Background
To date there
have been countless cases of people with autism and/or LD being held in ATUs or
similar provision where they have been mistreated, neglected and/or
abused. In some cases, this neglect or abuse
has shamefully brought about the deaths of young people.
In many
cases, the young people were held under a Section 3 of the Mental Health Act,
yet they didn’t have mental health conditions – they had autism and/or LD.
Connor
Sparrowhawk’s preventable death has (thanks to his family) been subject to the
most scrutiny and has resulted in:
- An
independent report by Verita, commissioned by Southern Health after a
considerable fight by Connor’s family, which found that his death was
preventable and was the outcome of a combination of poor leadership and poor
care in the unit
- NHS England
commissioning Mazars to investigate Southern Health’s responses to all deaths
in their learning disability and mental health provision dating back to 2011. Amongst other things, the report found: a
lack of leadership; inadequate reporting of serious incidents; inadequate
investigation protocols including a lack of management and oversight; lack of systematic approach to learning from
deaths; limited involvement of families and carers.
- An inquest
into Connor’s death determining that Connor’s death was contributed to by very
serious failings, both in terms of systems in place to ensure adequate
assessment, care and risk management of epilepsy in patients with learning
disability at STATT (the unit he died in).
Scrutiny and
accountability?
The upshot of
all of that scrutiny? A mealy mouthed public apology by Southern Health NHS
Trust. No sanctions, no sackings, no
public enquiry.
Other
families, such as those of Nico Reed and Thomas Rawnsley, are also still
seeking justice. The 7 Days of Action
campaign has recently collated the stories of a further 35 young people who are
currently stuck in ATUs. Each of these
families is fighting their own fight in isolation. An exchange on the 7 Days facebook group earlier
today got me thinking about how families might come together to take collective
action.
There have
been discussions about a group legal action by some of the ‘ATU’ families but I
remember being told a couple of year ago by a barrister that the cases were not
similar enough to bring a group action……different local authorities and health
authorities, different triggers for breaches of human rights etc.
A new idea
What if we
could use a different framework – a framework with objectives that were clearly
set out, arguably making them measurable and giving us ‘hooks’ to hang
accountability on? One way to do this
might be by using the NHS Constitution as the ‘framework’.
Let’s look at
said document:
‘The
Secretary of State for Health, all NHS bodies, private and voluntary sector
providers supplying NHS services, and local authorities in the exercise of
their public health functions are required by law to take account of this
Constitution in their decisions and actions’ (my emphasis).
There are 7
key principles. I have outlined all 7 here
but have just provided commentary underneath each of the principles where I think a
case could be made that the rights of a group of young people held in ATUs had
been breached. The black text is what
appears in the NHS Constitution as explanatory text; the blue text is me making the case for collective breaches.
1. The NHS
provides a comprehensive service, available to all
2. Access to NHS services is based on
clinical need, not an individual’s ability to pay
3. The NHS aspires to the highest
standards of excellence and professionalism
It provides
high quality care that is safe, effective and focused on patient experience; in
the people it employs, and in the support, education, training and development
they receive; in the leadership and management of its organisations; and
through its commitment to innovation and to the promotion, conduct and use of
research to improve the current and future health and care of the population.
Respect, dignity, compassion and care should be at the core of how patients and
staff are treated not only because that is the right thing to do but because
patient safety, experience and outcomes are all improved when staff are valued,
empowered and supported.
‘Safe,
effective and focused on patient experience’ and ‘respect, dignity, compassion
and care should be at the core of how patients are treated’……..I think it would
be possible to make robust cases for all the ATU families that these rights
have been breached.
4. The
patient will be at the heart of everything the NHS does
It should
support individuals to promote and manage their own health. NHS services must
reflect, and should be coordinated around and tailored to, the needs and
preferences of patients, their families and their carers. As part of this, the
NHS will ensure that in line with the Armed Forces Covenant, those in the armed
forces, reservists, their families and veterans are not disadvantaged in
accessing health services in the area they reside. Patients, with their
families and carers, where appropriate, will be involved in and consulted on
all decisions about their care and treatment. The NHS will actively encourage
feedback from the public, patients and staff, welcome it and use it to improve
its services.
‘Tailored to
the needs and preferences of patients’; ‘patients, families and carers will be
involved in and consulted on all decisions about their care and treatment’ and ‘actively
encourage feedback and use it to improve its services.’ We can all think of several (most?) cases
where those principles have not been upheld.
5. The NHS
works across organisational boundaries
It works in
partnership with other organisations in the interest of patients, local
communities and the wider population. The NHS is an integrated system of
organisations and services bound together by the principles and values
reflected in the Constitution. The NHS is committed to working jointly with
other local authority services, other public sector organisations and a wide
range of private and voluntary sector organisations to provide and deliver
improvements in health and wellbeing.
‘Committed to
working jointly with other local authority services…….’ Amongst other things, recent
discussions on facebook about section 117 agreements not being fulfilled spring
to mind here. Section 117 imposes a duty
on health and social services to provide aftercare services to certain patients
who have been detained under the Mental Health Act.
6. The NHS is
committed to providing best value for taxpayers’ money
It is
committed to providing the most effective, fair and sustainable use of finite
resources. Public funds for healthcare will be devoted solely to the benefit of
the people that the NHS serves.
This one is
my absolute favourite. There is sooooooo
much evidence that ATUs do not provide value for money when compared with the
total no-brainer alternative of appropriately supported placements in the
community near a person’s family. ‘Effective,
fair and sustainable’……..a choice comment from Jim Royle of ‘The Royle Family’
springs to mind.
