#7daysofaction …and a Ninja Project?

This one is for the people who have made #7daysofaction happen – awesome. It starts with some quotes from early in the week.

Monday 18th April 2016 sees the start of a campaign to raise awareness of the thousands of learning disabled people currently being held against their wishes in assessment and treatment units. Often, these units are hundreds of miles from the person’s home. The average time spent in an ATU (assessment and treatment unit) is 5.5 years. The average cost per week for treatment in an ATU is £3500. Mark Neary March 2016

What kind of therapeutic environments prescribe antipsychotics to 72% of people in them, when 6% of people have a psychotic disorder severe enough to require treatment? Or have administered rapid tranquilising medication to 11% of people in the last 28 days, used seclusion on 13% of people in the last 3 months, or used hands-on restraint with 34% of people in the last 3 months?..

…all the apparent scientific expertise of professional groups, the professional logic for inpatient services is sealed and impervious to argument. People in inpatient services are complex and dangerous, therefore antipsychotics, seclusion and restraint are required. If people show signs of being intensely distressed in the unit, this isn’t a sign that the unit is failing or actively making things worse, but a sign that they need to stay in the unit and get more antipsychotics, seclusion and restraint, or to be transferred somewhere further up the ‘security’ hierarchy. The notion that an inpatient service is making people distressed, and the alternative is freedom rather than more restraint, doesn’t seem to occur. Chris Hatton 18th April 2016

‘I don’t want to live here, I would give it one out of ten. I like looking after animals best. I want to live in London near my mum’. Eden Norris in Mark Neary 18th April 2016

So in this week of action, we all need to think about how the lives of people with learning disabilities people might become less precarious. The peeling wallpaper, un-cleaned rooms and the defibrillator with no battery in the ATU that warehoused LB stand as powerful symbols of the low expectations and a poverty of aspiration that linger, like a stubborn stain, in the very systems and services designed to support people with learning disabilities. This week we need to imagine things otherwise and to do this we need to keep tight hold of the belief that this ‘disability issue’ is, above all, a human rights issue and that 1.5 million people with learning disabilities have the same rights to live happily in their communities as everyone else.”  Katherine Runswick-Cole April 2016

Everything starts & ends with communities, not commissioners & people not professionals.

Rob Mitchell on twitter April 2018

Most of this was posted on or before the first day of #7daysofaction and I don’t know about you but I found it disturbing, moving, impressive and inspirational all at the same time. And then I got into a twitter conversation with the mum of one of the dudes who encouraged me to do what I could to support #7daysofaction and I told her I was working on something – well I have been but I’m not sure if it’s a good idea or not so I guess the best thing to do is to ask people – so here goes.

A Ninja Project?

Why

After Winterbourne View and The Confidential Inquiry into the Lives of People with Learning Disabilities the government launched a tranche of investigations, reports and initiatives to help to ensure that the care of people with learning disabilities would be transformed – imaginatively their principal initiative was called Transforming Care. One of the objectives of Transforming Care was to ensure that people who were stuck in Assessment and Treatment Units (ATUs) should and could be returned to their communities and able to live near their families, and hopefully in homes of their own. Other objectives included establishing a list of reasonable adjustments and priority interventions and setting targets that would help to improve the care that people received in NHS funded organisations, with the hope that this would improve the life expectancy of people with learning difficulties.

If we are being kind I guess you could say that #7DaysofAction came about because Transforming Care hasn’t been as successful as might have been hoped and because there is an imbalance in power between the people who are in ATUs and the people who keep them there.Or if you are being less you could say that it came about because of the appalling injustices that people with learning disabilities are still having to endure. As the week has gone on the sheer horror of what we have been told has mounted and profound questions have been raised about the ways in which some leading practitioners wield the huge amounts of power over the people that they have in their care.

From what I have seen the general response to #7DaysofAction and the brilliant work of Mark Neary and the other families has been great.  However, as we all know most of the trust’s and local authorities that need to respond to this with action, will just try and keep their heads down and hope that all the attention goes away. Whilst the government, would appear to be hoping that the 48 Transforming Care Partnerships that it has set up and who will be publishing their plans in the summer will distract the media from the current poor rate of progress. But before anybody invests too much hope in the government’s plans; it’s a good time to remember that these would be the same trusts that are currently in the middle of a funding crisis, are short staffed and have the worst industrial relations that I can remember.

