The Bee Wee camp have plans afoot.
"I’ve actually got the agenda here. What would you like this to be called? I mean it’s not a colouring competition, you know, for six-year-olds. This is a professional, er you know, em standard we are trying to implement. You know, why on earth are they going to be asking a bunch of people what would you like this to be called? They’re spending half an hour trying to discuss what the title’s going to be called. For heavens sake, people have got better things to do with their time than come up with a title for this. Surely someone of Bee Wee’s standing should have something that she actually knows what she’s going to call it and have the courage of her convictions of being qualified in end of life care to actually come forward and say this, you know, that she’s looked at what the Liverpool Care Plan, the Review panel said in the summertime and she’s come up with some cogent arguments for what needs to be changed and she’s going to make damn sure those things are implemented; not actually involve a bunch of doctors who are going to sit there discussing like a bunch of fishwives what should and what shouldn't be put into it." - Denise Charlesworth-SmithThere’s more than just rotten fish causing a stink. The Nudge Team are well acquainted with why it isn't always appropriate to call a spade a shovel. That's why the showers were called the showers. Nudge, nudge, say no more when it's a wink. It does matter what this Bee Wee protocol is going to be called.
They're casting the nets broader to trawl them in for EoLC. We have advanced a long way from the days of the Barton Method and the
By the pricking of my thumbs,
Something wicked this way comes.
By GSF and SPICT I scry
And know who lives and who may die!
- Apologies to Will Shakespeare.
The 1% will be selected and added to
the Death Lists. They will not be called that. This will not be called a
palliative care list. In that final year, the appropriate grooming will proceed
to downsize care expectations via a "PACA", "My Wishes" or
last wishes! The 'communication' lacking in the discredited LCP will be set in
place at that initial stage. A whole year to achieve much and in which much may
be achieved. Those emergency admissions will be cut substantially.
Readers of these pages will already be well aware that it does matter what the Death Lists are called. If Will will permit us once more,- a rose by any other name will smell as sweet, but it won't sound as sweet.
The grooming
is all important. The EoLC nurse using his able grooming skills to discuss how
to break the sorry news to their children would certainly have succeeded
with Kathleen Vine's granddaughters
if the dear lady in question had not ruined it all and woken up!
Further reading -
Liverpool Care Pathway - A Right Carry On Up The Pathway
The brand is all important. This is Dr. John Hughes -
I think the problem with the Pathway, the Liverpool Care Pathway, is that it’s become rather a toxic brand.The name of the rose must change...
This is BBC Radio Norfolk -
Chris Goreham
We’re looking at this morning at
something we’ve talked about quite a lot on this programme over the last year
or so and that is the Liverpool Care Pathway and plans to replace it are being
discussed at a series of Workshops and there’s one taking place today. The NHS
says it’s come up with some new principles to improve end of life care and it
wants feedback from doctors, nurses, patients and you as well. It’s after a
review into the LCP back in July which recommended that it should be phased
out. Now, one of the people we’ve talked to a lot about this is called Denise Charlesworth-Smith,
she’s from Methwold, near Thetford and has been campaigning for changes to end
of life care. Her father died after being put onto the Liverpool Care Pathway.
Denise was involved in the Review into the end of life care but she’s angry she
hasn’t been told about these new proposals. She’s been telling our reporter, Jo
Thewlis, that the NHS should be doing more to let people know that they want
your views.
Denise
Charlesworth-Smith
Because of what happened with the
Liverpool Care Pathway and the lack of communication and the failure to consult
families and tell them about relatives who are dying, I think it’s paramount
that members who criticised it were at least invited along to these Workshops
so that they could actually discuss it with the people who are putting together
the new panel, em, the new programme. And basically, I feel that, em, as I was
a leading light with most of this and actually wanted to get my two pennyworth
across, I would have at least expected a personal invitation to the nearest one
to me, which is Newmarket, which is, unfortunately, full according to the email
I received today from Jill Sykes who is running it up at Sue Ryder.
Jo
Thewlis
What do you think of the new
proposals?
Denise
Charlesworth-Smith
I haven’t seen any of the new
proposals. I know absolutely nothing about it other than the fact that they’re
obviously picking up what was said on the Liverpool Care Pathway Review, More
Care Less Pathway, that we wrote in the summertime. So, for all I know, they
could be getting it totally wrong. I would like to know that they are getting
it totally right rather than have a repeat performance of what we had this last
year.
Jo
Thewlis
I was going to say, how does it
make you feel that, despite being one of the leading campaigners, you know
nothing of these proposals?
Denise
Charlesworth-Smith
I think it stinks to be quite
honest; I think it’s a total cover-up. And I think it’s a case of, ah, that I’m
purposely being blocked from going to this, em, Newmarket Workshop and, as far
as I’m concerned, this is something that I had to fight to get onto; I had to
fight to get down to meeting in London, which was held in September where I
first found out that there were going to be Workshops and, now that there are
Workshops being dotted around the country, I think the only people who are
going are the people who supported Bee Wee on End of Life Care. I don’t think
there’s anyone there who, em, has had a negative experience of it so they can
actually put a balanced view across to what they’re proposing. So, I think the
whole thing is a total farce. I’m absolutely livid.
