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Now we are to have end of life care thrust upon us? - Page 2 - Carers UK Forum

Now we are to have end of life care thrust upon us?

Guidance on coronavirus and a place to share concerns and support
The expectations of unpaid carers is getting too much without the fear of managing end of life thrown our way. Like Rosemary says it's not just the elderly who die. Any of us could be put in this position at a time where the Government have literally frozen the Care Act and replaced it speedily and thoughtlessly with the coronavirus Act.
Rosemary and Maine

Of course that is so.

And especially so with Covid-19, it could affect any of us.
Opens a minefield if take safeguarding in to account.

Whilst a lot of detail is missing, everything mentioned re professional support seems to be via remote means. Not ideal at all.
Also what about rights of the person with ill health/possible virus. Some symptoms of virus are similar to other causes that may require a different course of treatment. Only a face to face would help determine this.

I gave my mam her insulin injections every day, also her anti rejection injections after her transplant. In these circs as suggested in this article though, I would not feel comfortable doing so. I have too many failed attempts by Drs myself that tried in insert canulas, then had to call for assistance as they couldn't manage. I realise these are unseen times we are going through and we need to adapt, but even if they are testing the water with these suggestions, personally I would be against it. Nurses take years to train, even more training to be palliative nurse.

Groups for those disabled/ill health are, from comments I have read, against this. Even twitter posts are raising concerns.

Far too many answers needed

I couldn't find it before but Charity Director of Age Uk posted this on twitter in response to this issue -
Have to say I am really concerned about this & fear there simply isn’t enough palliative support for families or care homes at present.
( Families expected to provide palliative care during coronavirus crisis – NHS)
How can you wipe someone's bottom "remotely"?

Personal care is, by definition, personal. Not rocket science.
It sounds very much that they are going to force this on carers and families whether they wish to do it or not. If they say they haven't got enough nurses to deal with end of life care, they will no doubt ignore many pleas of carers not to have to do it and enforce Nhs 'remote' services, by the ignoring process. Remote being the keyword here as they already do ignore as it is and push all types of specialist care onto unpaid carers. In particular, via the same process of ignoring and that was the process even before this pandemic ever started.
Lots of us have done bum wiping and done it well. Under hospice care it was commonplace for the patient to be taken off their therapeutic meds. I recall being told, by the consultant no less, when I asked what the hospice`'s plan was for mum's condition, " We don't know and we don't care. We just treat the symptoms here!" Hospice and palliative nursing is a specialised, advanced nursing discipline.

It's an insult to even suggest that we can be expected to care for loved ones ourselves with some type of 111 service for the dying to be offering up handy hints, check sheets for us the follow. An insult to palliative care special doctors and nurses too!

If and when I get to that stage, just shoot me. But that would be frowned upon!
I guess there is no point saying emotionally and physically we were not able to do it? Solicitors letter? Realise timing is an issue. There is NO WAY I could do end of life care for my husband and I would not want to. I guess I would have to tell them that I would leave the premises rather than do it? Change the locks to prevent person being discharged entering the home? Very hard and not sure I could do this. I agree preventing pain is the main aim of end of life care. Husband has a bottle of morphine left and says he would take this if he had coronavirus rather than go into hospital. If I got it for him, then I would be deemed an accessory so I guess I would hope he would take it whilst he was able?

We carers really are cannon fodder aren't we?
Hi Rosemary_1706

Thanks for raising this issue - I can see how it must be quite worrying for you. It was was also discussed on our social media and in response our policy team have asked us to share the following statement with you:

Carers UK is very concerned at the guidance and we have been in touch with NHS England about it. It is a difficult and worrying time for families caring for relatives who are disabled or ill at present, particularly for those caring for people at the end of life. It is essential that NHS does not place additional responsibility on families unless they are willing to take on that role. If they are willing to take on this role, they must provide the right information, advice and back-up.

Wishing you well

Michael, I'm of course aware of the pandemic, but surely end of life Continuing Healthcare should not have been abandoned so quickly. It's very wrong.
What happened to the Cradle to the Grave principle?
If those in hospital dying can have so many staff caring for them, why not the elderly?
Most of those at end of life needed skilled nursing, but there may be trained nurses who cannot fight Covid, my neighbour for example, but who could do some shifts with the elderly. The current rules are too vague, we need certainty. Especially as nursing homes are full of Covid.