>>CARRIE GRANT: It's time for our next session
to begin, it's a panel session and we're going
to be talking about transforming end of life
care and why we can't afford not to, and when
I was sent this brief I just thought wow that's
a big question, first question was, what is
a good death? Wow, that’s, that’s like,
that's one of the biggest questions of life
isn’t it? What is a good death? Well surely
we must all want a pain free and dignified
death for ourselves and for our loved ones.
The irony is that whilst medicine and good
healthcare can extend lives and often cure
diseases, where are these advances to be found,
when someone desires to die without pain and
suffering? So the next plenary is going to
explore why it's so important to work with
people in their last 12 months of life, to
ensure that they get the best healthcare and
to get the death as much as they can that
they want. OK that sounds like a strange introduction
but I’m sure it will make more sense when
we get our panel up. Let's meet our panel
if you’d like to come out now? Thank you
guys, let's give them a round of applause,
some encouragement [Applause]. And I will
introduce them so that you know who they are,
we have Jane Collins on the end there, chief
executive of Marie Curie; Simon Pearce, end
of life care lead for ADASS and Bee Wee, national
clinical director for end of life care and
consultant in palliative medicine. This panel
will be led by, chaired by Katherine Sleeman
from the national institute of health research,
she's a clinician scientist and honorary consultant
in palliative medicine. Thank you.
>>KATHERINE SLEEMAN: Thank you. Can you hear
me? So it is a huge pleasure to be here today
to speak about end of life care. The way we're
going to run this session is I’m going to
speak for about twenty minutes and then we're
going to open up in to a panel discussion.
I would like to kick off by telling you a
very short story. In 1951 a young nurse working
on a surgical ward at St. Thomas’ hospital
made an observation that was simple and radical.
The observation was that doctors desert the
dying, the nurse was Cicely Saunders. Cicely
went on to commit her life to transforming
how we care for the dying through foundation
of the modern hospice movement. 50 years later,
today, I think we need a new transformation
because how we die has changed. It's changing
and we're facing a crisis. A crisis not for
the hospice movement, this is a crisis for
the NHS. It wasn't much before Cicely's observation
that doctors had so little with which to do
their doctoring but much of what we did was
palliate, tend to the dying, but during the
20th century that all changed. As doctors
very quickly became good at something we had
never been good at before, saving lives. The
average human lifespan increased during the
20th century by as much as it had during the
preceding 30 millennia. And that changed not
just when we die, it changed how we die.
Because back when the average human lifespan
was about 50, most people died suddenly from
infectious diseases, death was a discreet
relatively unpredictable event. But for us,
and for our patients, death will occur by
stealth. We will live with chronic medical
conditions, heart failure, dementia, Parkinson's
disease, and our final weeks, months, probably
years will be characterised by slow progressive
deterioration. Living longer means dying slower.
Slower and with ever greater complexity as
we now have time to accumulate multiple medical
conditions, and we're at a tipping point,
because those fast increases in longevity
have left a surprising legacy in terms of
population projections, the number of deaths
that occurs every year in this country is
no longer going down as people manage to stay
alive for a little bit longer. In fact, it’s
set to rise, by about 20% over the next 20
years. That's an extra 100,000 people dying
each year, slowly and with complexity who
we will need to care for. Arguably one of
the greatest challenges our society, let alone
our NHS faces, is how we care for these patients.
And as you know, part of this challenge concerns
money. It's estimated that between 15 and
20% of total healthcare expenditure is spent
in the last 1 year of life. Well of course
it makes sense that we would spend the most
money on the people with the most complex
needs, but the question is are we spending
this money on the right things, are we providing
value for our patients and for society? The
value of any healthcare intervention can be
measured using this very simple equation,
gains in quality offset by increases in cost.
So a good example of a high value intervention
would be something like vaccination, it saves
millions of lives and costs very little. What
we want to avoid are low value interventions,
expensive interventions that don't improve
quality. So if we want to measure value, then
obviously first we're going to have to understand
quality and this is where it starts to get
a little bit tricky because you can appreciate
that many of our usual outcome measures improved
survival, reduced morbidity, may not be very
relevant when people are dying, well the best
way to find out what quality means, when someone’s
approaching the end of their life, is to ask
them and several studies have done just this.
