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:
- A Care Quality Commission inspection of Slade House, which found the unit in which Connor died to be inadequate in all 10 measures of assessment.
- 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
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………