Saturday, 23 April 2016

#7Daysofaction: Using the power of the pen


#7Daysofaction started on Monday 18th April 2016.  The campaign has been launched by the mothers and family members of people with learning disabilities (and often, autism) who are currently trapped in Assessment & Treatment Units (ATUs).

These people have committed no crime but in many cases (read the stories in the links below) they are treated worse than criminals. Some have died as a result of neglect and poor care in state funded institutions.  Most have not been diagnosed with a mental health condition, yet are detained under the Mental Health Act and they remain in Units for years at a time.  

The Mental Health Act is one of the villains in this sorry tale because it defines autism and learning disabilities as ‘mental disorders’ and this is one of the things that contributes to people getting stuck in the system.

There are currently 3000 people in ATUs and the average cost of being kept in an ATU is £3500 per week…..yes, per week.  That’s your tax spondulas right there.  All these detained folk want is to be living back home with their families or living in their own homes with support.  They just want an #ordinarylife.

Click here to read about Robert, Stephen, Tianze, Thomas (a harrowing story particularly close to my heart), Jack, and Eden, with P’s story tomorrow.  And as well as Thomas, let’s not forget Connor Sparrowhawk, Nico Reed and Stephanie Bincliffe, who all died preventable deaths in ATU-type provision and whose families are still awaiting justice.

The current situation

There have been plenty of reports and inquiries and Concordats and breakfast meetings and questions in the House about what to do about this national scandal………the fact that we are yet to see any meaningful change is extremely frustrating.

I guess we just have to keep doing what we can.  Some of the families are in discussions with top legal bods about a group legal action, using the Human Rights Act on the basis that the Mental Health Act treats people with autism/learning disabilities differently than others without justification.  This would set an exciting legal precedent, if successful.  It gives me great hope.

One thing those of us not directly affected can do is to use the current statutory framework for service provision to make sure that our own local Commissioners are doing what has been recommended at a national level.

which has been developed with the help of people with lived experience, clinicians, providers and commissioners, and which sets out the range of support that should be in place no later than March 2019. 
Reading through the first document, I noted that 6 ‘fast track’ areas drew up plans in Summer 2015 and according to ‘Building the Right Support’, are ‘already making a difference on the ground.’ Hmmmmmm……………

The 6 fast track areas are: Greater Manchester; Lancashire; North East and Cumbria; Arden, Herefordshire and Worcestershire; Nottinghamshire; Hertfordshire.  I live in Greater Manchester and so took the opportunity to ping the letter below off to the Commissioner who is responsible for fast tracking everything in Greater Manchester.

I would strongly recommend that anyone else who lives in one of these fast track areas writes something similar to their responsible Commissioner.  Please feel free to plagiarise my letter to your heart’s content and let’s see what happens……

Citywide Commissioning & Quality


Re: Transformation of services for people with autism/LD

In the national plan to modernise care ‘Building the Right Support’ it states that 6 ‘fast track’ areas drew up plans in Summer 2015 to shift money into community services in order to reduce their usage of inpatient provision by approximately 50% over the coming three years.  I understand that Greater Manchester is one of these ‘fast track’ areas.

I would appreciate it if you could provide answers to the following questions:
  • How many people from which Greater Manchester areas with autism and/or learning disabilities (LD) are currently placed in which out of area ATUs or similar institutional care facilities?
  • How are Commissioners in Greater Manchester extending the offer of statutory and non-statutory advocacy to people with autism/LD who are leaving a hospital setting?
  • I note from the NHSE ‘service model’ that recommendations have been made to ‘risk stratify’ each local population of people with LD and/or autism and would like to know how this risk stratification is to take place within each relevant area?
  • How is this risk stratification co-ordinated with what is known from information available through EHC Plans?
  • Please can you point me to the public web sites for the GM CCGs that give details of the Local Offers covering the expanded use of personal health budgets?
  • Who are the local ‘care and support navigators’ for Oldham and Tameside?
  • How are the needs of people with LD/autism being planned into housing strategies that enable people to live as independently as possible rather than in institutionalised settings?
  • I understand that there are to be six local crisis beds and an in-reach/outreach team providing safe, short, intensive support when needed.  Where will these beds be located and what will be the nature of the intensive support?
  • I also understand that as part of the Greater Manchester Public Sector Reform Programme, there will be a formal evaluation assessing the impact of the improvement plan over 18 months.  What will be the success criteria for this evaluation and who will undertake it?

I look forward to hearing from you shortly.

I got this response by email on 12.4.16:

‘I will share with my LD and PHB leads and look to draft a response back to you very shortly.’

As I was getting to the end of drafting this blogpost, the Labour candidate who is standing in the upcoming local election in May called at our door. So there I am on a Saturday morning standing in my dressing gown, holding the dog, complete with bedhead, giving the candidate chapter and verse on people with autism and LD trapped in ATUs and asking her what she will be doing to ensure the Greater Manchester-wide plans are properly implemented locally.

That interaction reminded me that I have the shadow Minister for Disabled People as my MP.  I think it’s time I paid her a visit.....


  1. Great work, Zoe, bravissima, concrete how to do it for people who want to help.
    Not resident in UK at present but would be getting engaged with this if I were.

  2. Thanks Shonagh. It's so lovely to get feedback, I really appreciate you taking the time to do it :)