It turns out that most people faced with a
terminal illness don't choose to prioritise
their longevity over everything else. They
want to be comfortable, symptom free, surrounded
by their carers and family, treated with dignity
and respect ideally in a place of their choosing
which is usually their own home, but I don't
have to tell you that all too often there
is a gap between what people want and what
people get. End of life care is a recurring
and consistent theme in NHS complaints, said
the ombudsman’s report “Dying without
dignity”. We need to close this gap between
what people want and what people get. How?
Well one potential solution is through palliative
care. We now have good evidence, randomised
control trial evidence, that early palliative
care, significantly improves quality for people
who are dying. So in these 5 randomised controlled
trials, the patients who received palliative
care, they had improved quality of life, improved
physical symptoms, less depression and better
satisfaction. One of these trials, the Temel
trial also showed that patients who received
palliative care have less aggressive care
overall, so they were less likely to attend
emergency departments, less likely to be hospitalised
and more likely to die in their own homes.
Now what is crucial to appreciate from these
trials, is that patients weren't randomised
to receive standard care or palliative care.
The intervention arm was standard care, and
palliative care. As an extra layer of support,
this isn’t about forcing our patients to
forgo potentially life sustaining treatments.
It's about giving them choice. So palliative
care improves quality, but value is also a
function of cost. Is palliative care cost
effective? Well, we now have increasing evidence
that yes, it is. In fact a recent systematic
review of evidence has shown that palliative
care is frequently paradoxically, cost saving.
So the extra expense incurred by the team
itself is offset by the fact that patients
are having fewer expensive interventions and
trips into hospital. And what is more, timing,
getting this in early appears to be really
crucial. A recent cohort study from the US,
showed that patients who had a palliative
care consultation within two days of admission
to hospital, had overall hospital costs that
were 24% lower. If that initial consultation
was delayed for just a few days, the cost
saving reduced to 14%.
So taken together, what these studies tell
us, I think very convincingly, is that our
historical model, Cicely’s model, of palliative
care as the bit that happens after all the
medicine has finished, is wrong. This model
is no longer appropriate. Palliative care
works best when it's provided early, and collaboratively
as an extra layer of support. So with my academic
hat on I’m very encouraged by these studies,
but with my clinical hat on and certainly
from the point of view of my patients I start
to see a bit of a problem, because my patients
understand that palliative care might help
them feel a bit better, but they also worry
that if they’re having fewer of our fancy
tests and treatments, if we're spending fewer
of our healthcare resources on them, then
they will also die a bit quicker. Well this
is the bit that has surprised everyone because
three of these 5 studies show that the patients
who receive the palliative care, lived significantly
longer than patients who received standard
care alone.
Is it because they were less depressed? Is
it because they were less often in hospital,
picking up our nasty infections?
Is it because many of our fancy tests and
treatments actually do more harm than good
when people are seriously ill?
The truth is we don't know, but what is clear
is that high quality, personcentred care is
a high value intervention, palliative care
works.
But there is a problem and it's of course
one of provision. It's estimated that about
that at a minimum three quarters of all deaths
in this country could benefit from palliative
care, that's 375,000 people every year and
it's going up. We would need to vastly expand
our specialist palliative care workforce in
order to even begin to impact on the number
of people who could benefit. Yes, a vast expansion
of specialist palliative care is part of the
solution, but there’s another part and I
think it starts with the people in this room,
because I....I worry. I fear that the NHS
is simply not taking end of life care seriously
enough. Last year the Royal College of Physicians
published an audit of hospital deaths which
showed that just half of NHS trusts had included
a lay member responsible for end of life care
on their boards even though that was an explicit
recommendation of the 2013 Neuberger review.
The same audit showed that 1 in 3 trusts provide
seven day face to face palliative care services
even though that has been a NICE recommendation
for more than a decade. A 2014 Royal College
of Nursing survey showed that just 1 in 10
nurses in community and hospital settings
felt well equipped to deliver good end of
life care. Access to social care, as we all
know, can be a lengthy, complicated process
and may result in potentially avoidable hospital
admissions, and yet, over half of health and
wellbeing boards don't include the needs of
the dying in their strategies.
