Today (12
th September 2018)
the government response to the
Learning from Deaths Review (LeDeR) report was published
(badged as coming from the Department for Health and Social Care and NHS
England). The LeDeR project is being run by Bristol University (the same group
who ran the Confidential Inquiry into the Premature Deaths of People with Learning
Disabilities), and is working to put into place a national system for reviewing
the deaths of people with learning disabilities across England. A report of
progress so far on the LeDeR project was finally published in May 2018 (despite
the date on the report being December 2017). At the time I wrote two blogposts
about
what the report said and
the circumstances of its publication so I don’t
want to go over this ground again here: suffice it to say for this blog that
the report made 9 recommendations about what needed to happen to improve how
people’s deaths were reviewed and to make a start on stopping the shocking
scale of needless deaths (may it never stop being shocking) experienced by
people with learning disabilities.
Over three months after the LeDeR report was published (and
presumably at least nine months after NHS England and the government saw the LeDeR
report in December 2017), the government has published its response. The
response is 23 pages long, and mainly goes through each of the 9 recommendations
in turn, with some ‘actions’ outlined at the end of each section. This blogpost
will pick out some aspects of the responses to specific recommendations, and
then wind up with a few more general thoughts at the end. I’m sorry but this
blogpost is long, detailed and probably tedious – my excuse (as always) is that
to test the reality of government grand claims about what they’re going to do,
it’s important to delve into what they’re actually committing themselves to.
Often there’s quite a gap between the two…
LeDeR report
recommendation 1: Strengthen collaboration and information sharing, and
effective communication, between different care providers or agencies.
This is really important, as so many inquests into the
premature deaths of people with learning disabilities have shown that people
and organisations paid to be in the lives of people with learning disabilities
can be more energetic in passing the buck than in actually working together to
support someone.
The government response to this recommendation is long on
optimistic generalities and a rounding up of things that are already happening
(some of which are relevant to the recommendation, others of which are not),
and short on meaningful actions (2 specific actions are outlined in this
section).
Things already happening mentioned by the government here include
annual health checks, health action plans, the named social worker model, and
digital health records initiatives. All of these are useful, but they (with the
exception of the named social worker model) are not about how to make different
organisations work together. This section also says that the LeDeR reviews
themselves will prompt this sharing – this may be true for people who are
already dead, but there is little on how to make this happen for people who are
still alive. The
NHS Improvement Learning Disability Standards recently
produced by NHS Improvement (and mentioned here) are potentially promising, but
the government response doesn’t include any analysis of why collaboration and
information sharing isn’t happening (with fatal consequences for some people), any
details or actions about how they are going to improve collaboration and
information sharing, how they would know if it’s happening or not, and what
they’re going to do about places that fall short.
A good example of the mismatch between recommendations and
proposed actions happens in this section, where 1 of the 2 actions (the other
one being a vague action for NHS England to report annually to DHSC, which you
would hope would be happening in any minimally functional programme of work)
concerns the
NHS England Accessible Information Standard. This Standard (about
improving the accessibility of information for people using NHS services) is
not about improving information sharing between organisations, it doesn’t apply
to any agencies other than those NHS England is responsible for, and there are
no actions described here to monitor if/how the Standard is being used, if it
makes a real difference to people using services, and what is going to happen
to services who aren’t using it. The ‘action’ is for the Care Quality
Commission (CQC) and NHS Improvement to produce a report on accessible
information in learning disability services in NHS Trusts by October 2019 – there
is nothing on how this addresses the recommendation or what actions would
follow this report.
Recommendation 2: Push forward the electronic
integration (with appropriate security controls) of health and social care
records to ensure that agencies can communicate effectively, and share relevant
information in a timely way.
This recommendation is about getting important health
information about people with learning disabilities to be more routinely and
automatically portable across different bits of the NHS, so that people with
learning disabilities and their families don’t have to carry the responsibility
for being the sharer of all this information over and over again and emergency
health services will have at least basic information about a person to avoid
catastrophic errors.
