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

[Rosemary_1706]

I was just forwarded the latest from The Guardian.

https://www.theguardian.com/society/202 ... ndemic-nhs

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!

[Rosemary_1706]

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

https://helixcentre.com/project-end-of-life-toolkit

[Melly1]

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?

Melly1

[Rosemary_1706]

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!

[susieq]

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.

[Honey Badger]

.

[Rosemary_1706]

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`.

[bowlingbun]

THIS IS A STEP TOO FAR IN TAKING AWAY OUR RIGHT NOT TO CARE!

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????

[Cloudygal]

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.

[Rosemary_1706]

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