Of officious officials, a pernicious pathway and a clique of clinicians!The Norfolk Health Scrutiny Committee and medical representatives also heard from Denise Charlesworth-Smith, who lives in west
Denise, hopefully, lent authority and authenticity to those, also, whose claim it is that it is not just a matter of 'communication' but that people are being put on this pathway who should not have been put on it in the first place and have had their lives terminated prematurely! That constitutes an act of involuntary euthanasia and corporate manslaughter! These 'professionals' need to be reigned in.
Investigations into faulty aircraft result in the entire fleet being grounded until the all-clear is given and they have once again been certified as air-worthy. An investigation into a 'care' protocol involved in taking life is not taken so seriously. How serious is their investigation, then...?
It is not an investigation; it is a review.
This is BBC Radio Norfolk -
Mark Matthews sits in.
BBC Radio
Norfolk -
Listen from 45 mins to 51 mins. Then 1hr 17 mins to 1hr 24 mins. Then 1hr
43mins to 1hr 51 mins.
Mark Matthews
Questions will be asked this morning about how the Liverpool Care
Pathway is used in Norfolk South
Norfolk councillor on the panel and joins us now. Good morning,
Nigel…
Dr. Nigel Legg
Good morning
Mark Matthews
So, why is the committee questioning the hospitals?
Dr. Nigel Legg
Well, it’s not just the hospital, it’s the all the hospitals in Norfolk
Mark Matthews
Well, what’s your view on this, Dr. Legg, is it the, you know, the
payments being offered to the hospitals? Lots of people aren’t comfortable with
that. Is that your main concern?
Dr. Nigel Legg
Well, em, it’s not my main concern. I mean, we have some supplementary
reports from the various hospitals for consideration at our meeting this
morning. But mostly it does make clear that payments are not specifically
related to performance as it were; em, they’re more related to the provision of
training and so on. But personally, I’m still not comfortable with this notion and, indeed, I’m not particularly
comfortable with the notion in the sphere of wider healthcare provision as it
is today.
Mark Matthews
I mean, obviously, you’re a doctor and health issues are often very
complicated. Do you think many people have been frightened by the Liverpool
Care Pathway by media coverage that might have tried to simplify something in
order to explain it, but actually this is quite a complex process?
Dr. Nigel Legg
Well, I think they may have done. I mean, I think the whole point about
it is the various agreed procedures have to be gone through before someone is
placed on it. And their condition should be reviewed regularly while they’re on
it because some people will get better. I think the general public is not
really aware of what could or should be happening, em, and perhaps there is a
certain amount of alarmist, em, review of the reports and so forth, and what we
want to do is try and get it all into perspective so that the general public
can be reassured that it is fit for purpose and does what it is intended to do.
Mark Matthews
Em, so the Norfolk Health Scrutiny Committee will take on board what is
said today… Em, but does the Committee have any power to make changes if it
doesn’t like what it sees?
Dr. Nigel Legg
Well, it can make recommendations. Em, what we found in the past is we
have a good working relationship with all the various health providers,
commissioners and so on and, generally, we’re able to reach a good consensus
view on the way forward. The ultimate sanction for the scrutiny committee is
that it can refer matters that it does consider unsatisfactory back to
Secretary of State who would investigate it further and then make a
determination. This has never happened since I have been on the Health Scrutiny
Committee and though I can’t imagine a situation when it might but there is
always the threat of that ultimate sanction. [pause] Er, yes.
Mark Matthews
Okay. Dr. Nigel Legg, thankyou very much for your time this morning.
That is Dr. Nigel Legg who is on that scrutiny committee which will be hearing
the evidence from all sorts of people, not just from hospitals and various
healthcare professionals on the Liverpool Care Pathway.
[We can see, from this attitude, that
something awful could not possibly take place, how such “disasters” as Mid-Staffs
are permitted to happen and for nothing to be done until the groundswell of
protest becomes so overwhelming that it cannot be ignored. These Committees
exist only to whitewash the situation and to ‘reassure the general public’.
‘General public’: what an insulting term that is!