A third of CCGs surveyed by the CQC hadn't
undertaken any assessment of local end of
life care needs. All of us, I will bet, work
in organisations that mandate training in
how to resuscitate someone whose heart has
stopped, but how many of us work in organisations
that mandate training in how to approach a
conversation with someone whose heart is about
to stop? We know, that if we have these conversations,
if we offer our patients choice, many will
choose the less invasive option. By not offering
our patients this opportunity we cause harm.
The current situation where some people see
a specialist palliative care team and the
rest take their chances on a bad death, is
not only unfair, unethical, it's also uneconomic.
We all need to become palliators, competent
in symptom control, competent in conversations,
confident to approach those conversations
before a crisis. The Neuberger review showed
us what can happen, I think, if we make the
mistake of assuming that just because something
isn’t high tech that it is low priority.
There is no short cut to good end of life
care, we need to embed it in our clinical
cultures. So I would like to ask you what
structures exist in your organisations to
systematically improve care of the dying.
How many of the organisations in this room
have an annual report on progress in end of
life care? What progress has been made? How
is that progress measured? Does your trust
board include a lay member responsible for
end of life care as recommended by Julia Neuberger?
If not, why not? How many of your nursing
staff, whether in community or hospital settings
feel equipped to deliver appropriate end of
life care? How many have access to training?
How many have received it? I know that there
are many areas where these things are being
done brilliantly and we can learn from them,
but I worry that even in these areas the pace
of progress is simply not enough to keep up
with our changing demographic.
94% of all deaths occur outside of hospices,
this is NHS core business. 40% of medical
inpatients have dementia, 30% of hospital
in patients are in their last year of life.
These people don't selfidentify as having
palliative care needs they’re on cardiology
wards, surgical wards, AMU. Are we asking
them what matters to them? What their priorities
are? They might surprise us.
There’s been so much focus over the past
decade on dying at home that sometimes I wonder
whether we’ve forgotten that half of all
deaths occur in hospitals, where the quality
of care is rated as "Fair" or "Poor" by 1
in 3, that's potentially 80,000 people each
year who our hospitals are failing. What would
our NHS look like? How much more efficiently
would our NHS run if we transformed this care?
This isn’t about adding cost burden or complexity,
it's about improving quality and efficiency.
Earlier this year the government published
a national commitment to improve end of life
care. What was not committed was any new funding
with which to do that, so we are going to
have to work with our existing structures.
The ambitions framework published last year,
sets out what good end of life care looks
like and the steps that need to be taken in
order to achieve it. Yes, we need to embed
end of life care in our sustainability and
transformation plans, and we need to include
not only evidence of need but evidence of
effective interventions and plans for monitoring
progress. Care of the dying isn't a niche
issue, it's a Litmus test for quality and
compassion, if we can't get this right, I
don't think we’re going to get the rest
right.
All of us in this room believe that people
approaching the ends of their lives have a
right to good care. The trouble is at the
very time when they most need our help they
are unable to ask for it. It's our duty, as
leaders in the NHS to anticipate these needs
and ensure that that extra layer of support
is available, whenever and wherever it's needed.
This is not about the last days of life. This
is about the last months and sometimes years.
Fifty years ago Cicely Saunders took death
out of the NHS to show us what good care could
look like. She did not expect us to leave
it there. We now need to bring death back
in. It's time for a new transformation in
how we provide end of life care and I think
we now have the knowledge and hopefully the
power to achieve it. Thank you [Applause].
>>CARRIE GRANT: Katherine, thank you, that
was absolutely fantastic to listen to, so
we’re now going to head over to a question
and answer session with the panel and of course
questions from our audience, so if you’ve
got questions, do let our ladies with the
roving mics, Caroline and Tracy are out there
somewhere, let them know that you’ve got
a question and we'll get it to the panel,
thank you.
>>JANE COLLINS: Just to remind you who we
all are, I'm Jane Collins, I’m chief executive
of Marie Curie.
>>SIMON PEARCE: Hello, I'm Simon Pearce, I’m
the end of life care for ADASS – the Association
of Directors of Adult Social Care.
