Connor was an 18 year old young man with autism, learning difficulties and epilepsy. During a crisis, Connor had to go into Slade House, an NHS Assessment and Treatment Centre run by Southern Health NHS Trust where there were five patients and a minimum of four members of staff on duty 24 hours a day. On 4 July 2013, Connor had an epileptic seizure and died in the bath. He was unsupervised at the time. Southern Health initially classified Connor’s death as resulting from ‘natural causes’ until an independent investigation found that his death was preventable. Anyone who knows anything about epilepsy knows you don’t leave someone with epilepsy unsupervised in the bath. The Assessment and Treatment Centre had ‘expertise’ in epilepsy……yet Connor was left unsupervised in the bath.
Connor’s Mum Sara writes a blog about Connor, or Laughing
Boy (LB), as she affectionately calls him.
This is a link to a 90 second slide show of his life . You can read more about LB’s
life, and now, unfortunately, his death and the dehumanising treatment of his family in the aftermath of
Connor’s death by Southern Health Trust.
The Unit Connor was in when he died costs £3,500 per
week. That’s £182,000 a year. An independent report into Connor’s death
showed:
1. That Connor’s death was preventable
2. That there were significant failings in his care and treatment
3. That the failure of staff to respond to and appropriately risk assess Connor’s epilepsy led to a series of poor decisions around his care
4. That the level of observations in place at bath time was unsafe and failed to safeguard Connor
5. That if a safe observation process had been put in place and Connor had been appropriately supervised in the bath, he would not have died on 4 July 2013
6. That the STATT unit lacked effective clinical leadership
7. That there had been no comprehensive care plan in place for the management of Connor’s epilepsy and his epilepsy was not considered as part of Connor’s risk assessment, in breach of NICE epilepsy guidance
2. That there were significant failings in his care and treatment
3. That the failure of staff to respond to and appropriately risk assess Connor’s epilepsy led to a series of poor decisions around his care
4. That the level of observations in place at bath time was unsafe and failed to safeguard Connor
5. That if a safe observation process had been put in place and Connor had been appropriately supervised in the bath, he would not have died on 4 July 2013
6. That the STATT unit lacked effective clinical leadership
7. That there had been no comprehensive care plan in place for the management of Connor’s epilepsy and his epilepsy was not considered as part of Connor’s risk assessment, in breach of NICE epilepsy guidance
Corporate manslaughter?
The independent report follows a highly critical CQC inspection
published in December 2013 in which Slade House failed on all 10 essential
standards of quality and safety. Since that inspection report, the unit has
been closed to new admissions.
£182K a year…..and even then the blasted Trust couldn’t look
after Connor properly.
This stood out to me from an insightful blog by Chris
Hatton: ‘The excerpts from the report ooze perhaps the central feature
necessary to bystander apathy, diffusion of responsibility. Both within the
unit but also crucially beyond it (how did LB end up in the position where the
unit was the only option? What was the plan for what he was going to do after
he left? Why were his family marginalised? Where were the Wizard of Ozian
commissioners in all this?)……..no-one stood up and took responsibility for
ensuring that LB could work towards the life he and his family wanted. The very
quantity and range of professionals and organisations involved, far from
showing the marvellousness of LB’s support, may have been a factor in his cruel
lack of effective support when it really mattered.’
What will it take before families of children and young
people with developmental difficulties get the quality of service they
deserve? I don’t know the answer to that
but I do know I’m ready to stand up and be counted with Connor’s Mum and other
supporters who want to a) see Southern Health brought to justice and b) bring
about change to service provision for people with autism (and with or without
learning difficulties).
I was struck, when reading through Sara's blog, by the part
she wrote about LB wanting a girlfriend (tears are welling up now) and this
being a possible contributory factor to his decline. The poor lad just wanted
what we all want....and why wouldn't he? We all need to be connected to others,
to feel valued and loved...and not just by our family who are going to love us
unconditionally whatever.
When he needed connection the most….when he was vulnerable,
anxious, confused about his future, needed help from people outside the family
who could take the time to understand what was going on for him, the only place
LB could go was a Unit with what the independent report describes as an
‘impoverished’ social environment and a culture of supporting (?) people with
medication and restraint.
