Liverpool care pathway

[stella1w]

Posting here for traffic, not debate,
distraught friend just told her mum, demented, at home with 24 hour care has been put on liverpool care pathway. She spoke to the gp about palliative care thinking it would mean a nursing home and was not consulted about lcp. Gp is refused to let her mum have sedatives or water and my friend is v v v upset and feels this is like euthanasia. She doesn,t seem to know what to do or if she has any rights to stop it. It could take four weeks.
I said if she had doubts she should ask for lcp to be postponed until the children had been consulted and undertood and consented.
What can she do?

[SchroSawMargeryDaw]

But you were quite obviously sent here by your Dad and you don't seem to actually know much if anything about LCP.

[Susieshoe]

Oh by the way fellow posters - do you realise that Cheryl's Dad (James Mee) has proudly posted a link to the thread on his poisonous Facebook page.

Please be aware that Jame Mee is in the habit of taking quotes from Pro LCP pages - cutting and pasting them on his page and then makes rude, insulting assumptions about the original poster. Said original poster has absolutely no right to reply because they have no ability to comment on the anti LCP page unless they are members!

So, watch that he doesnt do the same here....

[bluegnuboo]

Can't see the prospect of Cheryl coming up with a reasoned opinion, fact or discussion anytime soon.

It would appear her right to sound ill informed and reactionary is all that's needed in this.

[Piecesofmyheart]

I very much doubt that daddy will dare appear over here - too much informed discussion and relevant information being posted. I rather suspect he would be more than a little out of his depth
It will be useful for the supporters of his page to be pointed towards this thread. They might learn something

Op - again I apologise if the tone of the thread is distressing for you. I really hope things are okay with your friends mum.

[bluegnuboo]

Mr Mee's little page is unlikely to be read by anyone I'd be worried about but worth noting his superior debating tactics Susie, thanks for the info.

[SchroSawMargeryDaw]

Pieces I really don't think they would learn anything, they are all as ignorant as the next I think.

I will state though that I used to be totally against LCP after reading media articles about it, I seen a thread on here and actually went and done the research myself and I changed my mind.

[bluegnuboo]

I will last say that I think a lot of people who react so badly to something like the LCP are having very understandable reactions to the loss of a loved one.

I do think it's a pity that their grief is keeping them in such a pointlessly angry place and would leave them be... if it wasn't for the fear and worry they give to people who are terminally unwell or their relatives with their hysteria..

[Susieshoe]

Oh and by the way, I am also a nurse, mainly chemotherapy but also care for people who are acutely unwell and sometimes terminally ill and cared for on the pathway.

And yes, I totally support appropriate use of the pathway and am pleased to see that it's being used more in a general setting. It can be used in appropriately at times - but any inappropriate use has been grossly exploited by the media (and James Mee et al) in order to discredit, abuse and accuse healthcare workers of malpractice

In fact James Mee and his cronies go even further and accuse NHS workers of murder, cruelty even goes so far as to accuse us of nazi leanings......

[elastamum]

I have experience of the LCP when caring for my mum, who died a peaceful and dignified death at home surrounded by her family. Implemented correctly, it is a great help in caring for dying.

BUT I was also asked permission to withdraw fluids and food from my aunt who had dementia, as I was told by her nursing home that she was dying. I refused, as I felt this was a charter for neglect. I made it very clear to them that I considered this to be inhumane and certainly not appropriate treatment for a vulnerable old lady. She lived for a further six months.

Sadly, this sort of thing the OP describes does happen, but it isnt the LCP that is the issue.

OP tell your friend to complain to her GP and if she doesnt get a resolution inform them that she will be taking this up with the GMC and PCT. And as long as she can swallow, give the poor woman some water. Dying of dehydration is a slow, and horrible death.

[HopingItllBeOK]

Cheryl you are quite right that you have the right to hold whatever opinions you wish.

What you should not have the right to do, is use one person's pain as a launch board for your father's views and political grandstanding.

This is not an open debate, the OP clearly states that. This is a plea for information and help from a worried friend. You have made your point repeatedly you have linked to your page. Now I ask for the sake of decency that you walk away from this thread.

[frumpet]

Cheryl , no one on here who works in the health care sector is going to deny that sometimes things go wrong or that bad care isnt given . However the LCP is essentially about giving the best care to a patient at the end of their lives . It is about ensuring that the medications required to ensure someone is pain free are available to be given . I was nursing in the days before the LCP and used to despair on a night shift or weekend when there were only a skeleton staff of medics and you needed morphine for someone .
I would also like to point out that if a person is put on the LCP and their condition changes for the better , then they would be taken off it. I remember a very sick , elderly gentleman who was put on the LCP , i looked after him on a night shift , when i came on he was very poorly , by the morning he was asking for a cup of tea , clearly not his time to go , oh and obviously i made him the cup of tea he requested !

[frumpet]

The most important thing to remember though Cheryl is that opinion does not equal fact . You are of course entitled to your opinion , as everyone else is theirs but do not mix the two up .

[JugglingFromHereToThere]

Personally I feel it's a shame there hasn't been more debate between other people on this thread and not just batting backwards and forward with one poster !

[frumpet]

OP are the district nursing team involved if the patient is at home and on the LCP ? they may be a good port of call as far as gleaning information and getting answers is concerned . She can ring the GP surgery and ask to speak to the district nursing team looking after her mother , they may not be in house and may be located at another location , but she should be able to contact them.

[frumpet]

Why does your friend think that a nursing home is preferable to 24 hour care in her own home ? is it something she has discussed with her mother previously ?