>>BEE WEE: I’m Bee Wee, I’m a practising
consultant in palliative medicine in Oxford,
and also the National Clinical Director for
end of life care in NHS England. Shall I say
that? And we would have had on our panel with
us, Roberta Lovick, who is a person with personal
experience of end of life care in that she
looked after her daughter who died a few years
ago. Unfortunately she's unwell herself today
and has had to pull out, but she has asked
me to read a message out to you from her and
what she has said is that "Everywhere I go
I see a lot of good work happening, of course
there’s much more to be done, but there
are lots of people doing their best and working
really hard, I want to thank everybody for
what they are doing." Thank you.
>>KATHERINE SLEEMAN: And you know me, Katherine
Sleeman, from the Cicely Saunders Institute
at King's College London…..Sorry.
>>CARRIE GRANT: So have we got any questions
from the audience? Just got one down the front
here please. Thanks Tracy….or Caroline.
Who’s going to get there first? [Laughs].
>>FROM THE FLOOR: Hi, I'm Jules, end of life
care facilitator at Shrewsbury and Telford
Hospital and I'm very busy trying to improve
end of life care in the organisation I work
but I just wondered if you have some tips
really? We’ve introduced an end of life
plan in October 2014 and I've trained over
1,600 staff, but I still don't see as much
use of it as I feel there needs to be. I think
there is quite a lot of resistance since we
lost the Liverpool care pathway and using
new tools can make some staff quite nervous
and I'm doing my best to try and improve and
get people to use it and support them, but
what are your views really?
>>BEE WEE: OK, shall I start us off then?
I think the first [Coughs] the first thing
is to remember that tools are just that, they
are simply tools and actually this is a great
opportunity to change the way in which people
think about caring, not only for dying people,
but also for people earlier in that stage
in the journey because if you can intervene
earlier then you will build those relationships.
I think reminding staff that actually it's
that relationship, it's that encounter, it's
that moment that they touch with a person
who’s, who’s in hospital or who is an
outpatient or the moment they touch with that
person’s family or those who are close to
them, that every single one of those encounters
really matters, and I think if you can get
them to stand back a little bit and just get
back in connection with why they are doing
what they are doing, then actually the tools
are simply there as an extra layer, so I would
encourage that.
FROM THE FLOOR One chance message?
>>BEE WEE: Yes, that’s right.
>>SIMON PEARCE: OK, yeah, I'm from a social
care background you’d expect me to say that
I think the conversations are really important,
the challenge I think everybody faces, there’s
a culture change, where I think it's quite
difficult to have those conversations with
staff in hospitals or outside. And I think
part of the task of leaders in the NHS and
in social care, is to help people and I absolutely
accept the point about the Liverpool care
pathway, but to help people to have those
conversations, because it is the one opportunity,
and actually if you don't have them you’ve
really missed an opportunity, and actually
if you really want to make a good job of caring
and a good job of caring for somebody at the
end of life, if you miss that question, Katherine’s
very clearly set out what happens, so it's
an opportunity, I think it's critical to support
staff, it's not comfortable territory, but
I think, I think it's really important to
try to get across to people the importance
of taking the opportunity, because if you
forsake it we can all give examples of what
happens.
>>JANE COLLINS: I’d like to add a bit to
that, I mean again from what you’ve heard
from Katherine, the issue that I think a lot
of staff feel is, will this look as if I'm
giving up on them having this conversation?
But as we know, and we have really good evidence
now, that actually managing the symptoms alongside
what might be active treatment in all its
forms is very effective, and it means that
the person has a much better quality of life.
So I think those sorts of messages need to
get out much more because I meet lots of doctors
in particular who feel if they talk about
death the patient will feel I've given up
on them and that really is not the case.
>>KATHERINE SLEEMAN: Well I would also just
add quickly congratulations, well done it
sounds as though you’re doing a great job.
I think the LCP thing has been really difficult
for healthcare providers. One thing I've observed
in the sort of immediate aftermath was a lot
of people saying that their staff, nursing
staff in particular, were lost without it,
it had gone and they felt completely rudderless,
well in my mind that says that actually we
never had those fundamentals of good care
right and that's what we need to start with
the fundamentals of symptom control, the fundamentals
of communication and actually build up from
that layer rather than perhaps swoop in with
a piece of paper that could never make up
for that.
