Day 3: Letter for Connor #107days

12 JUNE UPDATE: The letter has been published in The Guardian today to coincide with the House of Lords debate on premature deaths of people with learning disabilities. The final text and full 560 signatures/names are available to view here. If we missed you off, or you missed the opportunity, please don’t worry. You can add your name in the comments if you wish, but there will be further opportunities to get involved with letter writing this weekend, Day 85.

We believe that the success is in the collective action, not individual names, and we’re very grateful to those who have worked hard to get this written, edited, comments taken on board, and submitted in time for today’s debate. Especially Jill and Chris. As ever thank you to all of those supporting us, whether your names are on the letter or not x

UPDATE: The revised and shortened version of this letter is below. If you would like to sign this letter, and you haven’t already provided your name, please email Jill with the email title ‘Signing in support’ and your name as you would like it added to the letter in the body of the email by June 13th. Thank you….

Justice for LB letter to The Guardian

Final draft 6th June 2014

The Guardian has reported (Guardian Society 21 May) on the preventable death of Connor Sparrowhawk  (nicknamed LB or Laughing Boy).  Connor was placed in a small, highly staffed, specialist assessment and treatment unit for people with learning disabilities (LD).  He had an epileptic seizure and, unobserved by staff, drowned in the bath. The #justicefor LB #107days campaigns are about getting justice for Connor and changing the status of people with learning disabilities and their families within services and society.

Over 3,000 people with learning disabilities and/or autism in England are in similar units at a cost of over half a billion pounds per year. People are likely to live in these units for years, to be placed a long way from home, to be treated with major tranquilising drugs and to experience self-harm, physical assaults, restraint and seclusion.  Currently, more people are being transferred into such units than are transferring out.

We believe that support for people with learning disabilities and/or autism and their families should have four basic principles:

1) We should support people to live long, healthy, fulfilling and meaningful lives.

2) A learning disability and/or autism is not a health problem.  Any additional health problems should be taken seriously and we should make sure that our health services work just as well for everyone who uses them.

3) We should respect, value and work closely with families and others who care about the person.

4) We should make sure that commissioners and providers are using the best available evidence to make decisions. 

For over 20 years we have known how to do this. We know how to provide good support for families with young children. We know how to support people’s health needs. We know how to support people, including people who are distressed, to live active, meaningful lives within their local communities without the need for specialist drugs or major tranquilisers. And we know that all of these things depend on people with learning disabilities and/or autism and their families being respected as equal citizens.

****************************

 

ORIGINAL VERSION

Day 3 was adopted by Jill Bradshaw and Julie Beadle-Brown of The Tizard Centre. They have drafted the following letter. We are now looking for comments, edits or additions for this draft *and* for people who would like to sign it. We hope to gather at least 107 signatures, hopefully more. Please add any thoughts and your name as a comment to the draft. If you exist on social media anonymously but would still like to sign please email us.

Connor Sparrowhawk spent 107 days in an Assessment and Treatment Unit (ATU).  He drowned in the bath.  An independent assessment concluded that his death was preventable.  We have come together over the last months as a collection of individuals who are shocked and outraged by what happened, as a group of people understand that we are all responsible for what happens to vulnerable people in our society.

We would like to highlight the following points from the independent report:

  • The lack of appreciation of Connor’s family as having expertise about how to care for him.   It is astonishing that Connor’s brother was not allowed to visit, despite there being nothing in the policies to suggest that this was not allowed;
  • The lack of training, skills and leadership in managing epilepsy and in using person-centred approaches;
  • The lack of understanding and awareness of autism spectrum conditions;
  • The lack of practice leadership;
  • The woefully inadequate care plan;
  • The lack of understanding about mental capacity and the issues around supported decision making.

Many of the recent reviews and reports were clear that the majority of people living in ATUs should not have been there in the first place and should certainly not have been there for the length of time that they were.  NHS England statistics highlight that, of the 2577 people recorded as living in ATUs ,only 260 have transfer date and only 107 by June 2014 deadline.  More people appear to be going in to ATUs than are being moved out.

Connor and his family needed some additional services at a time of crisis.  There were limited local services which could be purchased.  This is unacceptable.  Why are we still not providing good local services?

Some issues to think about:

Did you know that in Norway it was made illegal to establish a service for people with intellectual disabilities for more than 10 people…..? In the UK it is still legal to set up a service for 30, 40 people.

Did you know that economies of scale do not exist if you care about whether people experience at least relatively good outcomes?   The bigger the service, the fewer the staff, and the less time staff spend with people and the lower the levels of engagement.

Did you know that people in supported living or those receiving individualised services are more likely to be receiving good support?

Did you know that good support is not guaranteed, regardless of how much the service costs?

Did you know that good support depends on the skills and motivation of staff working in the services and the leadership they receive?

Did you know that you can’t judge the quality of the service just by talking to the people providing the service, that you have to go and spend time observing (in addition to talking to people themselves where possible) to find out information about the quality of life of the people living there?

Did you know that only between 20 and 30% of people with learning disabilities receive good and consistent support that enables and empowers them?  Those with more complex needs including challenging behaviour are less likely to get good consistent support.

Did you know that even in services which are considered good……..