And,
yes, it is quite insulting to trivialise and dismiss as a 'communication' issue the hurt and the harm that has been done in the name of their sacred
cow, the Liverpool Care Pathway!]
…………………………….
Mark Matthews
The controversial care plan for the dying known as the Liverpool Care
Pathway is being discussed by County Councillors in Norfolk Queen Elizabeth
Hospital
Roy Cooper -
I went there one afternoon and she was crying. This was about half-past
two in the afternoon. And I said, “Mary, what are you crying for?” And she said,
“They won’t let me have no drink.” Now, she was in there for diabetic
treatment, low sugar, and on the board that said no drink by mouth or food. So,
I tried to find someone in the hospital to tell me what was going on. I found
one of the head nurses, a man with a white coat on. He said, what’s wrong, and
I said my wife want a drink and you’ve took all the drink away and everything.
He said the doctor’s ordered she’s to have no food nor drink. Now, what that
was all about, I don’t know, because she was in there for low sugar level. So,
she’s got to have food.
Mark Matthews
Well the Cooper’s case has been taken up been taken up by Norfolk
Mark Matthews
Richard Barr, can you hear me? He can’t hear me. I’ll just find him for
you on our desk system… Richard, hopefully, Richard Barr can now hear me. Good
morning, Richard.
Richard Barr
Hello, good morning.
Mark Matthews
I have got you. Sorry about that. Er, this was a very serious case and
a very distressing one for Mrs. Cooper’s family. So, you’re pursuing this at
the
Moment, are you?
Richard Barr
Yes, I am handling it. I’ve been asked to have a look at the case and
I’ve now been able to get hold of the set of medical records and I, I’m sorry to
say that the medical records, in fact, very much bear out what the family are
saying about the problems that they faced at the hospital. Em, there were all
sorts of difficulties throughout the time that Mrs. Cooper was in hospital. And
what was very concerning, I think, for the family was that, repeatedly, in the
early stages while she was in the hospital, they were talking about discharging
her and it looked as though she was doing well. And then things seemed to go
very wrong and then she was put on this Liverpool Care Pathway. Now, Mr. Cooper
is adamant it was never explained to him until after his wife died. And what’s
interesting is, looking at the documentation provided by the hospital, the
documentation is very poorly completed and, for instance, it says a full
explanation of the care plan is given to the relative or carer – named relative
or carer is blank. It is also blank in describing who the health professional
was who was present. So, if they did explain it to Mr. Cooper, they certainly
haven’t documented it at all well.
Mark Matthews
So, from what you’ve been able to see, was the pathway appropriate for
use in a big general hospital like the Queen Elizabeth?
Richard Barr
Richard Barr
Well I can’t judge whether it’s appropriate in a general hospital like
that. The aim of the Liverpool Care Pathway is a good one if it’s done very
sympathetically and very well in the right circumstances, but em, as far as the
Cooper family is concerned, they didn’t know about it, didn’t know what was
happening until after Mrs. Cooper died, and their concern is that, leading up
to her being put on the care pathway, there was an element of neglect, that
they say she wasn’t allowed access to food and water and, in fact, there was a
very bizarre experience on the day that the Liverpool Care Plan was introduced.
Mr. Cooper’s daughter found her mother in the ward with her oxygen mask off and
the nurse standing by the basin apparently unconcerned that Mrs. Cooper was at
that time was turning blue and becoming cyanosed. And that was the subject of
the complaint to the hospital. It left, certainly in the family’s view, a very
strong feeling that there was real neglect there.
Mark Matthews
What would you like to see councillors do today – we’ve been talking
about this mainly this morning because the health scrutiny committee is looking
at this and taking evidence – when they examine the issue of the Liverpool care Pathway? What would you like to see
councillors do?
Richard Barr
The first thing that has to be said is that there has to be proper communication
with the family. The family has to know about it, to agree with it, and to
understand what the aims are. As far as I can see, there was a complete failure
of communication and, as I say, the paperwork certainly doesn’t support the
hospital in any suggestion that they did discuss it with the family. Em, and
one’s got to be very careful, em, because what you’re doing is, you’re saying
that someone is about to die, you’ve got to be very clear that that is going to
happen. As far as Mr. Cooper was concerned, his wife was doing well; they were
talking about discharging her and then, then, suddenly this happens and, in the
end, she did of course die. She died a few days after the incident I have
described.
