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WINTERBOURNE REVIEW PROGRESS MEETING
07/12/2015 Coin Street
NOTES:

Sir Stephen

Unfortunately I was sitting next to a person who was

constantly coughing, and so you will see [] which means
something was said that I didnt understand or it hasnt
come out clear enough on the recorder for me to decipher
whats being said. So this note isnt for reference, but to give
you a flavour of the last meeting of the steering group.
The purpose today is a review of where we have got to really,
just over a year since I published Winterbourne View, Time for
Change. It was a really hard hitting report which highlighted five
years of failure. We let people with learning disabilities down.
We made promises to them and their families that werent kept
and frankly it wasnt good enough. Six months on from that I
produced a further report where again I highlighted the pretty
shocking lack of progress, still stubborn numbers stuck in
institutions and I said we needed to get cracking with closures
and we needed to scale up community provision that was the
pretty straight forward message.
I think we have now made progress. I was pleased with the
report, the plan that came out some four weeks ago. I think that
shows great promise. But it is against the background of that
appalling failure. It is against the background where still we
have the same numbers of people in institutions as we did at the
time of Winterbourne View. There is a lot to do and frankly this
is the last chance saloon because if we dont deliver on closures
and scaling up community provision there will be hell to pay.
I have recently conducted consultations which you will hear
about later, and I think there is a lot of hope that things have
changed but there is also a lot of cynicism because there have
been so many reports, including mine that have said great things
and made great promises, but as yet nothing has happened.
So today is really about lets see what actions are now being
taken. Lets see where the problem areas are. Lets see what we
are going to do about them and the emphasis this morning is on

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Jane
Cummings
(NHS
England)
[Slide 3]

discussions and dialogue. Im hearing from people in the room

about where they think things need to happen where they think
there are problems where actually we can find some further
progress and finally Im going to produce a year review report in
January which is going to build on a lot of the discussions we
have had today and consultations Ill be having, and so Jane its
over to you.
Thanks Stephen and welcome to everybody. I think this is
exactly as Stephen said. This is an opportunity just to take stock
on whats been delivered since this time last year and actually
last week I was at [] again which is where we launched Stephens
report and we held a workshop there around learning disabilities
and what the future looked like and Gavin Harding who was
working alongside Stephen was there and he was just brilliant in
terms of his ability to really get to the heart of what we need to
do and to describe it from a personal sense so that was really
constructive.
Im not going to say very much. Its much more important we
have the opportunity to go through the [] that was done and
colleagues and the key partners that we work with have done and
youll know that after the report was published last year
November all the key organisations did a response which we
published at the end of January and as a result of that we agreed
there would be a change in terms of the Government and also we
had identified actions from Stephens report that we said we
would work on and implement and I think the key today and the
discussions weve had with Stephen is this needs to be a brief
update and overview and more importantly discussion so that as
a collective we can work together to look at how far weve got
what were meant to be done. Is there anything else we need help
with or people support us with, and advise us on etc so that we
actually deliver on what we say and I completely get Stephens
comments that while people have welcomed the work we have
published at the end of October and that did land pretty well
there is a lot of cynicism and a lot of ongoing concern about, its
very easy to say but very difficult to do and people we accept are
completely fed up with being told this is going to happen and it
takes ages although we also have to recognise that this is
complex, this is difficult and for individual people it can take
some time to get those [] in the way thats [] and appropriate.
I will stop there as I think its much more important that we

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actually look at what we got. Youll know there are some slides
[] the evidence [] maybe the NHS and others do that more often
but thats the agenda weve agreed with Stephens office so well
follow through that. Is it worth just checking whether everybody
knows where everybody is? Would that be useful?
EVERYBODY BEING INTRODUCED
Sarah
I was just going to start by talking a little bit about the first two
McClinton
work streams: the empowerment and the data and information
(DH) [Slides work stream.
4-9]
Proposals within that, which includes strengthening range of
statutory guidance, piloting access to a named social worker, so
someone who can work in a relational way with families rather
than a [] model which is much more about process. The idea of
these pilots is actually to see what the benefits will be if you have
a social worker who is working with families over a period of
time, getting to know them and thinking about planning in the
future with them. It also includes some thinking on how we
exercise the Care Act and the market shaping duties within the
Care Act and how that also applies to joint planning
arrangements between the local authority and CCGs.
The second phase of work sets out some changes to
strengthening the rights of individuals and families within the
context of the Mental Health Act and so setting out really how
we might go further from the revised Code of Practice which was
published last year.
One of the proposals for example was that the Code of Practice
should apply to CCGs as local authorities already applies to and
also within that thinking about the potential for single advocacy
model so we also have the Law Commission working on their
report in terms of the Mental Capacity Act and the proposal
within that, that we want to think about alongside any changes to
the Mental Health Act. And then the third [] areas is to make
sure that if progress is not being made, and that progress is being
monitored closely by Ministers, so part of the Secretary of States
delivering meetings and also monitored through the
Transforming Care Assurance Board which is, many of you will
be familiar with that, co-chaired by the Minister and by someone
with a learning disability, and the Board essentially is made up of
mostly individuals and families, and so its a very close
monitoring programme with that process.
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So the third phase we looked at what else might need to be done