7. The NHS is
accountable to the public, communities and patients that it serves
The NHS is a
national service funded through national taxation, and it is the government
which sets the framework for the NHS and which is accountable to Parliament for
its operation. However, most decisions in the NHS, especially those about the
treatment of individuals and the detailed organisation of services, are rightly
taken by the local NHS and by patients with their clinicians. The system of
responsibility and accountability for taking decisions in the NHS should be
transparent and clear to the public, patients and staff. The government will
ensure that there is always a clear and up-to-date statement of NHS
accountability for this purpose.
So the
government is accountable to Parliament for the operation of the NHS. That’s what it says there in black and
white. Group litigation (judicial
review?) of the government, then, as the ultimate accountable body?
The NHS
Constitution summarises patients’ legal rights, which include:
Under ‘Access
to health services’
You have the
right to receive care and treatment that is appropriate to you, meets your
needs and reflects your preferences.
You have the
right to expect your NHS to assess the health requirements of your community
and to commission and put in place the services to meet those needs as
considered necessary, and in the case of public health services commissioned by
local authorities, to take steps to improve the health of the local community.
You have the
right not to be unlawfully discriminated against in the provision of NHS
services including on grounds of gender, race, disability, age, sexual
orientation, religion, belief, gender reassignment, pregnancy and maternity or
marital or civil partnership status.
Care and
treatment that is appropriate……people with autism and LD being detained under
the Mental Health Act when they do not have a mental health condition…..how is
that ‘appropriate’ and ‘meeting need’?
Could a case be made that, because their autism condition was not
properly taken into account, all of these young people were unlawfully
discriminated against on the basis of their disability?
Under ‘Quality
of care and environment’
You have the
right to be treated with a professional standard of care, by appropriately
qualified and experienced staff, in a properly approved or registered
organisation that meets required levels of safety and quality.
You have the
right to be cared for in a clean, safe, secure and suitable environment.
You have the
right to receive suitable and nutritious food and hydration to sustain good
health and wellbeing.
You have the
right to expect NHS bodies to monitor, and make efforts to improve
continuously, the quality of healthcare they commission or provide. This
includes improvements to the safety, effectiveness and experience of services.
Professional
standard of care/appropriately qualified and experienced staff/organisation
that meets required levels of safety and quality’…………Thomas, Eden, Jack,
Connor, Stephanie, Nico, Stephen…………….
Under ‘Nationally
approved treatments, drugs and programmes’
You have the
right to drugs and treatments that have been recommended by NICE for use in the
NHS, if your doctor says they are clinically appropriate for you.
NICE has
written several guidelines and a quality standards document on autism. There are many aspects of these guidelines
that have not been adhered to.
Under 'Respect,
consent and confidentiality'
You have the
right to be treated with dignity and respect, in accordance with your human
rights.
You have the
right to be protected from abuse and neglect, and care and treatment that is
degrading.
You have the
right to accept or refuse treatment that is offered to you, and not to be given
any physical examination or treatment unless you have given valid consent. If
you do not have the capacity to do so, consent must be obtained from a person
legally able to act on your behalf, or the treatment must be in your best
interests.
You have the
right to be given information about the test and treatment options available to
you, what they involve and their risks and benefits.
Fed through
hatches, restrained physically and chemically, pulled across the floor resulting
in carpet burns, a guy with epilepsy, left unsupervised in a bath……………
Under 'Informed
choice'
You have the
right to transparent, accessible and comparable data on the quality of local
healthcare providers, and on outcomes, as compared to others nationally.
You have the
right to make choices about the services commissioned by NHS bodies and to
information to support these choices. The options available to you will develop
over time and depend on your individual needs. Details are set out in the
Handbook to the NHS Constitution.
I’m just
getting more and more frustrated as this list goes on….transparent data on
outcomes that can be compared to others nationally!! What??!!
Anyone ever seen any of those amongst all the pigs that we are watching
flying past…….?
Under 'Involvement
in your healthcare and the NHS'
You have the
right to be involved in planning and making decisions about your health and
care with your care provider or providers, including your end of life care, and
to be given information and support to enable you to do this. Where
appropriate, this right includes your family and carers. This includes being
given the chance to manage your own care and treatment, if appropriate.
You have the
right to an open and transparent relationship with the organisation providing
your care. You must be told about any safety incident relating to your care
which, in the opinion of a healthcare professional, has caused, or could still
cause, significant harm or death. You must be given the facts, an apology, and
any reasonable support you need.
You have the
right to be involved, directly or through representatives, in the planning of
healthcare services commissioned by NHS bodies, the development and
consideration of proposals for changes in the way those services are provided,
and in decisions to be made affecting the operation of those services.
An ‘open and
transparent relationship with the organisation providing care’. There are several families that spring to
mind immediately whose relationship with the care provider was/is far from
transparent. Instead of information and
support, they experienced bullying, lying, threats, intimidation…the polar
opposite of what the NHS Constitution sets out.
So if ‘The
Secretary of State for Health, all NHS bodies, private and voluntary sector
providers supplying NHS services, and local authorities in the exercise of
their public health functions are required by law to take account of this
Constitution in their decisions and actions’ does that mean we have multiple collective
breaches of the NHS Constitution? If
yes, could redress be sought collectively, or am I totally barking up the wrong
tree?
It feels like if this sort of thing was going to work, someone would have thought of it already. But you never know....worth a discussion. Awaiting
feedback from friendly and wise legal bods.
Watch this space………
