GP hang on for 20 minutes and then told they will phone me on Monday. Just as well my breathing hadn't got worse or I'd be sitting in an ambulance. 😳