if we dont see progress through building right support that has
been set out. So moving on then to data and information theres
been lots of work done to improve the quality of data and
information, where we continue to see the data growing stronger
in terms of its quality. Theres some work under way to look at
empowering [] a wider cohort of people. They call it at risk on
that slide I think probably theres a better terminology, what
were talking about is how we make sure were looking at a
cohort of people where we can make sure weve got the right
preventative measure in place. Its not just simply theres people
already inpatients.
Theres work going on that, and work to develop quality of life
and quality of care indicators so that the sort of measures we use
ensure progress is being made, its actually based on peoples
experiences in terms of the difference it makes to their lives and
the quality of care they receive and the other piece of work
within this work stream is looking at barriers to information
sharing. So we know that some of the legislation doesnt help us
in terms of sharing information across the system and theres
been work done to develop a consent form that will enable us to
make sure that at local level information will be shared
appropriately.
In September this year we run the third census to provide
information about people inpatient services and thats a different
collection from the assuring transformation collection which is a
commissioning collection so there are some differences in these
two data sets. It enables us to triangulate to get richer and deeper
information about peoples experiences and inform how we want
the data set to work going forwards.
Ive already mentioned some of the work going on to tackle the
information government issues and as I said were also working
to develop a set of indicators that can measure the quality of life
and quality of care effectively so that work is predominantly
being done alongside families and individuals and as part of that
theres a workshop this week very shortly that will look at what a
patient input outcome or patient input experience measure might
look like and how it can be incorporated into the CTR process
and to the care and treatment review process.
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So Im going to pause there for discussion and will run through

to CGC.
Theresa
Joyce
(CQC)
Regulation
[Slides 1012]

As you know CQC is one of the partners in the transforming care

and delivery process and our function really we inspect and
regulate health and social care services and that involve three
things [] one is inspecting services as they are, one is taking
enforcement action for services that dont meet the required
standards and the third and important is registration of new
services.
So lets say a little of what weve done from each of these three
issues.
I will start with enforcement and clearly I think were all aware
that when a service may need to change or close significantly its
not always clear the role of all the partners in what should be
done and who should be doing what. So weve been doing some
work on trying to get a sense of clear responsibilities of each of
the agencies that may be involved in that process and we have
produced a statement on the role of the partners when
enforcement action is taken and its been developed and its out
for consultation and it considers what each of those partners
should do. So in terms of commissioners they need to be
thinking in terms of placement and specialist teams to go in and a
whole host of other things. And were trying to allocate who
should lead on what and the commissioners in the room will be
pleased to know that a lot of the leadership will come down to
commissioning because actually in the end they are the people
who purchase the services and they have responsibility for what
they are purchasing. The CQC needs to take the lead in actually
helping commissioners think about [] service and other issues
that providers say anyway that up for consultation and we
hopefully will get something much more finalised in the next
year so that the main piece of work on that.
Were also as you know using warning signs data to identify a
services where there may be concerns so we look at safeguarding
data we look at [] and actually further work is underway to try
and see what other signs we can see to try and help us identify
those services where there are problems. We worry about a
service that makes no reports on safeguarding probably as one
that make a large number because that service is not noticing

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whats going on.

In terms of inspection methodology theres been a lot of work
looking at hospitals and our aim is to support inspectors in
analysing what good looks like in learning disability services and
[]domain the CQC looks at which Im sure youre all familiar
with, safe effective [] well led. So weve developed a number of
methodological supports if you like, so were looking at learning
disabilities specific table for gathering evidence in relation to the
five domains specifically in hospitals. Some of you may have
experienced or know about the comprehensive inspections that
we do when a team of 80 people descend on poor unsuspecting
trusts and [] when actually we need to have structure to enable
people to make sense of [] so we make a lot of work on helping
people structure what they ask and bring back and corroborate
the evidence. Were been doing learning disability specific
training for inspectors on communication and how we
communicate effectively with families.
Supporting living services are a real concern to many people and
there is guidance being developed on how to inspect supported
living services and Im sure everyone is familiar with the reality
there are many people with complex needs who may be in
supported living and supported 24 hours a day. The reality is
legally thats their tenancy and legally CQC has no right to cross
their thresholds unless they give consent and as you will also
aware many people may not be able to give consent so were
working on how we develop the methodology that will allow us
to ensure we really do see those services and were looking for
indicators like 24 hours care and support so theres work going
on and actually theres a pilot on how were going to start doing
that more effectively starting from next year. And wed have
completed brief guides for hospital inspectors on: [see slide 11].
I think some of you have seen some of those. And the last one for
us is registration and the aim of this is to align registration
services with the Transforming Care service model and National
Plan. So what weve done so far is the Learning Disability
Programme Board within CQC now as you probably know and
were asking all learning disability applications are considered by
a dedicated team within registration division within CQC and
because the service model is now able to ask much clearer
questions about how the service is complying with the service
model. We have a position statement on the CQC approach to
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Questions Marcella

ANSWER
from
someone
from DoH

registration and new registration which will be published on our

website this week and it says things like but it actually says that
new applications will be considered in how they comply with the
service model and it also says if you are seeking to reregistering
existing service we will compare it again to show it aligns with
the service model and wed want to make sure youre making a
change in line as oppose to changing your name and thered be a
full policy statement developed hopefully within the next couple
of [] but we wanted to get the statement out now so that
providers already making applications are clear that actually we
have a position on this and its in line with the transforming care
service model.
QUESTIONS?
Can I say just ask about the social worker named. Its a good
idea but it seems to me that were going backwards and forward
as before we, as families, have been asking for years, can we
have a social worker. I mean so far my son has had about six
different ones and he displays everything were arguing about
here and I just dont understand why the local authority
themselves cannot think this is the best way to go, because if you
have a social worker this is the person you have to go
otherwise we have to repeat the same thing again and again, so
for me were going back to the past because thats how it used to
be.
Remember therell be lots of individuals who might have been
receiving a specialist service and not going anywhere near their
local authority so part of what DH is intending in those
recommendations is that local authorities have got new and
additional responsibilities about the availability of social workers
is a particular new role and defining in a particular way and that
might not be apparent on what was being said so far.
I think what Id also add to this is its a pilot and its the
opportunity to test actually advocacy and what difference it does
make and what should be the future model.