Chris
Goreham
Well, er, that’s campaigner,
Denise Charlesworth-Smith, who we’ve talked to a lot about the Liverpool Care
Pathway. She’s from Methwold, near Thetford. NHS England says the Department of
Health has been speaking to Denise directly about her concerns. They don’t have
any further comment to make. We’ll talk to Denise live after eight o’clock to
find out what she wants the NHS to do next to make sure it improves End of Life
Care and we will get her views on those new proposals that are being discussed
at the moment. We’ve managed to get a copy of them and send them to Denise so
that she can be looking at them. And, er, just after eight, she’ll tell us all
about them. But we have talked about this from time to time over the last year
or so here on BBC Radio Norfolk: the Liverpool Care Pathway; the plan that em,
if you’ve never heard of it before, originated in the Hospice Movement and a
way of, em, looking after somebody in what is clearly going to be the last few
days of their life. And I think it’s fair to say that when it’s done well it
works very well for a lot of families and a lot of people have been vary
grateful their relatives have been put on it but, by the same token, we’ve had
quite a few calls over the last year or so from people unhappy about the way
that it’s been used and, quite often, it’s the lack of communication – the
perceived lack of communication – between hospitals and families which is called
into question. We’ve had, em, several cases of families saying that they didn’t
realise that a loved one had been put on this Liverpool Care Pathway. But we
will talk about this more later in the program because there’s been such great
concern about it that em the plan is to actually phase the Liverpool Care
Pathway out and come up with something else. Is there a better way of looking
after people in those em those last few days? Your thoughts, please, on
01603617321. And Norman Lamb, who is a Health Minister and North Norfolk MP,
will be along after the news at seven.
………………………………………………………………………………….
Chris
Goreham
It’s very nearly ten past seven
and the NHS is seeking feedback on the future of End of Life Care. This is
after a Review into the Liverpool Care Pathway that was ordered by the Health
Minister and North Norfolk MP, Norman Lamb - we’ll speak to him shortly. It
said the Pathway should be phased out by July next year. Now, er, the NHS wants
your advice, your thoughts on how people should be looked after in their last
few days of life. Our producer, Sophie Price, has been looking at this story
for us and em, Sophie, just give us a bit of background to this…
Sophie
Price
Well, we’ve covered this story a
lot on BBC Radio Norfolk over the last year and many of you got in touch with
us and told us your experiences of the Liverpool Care Pathway, a method for
caring for people in the final days of their life, and it was after concerns
about the Pathway were raised by patients families and health professionals
that Norman Lamb ordered a review into End of Life Care in the NHS. That Review
recommended that the Liverpool Care Pathway should be phased out by July next
year. So, a new alliance of twenty different organisations, including groups
like cancer charities, were set up to try and come up with a new system. It’s
published its ideas and wants the views of doctors, nurses, carers and
patients’ families and other organisations to help develop them.
Chris
Goreham
So, Sophie, what, what is in
these new proposals?
Sophie
Price
Well, the NHS wants to encourage
the use of personalised care plans which include information about the
patient’s wishes about care and treatment and how they’d like to be looked
after in the last days of their life. It also comes up with ten points which it
thinks are the hallmark of good care in the last days of life – those include
things like good communication between doctors, patient’s families and carers
and making sure the right support is available to families in those situations.
Chris
Goreham
And the NHS actually wants to
hear from people about these plans…
Sophie
Price
Yes, that’s right; it says it
wants to hear from health professionals, families and carers. That’s why these
workshops have been set up around the country. There’s one taking place in the
eastern region; ours is in Newmarket
Chris
Goreham
That’s Sophie Price, our
Producer, thankyou. Let’s talk to Health Minister and North Norfolk MP, Norman
Lamb; he’s on the phone now. Good morning.
Norman
Lamb
Good morning to you.
Chris
Goreham
Em, the Liverpool Care Pathway –
We’ve talked about it a lot; always a very emotional issue for obvious reasons
– Em, one thing that we’ve been told a lot over the past year or so on
this programme, though, is that when it
works properly – and it originated in the Hospice Movement – When it works
properly, it is something that a lot of people are happy with, so, why does it
need to be phased out?
Norman
Lamb
[Takes breath] Yeah, it’s a good
point. Er, and it, it’s been very interesting talking to a lot of people who
have had experiences of the, the Liverpool Care Pathway with relatives, em, in
the last stages of their life and I’ve heard er some people talking very
positively about their experience but I’ve also heard some horror stories and
er I heard so many horror stories that I felt it was essential that er we set
up an independent review just to look at the whole thing and er what lessons we
can learn from it. And I think it’s fair to say that em we’re constantly
increasing our understanding of, of how best to care for people at the end of
life and I think that, in concept, the Liverpool care Pathway was a clear
advance; it sort of set a framework for the sort of questions that all
clinicians should be asking to make sure that the person can die in dignity er
and that the family felt involved, that their, er, perhaps their faith er, er,
em, er priorities were properly considered and so on. Er, but it became
distorted in too many places with it becoming synonymous with people er,
literally, not being given any food or drink in hospital and relatives being
horrified by er clinicians, nurses or whatever refusing to allow a loved one to
have a drink. Now, this was just, as the, er as the independent panel
concluded, this was sort of inhumane and. and and completely er unacceptable.