Mark Matthews
Richard Barr, thankyou for your time this morning. That’s Richard Barr
from solicitors, Scott Moncreith.
……………………………
Mark Matthews
In the studio, now, with us is Dr. Bernadette Auger. She’s, er,
consultant in palliative care at the James Paget Hospital in Gorleston which
has been using the Liverpool Care Pathway for… six years, is that?
Dr. Bernadette Auger
That’s correct, yes.
Mark Matthews
So, in simple terms, could you explain what the LCP is supposed to do?
Dr. Bernadette Auger
The LCP is about supporting patients and their families, the aim being
for them to have a good death. By that, I mean a death where their symptoms are
managed, they are comfortable, pain free, and that any potential new symptoms
such as distress or restlessness, excess secretions in the upper airways, are
anticipated and medication is available. Em, and as I said, alongside of that
is ensuring that relatives understand what’s happening, they are aware that death
is thought to be imminent and they are supported through that process.
Mark Matthews
So, this is done by slowly withdrawing the treatment they’re receiving,
is it?
Dr. Bernadette Auger
It’s done by assessing what is appropriate treatment. Em, so we
withdraw treatment that is used for long-term benefit because that’s no longer
appropriate. Any treatment that is still thought to be appropriate is continued.
As I said, pain medication, medication for nausea or vomiting is still needed.
Em, we might change how we give that medication, so we use something called a
syringe driver because patients are no longer able to take medication regularly
by mouth and we need to give them a safe, secure route.
Mark Matthews
Mmm. If…
Dr. Bernadette Auger
If patients still need fluids, they’re continued. Em, it’s just a
review of what’s still appropriate.
Mark Matthews
Okay. It’s useful to get that information because there is a lot of
miscommunication about this.
Dr. Bernadette Auger
Absolutely.
Mark Matthews
We’ve heard examples already this morning on the programme of families
who claim they weren’t consulted and knew nothing about the fact that the
patient had been put on the LCP until after they had passed on.
Dr. Bernadette Auger
Absolutely, and that should never happen. In my view, it is as
important to support the family as it is the patient.
Mark Matthews
That, that’s a fairly simple process, isn’t it, to make sure the family
are consulted?
Dr. Bernadette Auger
It is. Absolutely. And the Liverpool Care Pathway is actually a paper
document. The first page of that document is an information sheet for you to
discuss with the relatives, and to give to the relatives. And that explains
what is happening, what the process of dying is about, that there is a reduced
need to eat and drink. Em, and that’s the very first thing that a clinician,
the doctor or the nurse, picking up the Pathway should look at and discuss with
the family.
Mark Matthews
So can you understand then why some people are suspicious of this
process?
Dr. Bernadette Auger
I can. And I think, and I have looked back on some of the issues that
are raised, and I think it’s often a failure of communication prior to needing
to use the Liverpool Care Pathway. If you haven’t had the discussion with the
patient and the family that their disease is now progressive, that we’re,
sadly, not going to be able to cure your disease, and there is an ongoing
process where you are going to become more poorly and eventually that will end
in death.. if you aren’t starting and encouraging that conversation; if you
suddenly… a patient is in the last few days of life, suddenly having to do a
lot of catch-up with patients and their families, em and that can seem like a
sudden change but, in fact, to the professionals, it’s been an ongoing process.
So it is a failure of communication. And certainly that is what, I understand,
the review that Norman Lamb has started is looking at, how we use the LCP. He’
he’s not looking at the pathway itself, he’s looking at how it’s used and I
think that’s absolutely right because, obviously, these complaints have come
forward and we need to improve if there is a problem.
Mark Matthews
Two other areas of concern that I’ve heard about. One is the fact that
the patient may improve, potentially under normal circumstances, even though
their treatment is slowly withdrawn. What about a response to that?