>>CARRIE GRANT: I think in the last few, few
20 minutes we’ve heard a lot about how difficult
it is to have those conversations. I’d be
very interested to hear from the panel how
do we make it less difficult to have those
conversations? We are admitting that they’re
difficult, I know when my mum died, everyone
was saying “So your mum’s….erm….she’s,
she’s….” and for you and you’re going
through it, it’s like yes she died. It's
in my reality, so how do we make those conversations
before death more comfortable? I’d love
to know your ideas, because you are the experts.
>>KATHERINE SLEEMAN: I would, I’ll suggest
one thing to start us off, and it’s time,
it’s probably the most difficult thing of
all to provide, but actually these conversations
do take time, end of life communication isn't
a single event, it's a process, it happens
once and then again and again, you build up
a relationship, and actually in the current
healthcare system, doctors and nurses are
so pressured in terms of time that actually
I think that is one of the, the most difficult
things.
>>BEE WEE: Thank you, I think if you look
across the system, I think there are two,
two areas we’ve got to look at. One is actually
normalising those conversations within society
and making that more, more conversations that
we have with other people, with, as part of
sort of society, and there is quite a bit
of movement on that front. But the other is
actually making it OK for staff to be able
to open up those conversations and to have
the courage to have those conversations, and
that’s not going to come out of nowhere,
that does come out of training, but more importantly
it comes out of rolemodelling. So they need
to be able to see examples of good communication
between senior colleagues, with patients,
with their families and so on, that's how
people will learn and that's really important
that we all take that responsibility and recognise
that the way we speak to each other, as well
as the way we speak to our patients and families,
is going to be mirrored right across the organisation,
from board level right down to everywhere
really.
>>SIMON PEARCE: Bee thank you, I think absolutely
echo the last point, I think it needs to be
an important thing in organisations, in NHS
trusts, in social care and care homes, that
these things are important, and management
need to prioritise them and make sure staff
are encouraged and supported to do it, and
to support them through their discomfort.
I absolutely totally agree with the point
about time, I think there's also, some people,
many of us have seen people who are good at
this, there's some skills that people can
acquire, it's also a conversation we have
to think about what we would want ourselves,
and what we’d want ourselves is not only
a conversation is about having all our symptoms
managed, and about bluntly how we die, we
also want a conversation about how we're going
to live before that. Because actually that’s
what people value, the opportunity to do things
to use that time, and to understand it. Now
that's not an easy conversation, but it's
not an entirely negative conversation. So
I think people can get an enormous benefit
from that, from both sides of that dialogue.
>>JANE COLLINS: And just building on what
you were saying Simon, I think we have a responsibility
and I was a clinician in the past, to have
those conversations because otherwise those
people will miss that opportunity to plan
with their family and friends in the way that
we would probably all want to do, it's not
just about writing a will it's about saying
things that perhaps you may, should have said
perhaps 20 years ago. In the past there was
advanced communication training, particularly
for oncology teams, and that evaluated really
well, there is good evidence that it helped
people have those conversations, the problem
is how long does that training last for? So
I think a more grassroots approach which is
sort of about setting how you should do it
from throughout the organisation and supporting
junior staff be they nurses or doctors or
any other clinical staff, let them see how
you do it is probably a more, a better way
to actually really embed that within the NHS.
>>BEE WEE: Sorry I’d like to share
just one more reflection on that because it's
just occurred to me that we’ve been talking
about them as difficult conversations, and
maybe that is part of the problem, that somehow
we need to demystify those conversations,
and if a member of staff goes in feeling I’ve
got to ask this person where they want to
die, well that's a pretty difficult conversation
to have. On the other hand if you are going
in asking what matters to people, what's your
priority? What's important to you right now?
That's a much easier human conversation to
have and I think we’ve got to try and demystify
it as well.
FROM THE FLOOR I am Ashood Hack, in my other
hat I am an ELC, end of life companion in
the local hospital which I enjoy thoroughly.
Your keynote speech was excellent, what's
startling is the death rate is going to rise.