Sir Stephen
Viv

But thats very different from advocacy social workers arent

that its a very different issue.
My question is about advocacy on slide [] it says [VIV was too
far for the recording] but actually families are saying that
people dont have access to high quality independent advocate so
where are those people coming from because it says here again
they could have access to them how will that []

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Answer

Question

Answer

Sir Stephen

Alison

Answer

Alison

Weve set out within the service model that [] in terms of the
different types of advocacy in the system and whether we should
be considering a simple model in the future []
Just a quick one on the CQC. Does that mean if a provider
comes up with something that doesnt conform with the contents
of transforming care and the service model, that will be refused
or turned down that will be fabulous Im not arguing with it.
We did get applications from providers who wanted to build very
big services that arent really locally integrated in any way at all.
Its very difficult because sometimes theyve built them before
they come to us and I think now that we have a position
statement on the web which is publicised it will be much easier
for providers to know this is going to be something they will find
difficult not impossible because actually we have to register or
not register in line with regulations but actually the regulations
talk about premises, they talk about person centred care and
various other things so meaning better care we cant just say no
were [] leave in doubt but actually none of those models will not
meet the requirement of the regulations so we have to be very
careful in ensuring that were looking closely at the regulations.
There are times when that has happened up till now weve done
it as part of commissioning saying no were not going to
commission that service so the combination of commissioners
not commissioning and the service model []
I think the CQC being very hard on this will indeed be welcome
and it will be good if we start deregistering places like St.
Andrews.
I was looking last week for information for families about CQCs
role and about the standards they look for and so on and I was
thinking it will be really helpful if all the information was put on
the slides would be in one place at the CQC website thats easy
for the public to find. I dont know if thats the intention but it
will be great to put in.
The enforcement work wont be on the website until weve done
it. The position statement were hoping to be on the website by
the end of the week and certainly it has to go through internal
process and its nearly at the end. Were going to be sending out
the information to providers and the forums so it will be going
out at the end of this month. Then a full policy statement will
follow.
I was thinking about the range of guidance that was up on the
slides I was thinking for families who are looking for guidance

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Sir Stephen

Kate
Answer

Sir Stephen

Sir Stephen
Fiona Clark
NHS
England
Right Care,
right place
[Slide 13]

on how services are being assessed it will be really useful to see

that up.
One question from me on the slides about progress on
empowerment it was very interesting when I did one of my
meetings in Leeds with people with a learning disability this was
with CHANGE theyre produced an extraordinary good easy
read guide for people with learning disabilities about how to
challenge the system and get out of institutions etc and
apparently although that was funded I think by either NHS
England or DH no one is funding it to be distributed to people
with learning disabilities and they were told this is the MENCAP
thing by the way and theyve been told there isnt any money to
distribute it. Am I right Kate? I think what its called.
The independent []. It was produced for the JIP. It was the
original one.
Its taken a while to get in the [] but Im not aware there are
barriers to it being published and certainly we expecting it to be
published. So Im not quite sure where thats coming from.
Perhaps you and Kate can pursue that with CHANGE. It was
actually extraordinary good for the easy read stuff.
I think its the CHANGE document youre referring to [] were
worked quite hard with CHANGE to get it in that position []
That was very helpful can we move on to Fiona.
Im assuming people have the slides in their packet, what I
wanted to do was talk about the work stream that is snappily
titled, Right Care Right Place which encompasses the work thats
being led by NHS England and ADASS and LGA. Weve
allowed quite a lot of time this morning on Building the Right
Support which is what happens next but taking Sir Stephens
challenge its very well talking about the future whats going on
now because that matters too. My sole purpose is standing here
to draw your attention to the things were doing at the moment
primarily NHS England led and just to not because I wish you to
read all the detailed data thats on these slides but I wanted
competent assurance that were taking very seriously whats
happening out there today in addition to working out what we
need to do for tomorrow. I think this slides talk about the work
on inpatients and I will literally turn over the next few slides
because I believe the [] is data rich.
The things we talked about pretty much on a weekly basis and it
leads you to the commissioning team on a daily basis []
inpatients and people in hospitals. As some of you were aware

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we had quite a challenge last year to actually [] not being able

to identify people who need care and support but lets be honest
we didnt know who they were, and so weve spent quite a lot of
time and effort with the health commissioners and HSCRC to
reduce the number of [] record [] and paperwork we cant find.
So you will see that as we find people that should be on the list
years ago the numbers go up, but this slide which is the slide we
look at in discharges we are seeing admissions fall [slide 15].
We are doing quite a lot of work across the entirety of the
country to reduce the people going into hospital we have to get
them out as well but were doing quite a lot of work on stopping
people going in. You will see that the blue lines on the slides are
number of admissions at the time and that is actually us doing
what were supposed to be doing keeping people out of hospital.
You could argue about the accuracy of the data and we wouldnt
disagree but actually were reducing the number of people going
into hospital.