So whilst I have every sympathy for people working at every level within the trusts. The purpose of this Ninja Project would be to make it impossible for reluctant providers and commissioners to deal with this problem by hoping it will go away. It would continue the focus on individual campaigns to get people back in their communities started by #7daysofaction and through those stories and publicly available strategic data (of the kind that Chris Hatton has been churning out at an awesome rate this week) it would challenge progress that is being made in individual cases and the progress that is being made in delivering the Transforming Care Partnership Plans. In this way we will be able to challenge practice at the level of the individual, then set that against the actions and current performance of providers, trusts and local authorities and then where possible and necessary identify where the human rights of individuals are being breached.

With that overall aim in mind I would imagine that this Ninja Project could have the following specific objectives.

Objectives

  1. To create a web application and content management system that will:
    1. Allow people with learning disabilities, their families and practitioners to co-ordinate their efforts to get people with learning disabilities back to their communities. With the following suggested functionality:
      1. A sub-domain for each person providing a short bio and an update able summary of their current status.
      2. The sub-domain would be person centered allowing the young person, their families and practitioners to add approved content to the sub-domain.
    2. Create an audit trail that will allow the young person, their families and practitioners to track what steps had been taken and thereby identify roadblocks to progress.
    3. Be supported by an ethics and good practice agreement developed in accordance with the requirements of the Mental Capacity Act that would ensure that the best interests of all involved in the project are protected. This agreement would be incorporated into the development and design of the site;
    4. Provide a searchable knowledge resource for families and practitioners. Including Human Rights and due process checklists;
    5. Have a blog through which people with learning disabilities, families, practitioners can share their experiences and ideas.

How

Normally when you do this kind of thing – the person or team with the idea writes a fairly detailed plan and then gets approval or funding and then (after ages) gets on with it. But if it is going to work this project has to belong to all of us;  people with learning disabilities, families, practitioners, researchers, campaigners and experts of any kind who want to get involved. NHS England has been talking a lot about empowering patients recently and has been promoting the idea of the NHS as a social movement providing funding to ideas that it thinks are appropriate. Well I don’t know or care if they think that the movement to get people out of ATU is appropriate – but we do.

But as I said this idea will only work if it changes and becomes everybody’s. So rather than me writing a detailed plan at this stage, the first of the next steps would be for you to let me know what you think of the idea and if you think it’s a good idea what you think we would need to do to make it work for you. And if enough people think it’s a good idea we get together and work out how we are going to make it happen.

At this stage it’s probably important to let you know that I can do most of the technical stuff (for free) although if there are other people who want to help with that that would be great. However, the biggest challenge will be developing the project plan, researching and writing the content, creating the Ethics Agreement, Helping to compile checklists, working out how we do the governance and quality assurance, the minor issue of long term funding etc etc.

Anyway that’s my idea and as Rob Mitchell said “everything starts and ends with communities” and as far as I can see this community has had enough – but I could be wrong so let me know what you think.

 

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About MLB

Carer, Developer, Social Researcher and Activist
This entry was posted in SEN and Disability. Bookmark the permalink.

6 Responses to #7daysofaction …and a Ninja Project?

  1. Hi, I would be more than happy to help with admin. I have over 25 years secretarial and virtual assistant experience. I can do copy typing and digital audio typing at 60wpm. I am one of the admins for the seven days facebook group and I run my own group Autism and Residential Care. My son is 20 and has autism, severe learning difficulties and epilepsy and resides during the week in a residential care home so I have some time to spare to help you.

    Liked by 1 person

  2. Pingback: News From The Past Seven Days | Life For A Learning Disabled Person 2016

  3. Hello. Found your blog following a link from a post about the 7daysofaction campaign. Reading about the campaign has been interesting and stimulating and is a reminder that there are people with real lives and realisible rights behind what can seem complex and intractable cases. The only thing that troubles me about the 7days campaign is that the confidentiality of service users has been compromised. Doubtless families would say that this a position they’ve been forced to by intransigence. Famously, Mark Neary exposed his son Stephen’s situation in the media before the issue was brought before the Court and I’ve seen his endorsement of the 7days campaign. There are some real tensions between different rights in this sort of activism.

    I don’t doubt your good intentions about your ‘Ninja project’ but I have to ask two questions. The first is: doesn’t confidentiality matter at all? The second is, since the aim would be to ‘Create an audit trail that will allow the young person, their families and practitioners to track what steps had been taken and thereby identify roadblocks to progress’, how would you prevent the resource being used to identify individual professionals and decisions makers and degenerating into the sort of ‘name and shame’ social media site you can find on Facebook inviting people to trash and vilify individuals?

    Found some of the other stuff on your blog interesting and, notwithstanding my queasiness, I am sure the 7days campaign has done some good.

    Like

    • MLB says:

      Hi thanks for this – a challenging comment – there are some very important issues in this so I am going to post my response as a blog. Cheers m

      Like

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