Er so what they concluded was that, yes, much that was good about the concept
of the er Liverpool care pathway but we need to develop our thinking further;
we need to be much more personal er in our approach to End of Life Care. In
other words, each person should be looked at in their own right, with their own
needs er particularly focussed on and that a personal plan should be drawn up
by the clinicians responsible for that individual and in discussion with
families as well, er, with backup er advice concerning the particular condition
that that person is focussing on, so, a death from cancer may have different
sort of features to it than a death from some other condition. Er, and, so
let’s make it much more condition specific, so this is an evolution, er, and I
think it’s all focussed on trying to ensure that you always get the highest
possible quality care at the end of life and that’s why it’s so important that
these events like today where the NHS is actually listening to families to hear
what they think is important and how these rules are drawn up.
Chris
Goreham
I think the one most regular
complaint that we certainly heard about when it comes to the Liverpool Care
Pathway was the lack of communication that left families often feeling like
they didn’t know what was going on in a hospital. Em, no matter what the plan
is, no matter what is in place, the communication has to be better doesn’t it,
and and if it’s not, if hospitals, if the NHS cannot get that right, then
nothing’s going to work, is it?
Norman
Lamb
You’re absolutely right, Chris.
This is, I mean, in many ways, this is nothing to do with the Liverpool Care
Pathway; this is just good care. And er, I mean, first of all, it’s critical
that you respect the wishes of the dying person. So, if that, for that
individual, if the most important thing is for them to be at home, and it’s
possible for them to be at home, to die peacefully with loved ones around them,
in their own home, then that wish should be respected. Er, when the individual
faces their last few days of life it’s, of course, essential that the family
should be fully involved in the discussions about the decisions that are being
taken. But when I’ve heard stories of, er, families arriving at hospital to be
told things like we’ve LCPed your mother… er, or even we’ve put her on the
Liverpool Care Pathway, what does that mean to anyone? It means absolutely
nothing. And if it means anything, a sort of Pathway sounds like it’s a Pathway
to death. And, and so the communication of erm these critically sensitive
matters has been woeful in some places. And, but I stress that there has been a
lot of very good care at the end of life in very many places but it has not
been uniformly good and training is one of the critical elements of this.
Chris
Goreham
Just a final point; you touched
on it there, about wanting to do the best to respect people’s wishes, but er, that
isn’t always possible, is it? Sometimes, someone may want to spend their last
few days, their last few hours at home, but they may be in a hospital, it it’s
it’s not always it sounds quite a harsh thing to say but it’s not always
possible to give people the death that they want, is it?
Norman
Lamb
No, er er er, I think that the
message is that as as far as is possible to do it, er we must respect the
wishes of that individual. Sometimes the support that that individual needs in
terms of medication, erm, er, close attention means that it is really almost
impossible to get that person out of hospital and I think that provided – and I
think that this the critical thing – provided that that is explained and
discussed fully with the family then people will tend to understand good
logical judgement. But when you’re confronted with a fait accompli; when you
haven’t been involved in any way, er, that’s er hurtful and – what I’m acutely
aware of is that when people have had a really bad experience with a loved one
dying in hospital, that bad experience stays on with the surviving loved one
for the rest of their life; it haunts them, er, because they feel that they
could have and should have done something to help. Often, of course, it’s
absolutely beyond their control, but we owe it to not only the person dying but
their loved ones to get this right
Chris
Goreham
Thankyou for talking to us this
morning, Care Minister and North Norfolk MP, Norman Lamb. In a little while, we’ll
hear from a palliative care consultant at the James Paget
Hospital
………………………………………………………………………………….
Chris
Goreham
Dr. Bernadette Auger is a
consultant in palliative care at the James Paget Hospital in Gorleston which
has been using the Liverpool Care pathway for six years, so a very good morning
to you; thanks for joining us on the programme this morning.
Dr.
Bernadette Auger
Good morning.
Chris
Goreham
Em, the Liverpool Care Pathway,
always an emotional thing to mention; we get a variety of responses. Many
people say that it has been a good thing for their family and was a very
dignified way for a loved one to end their life, but others have pointed to
often breakdowns in communications with hospitals. Is that something you would
accept? Sometimes the communications between not just your own but hospitals in
general and families are where the LCP fell down.
Dr.
Bernadette Auger
Yes. Yes, yes,
no that’s what the Review showed. Em, that where education and training supported
it and it was done properly, it did provide good end of life care. And the
Review was very clear on where it fell short and I think it’s right that we’re
looking at the whole issue and that it will be phased out. And what this new
document is showing, um, is um a new guiding principle to underpin end of life
care.
Chris
Goreham
I know you’ve
had a look at these new ideas, these new principles; can you tell me what
lessons have been learnt from the Liverpool Care Pathway and what emphasis is
now being put forward by the NHS?
Dr.
Bernadette Auger
I, I think
what’s been learnt is that sometimes we leave these discussions too late for
patients and families. And what this new document is proposing um is that
anyone who is affected by a progressive or life-limiting condition should be
offered the opportunity to look at developing what they’re calling a
personalised palliative care plan and not just focusing on the end of life,
um, which I think is what we should be looking at, yeah.
Chris
Goreham
It is
interesting, isn’t it; it is something we are, perhaps, not very good at
talking about; you don’t want to think about the last few days of your life but
actually if you do get that plan in place earlier you’re more likely to get the
most dignified end possible, I suppose.
Dr.
Bernadette Auger
Er, that’s
right, because, often, people haven’t been allowed to have discussions, haven’t
been supported in recognising the changes that were happening and then they
were sort of brought sharp against the Liverpool Care Pathway and, and that’s a
very emotional time. If you’ve had some preparation ahead of that, em, that can
only be beneficial.