Sir Stephen
Fiona

Hazel

Sir Stephen
Hazel

Fiona

Care and Treatment Reviews

Can you just pause? Whats the difference between discharge
and transfers? Does that mean theyve moved to another place?
Transfers are indeed moving to a different type of setting and we
have a different type of data capture challenge we will go away
come January is that the system captures data and cant tell the
difference at the moment. We have just designed a new technical
solution that can tell the difference and that is now being used
and with effect from January it becomes mandatory.
A transfer doesnt count as a transfer unless people are moving
downwards in their level of security. So somebody will count as
a transfer from high secure to medium secure, medium to low or
from low to locally commissioned.
So it wouldnt be just to another unit
No. Not in a similar level as otherwise it will count as an
admission or for moving up or people getting more unwell or
were not [] as we should so that will count as an admission, and
if were moving downwards that will class as a transfer.
From January it will be mandatory to complete data capture in a
way to allow us to tell the difference. Care and Treatment
Reviews is a mixture of really powerful information and quite a
challenge because we actually need to make sure that now an
account of these 2,000 something of them were now in a much
better grip weve also identified sticky cases of individuals []

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hard to get the right care and support. We have just finalised the
care and treatment review policy, having been designed this time
last year and tested both on [] and pre-admission. Finalised
policy published on 30th October. The next plan will be a proper
audit of what is going on and the actions which have been swept
up and created part of care and treatment review to make sure its
not just [] people discharge in the past. Two things at the bottom
what the Care and Treatment Reviews tell us we have to do next.
Criminal justice. Nobody can pretend we are yet where we need
to be on handling [] criminal justice system and there are
individual cases which are sticky in that they require a great deal
of care and support that [] yet ready and able to advise and []
make sure those have impact we want but what is encouraging if
we can catch cases where are [] that is what is making the
difference.
As an illustration of things we look at internally you know last
year we talked about 2014 [] we are meeting the needs we set
out. The other area we talked.
[Im stopping here not easy to understand] but look at
Slides 13-24 and the speaker who came afterwards
recording not very good]
Workforce
Update Lisa
Bayliss-Pratt
and Ashok
Roy

See slides [25-47] [This was also difficult to pick, especially

Ashok so lots of []]
We have a total patient cohort of 2,500 people that were trying
to manage, we also recognise there are ten times more than that,
25,000 people that are at high risk of being admitted so that will
demonstrate the task in hand and how we have to tackle the
whole workforce not just specific [] of it. We working really
personally and valuable in the relationship with Skills for Health
and Skills for Care and we think the PBS training has been
particularly successful and Ashok will talk more about it. We
talked about the education and training of learning disabilities
workforce a little bit through a link that unfortunately didnt
work but its interesting for us that the learning disability
workforce of the future because I dont know whether people
know about the changes following the comprehensive spending
review with regard to behaviour term, medical workforce so
nurses, AHTs and therapist we dont have to send levers all the
time because thats going to [] market so we wont say we need

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15,000 learning disability nurses or mental health nurses that will

be [] market how do we know what the right workforce should
be moving forward and I think what we will move towards is
more scenario planning and workforce modelling, but actually
the [] of how many people should actually be in the system at a
particular time or place will change for us so its important that I
highlight that for you.
As a result of the comprehensive spending review and indeed the
lobbying of universities UK and the council [] for Health there
was a view that workforce planning has never been successful
and actually wouldnt it be better if the non-medical workforce
paid their own fees and tuition grants like other students and
access different financial support mechanisms and that sort of
gain a lot of momentum in light of the money that we had to save
and as a result that was agreed that would be the approach
looking forward. Now as you would expect it has caused some
noise and disruption amongst [] nursing, and they are lobbying
the government but as it currently stands that change will happen
and its more about how we manage that change, not to stop it or
not.
The good news is the medical workforce will still be carefully
committed as it has been all these years and we get it so right
dont we but there is the perfect need between needs and
supply.
[Ashok] The way we are working now one of the concerns that
has been expressed this is a health led programme but it is
actually trying to promote social care and a social model of care.
I spent the first six months of my link with HEE saying yes,
were dealing with this post as well, and through this were
working with partners, Skills for Care and Skills for Health
whom we work pretty seamlessly now. Our main programme of
activity. Heres what happened now. [see slide 27] that is the
person providing the care and the next box the blue box that is
where the quality of the service either happen or doesnt happen.
That box is the space which defines the quality of services if we
get it right well get everything right, if we get it wrong well get
everything wrong.
The person with a learning disability comes with a range of
needs which is on the right hand side and then to go to the
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bottom were supposed to make the workforce somehow

