One possible way to get justice for all the dudes?

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:

• 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

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………

Updated example EHC Plan for a social communication programme in the home

Well here we are finally – at a stage where I can share my example EHC Plan.  When I said to participants at the Big Lottery funded ‘Social Communication and EHC Plans’ workshop last July that I was working on the example plan that ‘lined up the ducks’ for a home programme of social communication and would share it asap, I didn’t for a moment think it would take this long :(

For anyone who is new to the blog, what is meant by a ‘social communication programme’ is a way of interacting with a young person with autism that uses the relationship and interaction between the adult and the young person to give the young person another chance to master missed developmental milestones.  These missed milestones are what lead to difficulties in adaptive functioning – the ability to ‘read’ social situations; to understand and infer what other people are thinking; to use the perspectives of others to inform our thinking and decision-making; to build emotional regulation and resilience.

The example EHC Plan that I am sharing is based on a real life EHC Plan, N’s Plan (permission from parents and N himself given – for which we are extremely grateful).  Our goal with this Plan is to word it in such a way that it lends itself to requiring that a home programme of social communication is identified as the only way to meet some of the needs outlined in the Plan.  N, the pupil to whom this Plan belongs is already receiving a social communication programme in the school setting, because he is placed at Bright Futures School.

There have been protracted negotiations over the wording, with local authority representatives keen to ensure that any statements that were made about needs in the EHC Plan were backed up by evidence.  What has been key in terms of evidence has been the Educational Psychologist’s report and the social communication report completed by the external RDI Consultant who works with our school.

The order in which those reports were written and shared has also been crucial……we made sure the social communication report was done first so that it could be shared with the EP before she wrote her report (tactical manoeuvre).

Bright Futures School has a very good working relationship with the local authority EP who inputs into the annual reviews of our students.  She understands what we are trying to achieve with our school social communication programme and has seen the progress our students have made.  Her report, although it makes no comment on the need for a home/community-based social communication programme, was very supportive of the case for social communication input generally.

The social communication report from our external RDI Consultant was also pivotal, as you can imagine.  It provides very robust evidence for need and provision.  In particular, the RDI Consultant emphasises how many of the competencies that N has developed and the challenges that he has faced have occurred in the protected environment of Bright Futures School where staff are specifically trained to support him.   

The report highlights that he also needs to be able to employ adaptive strategies, use the perspectives of others to inform his thinking and remain on an even keel emotion-wise in the less protected and more challenging environment of the family home and the wider community.  This will require extensive practice including role plays, reviews and previews of different scenarios and varied potential responses.  It will also require a skilled supporter to be present with N so that when challenges happen, he can be supported appropriately to ‘Stop and Think’ in the moment in order to try to inhibit a potentially unhelpful reaction/response.

Funding from social care?

This is what opens the door to potential funding from social care.  Just to be clear – N already has a social care support plan in place but his Mum has been canny in the way she has approached this.  Initially she applied for support from social care to enable N to lead an ‘ordinary life’ i.e. to take part in enjoyable leisure activities in the same way as his typical peers.  At that stage, nothing about the need for N to practice key adaptive functioning competencies in the community was mentioned.  

Neither was mention made of a home programme of social communication being required as the provision to meet these needs.  This was done deliberately as it was anticipated that mention of these needs or of a home programme as provision to meet these needs would prove controversial and potentially delay and/or undermine the funding being agreed for the ‘ordinary life’ leisure activities.  Now that the EHC Plan has reached this stage, Mum has gone back to the social care panel with a request for additional funding to meet the needs relating to practicing adaptive functioning competencies in community and home settings.  The needs for adaptive functioning have already been agreed in the social care assessment but are not yet provided for in the social care support plan. Ahem, *cough, cough* not that we set that up at all…………..

Funding from health?

We placed quite a lot of detail about N’s difficulties with anxiety, stress and emotional regulation in the Plan in the ‘social, emotional and mental health’ part of Section B. These are (mental) health needs that relate to N’s education and as such, they are intended to pave the way for the potential for health funding for a home programme of relationship-based social communication to support work to be done in home and community-based settings on these issues.