[stella1w]

OP here.. thanks for the helpful suggestions. I have read some of them to my friend and she is grateful.One of the most helpful ones was one early on that said in a hospital environment LCP is only for people with 72 hours to live.
The GP has stopped the sedatives that stop her mum getting agitated, stopped her blood pressure medication and told the carers to stop giving her food (they refused). How he thinks this could carry on for four weeks I do not know.
I have suggested to my friend that she get a second opinion/assessment, get local hospice involvement and make clear to the GP practice manager that the family do not consent to what he is suggesting.
I have had a google of LCP criteria and the first one is that the patient is dying, which my friend's mum is not. She can eat when encouraged, she is mobile, she can recite her address, she can sip water.
Only last week my friend was told that her mum did not qualify for funded nursing care and now she has been told her mum is dying. She feels there might be a connection (privately funded til now, but money about to run out).
I did not mean to start a debate, just needed urgent advice. Thanks all. Perhaps someone (I don't know how) could report this thread for deletion as I fear it is going to get heated.

[frumpet]

Stella , get your friend to check if the district nursing team are involved , if her mum is on the LCP then they should be . Get her to speak to them about her concerns .

[frumpet]

Also does she have a care manager in social services ? if so speak to them too .

[TraceyTrickster]

I find CherylAmber rantings incredibly offensive.

My mother died a few months ago. She had advanced dementia and lost her swallow function, so could not eat/drink. The intravenous drip was pooling under her skin, causing distress (as he body was shutting down albeit slowly).
We requested food be withheld to reduce her suffering. Hardest decision I have ever had to make, but definitely the right one for us.
The LCP was fantastic- she had lots of pain relief drugs, excellent pallative care and the nurses moistened her lips every hour (the only way she could receive 'some' liquid).

I get very offended by people making swinging judgments, and waffling on about the church involvement, having no direct experience of it. Death can be peaceful or protracted. We think the LCP helped it to be as painfree as was possible.

[hellhasnofurylikeahungrywoman]

Reported stella all the best your friend and her mum.

[CherylAmber]

I am going to post just once here. This is cheryl's dad, the reason I asked her to post was because this was "mumsnet" and I believed I would be a little out of place, for me to post. Call me old fashioned if you must, I would probably agree.

I lived and saw what happened to my mother under "LCP" and I would not have treated a dog in such a manner, but I won't speak of that here, because I think it is inappropriate and certainly under the circumstances in lieu of the ladies post not the right time. However, you are welcome anytime to join our group and pontificate there and tell us all about how good your LCP is. You can say all you want and repeat all you have said here to those who have lost their loved one's in that group.

I will finally say this, for "some", the LCP has worked, it has helped them and it has provided comfort in death seemingly mostly in a hospice setting! On the other hand, I know of a lot of others who have not had the fortune to be within that type of setting when the LCP was used and as a result they have suffered the most dreadful inhumanity imaginable. The real failure has been the unwillingness to acknowledge this! You will pile everything in you have to the LCP. But as regards the loss of human life, when it goes wrong, you cheapen the degrading inhumanity even more, by calling it nothing more than a mistake.

I hope your friends mum gets all the treatment she needs! I apologise fully and unreservedly. Goodnight!

[SinkyMalinks]

cherylsdad.

Undoubtedly there are tragedys in life. There can be wrongs or errors that need addressing.

You say yourself that the LCP works for some.

The pathway is not bad. Perhaps the implementation in some cases (which is what the health sec says on your fb site- which got unfairly slated)

By piling all your vitriol onto the LCP (which, in your words has helped them and provided comfort) are you missing the opportunity to ask why the care of your loved one was so unacceptable?

[claig]

Cheryl, well done for sticking to your position and bringing forward a contrary view to the all-believing, all-faithful contingent.

Not everybody blindly follows the advice of medical experts. We read of people being dehydrated in hospital - people not on the LCP. We read of scandal in some of hospitals. Not everyone unquestioningly accepts the advice of the experts.



'Doctors at the hospital had removed all feeding tubes and drips and placed the 82-year-old grandmother on the Liverpool Care Pathway. Her children and grandchildren were told to say their last goodbyes.
But they said no. And after they defied hospital orders and gave Mrs Greenwood drops of water, her family helped her make a remarkable recovery.


Within hours, Mrs Greenwood was eating and drinking for herself and is now back at home and proud to call herself a Liverpool Care Pathway survivor. The former singer and pub landlady is planning to go on a world cruise, looking after her great-grandchildren at home and will attend her son-in-law?s 50th birthday party this weekend.
The hospital concerned has been paid more than £600,000 in the last two years to hit targets for the number of patients who die on the Pathway, according to documents uncovered by the Mail.


Last night Mrs Greenwood said she is angry that doctors gave up on her and has welcomed the announcement of a review into the ?end of life? treatment regime.'


www.dailymail.co.uk/news/article-2223836/I-survived-death-pathway-Patricia-82-given-days-live-family-defied-doctors-gave-water-straw--shes-planning-world-cruise.html

[claig]

'One of the leading critics, hospital consultant Professor Patrick Pullicino, said: 'Given the fact that the diagnosis of impending death is such a subjective one, putting a financial incentive into the mix is really not a good idea and it could sway the decision-making process.'


Why the financial incentives?

www.dailymail.co.uk/news/article-2223286/Hospitals-bribed-patients-pathway-death-Cash-incentive-NHS-trusts-meet-targets-Liverpool-Care-Pathway.html

[claig]

'But Dr Tony Cole, chairman of the Medical Ethics Alliance pressure group said: 'If death is accelerated by a single day that will save the NHS nearly £200 ? that is the estimated cost of a patient per day in hospital.
'My position on the LCP is that it is inherently dangerous and unnecessary.'