Chris
Goreham
Em, what’s
happened at the James Paget? Do you feel you have improved when it comes to
talking to families; is it something you do earlier in the process than you
might have done in the past?
Dr.
Bernadette Auger
It, it’s
certainly something we’re encouraging and, and we as a specialist team are
providing more education and training to enable our colleagues to do this
because this is not just about what our specialist team does; it’s actually
what um… all, all health care professionals should have better skills at
supporting and talking to patients and families with some of these more
difficult conversations. Um, so that’s a big part of what we’re trying to do.
And I think, locally, we’re trying to encourage people to have these
conversations earlier. There was a website launched recently called Be Ready
For It. Um, it links with a national initiative under the Dying Matters Coalition
which is just encouraging people to start thinking about what their wishes
would be, um, should they have or get a life limiting illness.
Chris
Goreham
Isn’t there
one problem, though, that no matter what guidelines are put forward, no matter
what’s brought in to replace the Liverpool Care Pathway, you will still get
that flash where, being in hospital for whatever reason, is a huge deal for a
family or for a patient, but it’s, but it’s everyday, it’s just relatively
forward and routine for the people who work in the hospital and it’s when those
two worlds meet that you get problems, isn’t it?
Dr.
Bernadette Auger
I think that’s
right. And, and I think we need to close that gap. As, as I say my role is
actually saying that palliative care is a part of what most health care
professionals need to be considering. Um. A lot of the patients coming into
hospital, there may be a change in their health as a result of that and they
may not get back to their sort of previous um well-being, but it’s actually
helping people to recognise that, but doing it at their pace. This is not about
forcing conversations onto patients and families who aren’t ready to have that
conversation, but it’s trying to change the culture, em, and really trying to
get palliative care back as part of an integrated health care system…
Chris
Goreham
Just a…
Dr.
Bernadette Auger
…as opposed to
being something separate.
Chris
Goreham
Just a final
quick point, if I may… em. Do you still use the Liverpool Care Pathway?
Dr.
Bernadette Auger
[Pause] We don’t. Well, we
haven’t officially phased it out. What we’ve done locally is to provide some
guidance which supports End of Life Care planning. Er, we didn’t want there to
be a gap, em, between the LCP being phased out and new guidance coming out, so
we, locally, we tried to put something in place, but we, obviously, we will now
look at what is in these new guidelines to make sure that we’ve been, what
we’ve produced up to date to include some of the ideas that they’re putting
forward.
Chris
Goreham
We really appreciate you joining
us this morning. Thankyou Dr. Bernadette Auger from the James Paget
Hospital
………………………………………………………………………………….
Chris
Goreham
Our main story this morning;
we’re concentrating on the Liverpool Care Pathway, er, or End of Life Care in
general, really. It’s something we’ve talked about before and always gets quite
a response from you because it is such an emotional, such an important subject.
The Liverpool Care Pathway, we know, is being phased out. What sort of thing
should come in instead? What are the good parts of the pathway that need to be
taken forward and what needs to be dropped? You’re being asked to tell the NHS
what you think. Mike says, my mum was a nurse for 45 years; a lot of that time
was spent in the care of terminal cancer patients. Mum always said this sort of
thing has been going on for years, ending terminally ill patients’ lives. She
always said unless you’ve seen someone dying from cancer or a similar terminal
illness you’re not in a position to comment. There is no easy way of getting
through those last few days. It’s difficult. Roly has given us a call this
morning. Hello Roly.
Roly
Hello. How are you?
Chris
Goreham
I know this is something that em certainly
matters to you because you’ve had two family members, haven’t you, who have
been put on End of Life Care and it’s had quite an effect on you.
Roly
Yeah, yeah, em. Yeah, my mum was
a really active woman. I know she was 92 so she’d had a fair innings, but she
didn’t deserve to die like she did. She got taken into hospital, explained
everything, and I said, well, they told us she wouldn’t regain consciousness
and actually she’d be like a cabbage for the rest of her life, so we realised
she wouldn’t of wanted that, so we agreed to it in principle. I did say would
she be able to have oxygen if she needed it or water. Oh, yeah, yeah, yeah,
that’ll be fine blah, blah, blah. She was on the drip. Em. I went up to see her
the next day. They said we’re going to start it. The next day they’d taken the
drip away, her oxygen away, everything away and just lay there. She lay there
for… she’d already been without food and by the end she was without food for 23
days, she was without water for 19 days. They used to come up with to syringe
her mouth. Her mouth was dry and cracked she’d been without it all that time.
She used to suck on the, on the em swab things they used to do her mouth out
with. She used to suck away to get more out of it. And I thought, surely, she
needs a drink. And they said no she can’t she’s on the Liverpool Care plan, er
Pathway. She knows she wants a drink, so surely she must… if she knows she
wants a drink, she knows that we’re here.
Chris
Goreham
So sh… You felt…
Roly
She’s laying there and none of
us…
Chris
Goreham
You felt that once she’d been put
on the Liverpool Care Pathway, that was it and and the decision had been made
and…
Roly
Oh, yes, there’s no going back.
Chris
Goreham
No flexibility, which is… How
does that make you feel, Roly, because you are, you are, it’s horrible anyway
when you lose a loved one whatever the circumstances, but when you’ve seen that
and you’re the one that’s left behind it’s clearly, it’s going to play on your
mind for a long time.