  • on average, people with IDDs only spend around 40% of their time engaged in some form of meaningful activity or interaction?   (By the way, this is the level of engagement  that we also find for people who are in their 80s).  Think about it – an average of 60% of the time doing nothing meaningful.
  • on average, people with IDDs will only have any contact (from staff or anyone else) for at most, 15 minutes in every hour?  That figure also includes negative contact, being told not to do things, having things done to you, just having your wheelchair pushed etc.  Imagine it.  That means for 45 minutes in every hour, no one talks to you or touches you. What a life of isolation…..

Did you know that on average people with IDDs are likely to get direct help to take part in meaningful activities and relationships for less than one minute in every hour?  (Isn’t that the point of services – that people need this help to take part in activities and relationships?)

Did you know that it doesn’t require more staff or cost more money to provide good support for people than it does to provide mediocre or even down right awful support for people?

Did you know that researchers in the UK have generated more research and resources on how to provide good quality services and support for people with intellectual disabilities and people with autism than almost anywhere else in the world?  What would Jim Mansell have said? Well actually he (and many others) have already said it.  It is all there in the Mansell reports.  Now all we need is action.

Tizard Centre have also adopted Day 23, the day of the Jim Mansell Memorial Lecture.

 

110 thoughts on “Day 3: Letter for Connor #107days

  1. Signed in support. I would also like to add my own thoughts on what a good service might look like, incorporating the following principles:

    Home from Home Care

    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.

    Gentle Teaching

    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?

    Here is a video explaining more about the approach: https://www.youtube.com/watch?v=wODKRQ21PeY&NR=1

    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, behavioural, 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.

    Relationship Development Intervention (RDI)

    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. http://www.rdiconnect.com

    Zoe Thompson
    http://notnigellanotjamie.blogspot.co.uk

  2. Signed in support. It is a fallacy that all A&TUs are big institutions. My son was in one that had four bedrooms. It is also much cheaper to provide great home support than the cost of these places.

  3. Signed and as mum of 16 year old autistic son who is learning disabled ~ with PTSD due to restraint at a specialist day school, but now in appropriate residential Barnadoes school, I whole heartedly support this. Thank you for fighting for all our children.

  4. Good local care is essential, but do not let’s kid ourselves into thinking a death of this kind could not have happened in a small, local social care facility. It is true that most people in Assessment and Treatment units would not need to be there if better more local services were available. This ought to be a priority for the NHS and Local Government. But whether a facility is called supported living, residential care, or a hospital, it should be unacceptable for a person living there to drown because staff did not listen to family concerns and forgot to think about the implications of his epilepsy. If a person is in a NHS unit they deserve high quality caree as much as if they are in a voluntary sector or private facility. It does not matter whether health or social services pay either. People with learning disabilities deserve care that is based on their unique individual needs and takes account of their individual strengths and vulnerabilities . Paid carers need to recognise the expertise advocacy and skills of families. Society must take the lives and deaths of people with learning disabilities as seriously as it does those of other citizens. Some highly vulnerable people really do need services that are far more expensive than A&T units to enjoy a good quality of life. Here in Cornwall we have no A&T Unit and are minimising our use of out of county provision. This has not eliminated abuse, neglect or hate crime, or even the development of large, geographically isolated, (but non-health) facilities. Would we expect it to?

  5. All the above is true and should be info parents have before a decision is reached about their relative being admitted. They probably would then never agree, but are often not given any other options. However, there is absolutely no need for people with learning disabilities to be incarcerated miles from home if good quality support is offered when required, which is often, in my experience, when they are struggling during adolescence.

  6. Signed in support. Beyond the points in the letter, the independent report (by not mentioning them) and the CQC report make it clear there were huge issues around basic risk assessment and leadership in the unit.

    David Gillon

  7. As an English teacher, cannot help a bit of editing as it is a draft. Hope you will take it in the spirit is intended, and please ignore if you disagree!
    1. Semi colon in first paragraph after happening.
    2. Should Connor’s age, and the fact that his epilepsy was NOT difficult to manage be included? (This really was a Death by Indifference, or extreme, inexplicable carelessness.)
    3. Mention that this was a SMALL unit with many staff and few residents
    4. CQC findings AFTER improvements were supposed to have been made – dirty, ill equipped.
    5 Paragraph about how little attention – staff didn’t even make eye contact!

    Hope this is not out of order

    Happy to sign as Maureen Barnes

      • I agree with Liz’s comment. This actually was a relatively small, relatively local unit . Connor’s epilepsy should have been relatively easy to treat. While I do not think that anyone should be in a remote unit, whether that unit is publicly or privately provided, or designated as heath or social care, I am not sure that this tragedy supports the case. We may be tacking on issues that we know are important for everybody with learning disabilities. I’d like the letter to start with who Connor was. How he died and move on to the lessons for services. Number one is to treat person as an individual. Number two is to listen to parents
        Will sign as Jane Bernal

  8. Signed in support and in hope that in the future treatment and assessment units are used for just that; to properly assess and treat where appropriate person centred interventions are formulated to increase quality of life individuals with IDD. That they are not just used as a last resort because of a lack of to good quality local services.

  9. Pingback: Day 3: Letter for Connor #107days | My Blog

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