NHS England is already doing some good, careful work on this,
like including extra information about people’s health in electronic Summary
Care Records that different NHS services can see, and putting a ‘Reasonable
Adjustments’ flag on a person’s electronic health record to outline what
reasonable adjustments are needed for the health service to really work for
that person.
The 3 actions in the government response here are about
reporting back and going on to produce guidance from this ongoing work. The big
question with all of these initiatives (shared by those developing them, I
think) is, once they are up and running, will different health professionals
actually use them and will they make a real difference to how people are
treated in health services?
Recommendation 3: Health Action Plans developed as part of the Learning
Disabilities Annual Health Check should be shared with relevant health and
social care agencies involved in supporting the person (either with consent or
following the appropriate Mental Capacity Act decision-making process).
This recommendation is about trying to make a stronger link
between annual health checks (currently happening for around half of eligible
people with learning disabilities), the health action plans that are supposed
to come out of every annual health check (it’s currently not clear how many
annual health checks result in meaningful health action plans), and how health
action plans are used to make an actual difference to people’s lives.
The government response to this section is short, basically
saying that it’s all in hand already, with their existing planning guidance to
Clinical Commissioning Groups (CCGs) telling them to increase the number and
proportion of annual health checks being done so it will all happen (the only
action in response to this recommendation is to report progress annually). The
problem with this sunny response is that we’ve been here for some time – the
proportion of eligible people with learning disabilities getting annual health
checks has hovered around 50% for some years (though there have been increases
in the number of people with learning disabilities identified by GPs and
increases in the number of people getting annual health checks). CCGs (and GP
practices) have been ‘guidanced’, set targets, monitored, and the rest of the
panoply of NHS England ‘project management’ techniques for some time without a
visible step-change. The government response has no analysis of why this is, or
why doing the same thing that hasn’t really worked will produce a radically
different result.
Recommendation 4: All people with learning disabilities with two or more
long-term conditions (related to either physical or mental health) should have
a local, named health care coordinator.
This is a really big and important recommendation. People
with learning disabilities are much more likely to have multiple health
problems, starting earlier in life, than other people, and these multiple
health conditions (and how they affect each other and the person’s life) are
too often ignored or neglected, with massive implications for the person’s life
(and death). Having someone who knows about health who really understands you
and knows about your health, and who has your back, could be a really important
way to cut through a lot of the crap and help people to live flourishing lives.
But this recommendation will require real political will and money attached to
make it happen.
I think it’s fair to say that the government response to
this substantive recommendation is pretty much absent. There are 2 actions
outlined in the government response to this section. The first is to
disseminate
the evaluation of the Named Social Worker pilot, scheduled to have
already happened in July 2018 (which it has). This reminds me of writing lists
of tasks to do and starting with ‘Write a list of tasks’, so you can tick it
off straight away and feel better about yourself (yes, I do do this on
occasion…). The Named Social Worker idea is at a relatively early pilot stage
(it has been piloted in 9 areas so far) and part of the idea is for the social
worker to help to co-ordinate support, although a bigger part of the role is to
act as the guarantor of the person’s human rights. It’s really hard to assume
that this role is the same as, is consistent with, or will work well with
people with multiple health issues as a health care co-ordinator.
The second action is to commission a ‘rapid review’ of ‘best
practice in care-coordination / key working for people with a learning
disability, focused on health and wellbeing, to inform guidance for the NHS on
care-co-ordination’, to be completed by March 2019. Two things here, for me.
First, as well as identifying best practice, it is crucial for these kinds of
reviews to try and identify what it would take to get effective health
co-ordination happening for everyone, and what stands in the way of that. When
health, social care and education services are routinely ignoring the law (just
look at the Mental Capacity Act, which we’ll come to in a bit), the approach of
finding some examples of best practice and sharing them in ‘guidance’ just
doesn’t begin to touch the scale of the discrimination that people with
learning disabilities and their families experience. The second thing is that
the only action is to commission the paid review – even writing the guidance
(let alone doing what would be needed to make it happen) isn’t an action.
Recommendation 5: Providers should clearly identify people requiring the
provision of reasonable adjustments, record the adjustments that are required,
and regularly audit their provision.