Now could we have copies of your research
on that? Have you taken in to the equations
legalising euthanasia in that or do you think
there is a case for making euthanasia a legal
choice for people at the tethers of their
life?
>>KATHERINE SLEEMAN: So thanks for your nice
comments about the presentation, all of the
references are available on, I’ve got a
blog site [https://wordpress.com/post/katherinesleeman.wordpress.com],
and we can signpost that again maybe at the
end, it was on my last slide, that was office
for national statistics information about
the death, the number of deaths each year
going up. I think in terms of legalising assisted
dying that is a whole other conversation to
be had. My personal viewpoint is I think that
where the law is at the moment is the right
place to keep it, and I would rather focus
my attention on the 500,000 people dying,
the ordinary dying rather than the much, much
tinier number of people requesting assisted
dying. I do think that is an important conversation
to have, but I guess my personal feeling is
that we, the first priority is to try and
get end of life care for the ordinary dying
as good as we can get it.
>>BEE WEE: She wants to move on.
FROM THE FLOOR Hi I’m Robin Ghosh, GP from
York. The key person in our team is the community
Macmillan nurse that really I’ve got on
speed dial on my phone and regularly contact.
One of the biggest things is communication,
and is there a push nationally for our community
Macmillan teams to be on a similar IT system
to primary care GPs? Our specialist heart
failure nurses are, we, you know we, they
send us messages immediately and they see
our records we see theirs. Is there that push
nationally? Because currently it doesn't seem
to be there locally.
>>BEE WEE: OK, I’ll pick up on that one
then. So there is in that there is something
called, the acronym is EPACS, electronic palliative
care coordinating systems, it's a system rather
than being any single one product as it were
and the idea is that what, and that's already
happening in parts of the country where actually
the whole system is able to share the records
with the patient's consent, so that they can
do exactly what you are saying there. Unfortunately
it's not everywhere yet, but there, it is
part of the strategy in order to push that
out across the place. I don't know if you
were here for the session by Professor Wachter
earlier on talking about digitising the NHS?
And that's exactly the sort of thing that
we're trying to do, so yes absolutely.
FROM THE FLOOR Thank you, William van’t
Hoff from the National Institute for Health
Research. My question isn’t about research,
it's really a comment that so many of the
burdens in our society are being addressed
by partnerships between health, social care,
voluntary sector and indeed commercial private
sector, could you give some examples of really
good partnerships that are addressing end
of life issues? Or perhaps alternatively,
think about opportunities that could address
the issues that Kathy raised through such
partnerships?
>>JANE COLLINS: I’ll have a go William.
Yes partnerships are crucial in palliative
care, and actually there is a long history
of working in partnership across all those
different organisations that you’ve described,
I think one of the problems which we’ve
still not got right, even though there are
good relationships between the NHS, independent
hospices, places like Marie Curie, the directors
of adult social services et cetera, is that
we still find it very difficult from the person's
point of view to join up the whole story about
that person and their family. And so certainly
we at Marie Curie hear stories of people feeling
that there is a, almost a rotating front door
they’ve got because so many different people
are coming in to provide care. And that actually
was one of the triggers for looking again
at what could be improved and the creation
of the ambitions work. So, because so many
people were saying that to us, that it needs
to be better coordinated. Clearly, technology
should be able to help us but we all know
those of us who’ve have been in the NHS
that actually a technological solution can
be very difficult to deliver but we are still
on that journey. I think it would be fair
to say Bee? And we're, in some places we are
getting it right, so if we think about round
Worthing for example, that CCG have got a
particularly good plan, bringing all the parties
together to enable care to be delivered in
a seamless way for the individual, because
they don't really care which organisation
is delivering it as long as they get it. And
actually in Greenwich, we were the Greenwich
hospice and Marie Curie again are providing
seamless care, which is very much valued,
so we can get it right in pockets, but again
very typical of the NHS it’s very difficult
to do it across the whole of England, yet.
>>SIMON PEARCE: Just the comment I make on
I think is only that I think is absolutely
true those partnerships can work really well,
but they don't just kind of grow from nothing.