Any readers who have been following my previous attempts to get health funding for N will know that an application for funding from the CCG under the Children’s Continuing Care Framework went all the way to the Health Service Ombudsman.  At the time, being eligible for Children’s Continuing Care funding was the only way to get funding from the CCG in an EHC Plan.  Rules have since changed and this resulted in the Ombudsman (who was a woman – that non gender-neutral language always annoys me!) ruling that funding must first be sought via ‘universal and specialist services’ before applying for Children’s Continuing Care funding.  EHC Plans are ‘universal and specialist services.’  

So, Mum has now written to the person at the CCG who is responsible for EHC health funding, pointing out that N has needs that cut across health, education and social care and asking what the arrangements are for joint funding/commissioning to be considered given these circumstances.

We have been told that a joint meeting between school, parents, education, health and social care commissioners/financial decision-makers will be arranged to discuss this further before September.

The EHC Plan

The example Plan can be found here.  What we have done is firstly to ensure that social communication (SC) needs are clearly identified in Section B.  These SC needs are highlighted in red, for ease of reference.  There is also some blue text, which reflects needs and provision relating to sensory/reflex integration……..that is another very long story, which I won’t go into here.

Similar information to that appearing in Section B, ‘Needs’, about mental health needs is repeated in Section C ‘Health needs which relate to SEN’.  Information about social care needs that is written into Section B is repeated in Section D ‘Social care needs which relate to SEN’ in order to cover all bases.  

Please note that only needs that appear in Section B and provision that is outlined in Section F can be appealed to SEN tribunal unless you are lucky enough to live in one of the 17 local authority areas that is trialing joint appeals for health and social care as well as education.  More info on pilot areas can be found here.

In Section F, ‘Provision’ you can see that a relationship-based social communication (RBSC) programme (that meets the NICE autism guidelines) is recommended at different points across both home/community and school settings.  In reality, all of the competencies delivered by an RBSC programme are needed in all areas life – to enable learning, to make and maintain friendships, to live independently and to secure meaningful employment as well as to have good mental/emotional wellbeing.  

So…..that’s where we’ve got to.  We have done our best to line up our ducks and we now await the joint meeting with reps of health and social care as well as education.  If we are not able to finalise the draft EHC Plan at that point, parents will, with my support, be appealing to SEN tribunal on the education matters and using the appropriate complaints systems to take up any matters relating to health or social care.  Poor parents…….what a performance…..potentially three separate appeals.  Good job they are resilient, resourceful and determined.

In summary

The EHC Plan example is not perfect, it’s still a work in progress and I am sharing it as a guide rather than a ‘bible’.  Additionally, each young person is different and their autism-related difficulties will express themselves in different ways, requiring different provision. 

However, we do know what the difficulties at the heart of autism are and we do know that in many cases, these difficulties result in huge challenges to a young person’s ability to have a good quality of life: to make and maintain friendships and relationships, to live independently, to secure meaningful employment and to have good emotional wellbeing.

We also know (and the National Institute for Clinical Excellence in Health and Social Care has endorsed this in this NICE guideline) that it is possible to work on, and to ameliorate some of these core difficulties.  NICE has even given us criteria for social communication interventions that work on the difficulties at the heart of autism.

NICE recommends that providers of services consider a specific social communication intervention for the core features of autism in children and young people that includes play based strategies with parents, carers and teachers to increase joint attention, joint engagement and reciprocal communication in the child or young person. NICE recommends that programmes should:

• Be adjusted to the child or young person's developmental level
• Aim to increase the parents', carers', teachers' or peers' understanding of, and sensitivity    and responsiveness to, the child or young person's patterns of communication and interaction
• Include techniques of therapist modelling and video interaction feedback
• Include techniques to expand the child or young person's communication, interactive play and social routines.

NICE recommends that this intervention should be delivered by a trained professional.  

RDI is one intervention that meets the above criteria.  If you are seeking to get social communication provision (at home or at school, or both) included in your child’s EHC Plan, I strongly recommend that you commission a social communication assessment and report from an RDI Consultant who will also be able to help you think through the wording for your EHC Plan.  

 A list of RDI Consultants can be found here.

I hope that is helpful.  Please do give me feedback.  I would be particularly interested in hearing from anyone who successfully uses any of my shared information.