understand those needs and be prepared to meet them and then
provide the skill workforce which then goes to the left hand
corner and then meet the needs.
The problem is that if we dont understand the needs of the
population then we can never match the needs with the skills of
the workforce and I think we still dont pay enough attention to,
we [] ten people in hospital can we have 20 care staff, 40 of this,
40 of that, without really not knowing what the persons needs
are or the needs total of the populations are in a way that is
understood and can then be transferred into an educational
package which can make a difference in the top left corner. Im
just going on about it because I really feel quite passionately that
we spend a lot of time actually talking about I was telling Lisa
yesterday we get some staff around, what were supposed to do
in our job and leaving it up to Lisa, we need to find more Lisas
but no one dares ask whats the actual problem? Have they got
autism, have they got dysphagia have they got depression, have
they got something else and thats [] talk about.
Now on the blue stuff which is quite lengthy is about various []
we use to try and get [] you know one of the things Ive learnt
over the years is no matter what you do something will not work
these links I knew it wouldnt work, it didnt work in my
office, it wouldnt work here. We sent an email to somebody
saying can you make it work, so sorry you wont hear about Alex
today but you should, you can actually download it and see it,
and its a good way of describing somebody but today Ill talk
about Craig.
Now this guy its not his real name but its a real person I
encountered four or five days ago. Hes 24 years old and he lives
at home with his family. Hes got mild learning disability. Hes
got autism and I was told hes psychotic. The story was quite
horrendous actually. The consultants in the mental health
services in my patch [] says can you transfer this guy to your
ward. Why? Because the acute medical ward has [] medical fit
for discharge and hes too disabled to be in my ward. I said
whats the story so she says apparently. I said why is he in a
mental hospital? He had deep vein thrombosis. I said why has
he got deep vein thrombosis, he 23. Oh I think he didnt move
much and thats why he got DVT. I said why didnt he move
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much? Oh he had some medication. I said what medication? He

had [tresopine troxpoxal?]. What he got [] for? He wouldnt
respond to anything else. It made him supine, got DVT, got
embolism and he got completely very ill indeed, and next think
you know hes got a [] impact. So anyway, I said whats the
history? The history was that he had a similar episode a year ago
which lasted two weeks, but this one lasted two months. I said is
he well enough to be on the ward which is certified [] yes, but the
physicians want him out. This is just, his father says we cant
have him home, well take him to a hospital, but I said home is
better, well hospital isnt bad but home is better. So what
happened then was we then decided we would get a few things
going which is basically stuff like this. So what was the
appropriate needs assessment in this guys case and what it
turned out to be was get him mobilised properly and he was on
anti[] he also had his bag, hes also pretty zombed still and he
had to have frequent blood tests because thats what you do as its
toxic antipsychotic meant for keeping []. I cant tell you the
amount of times Ive met with people on tresopine []. What they
have is autism with a tendency to fly off the handle, have
meltdowns and talk and behave really, really strangely which to a
mental health professional looks like psychosis.
So the idea is how do we get this guy off medication and later
decide whether he needs something for anxiety or not but can we
avoid antipsychotics. Why was he having psychotic episodes
was because there was some staff changes in the hospital and that
led to the changes. This kind of picture is so common to people
who have autistic children that this things happen. So the idea of
to look at the activity level, and see whether he would cope. So
what we wanted to achieve a stable level of functioning, see if
we can good physical health medical, have a life more akin to a
23 year old life, reduce the level of challenging behaviour by
giving the family tools to compute early warning signs and
professionals will share that information with the family so that
everyone is working from the same hymn sheet and then to look
at what this guy really want to do what he likes doing and start
looking at activities that are structured and also beside what he
does next as well as perhaps looking at short breaks for the
family as the family needs to get away from time to time. So I
just want to start with that to tell you the kind of support this guy
needs is very very carefully linked to his actual needs and his
needs are not simple or complex if you know what to look at.
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This kind of assessment can be done in minutes can formulate in

a minute because of the scoring, but if we get it wrong it could
take years to work out what to do.
Lisa
The point I found quite fascinating about the story apart from a
Bayliss-Pratt catalogue of things that should never have happened was when I
said to Ashok, well how did the staff manage this then did they
need lots of skills to think differently? Actually it was the
champion that said lets ask questions and lets think about things
in a different way which I think is quite reassuring we dont need
to complete [] again with our workforce actually, we required
champions and then support for people just to think twice about
doing what they normally do.
Ashok
We keep saying, Right Care and Right Place, but what we should
be saying is right skills and right needs thats what we should
be saying. Thats what it is about.
Marcella
I was just going to say the basic lack of understanding of our
children, seriously, because if you understand anything about
autism, what youre saying to me is a horrific story, one that
should not have been going down the path that you are speaking,
and as a parent I am sitting there absolutely gobsmacked about
the whole thing. It should never have happened.
Ashok
The good news is where I work perhaps Salford is always seen as
number one so we [] number two.
Now lets talk about the Key Programme Areas [slide 31]. The
first one is the Education and Training for LD Workforce. Here
were talking about two things. The skills and competency
framework which we were talking about. We have basically
drawn up a framework on a pathway model so you have [] end of
a service, [] and then providing the support they need, making
sure theyre alright. So that help [] the competency framework
base and more recently Skills for Health and Skills for Care we
are now developing a skills framework to map education
curriculum.
The next thing I want to mention to you is the autism and PBS
training fund of which weve got some money ready fortunately
from the Department of Health. We had a lot of interest in this.
This basically is a client centred approach to training, so
applications are based on actual people who are either in hospital
getting out or coming in and they are then [] for training the team
around the person for positive behaviour support awareness these
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things need to be linked. Thats still ongoing but I can tell you
we have two rounds of application. The first round we awarded
86 out of the 120 odd applications we received, and we offered
230,000 then and the average cost of training was 2 or 3
thousand pounds per person so a lot of people got benefit from
that. The second round is ongoing now the last date is tomorrow
and weve got 40 applicants already, and the beginning of next
week to give the rest of the money out. So thats going to make a
big difference. There are some applications from Calderstones
also to get about eleven people out of there. So its all
encouraging giving funds to the right part of the service.
The last one is about inspiration videos from leaders. I think
there is no secret in this room ultimately you can provide all the
skills you want, all the financial you want all the opportunities
you want but without leadership nothing will work. Leadership
doesnt mean people have a director title or a manager title its
people working on the ground in teams who have to have leaders
and thats why I want to make sure that people understand
leadership is right near you, right near the person rather than in
an office far away.
We did a - its a project from West Midlands which was a
learning disability awareness resource which can be downloaded
onto a mobile phone actually, its very popular and it was
generally very easy to use. And there was also - and it made
available autism awareness resources from a number of [] which
can then be used including awareness.
Now the next slide I just want to talk about briefly is whats been
happening at the Fast Track Sites [slide 35]. And here, we were
developing a workforce, the commissioning specification for the
workforce and guidance and this guidance is now built into the
building the right support and the national plan so this [] as the
plan gets revised and developed so the workforce plans that go
with it. So we basically did a lot of workshop across the fast
track sites and established a theme that would do this but of
course now whats happened is we have now moved now to the
transforming care partnership that Julie talked about. Now what
was coming out of the fast track sites that we met with them was
that, see that last sentence in the first paragraph competency
based approach rather than a professional mix so just say I want
4 therapists, 2 psychologists, 5 nurses and 1 doctor. What does []
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actually want. They want awareness of autism and ADHD. We

