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

I was just forwarded the latest from The Guardian.

End of life care at home, without specialist palliative hospice care?

I watched my mother dying at home, in hospital and for 17 days in hospice. Fortunately I was asked hospice in hospice or at home and I opted for in hospice. I had a safeguarding complaint in there! Mum left in room with catheter removed to see if she needed one, when it was known by a year’s experience that she did. Also, pain meds causing hallucinations. I knew calling nurses to come to home urgently would be futile.

Now am I to understand people will be sent home to die and us carers will be told how to administer medication - a skilled nursing speciality?

Age UK CEO has spoken out! I find this disgraceful and disgusting.

We’re often informed on the news how someone passed away comfortably at home surrounded by family. and friends…? That wouldn’t have been mum’s experience, and that was without this crisis!

Please, Carers UK must speak out against this latest imposition! We may have asked whatever next, and now we know- we’re now palliative care and pharmacy technicians?

Not to mention our own mental and physical health. Doubt if we were consulted whilst this new guidance was being drafted!

Oh, we’ll all be just fine, they’ve got us an end of life TOOLKIT, it’s referenced in The Guardian’s article!

Just read this report, Rosemary and it is very frightening and has the potential to affect many of our carers. Giving end of life care is a very skilled process (and even the professionals can find it difficult as you and your Mum found out) To deliver this care whilst also in a highly emotional state is too much to ask. We saw on the TV trainee mental health workers practising how to put in cannulas in the classroom, but family carers are supposed to do this without any practice into a dying relatives hand?


Guess who will be in trouble if we unintentionally over dose, or underdose and cause undue pain…

We know caring is a 24/7 undertaking. Hospitals and hospices have a night shift. How can a single carer, as was my case, practically do this?

What happens if we refuse?

Please bring this issue to the attention of the Program Team! :smiley: :laughing:

I’ve just read The Guardian article but I don’t read it as a “fait accompli” -

Dr Richard Vautrey, the GP committee chair at the British Medical Association, said families had not previously been asked to take on end-of-life care. “But as we have seen across the health and care system, processes are having to change and adapt in the face of what is an unprecedented situation,” he said.

“Of course, it would only be done when individuals had the ability to do it safely and with supervision – albeit remotely in most cases. Only family members who are willing and able would be asked to do this – no one should be compelled to do so.”

Prof Martin Marshall, the chair of the Royal College of GPs, said: “We understand it is a distressing time for people whose loved ones are sick and if appropriate, we will support families and unpaid carers to safely take on elements of an individual’s care, such as administering medicines’

Covid-19 is more than an NHS issue – it will take a nationwide effort to get through this crisis and so far, we’ve seen a tremendous effort from our patient’s families and friends. > Where families are not comfortable taking on elements of their loved one’s care, this will be respected> .

An NHS spokesperson said: “It is already common practice for people who are willing and able to help care for family members receiving end-of-life care, supported by expert clinicians and with the right training, > and just as is already the case no one will be asked to do things they cannot, or do not wish to, do> .”

At our local hospice any spare bed capacity is being used by the NHS as convalescence for anyone who is recovering from COVID 19 and who cannot go back to their own home for any reason (i.e. they live on their own and have no-one to care for them) thereby freeing up beds in our local NHS hospitals. During this unprecedented time I would imagine that this is much the same up and down the country meaning that just now hospice beds could be in short supply.


Mum was extremely fortunate to get a hospice bed. They are like gold dust around here. My neighbour looked after her husband at home and I am aware of it being an option.

The next person I’ll be looking out for is myself !

The guidance is already written, along with those toolkit templates!

For a country that doesn’t allow purchase of more than 32 aspirin at a time, it is interesting to note what it will have carers do , when it suits!

I do not want to be alarmist, but I wouldn’t want to wait until it becomes the norm until us carers enter into some sort of discussion with governing authorities and offer up our response to this notion.


CUK and the Disability Alliance must stand up for all of us, and our carees.
We are supposed to have a right to choose whether or not to care.
My dad died in a hospice with a morphine driver to take away the pain.
Mum died in the nursing home, also with a morphine driver.
Neither of them was OK until the last minute. Both of them were very ill for an extended length of time. I never cleaned up either of my parents. I would do everything else, but not that. It would be too embarrassing to contemplate for them, and me. I’ve just discussed this with my son. We both feel the same.
As unpaid carers we have had more than enough dumped on us. If the government can afford to pay someone 80% of their usual income up to £50,000, then they can afford to pay for nurses to care for our loved ones as they are dying. Just reducing it to 75% of their income would be enough!
I’m really fed up with the way unpaid family carers have become even more invisible than before. We’ve had “clap for carers” Thursdays, but not for us, for PAID carers/medical staff. I was very angry to see our local Tesco was collecting for food etc. donations to go to NHS staff yesterday!! What about carers that get nothing because they are getting their pension???

This is plainly ridiculous and asking too much.

As an exhausted parent of two boys with additional needs I cannot begin to imagine just how difficult it would be to look after an elderly person at end of life.

That would involve being up all night as well. At least I am getting sleep. But I am still exhausted due to the demands all day, every day.

Serious safeguarding concerns with the suggestion that carers take on all of this.

Unfortunately, end of life can happen at any time, young or old, and can be either short or prolonged.

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.