They do need some leadership, some drive to
get them off the ground, and I think they
can now be extraordinarily successful, and
there are people who wouldn't normally be
in the conversation who could bring a lot
to the table, obviously lots of people die
in care homes and actually care homes, quite
often, are quite good at managing end of life
because they do quite a lot of it. So there's
a lot of experience out there and in my experience
a lot of willingness to get engaged, but it
does take a bit of leadership, whether it
be the health and wellbeing board or particularly
professionals to push that partnership because
it won't just grow because there are so many
other things we will need to do, it will need
a bit of prioritisation.
>>BEE WEE: I think the reason we were all
waving madly this ambitions of course is that
it is a prime example of partnership working,
where for some of you were at the session
this morning, so apologies for this, but 27
national organisations across health, social
care, statutory sector, voluntary sector,
Royal colleges, specialist societies, CQC,
GMC, all of that came together in order to
develop it. What was actually very powerful
was that process of building that relationship
through this piece of work, is probably a
lot more substantial and long lasting than
we can quite describe here. And what’s has
happened is that certain localities around
the country have started doing that, so Cheshire,
for example, has already got a very good system
wide partnership for palliative and end of
life care, and then they’ve used this to
kind of look together to see what are they
doing and what is the shortfall locally together.
So I think it's about, it’s a ripple effect
that needs to happen really.
FROM THE FLOOR Hi I’m Alison Massey, I’m
one of the senior programme managers for the
modality vanguard and end of life care is
part of our programme. I’m interested to
go back to the conversation bit because I
absolutely agree with you that we need to
have the right conversations at the right
time that are compassionate, but I just wondered
what conversations we're having with communities
and society at large? Because these conversations
should start way before we get, we medicalise
death. So how are we supporting carers and
family, with people that have been diagnosed
with dementia, and understanding what their
care needs are going to be at a time when
they have capacity to be able to make those
decisions and supporting people to be able
to do that? I just think we need to take this
conversation a little bit wider and I’d
also like to reflect that I’ve done, cared
for a lot of people at the end of their life,
and 10 years ago this audience, these seats
would have been filled. Today, I was really
shocked when I walked in that it wasn't. But
because we had great conversations about end
of life and dying 10, 15 years ago and we
had pathways that worked and we were having
the right conversations, and now we talk about
tools, and DNA CPR, and they get in the way.
So I don't expect you to have the answers,
I’m just, would say to everybody here that
actually this is a bigger conversation than
the ones we're having in hospice, hospices,
within community services.
>>KATHERINE SLEEMAN: Thank you for that I’m
really interested by your observation that
we’re, the conversation has become, perhaps
become narrower, over the past decade. I don’t
think, well, I’ve not actually been in palliative
care for a decade, and I guess my impression
was that we were starting to have more of
these conversations through the work of things
like dying matters, and every now and again
there's something in the sort of mainstream
media or on the BBC, about end of life care
and every time that happens it’s a little
glimmer of hope because it is just pushing
that door open, for society to have conversations.
I agree that I think that that is an enormous
part of the step, there is no point in us
healthcare professionals going round and round
and round without managing to get outside
the doors of these institutions.
>>BEE WEE:I think it's important to note that
the number 6 ambition in the ambitions framework
is about each community is prepared to help,
and that’s exactly what is aimed at. It's
interesting what you say about this would
have been filled 10 years ago, I actually
think right now people are working their socks
off and that's probably a very good reason
why we may not be seeing as many people here,
who are actually they’re out there delivering
the care. They’re my colleagues who are
back home while I’m here. So that’s, I
think, is a really important, to acknowledge
a lot of this does take place outside of forums
like this but thank you.
>>SIMON PEARCE: I think the point about system
leadership is well made, I think obviously
the national cultural message, great when
it’s on TV, but we all work in systems,
and I think those systems need to take some
leadership about the end of life issue and
about how people are cared for and the quality
of things that Katherine talked about. So
I think there's something about health and
wellbeing boards, partnership groups, beginning
to have, give this greater priority and talk
about it not in as much about the minutiae
of advanced directives, but actually how we
see care being delivered across an area, across
a range of organisations. I think that will
help a bit.
>>JANE COLLINS: I don’t think I’ve got
anything to add to what they’ve said, I
agree with all those points and I know there’s
a lady with a microphone over there who wants
to ask a question [Laughs].