want awareness of local [] we want awareness of local education
and social implications openings etc etc and then create a team
based on those competencies rather than traditional approaches.
So thats the kind of things we want to move to.
We dont actually in this presentation theres not been as much
emphasis given as we have out there on the development of
commissioners.
[Julie] and just to say that with the fast track sites weve got
people now in local educational and training working very
closely with the team and were having a conversation about how
would you do the local educational and training differently given
that the service model is happening in front of our eyes.
[Ashok] I quickly want to mention a project we are wanting to
do, to the model of training family carers and paid carers at the
same time with the same material and thats something were
doing with the Challenging Behaviour Foundation. And I think
what you will find as time goes by, that we become more and
more enlightened about what to put in the support, the correct
time and the correct place. We are looking much more at
families than we do so far. At the end of the day although its a
tiny population most of the families are not in paid care anyway
and thats where the problem often start.
Now lets talk about this getting on to transforming care
priorities [] now here we have in this slide, in summary the stuff
we are doing. I think I just want to [] workforce planning and
workforce modelling. Workforce planning is what were used to
[] taking x number of this [] Workforce modelling is much more
of a dynamic approach where there is a functional mapping of
services to see what the needs [] actually are, what is the user
profile and how is that being recognised and met. And then
were trying to make sure that the workforce or the skills based
that surrounds that client is actually future proof and enable to
anticipate problems and anticipate the course of that person over
the next six months or twelve months or whatever and it is
critically based on the model that we have now that is developing
as a result of the national plan. You remember I mentioned the
competency framework being sort of pathway based and this is
what this one is about [slide 40]. The first on the left, promoting
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appropriate access to services is the first step. [] Thats the first

range of skills that working in the services and broader []. The
whole workforce needs to be sharing that as well as with
families, carers and general services. The second one,
assessment formulation and treatment planning so thats the
second set of competencies. Then you consider enabling health
interventions, family and carer interventions and on the right
hand side, accommodation of welfare and therapeutic
interventions as one umbrella of intervention based competency
and that comes together, okay. And then you move on to
monitoring and measurements on the bottom right, and here we
talk about role support interventions development. So thats the
way the competencies are based and really depending on where
you are in the hierarchy of the service you get different levels of
[] I think thats the only way I can explain it to you, so therefore
when you, we talk a lot about the work that has been pilot in the
West Midlands but its about doing a learning needs analysis of
the workforce in view of the competency being worked and then
decide what particular areas of [] for development in the
particular workforce thats how theyre to be used based on
that approach. And then we come to the model [slide 41] the
idea is to keep pushing the arrow to go in the right hand side. On
the top and blue you have different types of model [slide 41]
Learning disability team with all its professionals, having
varying levels of integration with either mental health services or
the intensive support team and some of the crisis team. These
three models are essentially styling different levels of integration
and style of joint working between each other. So I suspect as
time goes by and the [money] takes hold next year this is what []
Then you come to this slide the second bullet point [slide 42]
that is to identify the [] structure of the skill person who is
actually very near the person needing services because what
parents tells us and families must tell is they have a child with
complex needs who may be an adult complex needs or whatever
and the person who provides the care doesnt really understand
them [] that they have to go somewhere else to get their
supervision skills or whatever and theyre wanting to bring the
skills as near the service user as possible but the person who
comes to provide the personal actually understand fairly complex
disabilities and this is where the assistant practitioner approach is
being developed to have a support worker for certain [] this is the
practitioner who is very near the person and understands whats
going on and the more specialist levels where the input comes
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from the learning disability team or the support team so theres a

kind of and its not a health support worker but just a generic
support worker.
The question is how theyre going to pay for this because once
you acquire skills you become quite expensive, but on the plus
side you need fewer such people because youve got a more
intelligent approach to dealing with complex needs. The other
thing theyre looking at is to identifying the skills and
competencies required for the crisis function in recognition of the
team model that I showed you on the previous slide. So where
are the skills in the system? Are they with the team itself or are
they with the support service or are they somewhere else in the
mental health service.
The next two slides are actually trying to talk about the demand
factor and the supply factor.
[WILL END THERE cant understand what hes saying]
Sir Stephen

