Tuesday, 25 November 2014

Letters from the edge

At H&SA this morning, like many, we are feeling sadness, despair and impotence about the verdict of the inquest into Stephanie Bincliffe's death.
There will no doubt be hand wringing and calls for change but it feels hollow and meaningless after so many deaths, abuses and injustices that still go on today and every day.
We have different messages for different people and organisations involved in the continuing incarceration of people with learning disabilities so we wanted to write publicly to all of you;

To the family of Stephanie Bincliffe,

We are so sorry for your loss. Stephanie’s death could have been prevented and we are aware that unless we have been through it, none of us can begin to understand the depth of your pain and grief. 

Your statement about Stephanie’s death and the inquest for the Challenging Behaviour Foundation is beautiful in its recognition of Stephanie as a beautiful, unique and valued human being. We are sorry that our appalling system did not see her in this way.      

“Beyond question Stephanie was a unique individual who was a teacher in disguise to those who listened. I feel there are no words to begin to describe her loss to me; however I feel this was her final lesson to us all. 
“Stephanie had a beautiful mind which was often misunderstood; my life has an emptiness now she has gone. My only sanctuary is that now she is truly free. Anything that happens now as a result of her passing on will be bitter sweet for me. As a family we relentlessly did all that was possible for us to do in our power, to no avail. We felt that we had no voice and we could only watch in agony as the one we loved and knew deteriorated and faded away. 
“As a family fighting for Stephanie it felt like a real life David and Goliath battle but with no triumphant ending for the underdogs.”

Our love and thoughts are with you,

The team at H&SA

To providers of Assessment & Treatment Units,

Some of you take huge amounts of money from the state to provide an ‘expert’ service. Some of you are the state. If you are not expertly and successfully assessing, treating and discharging people who genuinely need to be in secure services, STOP DOING IT.

 I don’t want to hear anything about learning lessons and improving quality. If you don’t know what you are doing now in 2014, post Mansell Report, post Valuing People, post Winterbourne View  with all the information and resources available that show how it is done well, you are not fit to be providing services to vulnerable people and you should just get out of this business all together. 

Please don’t try and rebrand your services as community based, supported living blah blah blah…. There are plenty of good providers already out there and we don’t need you.

Some of you will throw your hands helplessly in the air and plead powerlessness in the hands of commissioners that keep asking for your services. It is no excuse. Taking exorbitant amounts of money from a cash strapped sector where people aren't getting basic needs met and at best providing services that don’t do what they are supposed to do (at worst separating people from those they love and making people’s behaviour worse and in some cases ending in death) is making money off the back of incompetent commissioning and is immoral and obscene. An organisation that does this can never achieve the culture and values that are needed to provide brilliant services, so please just go.

yours faithfully,

Alicia Wood
Housing & Support Alliance

To commissioners that place people in ATUs,

Don’t send people to ATUs unless they really need it ( see Mansell Report 1 & 2 and Chris Hattons’ estimate about need http://chrishatton.blogspot.com.es/2014_07_01_archive.html ) . If you think that more than the tiniest percentage of people need to go to an ATU, you are not sufficiently knowledgeable and skilled to do your job and should get another.

If you feel that there is no alternative, this is not true - there is. There are plenty of housing and care providers that are supporting people with the most ‘challenging behaviour’ to live in their communities successfully. Call me and I’ll tell you who they are (tel 020 7993 8361). It’s that simple.

If  you spend the huge amounts of money that you would usually spend on ATUs on services that people and their families want and if you put your energy into working with families instead of fighting them and wearing them down, you are likely to be successful in getting a good result (and it is likely to cost you less). If you think that is not true and that you know best, you should probably not be working in this field and it is time to get another job.

For those commissioners with historical problems that mean you have lots of bad practice to undo, I feel for you and know it is hard, but there are plenty of us out there that can help. If you work with organisations, policies and practice that put you in impossible situations, stand up and say you will only do it the right way. Go public if necessary and speak out against bad practice, tell those in charge, go to the press, go on social media. If you can’t do this (and I respect any employee that is in fear of speaking out) then get another job and don’t collude with these injustices against people with learning disabilities.  

yours faithfully,

Alicia Wood
Housing & Support Alliance

To psychiatrists that will not discharge people from ATUs,

A small minority of people need to remain in secure services (read Mansell reports 1 &2 and Chris Hatton’s blog http://chrishatton.blogspot.com.es/2014_07_01_archive.html ) . Most people will fare better with good support in their communities. People should not be detained just because you work within a medical model and don’t understand how people can live successfully in their communities.

If you need to understand this better and avoid illegally and immorally detaining people in secure services, call me (020 7993 8361) and I will put you in touch with the right people and organisations to get the help you need. If you don’t believe that most people with learning disabilities and autism don’t need secure services, you should get out of this sector and find another job.

yours faithfully,

Alicia Wood
Housing & Support Alliance

To the people and families that continue to experience this injustice,

I am so sorry this crap continues. We want you to know that there are many people and organisations out there who are willing to roll up their sleeves and take action, put their hands in their pockets and shout to change all the awful stuff that is going on. Sometimes we also feel impotent but we are not prepared to give up and will stand with you.

The Challenging Behaviour Foundation (tel 0845 602 7885), Respond (tel  0808 808 0700) and H&SA  (0300 201 0455) all have great advice services if you or your family member is in distress or at risk of being sent to secure services when they need help to stay in their communities.

There are a group of people, families and allies trying to change the law to make it harder for people to be sent away from their families called the #LBBill , please get involved and pledge your support http://lbbill.wordpress.com/

To get involved in campaigning together to challenge theses injustices and change policies and practices join the Learning Disability Alliance because together we are stronger. www.learningdisabilityalliance.org

There are people, lawyers and organisations that can support you well so don't be palmed off with the wrong service and shout, scream, beg or do whatever it takes until you find them. 

In solidarity,

Alicia Wood
Housing & Support Alliance


  1. Couldn't have said it better. Well done!

  2. Such a powerful blog. Thanks Alicia. Time for action.

  3. Spot on. I hope a way can be found to hold Commissioners and providers of crap services to account.

  4. Thanks Alicia, all that you have said is so very true