Dr. Bernadette Auger
Absolutely. And we do see that. And sometimes it’s by actually
simplifying their treatment they do improve. And in that situation, you stop
the care pathway. And I have certainly known patients who have been on the
pathway, we stop the pathway, and they have another period of quality of life,
and then they may need to go back on the pathway a week or so later. But that’s
absolute because it is very difficult to diagnose dying.
Mark Matthews
So, it’s not irreversible?
Dr. Bernadette Auger
It’s not irreversible, no.
Mark Matthews
And the other the other thing that makes people uneasy is payments to
hospitals. Em, because this does make people feel very uneasy, the fact that
NHS commissioners can pay hospitals, and it would appear that er we’ve got
problems with a lack of beds and an aging population that is living longer
there appears to be some form of incentive, almost.
Dr. Bernadette Auger
I can see why that misunderstanding has arisen. The payments that have
been used - in other areas we have never
had that particular type of payment – the payments are used to try and improve
the quality of care. And payments that tend to encourage people to use the
Liverpool Care Pathway are exactly that. The Liverpool Care Pathway is seen as
a good standard of care for the dying patient and it’s to try and encourage its
use and to try and improve the care of the patients; it isn’t about hastening
death; it isn’t about emptying beds. So, it is a misunderstanding about the
idea behind the payments in my view.
Mark Matthews
So, there’s a review being carried out for the government and also the
scrutiny committee hearing today. Will you be appearing at…
Dr. Bernadette Auger
Yes.
Mark Matthews
Mark Matthews
What will you be saying about the progress of it?
Dr. Bernadette Auger
Well we’ve been asked how we‘re using the pathway in our hospital and
in particular the areas of concern, the communication issue, em, and that’s
what’s happening nationally, that’s what we’re looking at locally, and I
welcome it. I think anything that, we should always review what we do, we
should always make sure that we are giving and providing the best care
possible. We should never be complacent. So any lessons we can learn and then
incorporate into our ongoing education and training is a benefit.
Mark Matthews
And is there one key change that you would make to this? We’ve talked
about a few different aspects here.
Dr. Bernadette Auger
I think it’s about ensuring communication, with patients, with
families, and it’s also making sure they have understood what we have said. I
think that’s, perhaps, sometimes where, you know, we know what we have said to
patients and their families, but have we checked that they have understood the
meaning and had time to ask the questions that they need to ask?
Mark Matthews
Thankyou for coming in this morning.
Dr. Bernadette Auger
Thankyou.
Mark Matthews
That’s Dr. Bernadette Auger from the James Paget
Hospital
……………………………
Roy Cooper -
I went there one afternoon and she was crying. This was about half-past two in the afternoon. And I said, “Mary, what are you crying for?” And she said, “They won’t let me have no drink.” Now, she was in there for diabetic treatment, low sugar, and on the board that said no drink by mouth or food. So, I tried to find someone in the hospital to tell me what was going on. I found one of the head nurses, a man with a white coat on. He said, what’s wrong, and I said my wife want a drink and you’ve took all the drink away and everything. He said the doctor’s ordered she’s to have no food nor drink. Now, what that was all about, I don’t know, because she was in there for low sugar level. So, she’s got to have food.
Dr. Bernadette Auger -
...we withdraw treatment that is used for long-term benefit because that’s no longer appropriate.
Mary Cooper's diabetes was no longer a treatment priority...
This was not at all 'bizarre'. My own dear mum presented cyanosed and they did nothing. Whilst thought noteworthy of mention in the Commission report, the N & MC thought it not worthy as a matter for rebuke of the registrants concerned.
Richard Barr -
...there was a very bizarre experience on the day that the Liverpool Care Plan was introduced. Mr. Cooper’s daughter found her mother in the ward with her oxygen mask off and the nurse standing by the basin apparently unconcerned that Mrs. Cooper was at that time was turning blue and becoming cyanosed. And that was the subject of the complaint to the hospital. It left, certainly in the family’s view, a very strong feeling that there was real neglect there.
This was not at all 'bizarre'. My own dear mum presented cyanosed and they did nothing. Whilst thought noteworthy of mention in the Commission report, the N & MC thought it not worthy as a matter for rebuke of the registrants concerned.
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