Roly
I feel guilty. Er, er, when we
agreed it in the first place.
Chris
Goreham
What do you feel guilty about?
Roly
The thing is, well, the thing is
if she, if she hadn’t a had the… if they’d still fed and watered her, she
wouldn’t a died. She wasn’t actually dying but she would’ve ended up like a
cabbage. Er…
Chris
Goreham
Which you said she wouldn’t have
wanted.
Roly
She wouldn’t have wanted that,
no, she definitely wouldn’t have wanted that but what I’m saying is a drink of
water, for goodness sake. You know, if they’d given her a drink once or twice a
day or carried her on the drip. But they’d taken it away, the decision’s been
made, she’s dying, but it took 19 days without water. So you can imagine, going
up there and seeing her laying there and starving of a drink because she might,
she might em, em choke on the water; she might drown on the water or whatever
or so they keep telling. So we couldn’t give her a drink and there she was
sucking away at this sponge. And I think it was absolutely heart-breaking.
Chris
Goreham
Thanks so much, Roly, I know
that’s a really difficult thing for you to talk about but really appreciate you
coming on the radio to talk about it this morning. Um. And that explains it
really doesn’t it, the difficulty of getting this right and why this is such an
important thing to get right and, when it doesn’t go right, the effect that it
has on the people left behind. Our thanks to Roly. If you’ve got similar
experiences, or there’s any advice you can offer on things that should be taken
forward on the LCP, our number here is Norwich
………………………………………………………………………………….
Chris
Goreham
Now Vic in West
Rudham says surely the only plan should be to care for the patient
until they pass away. Ken says he doesn’t want to be put on the Pathway; none
of his parents or grand parents were put on it and he would want to go as they
did, in bed at home. Denise is in Spratton says no-one seems to be mentioning
the £200 per patient the hospitals were getting for putting people on the
pathway; has that been conveniently forgotten? Well, Denise, if you are
hearing, we spoke to James
Paget Hospital
Denise
Charlesworth-Smith
Good morning, Chris, yeah.
Chris
Goreham
An important development,
clearly, the Liverpool Care Pathway being phased out, but something better has
to come in and, and what are the lessons that need to be learned in your mind?
Denise
Charlesworth-Smith
Well, the lessons that need to be
learned are, em, communication, better education and training, I mean,
basically, it’s, it’s all about involving the families and involving the
patient and involving the doctors and the nurses, and having a dialogue about
actually know what is actually happening to the person that has been taken into
hospital who is deemed to be now dying. And this is one of the issues that we
still have. I mean, I don’t know if you read the new document that has come
out, the Engagement Document as they call it, but I have, since yesterday, when
I got hold of the document in full and actually gone through it. It mentions
life limiting diseases and issues like that but it does not recognise those people
who might be elderly or they might just be, you know, people who have dementia
or something like that, who go in with a fall, a chest infections, bladder
infections – these are not life limiting conditions like cancer and other such
things, but they do not actually address the fact that if an elderly person
who’s in perfectly good health goes in with something like a fall or a chest
infection or a bladder infection… and what happens to them in hospital? To me,
this document is now just a load of drivel.
Chris
Goreham
Hmmm, what, because it hasn’t
gone far enough, it’s got holes in it?
Denise
Charlesworth-Smith
Well, I mean, you know, they’re
talking about, you know, again, identifying people who are likely to die but
what proof do we have of death; where’s the research into it that we actually
asked for In the documents that we actually produced on the 15th of
July? We suggested that more research needs to be done. Why on earth Bee Wee
has picked this up and started to, to er involve another load of workshops and
people and doctors and everything else, they should have been challenging what
we were saying and actually looking into what we were actually saying in more
detail and channelling their resources into something more, em, what was the
word…? er, more professional so that they can actually support those people who
criticised it. I mean, I actually crashed one of their meetings in September
because it came to my notice that they were having these meetings in secret;
there was nothing publicised whatsoever and, in fact, they actually said there
at the meeting that these meetings were going to be all hush-hush et cetera and
they were talking with professionals from all over the country. There must have
been about thirty to forty people there who came down to discuss in London
Chris
Goreham
But they’re having, they’re
having… there’s a, there’s a workshop in Newmarket
Denise
Charlesworth-Smith
Well… [dismissive laugh] This is
where it becomes very interesting because where were these workshops advertised
and you have to be in the know to actually know that they are happening. Now,
when I actually contacted them last week, my emails were bounced back and
eventually I had an email come back to me saying that the workshops were fully
booked up. So, we tested to see which workshops were free and which ones were
booked up and, in a week, all of them are booked up. Now, that, to me, stinks. And
I had to get on to them yesterday and be very vociferous and say I actually
wanted to be at that meeting and that nothing was going to stop me and if need
be I would stand outside or stand up just to actually be there to listen to
what was happening. And I think, to be quite honest, they have involved em
people who were on the Review panel but they did not come back and consult me. I’m
supposed to be the patient champion. So, why on earth they have not consulted
me I’m absolutely livid. So, I’ve, I’ve now, eventually, after much of a fight
, managed to get myself to the meeting at Newmarket today, and as far as I’m
going to say to them there the document they have come up with is just words. The
LCP has books written about it and looked what happened there. This document is
a load of drivel. It talks about; it doesn’t, well, it does not even address
communication, education or training. How on earth are they going to take this
matter forward, I really, honestly, do not know, Chris.