FROM THE FLOOR Hello, can you hear me OK?
I just, I just wanted to add on to what that
lady was saying. I just want to give a personal
story really about very poor end of life experience,
my father 5 years ago he had primary progressive
aphasia frontotemporal dementia. Very quickly
after diagnosis he lost the ability to speak
and to communicate so end of life discussions,
or any discussions about his wishes we couldn’t
have those discussions with him. He deteriorated
very very rapidly and despite, as a daughter,
identifying that my dad was rapidly deteriorating
and that, in my opinion, that he was approaching
end of life, I had to Google to look to see
if there was actually a framework for, or
a framework for end of life planning because
obviously as a mother and as a wife, you know
as a wife, my mum was unable to accept the
fact that my dad was vastly deteriorating.
So as a daughter not only caring for a father
and having to fight lots of systems, not only
did I have to try and get a GP to acknowledge
and have discussions with the family that
my dad was approaching end of life, we also
went for continuing health care funding which
was turned down because it was deemed that
his illness was a social care illness whereas,
in effect, he was slowly starving to death
because of the dysphagia and aphasia. My dad
never hit hospital systems because as a family
we believed in caring for dad at home but
we wanted that support to do that and that
support was sadly lacking because of all the
applications that we went through, everything
was turned down. Within 2 months of the application
for continuing health care my dad died and
he died at home in our arms and it was a good
death but it was a good death but basically
the final days, basically it was a mad rush
to get drivers up to the house because a nurse
came out and actually said “This man is
dying!”. Now this, you know, this, mine
isn’t the only story, I’ve since, obviously
I work for Age UK but that isn’t the guise
that I’m giving this story under, this is
as a daughter, but in the line of work, working
across hospital discharge aftercare and working
with people at end of life, sadly dementia
is one of those areas where nobody is having
those discussions and nobody is giving that
support to families and providing that input.
You know, is there something that’s in place?
I know dementia’s sort of one of the key
areas, but in getting that support out there,
that’s one thing that I’ve not noticed
a massive improvement in, so hopefully that’s
something that can sort of come forwards in
the future.
>>JANE COLLINS: Well firstly I think we’d
all say we’re very sorry about your experience
but it’s good that he had a good death with
his family but I suspect you were all absolutely
exhausted from what you were trying to do.
I think in the interest of time there is and
has been a tradition to associate palliative
care with cancer treatment and obviously people
with cancer do have palliative care needs
and palliative care grew out of cancer so
to speak. There’s been a greater recognition
over the last few years and that’s one of
the reasons why we at Marie Curie dropped
the cancer care from our name actually is
that many other conditions have palliative
care needs and some work we’ve done recently
demonstrated that people with dementia often
have quite a lot of pain which can be managed
relatively easily provided that’s recognised.
So I would have to say there is still a long
way to go and particularly for an older person
it can be more difficult to access care as
well but there is more recognition and we
have a responsibility to make sure that, as
Katherine said, that the 375,000 people who
would benefit from palliative care, they will
have all sorts of different diagnoses.
FROM THE FLOOR Hello, I just wanted to say
I’m here representing the Greater Manchester
and East and Cheshire Strategic Clinical networks
and we’re in the really fortunate position
of having funding for palliative and end of
life care. I’m on stand 82 [Health Innovation
Manchester], we’ve got a number of resources
there. I’m here for another half an hour
and then I have to go off to another meeting,
but if anybody here wanted to come and have
a chat, have a look at the work that we are
doing, pick up any of the resources, some
of which do respond to some of the issues
raised today, I’d be more than happy to
help.
>>CARRIE GRANT: Thank you. Thank you very
much. That seems a great note to end on, make
your way over to that stand. I’m guessing
that you are now here waiting for the next
session? That was great, I’m so glad you
got the last 10 minutes of this one, because
this one was a really important one. Please
let’s give a big round of applause to our
panel [Applause]. Fantastic session there.
You don’t want to be in the busy rush of
the Future stage do you? You want to come
to the Innovate stage and sit here and watch
it all on the screen. OK, well enjoy the next
10 minutes and then it all kicks off again,
thank you.