Steve

I think at our last meeting there were certain issues around

workforce development so we want to look at this today so
comments.
I notice a pattern in the West Midlands because I went visiting. I
have two concerns about the documents currently being
described. If were not careful the need for social care workers
will be downgraded against the needs of medical clinicians partly
because of the money and partly because of how these things
tend to pan out we need I dont know between 8 and 10 thousand
skilled support workers if were going to deliver [] and there
seems to me in the presentations we have today a sort of []
between population based approaches to things and [] and maybe
we could do both as once because clearly we do need to deliver a
service around somebody with the people they know that they
recruit with the appropriate skills but I know other [] do we wait
for that to turn up before we train the staff. So we need to have a
population based approach in this area its likely that we need
these sort of skills [] but I dont see that approach in social care,
workforce planning [] here is Lisa shes just left hospital with
dysphasia [] no other [] of the world we do that we normally
have a group of people to support you now you might recruit
some of your own staff as well but we dont wait for somebody
to turn up we train the workforce first and if you had a well-

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Marie

trained [social care?] workforce they can deal with a whole [] of

things with families and carers that means you dont need to go
anywhere near specialist teams and if we dont do it relatively
quickly the whole programme with fall over on the back of not
having enough support workers, practice managers, practice
leaders all that stuff and if we dont start soon you wont deliver
that [].
Marie is here from Skills for Care and they do do workforce for
social care and health care and were trying to work through how
to get a better prediction of actually what you need but [] youre
obviously part of the programme with us and whats your
thoughts about Steves points around care and support
I think Steve articulating exactly what we said all along it needs
to be a number of directions you cant do it in one direction. We
know there are relevant skills that people need to learn they have
to do very specific to that individual theyre supporting, there are
skills they need to learn in advance and they know already.
[There were questions around workforce but some of the
questions and answers didnt record very well]
It might actually answer some of the other issues that have been
raised to do with the core skills and training framework for
learning disabilities services and what that framework will do if
it was actually defined the content and quality of the curriculum
and the learning outcome but by its very nature its structured in
three tiers and the first tier is very generic its very much about
awareness and so it has the facility to work beyond the health and
social care sectors and actually address the workforce
development needs in for example the justice sector the local
authority and a whole raft of other areas where people may well
engage with an individual with a learning disability or indeed
their carers, and so actually development of the core skills and
knowledge framework is a very exciting development in terms of
supporting some of this broader learning.
I just wanted to say the place we start from with this is widely
differing assumptions about how services should be run in
different parts of the country you can see that from what is going
on so if you ask every local areas to do their own evaluation of
their workforce modelling they will come to different answers
because they think different ways about it. You need to build
some sort of cross fertilisation mechanism into it in order that
people will begin to understand what the things they dont have
in their area because theyve never thought of using them
because they hospitalise people might be [].

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I want to come back on the named social worker pilot, so were

currently working up plans how we will test that in some areas it
may be doing it around transition for example, but the areas
ultimately chosen will form part of that local transformation plan
so it will be joined up in that way.
I want to say something briefly about the criminal justice system.
From April this year NHS England rolled out the [] diversion
scheme around 50% of the country and depending on spending
reviews and where depending on business case thats done
roll that out across the country is that business plan is success
and there is some specific work looking at people with learning
disabilities within that criminal justice pathway.
Feedback on
Time for
Change
consultation
Sir
Stephen
Bubb and
Kate
Brittain

[Sir Stephen] I think we can do two next bits quite quickly. I

thought that before I produced my findings on the year review I
shall do some talking particular to families and people with a
learning disabilities about their views of where we have got to
and reflect that back in the report that I make I think probably in
January now so I will ask Kate to say a bit about what weve
done and what weve found.
[Kate Brittain] A brief update on the consultation that weve just
made. I lead on health policy at ACEVO and I project manage
Stephens Time for Change Review. In what will be quite a
substantive report in the new year we had Time for Change in
November last year which brought the recommendations to the
steering group. We had a report in July to a Progress Update
Report.
Weve gone out to consultation. Weve asked for written
submissions. Peoples been phoning us up. Weve been on a
road trip around meeting various [] groups including we spent all
day with Viv at the Challenging Behaviour Foundation and
Mencap [] as well. So I have a document on the table.
What it has shown us is that by and large people recognise what
transforming care is trying to do, recognises it is gaining
momentum and actually what people have told us correlates
quite well with where we are. Care and treatment reviews fast
tracks, commitments around Calderstones, building around
support, all of that is transforming care, setting out its road map.
What were just starting to see is delivery of that, so people have

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yet to actually see the transformation were talking about and I

think that explains a certain level of cynicism that still pervades
along all the comments that weve had.
The principle of choice was very very foreground in a lot of the
submissions weve had and there is a quote, in the service design
section bit around where people dont get genuine choice, theyre
moving out of Calderstones what really is going to [] services
theyre receiving.
In doing this consultation we were as much interested in finding
out reactions to Stephens initial recommendations as more about
progress this year so I think given DHs response to the
consultation its important to note in discussing right to challenge
the charter right [] we developed in time for change. Actually
there were a certain level of frustration about the need for new
legislation [] the Mental Health Act, Human Rights, and other
bits of []
Stephen throughout his reviews always thought about service
provision transformation alongside that principle enshrined and
explicit by people with learning disabilities and I think there are
still concerns about it whether services can actually [] around the
most important of choice and rights for people which [] whats
been mentioned quite a bit about advocacy and how that fits in
all the presentations weve had today [] What the consultation
has done is to help us focus our [] actually.
[Recording not very good she speaks too low at times]
Sir Stephen

I had a very good meeting with people with learning disabilities

in Leeds and it was extremely good.

