A new stage in my life...................

[nitram]

"It is so sad that in this day and age, funding for hospices is primarily down to donations."

My local hospice has twelve beds but typically only 6 are ever used due to lack of funding, to use more beds would mean a cutback on their hospice at home funding.

Even though almost everybody in a hospice, or receiving hospice at home service, is eligible for fast track CHC funding they still need more cash. Charity events , a weekly lottery, and legacies provide a top up on NHS money.

 

[Loopiloo]

. I do not know why the doctors cannot suggest Helen takes this drug to let her sleep but insist she asks for it. All I know is they said it will not shorten her life but give her space and short term relief.

The doctors surely must realise that not all patients will have the ability to ask for this drug which will not shorten her life but give short term relief. which Helen needs. I understand some of the reasons why concerning life shortening drugs, litigation etc., also that they are tied by rules and regulations on such matters.

Would it be possible for Helen to give her permission for you (or Mandy or Martin) to speak on her behalf if she is unable to do so? Although I doubt they would be able to agree to that. It is probably something you have all considered anyway.

The only other way around it would be if she wrote her permission in the presence of the doctors. If she was capable of writing....

Sorry if I'm rambling but it seems wrong to me even although I understand (to some extent) the reasons for precautions.

Hoping Helen is getting some benefit from the drug induced drug.

Thoughts and love
Loo xxx

 

[DeborahBlythe]

I think that you can maybe blame Dr Shipman and the fear of litigation for that.

I'm thinking you may well be right, Saffie. But there must be some patients too timid or self effacing to ask for pain relief. Or who are simply unaware of what is available. I would have thought the offer of pain relief from a nurse or doctor might 'give permission' to accept it. But I guess it must seem like a very fine line, somehow, in light of Shipman's actions, and fear of abusive care still runs very high.

I hope Helen continues to sleep peacefully. I think the old librarian in me might have surfaced re that family and I would have had difficulty not going 'Shhhh!' at them.

 

[Grannie G]

It's why I think one of us should be with Helen at all times and I feel for those who have no one.

I was glad I was there today, otherwise I wouldn't have known what had happened . It is how I was with Dhiren , I need to know.

Loo , today , in front of the nurses I asked Helen if she wanted something to help her sleep and she said yes. It seems I can ask but nurses can't.

I'm sure it's post shipman

 

[Soobee]

In terms of my recent experience of working in the mental health side of the NHS, whenever there was an unexplained death or suicide, everyone who had been involved in that person's care in the last few months (recorded on notes) had to attend to an inquest and answer coroner's questions, even if their input was not related to the death at all.

So maybe it's possible that the palliative care side of things has the same level of scrutiny - which would be why the doctor has to be sure that the patient is asking for the sleep drugs for themselves, so they are not open to potential attack by distraught relatives.

 

[notsogooddtr]

I think that you can maybe blame Dr Shipman and the fear of litigation for that.

Sadly I think the trust between patients and the medical profession has been lost,Drs are understandably worried about litigation which means they sometimes treat when perhaps it would be best not to and vice versa.Just for info,my sister only received end of life meds on the day she died,prior to that she slowly lost conciousness over a period of 8 days.Thank God she didn't seem to suffer pain but I will never know what was happening in her mind

 

[jan.s]

I have been reading the trials and tribulations of poor Helen, and am sad that everything isn't running as smoothly as we all would hope.

I hope tonight is a quiet night and Helen remains comfortable. xx

 

[Spamar]

I'm sure you're right Saffie, I nearly wrote that myself. My interest stems from a very good friend who had prostate cancer, secondaries in bones and spine. At end of life he was prescribed morphine for the excruciating pain. Morphine acts for 3 hours. Prescription was once every 4 hours. So they condemned him to this pain for a quarter of his remaining time. There are a few words for that, but they are not printable here. He was a good man, a gentle man who had time for everyone. I was honoured to count him as a friend.