The duty on public services to make ‘reasonable adjustments’
has been part of equality law since 2010 – the idea being that routine health
(and other) services may not work very well for certain groups of people
(including people with learning disabilities), so they have a duty to provide
their services differently so that everyone can access an equally effective
health service. This is a big issue – it’s now 8 years since the law came into
effect and we know that
many health services are not providing the reasonable adjustments needed for people with learning disabilities to get good access to
good healthcare.
There are three parts to this recommendation, and the
government is on safer ground with the first two parts about identifying people
requiring reasonable adjustments and recording the adjustments that are
required. As I’ve already mentioned, ongoing work about ‘flagging’ reasonable
adjustments is highly relevant here, and the 3 actions in the government
response are all about the familiar reporting progress and producing
‘guidance’. These are useful as far as they go, but actions around seeing how
widely (and in what circumstances) they are actually used, if they make a
difference to people’s healthcare, and what happens if they’re not being used
would be useful.
The government response has little to say about the third
part of the recommendation, about auditing reasonable adjustments, beyond
generalities that the CQC inspection process sort of does this already.
Although it should be pretty fundamental for a health service to regularly
audit what it’s doing in terms of reasonable adjustments (and they are all
supposed to be doing it already), we know that many NHS Trusts don’t seem to be
doing this. Why not, and what happens to NHS Trusts who don’t?
Recommendation 6: Mandatory learning disability awareness training should be
provided to all staff, delivered in conjunction with people with learning
disabilities and their families.
The government response to this recommendation seems to have
gained the most positive press coverage, suggesting that the government will
introduce mandatory training for staff, as Paula McGowan has so effectively
campaigned for. What has the government actually committed itself to?
For me, elements of the
recommendation itself are not totally clear. I am not sure what ‘learning
disability awareness’ training is, what it entails, and the relative merits of
awareness versus (or in combination with) other types of training. The government
response in this section does not add clarity - this section begins with the
following (underlined, no less) statement: “We agree that health and care staff should have access
to learning disability awareness training. We will consult by the end of March
2019 on options for delivering this to staff.”
This sounds like it promises much but the detail is
sketchy, although there are 7 actions in this section and much more than in
other sections on monitoring and auditing what’s actually happening.
The government response mentions that there is already
a statutory duty for provide training for staff to do their jobs properly, and
draws attention to the already existing Learning Disability Core Skills and Education Training Framework. This Framework was published in 2016, and I’m not
sure how much of an impact it has had on how staff are trained and educated (or
whether it results in staff doing their jobs well). It has three levels (or
Tiers): Tier 1 is about awareness for any staff person who might have any
occasional contact with a person with learning disabilities, then Tiers 2 and 3
are for staff spending more of their time working directly with people with
learning disabilities.
A lot of the actions in the government response relate
to this Framework, particularly the most basic Tier 1 level of training, and
they feel a little scattershot. So one action is for DHSC to ‘remind’
organisations of their responsibilities when it comes to training (to be done
this month). Health Education England
are supposed to develop and publish a Tier 1 ‘training offer’ at some
unspecified point in 2019 (if the framework has been out since 2016 why hasn’t
this been done already?) and to audit learning disability training – by June
2021! I’ve no idea why Health Education England have the luxury of such glacial
timelines – is it because DHSC have written round begging for different
organisations to say what they might be able to do rather developing a coherent
strategy and pushing organisations to do what needs to be done? Contrast with
Skills for Care, who are supposed to produce a “comprehensive skills and
training audit of the social care workforce based on the learning disability
core skills framework” by March 2019.
The other big action in this section is that the government,
“in conjunction with partners, will complete a consultation on proposals for
mandatory learning disability awareness training” by March 2019 (another action
is that once mandatory training is introduced its uptake (but not, apparently,
its effectiveness) will be monitored by the CQC as part of its inspection
regime.
So overall, this sounds
like there will be some form of mandatory ‘awareness’ training, for “relevant”
staff, and that the government will “strongly recommend” (but not require?)
people with learning disabilities to be part of this awareness training.
This is more ‘action’
than we have seen in response to other recommendations in the LeDeR report, but
I think this part of the government response really suffers from a lack of
analysis of why different groups of staff can behave so badly, and what is
needed to radically change this. Is an awareness deficit really at the root of
why some staff treat some people with learning disabilities so appallingly?