Chris
Goreham
Be… Because you talked about
communication… there are other families of people who have been on the
Liverpool Care Pathway as well and whatever is brought in; whatever the
guidelines are, if they are not communicated properly to relatives, we’re just
going to have the same problems, aren’t we?
Denise
Charlesworth-Smith
Exactly. Exactly. What I am… this is what I was hoping we were actually
going to address across the summertime; not a case of asking people. I mean, I’ve
actually got the agenda here. What would you like this to be called? I mean it’s
not a colouring competition, you know, for six-year-olds. This is a
professional, er you know, em standard we are trying to implement. You know,
why on earth are they going to be asking a bunch of people what would you like
this to be called? They’re spending half an hour trying to discuss what the
title’s going to be called. For heavens sake, people have got better things to
do with their time than come up with a title for this. Surely someone of Bee
Wee’s standing should have something that she actually knows what she’s going
to call it and have the courage of her convictions of being qualified in end of
life care to actually come forward and say this, you know, that she’s looked at
what the Liverpool Care Plan, the Review panel said in the summertime and
she’s come up with some cogent arguments for what needs to be changed and she’s
going to make damn sure those things are implemented; not actually involve a
bunch of doctors who are going to sit there discussing like a bunch of
fishwives what should and what shouldn't be put into it.
Chris
Goreham
Denise…
Denise
Charlesworth-Smith
It’s ludicrous..
Chris
Goreham
We are clearly going to have to talk
to you after you have been to this meeting, I think. You’re going today to Newmarket
Denise
Charlesworth-Smith
I am… [laughs]
Chris
Goreham
I can understand it raises the
passions of people like Denise Charlesworth-Smith and it is such an important
issue. She clearly isn’t convinced. She’s had a look at the proposals that are
on the table as they stand. Will, will those questions be answered when she
goes to the meeting today? Well, NHS England says the Department of Health are
speaking to Denise directly about her concerns over not being able to take part
in the workshops. She’s going today; they’ve managed to find a place for her.
And, of course, they don’t have any further comment to make. So, em, yeah that’s
where we are at the moment with the Liverpool Care Pathway, what should come in
when it comes to, em, End of Life Care? It’s such an important issue, such an
emotional issue as you’ve heard from several of our callers this morning. Em,
what advice would you give to the NHS? What should be within it, what can be
taken forward from the Liverpool Care Pathway. What works and what doesn’t in
your family’s experience? Our phone number is 01603617321.
………………………………………………………………………………….
Chris
Goreham
We’ve been looking this morning
about what should happen to End of Life Care in future when it comes to the NHS.
The Liverpool Care Pathway is being phased out by July next year and the NHS
has created new advice for health professionals on how to manage End of Life
Care and it wants feedback from you. If it’s something you’ve experienced
through members of your family, also charities and organisations are being
asked to get involved as well. You’ve been having your say on this morning,
always a very emotive subject. Malcolm says that surely the Liverpool Care
pathway is an oxymoron; there doesn’t seem to be any care involved. Adam says
the Liverpool Care Plan is ridiculous; they won’t allow euthanasia, but they
will allow you to suffer and starve to death because they don’t have to pay for
medication. Is that not murder? That from Adam, and a text here says I knew my
husband was dying but was being placed at Priscilla Bacon Lodge until our home
could be altered to suit his last days. He was on a drip and various medications.
In the end he died with 36 hours; we did not know that he was going to be
placed on the Liverpool Care pathway. And that is the sort of thing you hear
from time to time. Er, that people say they’ve lost loved ones. They know they’ve
got a terminal illness, but they lose them because they’ve been put on the Liverpool care Pathway without the knowledge of em families.
Well, let’s talk to Dr. John Hughes, the Medical Director of the Sue Ryder charity
which is organising some of the workshops, including the one in Newmarket
Dr.
John Hughes
Good morning, Chris.
Chris
Goreham
A, a big issue this isn’t it?
Lots of emotions raised whenever we talk about it. And what do you think are
the big lessons that we’ve learnt from using the Liverpool Care Pathway in
hospitals?
Dr.
John Hughes
Well, I think, as some of your
listeners have responded, the, the big issue is lack of good communication
between professionals, doctors, nurses and patients, and particularly relatives
at what is a hugely emotional and stressful time. And I think, em, clinicians
who make decisions about people’s last few days and weeks of life without
taking into account and without having very frank and sometimes very difficult
discussions with relatives I think are always going to fall foul of this
particular pathway and er, as you know, the Liverpool Care Pathway is now going
to be phased out over the next twelve months under consultation with members of
the public and the organisations concerned in the health care and are being
asked how we should manage that process in terms of education, communication,
with patients and their relatives so we don’t get into this awful mess again.
Chris
Goreham
I have to say, looking at the
various calls we’re getting, listening to what people have been telling us, I’m
not sure whether phasing it out altogether is the right thing to do. If
communication has been the main problem, wouldn’t it be better to concentrate
on that and rather than come up with a whole new plan, rip it up and start
again, just work on the NHS just getting better at talking to people.
Dr.