I woke up this morning wondering what ‘good provision’ would
look like for young people with developmental difficulties in this
situation. It’s a bit of a jumble, but I
think it would include elements of these 4 things:
This service offers parents and carers a true alternative
when it comes to choosing services for their adult children. Established by
parents, every aspect of the service is approached from the viewpoint of what is
best for the individual, rather than what is necessarily best for the company.
Where others may compromise we don’t. If a room needs
modifying, it will be done; if an individual’s needs require specialist staff
training, it will be implemented; if an individual’s support needs change, they
will be reassessed and a new support program devised.
If something unplanned happens, there is a proactive approach. Staff learn from
experience and take any necessary actions; everything is open and transparent
whilst respecting the privacy of the individual and their rights.
These commitments make a difference to the lives of the
people being supported, to their families, to the staff and to other
organisations.
The unique, no-compromise approach values each individual
and every aspect to their life, essential to that sense of feeling at home.
The very fact that parents set up this service gives me huge
confidence in its potential to meet need and to care rather than caretake.
A way of intentionally creating a culture based
on authentic, unconditional and reciprocal relationships. No matter what.
We think about how our human presence feels to another
person.....
Does it make them feel safe?
Do they feel loved or cared about by us?
Do they feel able to care about us or show loving
kindness to us?
Are they feeling accepted and welcome
enough to join in with us?
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Here is a video
explaining more about the approach.
Integrative psychiatry
Integrative psychiatry uses both conventional and
complementary medicine remedies in the treatment of psychiatric
conditions. This means being attentive
to the many dimensions that affect both distress and psychological wellness,
including a person's physical, emotional, interpersonal, behavioral,
nutritional, environmental and spiritual dimensions. Metabolic testing (e.g. hormones, adrenals,
neurotransmitters, thyroid, allergy) may be used to look at chemical imbalances
in the body that may be contributing to emotional and/or physical dysregulation
so that these can be corrected in order to optimise wellness.
RDI recognises that because of their different neurological
wiring, people with autism and other developmental difficulties have problems
coping with uncertainty and change. This
often causes high anxiety, resulting in flight, fight or freeze (withdrawal,
aggression or collapse). The
unpredictability (ongoing change) that is a key feature of social interaction
can also be very difficult. RDI uses
dyadic (pair) relationships to gradually expose people to increasing amounts of
change and unpredictability in a way that actually supports them to develop
their own competence in managing uncertainty: by using their partner as a point
of reference to decide what to do when presented with uncertainty and by
forming special memories of their own competence in managing uncertainty that
they can use when presented with a similar uncertainty in the future. This is actually how typically developing
people learn, as babies, toddlers and youngsters, to cope with and
(importantly) enjoy uncertainty and change….so RDI mirrors a natural
process.
Some of the earlier posts on this blog show me working with
my son to do exactly this. This blog
shows another Mum working with her son who has learning difficulties as well as
autism. RDI can be used with people on
any part of the autism spectrum, at any age.
So my melding of the above 4 components is not about locking
people away and medicating them….or at least if they are medicated, due to
crisis, it’s for a short time and within the context of a plan that seeks to
get to the bottom of their crisis experience and get them off medication
asap. It’s about establishing a
relationship of trust….where our young people feel safe, accepted and
loved. It’s about accepting that they have challenges, that they need
specialised, sensitive and multi-faceted support to help them to work through
those challenges so that they can achieve the best quality of life
possible.
If someone is struggling with the transition to
adulthood…..developing an awareness that peers and siblings are starting to
have romantic relationships and realising that this is going to be hard for
them because of their differences……their need for connection is not going to
disappear with medication or incarceration.
Look at the common threads running throughout each of the 4
examples above…..relationships, connection, the investment of time and
understanding, trust.
Imagine if that had been available to Connor and his
family.
The #JusticeforLB campaign has been put together to try and
draw attention to his preventable death, ensure that people know about him and
that change occurs. If you are on
Twitter and wish to comment, please use #JusticeforLB.
LB’s family is raising funds to cover the costs of legal
representation at the inquest into his death.
Here is a link with further information on how you can help.