What about directly tackling the discrimination, stigma and lack of human worth
ascribed by some staff to the health and lives of people with learning
disabilities? What does the evidence say about how to achieve that? What about
getting into the heart of basic training for doctors, nurses, applied health
professionals, social workers, managers, commissioners and other staff groups –
what do we know about how to do that so it makes a real and lasting difference?
What about the environments people are working in – these surely make a
difference? All these issues go unacknowledged as issues at all, let alone
issues that need analysis, proportionate action, necessary resources, and
political will.
Recommendation 7: There should be a national
focus on pneumonia and sepsis in people with learning disabilities, to raise
awareness about their prevention, identification and early treatment.
It has been well known for some time that people with
learning disabilities are much more likely to die of pneumonia, particularly
aspiration pneumonia related to problems with eating and drinking, than other
people. The importance of sepsis as a cause of people with learning
disabilities dying needless deaths has emerged more recently.
The government response outlines the ‘learning into action’
group that NHS England has already set up (although how the learning will translate
into action is unclear), with 1 of the 3 actions in this section being to
report on progress to DHSC. One of the other actions mentions work that is
already going on to improve the uptake of flu vaccines amongst people with
learning disabilities (although it doesn’t mention the importance of improving
the uptake of free flu vaccinations amongst paid carers and family members
supporting people with learning disabilities).
Recommendation 8: Local services
strengthen their governance in relation to adherence to the MCA, and provide
training and audit of compliance ‘on the ground’ so that professionals fully
appreciate the requirements of the Act in relation to their own role.
What to say about the Mental Capacity Act (MCA), now into
its teenage years but still frequently ignored and abused where people with
learning disabilities (and lots of other people too) are concerned? This
recommendation focuses on the crucial importance of local governance, training,
and the auditing of compliance as part of a strategy to make adherence to the
MCA (after all, it is the law) routine and less a function of the personal preference
of any given professional. The government response states “We acknowledge that more
needs to be done to embed the principles of the MCA in everyday practice.”
The
government response mentions a range of general initiatives that are happening
relating to the MCA, with 3 specific actions mentioned in this section (1 of
these being the ubiquitous reporting of progress). A more substantive action is
for “NHS England to distribute
additional best practice guidance on the MCA, learning disabilities and urgent
care situations”, by November 2018. Again, this will no doubt be useful as far
as it goes, but I am really not convinced that the root of un/misuse of the MCA
is principally due to a deficit of knowledge that will be radically transformed
by best practice guidance.
The other action in this section is for the CQC, “to
further develop inspection expertise to assess the quality of MCA application
and practice”. This may be useful, but CQC inspection reports already often mention practice in relation to MCA, with much of it reporting poor practice.
The bigger issue is the (lack of) consequence of non-compliance with the MCA –
if the government took a lead on requiring the CQC to record a ‘requires
improvement’ rating for any service found not to be complying with the MCA I
think we’d see bigger changes, much faster.
Recommendation 9: A strategic approach be taken nationally for training of
those conducting mortality reviews or investigations, with a core module about
the principles of undertaking reviews or investigations, and additional
tailored modules for the different mortality review or investigation
methodologies.
The government response to this specific recommendation is
short, with the only action being for Health Education England to produce an e-learning
package (to be done by August 2018…). There are also more general mentions of
the Healthcare Safety Investigations Branch (a pet project of Jeremy Hunt) and
the CQC Learning candour and accountability report, both of which have ended up
paying very attention to the deaths of people with learning disabilities.
Oversight
The end of the government response says that DHSC and NHS
England will set up a LeDeR oversight group, including people with learning
disabilities and family members, to monitor the actions. According to the
response, “This group will meet regularly to monitor cross- system progress
against recommendations and agreed actions, and can link as necessary with the
LeDeR independent advisory group, and provide advice to Ministers and policy
leads.” I personally find this immeasurably frustrating, for the following
reasons:
- There isn’t
one already? How long has the LeDeR project been going?