John Hughes
Well, well I think that depends
upon the work that is going on and, clearly, communication and, increasing,
education for professionals who sometimes are not all that familiar with care
of the dying is absolutely crucial. I think the problem with the Pathway, the
Liverpool Care Pathway, is that it’s become rather a toxic brand. And there are
a lot of professionals who would see huge merit in a lot of the Liverpool Care
Pathway. It handled some sections of health care and social care very well over
the past few years and but I think because it has become for those people who
are less familiar with care of the dying, it’s become a bit of a tick box
exercise which has, erm, really run across the whole er ethos of good
communication, and you’re absolutely right; good communication is the key. And
the Leadership Alliance which is leading the response to the Pathway has em
good communication, education, and compassionate care right at the heart of the
message it’s going to be giving out and I think what will happen is the
Liverpool Care Pathway will be replaced by the concept of individual palliative
care planning which, by definition, will be done with the consent and agreement
of the patients and their relatives so you’re absolutely right to concentrate
on that.
Chris
Goreham
Hm… I mean it’s very easy to talk
about an organisation like the NHS and say it’s, it’s very poor at
communication and I’m sure there have been and we’ve heard this morning various examples where that has been the case
but, actually, we’ve all got to learn from this haven’t we because if we all
communicated better within families even and communicated better ourselves with
the NHS then, perhaps, we wouldn’t get so many problems.
Dr.
John Hughes
Well, er, er, you, you’ve hit the
nail on the head. I think death and dying is still pretty much a taboo subject
for many people. And, em, different members of families very often have
different views about how their loved one should be treated toward the end of
their life. And em, that poses huge problems for professionals’ concerns and I think
one, one of the aspects of this which certainly the palliative care movement,
ourselves, Marie Curie, Macmillan etc. would, would all like to see is much
more open conversation…
Chris
Goreham
Hmm.
Dr.
John Hughes
…about the implications of death
and dying and how we as a society cope with that because it has been said that
dying is still regarded as a medical failure by some sections of society and
clearly, clearly that isn’t a helpful attitude. Em, so it is about a better
understanding of death, dying, all the really difficult er physical and
emotional problems that go with that; involving families in very difficult
decision making. But let’s not hide from the reality that death and dying is
going to happen to all of us and we have to find a way of making that process
as painless, as really painless as possible and that involves society in
general; it involves family attitudes but, I think, as far as the LCP is
concerned, it particularly will concentrate on improving the skills and the
recognition, em, particularly in hospitals, not so much outside hospitals, but particularly
in hospitals, these most very difficult aspects.
Chris
Goreham
Hmm. One final
question. I think it’s an important one, that the workshop that’s taking place
today I know is full, and that there’s always, when you get something like
this, that there’s often a bit of suspicion that it’s just paying lip service
and that people’s advice, people’s thoughts, won’t actually be listened to. Are
you convinced that they will be by the NHS?
Dr.
John Hughes
Absolutely. The
Leadership Alliance which is leading this process is, is made up of all the
major organisations which are contributing to communication, education,
regulation, er, across the health and social care sector. And there is
absolutely no sense at all that any of those bodies are wanting to hide
anything or carry on business as usual; this is an extraordinarily open process
and I em in my 35 odd years in the Health Service, I’ve never really seen
anything quite as, as open as this and I think credit to the Neuberger report
that set this process going. The workshops; there are twelve workshops taking
place around the country, as you said, there’s one in Newmarket
Chris
Goreham
Er, yeah, good
idea. If you’ve got that to hand, yes. The Twitter address is…?
Dr.
John Hughes
The Twitter
address… let me see if I can just find it… er, I may need to come back…
Chris
Goreham
[laughs] I’ll tell
you what, I’ll put you back onto the Production Team and they’ll take it and
we’ll put it out before the end of the programme, because that website and that
Twitter account, I think, are…
Dr.
John Hughes
Okay…
Chris
Goreham
…important given
that we’re telling you today that the NHS wants to hear your opinion, so, I
think it’s important that we tell you how you can do that. Our thanks to Dr.
John Hughes from the Sue Ryder charity for coming on and giving us his take on
where we’re going with End of Life Care.
………………………………………………………………………………….
This is BBC Radio Norfolk -
BBC Radio Norfolk 06/11/13 - Listen from 1hr 15 mins to 1hr 22 mins - An update further to yesterdays programme
Chris
Goreham
Let’s return to something we were
talking about this time yesterday, the changes, or the proposed changes to End
of Life Care in the NHS. This was following a review set up by North Norfolk
MP, Norman Lamb, who is also the care Minister, which came to the conclusion
that the Liverpool Care Pathway should be phased out by July next year and new
guidelines for caring for dying people should be brought in. We were telling
you yesterday that the NHS wanted your views on the way things should go
forward. There was a big meeting about this yesterday and Denise
Charlesworth-Smith from Methwold was there in Newmarket
Denise
Charlesworth-Smith
Oh, good morning, Chris.
Chris
Goreham
You had lots of concerns
yesterday morning and a lot of them understandable given your family
experiences. Do you feel better about the way things are heading having been at
that meeting?
Denise
Charlesworth-Smith
No. [laughs] This, this meeting,
as I said to you yesterday, was for improving care for people at the end of
life. It was a series of public workshops to be held in the autumn. When I got
there yesterday, I got the distinct feeling I was the only member of the public
there. Basically, I spoke, I took them aside and said to them how are you
advertising it, where was it advertised? And they told me that they were
specifically told to hand it out to their service users and cohort groups that
they work with. This is the organisation that was actually hosting it
yesterday. And, as such, as you would expect, we had people from the
professionals from the medical back… you know, medical background et cetera…
Chris
Goreham
Hmm.