Wider NHS
England
work on LD
Hazel
Watson

Follow on from Ashok said, which is actually learning disability

programme doesnt equal transforming care its important that
we focus our attention on the 2,000-3,000 that are inpatient
services but also we know that there are a lot of [5 year] people
with a learning disability [] and we need to make sure that all of
our healthcare services are accessible for those people. So it is
not my attention to go over the next slide, so slide 50-54 give you
quite a lot of details on the area of work we are focussing on, on
the premature mortality review work which is an extremely

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important piece of work to us in helping us better understand

why we have such a poor mortality for people with learning
disabilities in this country, some significant work on annual
health checks as we need to check peoples health to make sure
theyre not missing on physical health care issues contribute to
early mortality and poor health outcomes. Large area of work
around more broadly access to healthcare. At the moment weve
been focussing learning disability becoming a priority within the
flu plan for the first time this year. A colleague of mine is doing
a lot with our cancer screening colleagues on how we make
screening programme accessible to people with healthcare and
were also starting to put a lot of focus on flagging systems
generally; flagging systems in primary care services, flagging up
system in acute care services because actually for people to be
able to access healthcare to have the reasonable adjustments
made they need in order to make it accessible, we need to know
who they are, we need to have proper registers, proper flagging
systems that indicate that when they have additional needs that
we need to be meeting.
I havent got a bullet point up here on mental care, but I will just
say to carry on from where Sarah was saying and we are working
with our mental health programme in NHS England in the
specifications that they are putting out for [] inpatient services for
their community services we are making sure align absolutely
with the wording in our specification so that we are all
supporting each other to change services were making sure its
aligning with the crisis concordat and were particularly making
sure the demand were putting into CAMMS services and
through the Education Health and Care Plans and aligning with
the Future in Mind plans that more mainstream CAMMS
services are delivering.
The other thing I wanted to say around access to healthcare is
just to follow on from what Theresa was saying about the CQC
earlier. Were also working closer with them to enable them to
inspect mainstream healthcare services so key lines of enquiries
for acute hospitals where is your consent form in easy read,
where is your flagging system. Key lines of enquiry for primary
care, actually how well are you doing on your annual health
checks, how are you making your services accessible for people
with a learning disability, and also being part of the OFSTED
consultation with CQC around SEND reforms how well are
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clinical commissioning groups are working with local authorities

and local educational authorities to make sure we are engaging
with Education Health and Care Plans and so were really
starting to influence [] on the mainstream healthcare system
which is where most people would wish to access healthcare and
obviously important to good quality of life Id just like to
mention that the work NHS England is doing in employment of
people with a learning disability.
Weve made some a small contribution to that in the learning
disability programme. We currently employ 4 people 4 experts
by experience as full team members in our learning disability and
were just about to employ a fifth person to come and help us
particularly on the young persons agenda, and NHS England
more broadly has a team of people working to put out guidance
to support the NHS to encourage and promote employing people
with a learning disability.

Marcella

Hazel

Sir Stephen

So as I say, Slides 50-54 will give you the details youll ever
want and on those issues.
Can I just ask you - I understand with annual health checks that
doctors will get paid regardless of whether someone with a
learning disability actually has a health check? Is that correct?
It isnt. They get paid per health checks and were keeping these
one or two of us may have opinion about paying additional
amounts actually as NHS England decided to keep that again for
this year as we really need to encourage GPs to do that. Also its
part of the Clinical Commission Assurance which means that
CCGs will be assuring against that as well as a key indicator to
make sure that they are doing everything.
I thought it was an extremely good morning and thank you to
everyone who put this pact together. Its also extremely useful
collection of data information so where do we go now? Im
going to produce a report in January which in a sense is the six
month and the year review I promised to do on the report I
produce. So in a sense when I do that I will have completed my
part but I will talk to Simon Stevens who commissioned me to do
this about what next as I guess there is still work to do but in a
sense this is the final meeting of our steering group for this year
report and we need to think about how we take this forward and I
think there is some need for an external, how shall I put it
grumpy bastard who keeps people to task now whether thats
me or another grumpy bastard I dont know but there is a role I

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think there is still a lot to be done. What Ive got from that
consultation if there is an expression there is an optimistic
cynicism so there is a feeling that things are changing but
actually has anything changed given the history so there is a lot
to prove to people with learning disabilities and their families
that the system will change and there is a lot of pressure that will
continue to be needed to ensure that happens but well have to
see how we do that so a very big thank you to everybody who
has been involved in this process. This last year its been
extremely - how shall I put it challenging but also fascinating
experience for me.
I think we have collectively I think weve made a difference. I
think weve been able to highlight some of the challenges that
people with a learning disabilities and their families face. A
community frankly, one of the most vulnerable communities in
the country that has had a really poor rough crap deal and
deserve better, and I think its not just a matter how we provide
better care and health for them but actually a fundamental matter
of social justice and human rights.
People with a learning disability deserve a better deal. They
have rights. They are often fundamentally abused and thats the
challenge for us. It isnt about just looking at better care and
health. Its about better lives for people who have been treated
very badly in society.
So thank you very much.

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