- As the
actions are described, this oversight group won’t have most of the information
it will need to really understand what’s going on or whether the actions are
making a difference.
- DHSC in the
past few years has systematically dismantled structures to help it think
strategically about how to support people with learning disabilities, including
the Learning Disability Programme Board, the National Forums of self-advocates
and family members, and the Learning Disability Self-Assessment Framework. An
‘oversight group’ related to one specific programme is not a substitute.
- Reducing the
premature and preventable deaths of people with learning disabilities is so
much bigger an issue than DHSC, substantially outsourcing its responsibilities
to NHS England, can do anything meaningful about. Where’s education, social
care for children and for adults, public health, housing, criminal justice,
benefits systems, in all of this?
Elephants by Jackson
Pollock
As far as I know, Jackson Pollock never called one of his
paintings ‘Elephants’ (although
elephants have painted abstract expressionist artworks). I want to finish this massive blogpost (well done for making it this
far) by talking about two things – the scattershot nature of this government
response, and what is absent from it.
First things first – given that this is a response to a
specific set of recommendations, it is unfair to expect a broad strategic sweep
that tackles everything. But – I was hoping for a clear analysis of what is
going wrong and why, for actions to follow from this analysis, and for the
effectiveness or otherwise of these actions to be monitored so the actions can
be changed accordingly. Instead it is a fairly typical round-up of things that
are mainly already happening, with little sense of these and new actions adding
up to a coherent strategy working to a clearly specified timetable. Including
some things that are already happening makes sense (it would be worrying if
there wasn’t anything already happening), but the inclusion of some actions
that are not relevant, or working to timelines that don’t match each other,
reduces my confidence that this scattershot approach will result in radical
change.
Second things second, what are the absent elephants stalking
this government response? Some of them that occurred to me reading through it
are:
- I don’t
remember seeing any actions or commitments about the longer-term future of the
LeDeR programme, or what will replace it.
- I don’t
remember seeing any actions or commitments to make participation in the LeDeR
programme mandatory (it is still officially voluntary), or actions to make
these deaths a core part of what health services do rather than an add-on that
can be indefinitely postponed.
- There is
nothing about the discrimination and stigma that is so obvious and central a
part of what is going on in the premature deaths of so many people with
learning disabilities. Without looking this in the face, and understanding what
you need to do to address it, are we really going to see the radical change
needed?
- There is no
analysis of what is wrong now, no thinking on the basis of this analysis what
needs to happen, and no thought about how to effect really significant change.
What is the ‘theory of change’ or ‘logic model’ here? How is radical change
expected to happen as a result?
- There is a
whole world beyond health services (and beyond NHS England) that is crucial in
supporting people with learning disabilities to flourish and to help prevent
people dying before their time. Where is this world in this government response
– nowhere.
- There is no
sense of this government response being part of, or consistent with, a
government strategy (as opposed to an NHS England strategy). The last national
strategy about people with learning disabilities was a refresh of Valuing
People designed to go from 2009 to 2012 (perhaps we should call it Valuing
People Then rather than Valuing People Now). There has been nothing since, and
the absence of a national strategy is really damaging.
- There is
also no mention at all of the much-vaunted NHS England Long-Term Plan, where
people with learning disabilities are supposed to be one of the clinical
priorities for the next 10 years. How is this lack of connection possible,
unless this government response is really a disposable document to say a
commitment has been met and to gather a day’s positive headlines?
- There is
nothing in this government response about co-production, or people with
learning disabilities and families having any meaningful power – for me an
essential component of making significant, meaningful change.
- And there’s
no commitment to the meaningful amount of money and other resources required –
if you tell people over and over again to do six impossible things before
breakfast (without any actual breakfast in view) they will eventually stop listening
to you.
There’s one last thing I want to say. I hate writing these
kinds of blogposts. They’re not blogposts really – they’re too long and too
tedious for that. I hate being ‘that person’ who nitpicks and isn’t ‘welcoming’
enough. But for me the detail (or the lack of detail) is where you need to
look, and I can’t think of another way to examine and scrutinise these kinds of
document. I hope it’s useful for someone, somewhere. If it’s not, I’ll gladly
stop writing them!