Denise
Charlesworth-Smith
…who are involved in End of Life
Care. I think, you know, there was a lady who accompanied the gentleman who was
the head facilitator, that was his wife, but she was involved with hospice care
anyway. And there was a doctor who brought her mother along. Em, but the mother
hardly got a chance to speak to, em, myself.
Chris
Goreham
Well, just to put the other side
of this, we did speak to Dr. John Hughes just after you had been on the
programme yesterday. He’s the Medical Director at Sue Ryder, the charity, and
he’s been working in this sort of field for a long, long time and he was
telling us he can’t remember the NHS ever being this open to ideas and never
been this transparent on anything. So, em, your experience clearly hasn’t
suggested that but he was convinced that they are listening; they are doing
what they can to find out what families and patients think should be the way
forward.
Denise
Charlesworth-Smith
Well, I’ll tell you what I found
and I was, I was bitterly annoyed by it because I actually spoke to him, em, at
the meeting. Em, and I said to him, as far as I could see, this workshop that I
was at yesterday, was full of the medical profession there and they were
flogging the fact that er the members’ of the public’s views were important but
they could fill in an online survey. Now, what’s that going to tell people:
you’re not that important; you don’t need to come and meet the medical people
and talk us about your experiences?
Chris
Goreham
But , but isn’t an online survey
which everybody can actually log onto actually a better way of doing it than
just having meetings when it’s face to face and you can only get through so
many people in one go? See, eh, eh, aren’t you going to get more responses by
doing it online?
Denise
Charlesworth-Smith
Not necessarily. We’ve had
surveys before. I mean, I know of a survey that was commissioned last year by a
certain body of people that was actually open to the public to actually… it was
supposed to be for medical professionals but it was actually open to abuse. And
it was abused because we know, we know it was abused because certain people got
hold of it and abused it. So how on earth they’re going to, er, actually build
the information that they get on the survey I really do not know. The best
thing to do would actually be for people to write in and actually, you know,
meet with the professionals. Now, I know that er, I had a conversation, well I
haven’t had a conversation, I’ve had an email exchange with the Department of
Health yesterday and they suggested that the person who is heading up this erm,
End of Life, em, public workshops is going to meet with me and with some of the
people who are on my group. But that’s not good enough because we would
actually like to have the professionals there to put across the good and bad
points so they can hear what we are saying, not through a survey. The survey,
if you have a look at that survey, you cannot write too much on there without
it actually bombing out and saying right that’s it, time out or whatever…
Chris
Goreham
But, but, but, to finish with, the
fact is that the NHS has looked at the Liverpool Care Pathway, agrees with your
feelings that it doesn’t work, and is trying to improve it. You, you must be
pleased about; you must applaud them for that.
Denise
Charlesworth-Smith
I, I’m pleased that they are
trying to improve it but they’ve certainly got to listen to what the public
want. I mean, the public weren’t there yesterday. I mean, I can count on one
hand the number of people that were there… that’s not getting open, that’s not
a public workshop; that’s a professional workshop with a few from the public
who have been dragged along. You know, that’s, that’s not right. And they have
said they’re going to change it to try and redress the balance so I’m presuming
they’re going to throw some of the professionals off their workshops. You know,
some of the ones already booked up. But I have to say the, the proposals that
were held up yesterday it was very interesting to see what the reaction was to
it. A lot of people said as far as they were concerned the proposals that were
put in front of us were very woolly and they’re going to have to back and
redress what we came up with. I meant, they were talking about – let me give
you a summary of what they were talking about yesterday – they were talking
about a personalised palliative care plan to be offered…
Chris
Goreham
Hmm.
Denise
Charlesworth-Smith
The care of the dying person to
be aimed at achieving a set of outcomes and each of the ten outcomes to be
supported by a set of guiding principles. Hold on, this starts looking like the
LCP talking about outcomes again…
Chris
Goreham
Yeah, well…
Denise
Charlesworth-Smith
…end up with tick boxes.
Chris
Goreham
We will…
Chris
Goreham
Denise, I’m sure we’ll come back
to this again in the future but thanks ever so much for joining us over the
last couple of days because your views, given what you’ve been through, what
you’ve campaigned on. Always very interesting to listen to Denise
Charlesworth-Smith, not convinced that the NHS is heading in the right
direction when it comes to em phasing out the Liverpool Care Pathway or they’re
pleased that that is happening but er where it will all end up but we’ll keep
you in touch with Denise and others on that as well. Em, our phone number,
01603617321.
The workshops are closed shops... reserved for fully paid up members only.Footnote:
If I may borrow Denise's most apt and descriptive expression, we don't need the 'drivel' of the NHS 6C's of Nursing; all we need is this -
"I solemnly pledge myself before God and in the presence of this assembly, to pass my life in purity and to practice my profession faithfully. I will abstain from whatever is deleterious and mischievous, and will not take or knowingly administer any harmful drug. I will do all in my power to maintain and elevate the standard of my profession, and will hold in confidence all personal matters committed to my keeping and all family affairs coming to my knowledge in the practice of my calling. With loyalty will I endeavour to aid the physician in his work, and devote myself to the welfare of those committed to my care." - Florence Nightingale
Something wicked this way comes
But in an angel's garb is drest
And who shall test the rule of thumb?
The wicked and the wickedest!
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