Thank goodness OH died in his sleep.

 

[Spamar]

Sorry, carried away. Thank you, Sylvia, for the updates and information.

 

[cragmaid]

I wonder if the drugs, written up for Helen were based on home treatment. There may be certain rules and safeguards that prevent them from being " freely" dispensed within a hospice environment and possibly need certain "qualified" persons to dispense them. Likewise, the drugs themselves, while not "life - shortening" may have certain potential side effects which need Helen's authority and expression of comprehension of what they are asking.

Fortunately I have never been in this situation and sadly, that's exactly where Helen is now.

 

[Grannie G]

A little knowledge is a dangerous thing

I was determined to find out more about the drugs Helen was prescribed to make her sleep and why the medics couldn't suggest she took it unless she asked.

I have a favourite nurse. She is lovely and gentle and quiet and calm and attentive. She was on duty so I asked her.

One drug is to relieve anxiety and the other is to ease distressing symptoms in terminally ill patients.

The reason Helen has to ask is because the doctors do not want to over sedate. They call it 'time out' which is when the patient is too uncomfortable to be able to settle and wants the relief of sleep.

Tonight Helen said she is fed up of being so uncomfortable. I suggested the Meds and she asked for them.

We waited till she was sleeping before we left.

Sorry I over dramatised it.

 

[BeckyJan]

I am so sorry to read how things are for Helen at the Hospice.

Along with all here on TP I am distressed to hear the news and it must be unbearable for those so close to her; Martin, Sylvia and Mandy especially.

It seems to me the nurses and doctors are excellent and will do anything within their powers to help Helen and it must be distressing for them if they are unable to do more to relieve her discomfort and suffering.

Thinking of you all a lot and sending much love.

 

[Soobee]

Thank you Sylvia. Your presence and updates are invaluable. xx

 

[Grannie G]

Helen looks absolutely defeated Jan .

Her face has no expression , she dozes then wakes, her body 'jumps' as if she's had a shock, and all the while she seems aware her body is shutting down.

She is still eating , she had rice crispies for breakfast, pudding and custard at lunch time and fruit and jelly tonight. Thank goodness she is no longer nauseous, that at least has been sorted.

I think we irritate her if we try to make things better for her. I have learnt from previous experience it's best just to sit quietly and remain alert to her needs.

 

[Izzy]

Helen looks absolutely defeated Jan .

Her face has no expression , she dozes then wakes, her body 'jumps' as if she's had a shock, and all the while she seems aware her body is shutting down.

She is still eating , she had rice crispies for breakfast, pudding and custard at lunch time and fruit and jelly tonight. Thank goodness she is no longer nauseous, that at least has been sorted.

I think we irritate her if we try to make things better for her. I have learnt from previous experience it's best just to sit quietly and remain alert to her needs.

Sending love and as always wishing peace and strength. I've no more words. It's heartbreaking. x

 

[BeckyJan]

Oh Sylvia this makes me smile as its Helen to a tee, but oh with such sadness.

have learnt from previous experience it's best just to sit quietly and remain alert to her needs

You recognise this in Helen and that's why your friendship is so special .

 

[Saffie]

Thinking of you and I'm hoping that today brings some peace for Helen and hopefully a room to herself.xxx

ps. I think you intend returning home on Friday, Sylvia. That will be a sad and difficult day for you. x

 

[Dazmum]

Thinking of you all Sylvia. You are a wonderful friend for Helen and her family xxxx

 

[chick1962]

Hope Helen had a peaceful night and today will be a calm one Sylvia. As everyone is saying , you are such a devoted and special friend . Thinking of you all xxxxx


Sent from my iPhone using Talking Point

 

[Grannie G]

ps. I think you intend returning home on Friday, Sylvia. That will be a sad and difficult day for you. x

Thanks Saffie, you're right it will be a very difficult day.

Meanwhile we have two difficult days to get through.