This is a short post to draw your attention to various developments in the #JusticeforLB campaign. As readers will know, LB (‘laughing boy’) drowned in the bath in an assessment and treatment unit run by Southern Health. An independent report found that his death was ‘preventable’, and various investigations into his death are still ongoing.
As I’ve written about previously, LB’s death resonated with wider concerns about the ‘care’ of adults with learning disabilities – their institutionalisation and isolation, and a systematic pattern of preventable deaths. His death sparked the organic, creative and totally unique 107 Days Campaign, as people ‘adopted’ days that commemorated LB’s detention up until his death, to write, reflect, campaign, create and otherwise raise awareness of these issues. One of the projects that came out of the 107 Days Campaign was the Justice Quilt:
The Justice Quilt evokes, to me, everything that was powerful and inspiring and beautiful about the campaign – it’s creativity, collaborative nature and contributions from a wide range of people from around the world.
The beauty of the quilt throws into sharp relief the murky behaviour of Southern Health that has come to light in recent weeks. In early October, the CCG sent the family a document that they had not seen before – despite requesting all documentation from Southern Health. The document was entitled ‘Background Briefing on Mother’s Blog’. It detailed surveillance by the Trust of Sara’s blog, including posts she had written about her concerns that LB had been having undetected epileptic seizures. It was written the day after LB died. Later on in October, the Coroner sent Sara two documents they had requested from the Trust but not received – the initial management assessment and the SIRI (Serious Incidents Requiring Investigation) 72 hour report. There is a section in the SIRI report that says ‘Immediate service delivery risks or concerns’, and underneath is written ‘Mother’s blog may cause a risk to the reputation of the organisation’. And then at the end of last week, some PowerPoint slides surfaced on Southern Health’s own website (since taken down) with the heading (on each slide) ‘Could it happen here? Connor Sparrowhawk’. On one slide Southern Health wrote ‘What worked well? Staff provided resuscitation in line with policy and procedures’. Setting aside that CQC were critical of their resuscitation training and noted that the battery in the defibrillator was flat, LB died. Even to write these slides, let alone post them online, beggars belief. Sara responded with characteristic creativity and thoughtfulness by producing a counter-PowerPoint on Engaging with Families After the Preventable Death of a Loved One – let’s hope this really is used in staff training.
The most recent development in the #JusticeforLB campaign is the production of a draft Bill – the #LBBill. The Bill has been developed by Sara and Rich (LB’s family), Steve Broach (a barrister), George Julian (the 107 Days campaign manager) and Mark Neary. Like the 107 Days campaign, the emphasis is on community engagement and ‘crowdsourcing’ ideas to tackle the intractable question of the institutionalisation of adults with learning disabilities and autism.
The purpose of the LB Bill is set out in the Explanatory Notes:
The draft Bill contains a range of provisions which are intended to reinforce disabled people’s right to live in the community unless residential care is strictly necessary. The basic idea behind #LBBill is that the law should make it harder for the state to force disabled people to go into institutions and to keep them there, where this isn’t what the disabled person and / or their family want. Unless the measures in the bill are adopted by government, the campaign plans to lobby backbench MPs to adopt the bill in the 2015 Private Members Bill ballot.
The draft Bill itself:
- places local authorities and the NHS under a duty ‘to have due regard to the need for disabled people to be fully included in their community.’
- includes a clause that appears designed to counteract the effects of ‘Maximum Expenditure Policies’ by stating that in exercising assessment and care planning functions it is not permissible to ‘take into account either the cost or availability of residential care where a nonresidential service is requested by the disabled person and / or their carer.’
- includes a general duty ‘to secure a sufficient supply of in-home, residential and other community support services for disabled people, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community’ which looks a little bit like the market stimulation duty in the Care Act with an emphasis on the services required under the ‘right to independent living’ under the Convention on the Rights of Persons with Disabilities;
- there is a duty to secure ‘the most appropriate’ living accommodation for the person, and in determining this ‘ the disabled person’s wishes, feelings and preferences’ must be treated ‘as a primary consideration.’ LA’s and the NHS must also ‘have regard to’ the need to ‘ensure disabled people remain in or close to the local community with which they identify…maintain links between disabled people and their family and friends; and… support disabled people to access employment, education and / or training and other activities in the community.’ The clause then states that ‘In determining which available living arrangement is most appropriate, the financial resources of the local authority or NHS body shall be a relevant consideration.’
- creates a new procedural safeguard whereby any ‘best interests’ decisions on residential living arrangements for an adult requires approval from the Court of Protection. Where there is a proposal to place a person in a residential setting, the local authority or NHS must provide information on why they consider ‘that the place the disabled person has been living is not the most appropriate living arrangement… Why it is considered that the proposed living arrangement is the most appropriate living arrangement for the disabled person… What steps have been taken to seek to provide appropriate community support for the disabled person so that a residential living arrangement is not the most appropriate available… What steps are to be taken to seek to provide appropriate community support for the disabled person so that the residential living arrangement will not be the most appropriate available in the future; and… When the question of which living arrangements for the disabled person will next be reviewed.’
- creates a duty to produce an annual report on residential living arrangements, why in each case there was no more appropriate living arrangements available, plans to support people to return to the community identifying the social worker responsible for the discharge plan, and steps taken in line with the ‘sufficiency’ duty outlined above. The report is to be placed online, and the Secretary of State must publish an annual report summarising these local reports and setting out what steps it will take to support compliance with the sufficiency duty;
- amends the Mental Capacity Act 2005 to require consultation with family before a person is found to lack mental capacity and placing a greater emphasis on the person’s own wishes and feelings in best interests decision making;
- removes people with learning disabilities or autism spectrum conditions from the scope of the Mental Health Act 1983.
The Bill covers a huge amount of ground. It includes some very novel and interesting ideas – including a monitoring duty on progress towards independent living, and a duty to explain exactly why a person cannot live in their community and what steps are being taken to enable them to do so. There is a huge amount to think about here, and the Bill’s explanatory notes state that:
This first draft of the Bill is for discussion. Everything in the draft Bill is up for debate – all the clauses could be removed, strengthened or left as they are and new clauses can be added. Justice for LB would like the widest possible debate about the Bill – please contact us if you can arrange an event, distribute materials or otherwise spread the word.
I’m sure readers will have lots of thoughts on this, and it would be great if they could give feedback on the Bill to its authors. I’ll be giving this some thought and then sending some comments. This area of law is a horribly complex ecosystem of public law (the provision of care by the state) and private law (the Mental Capacity Act 2005), and working out how it all fits together is really difficult. Speaking personally, I am not sure that the fundamental changes we need to see can be effected through a Private Members Bill. Yet the Bill lays down a gauntlet – if we are serious about getting people out of these services and into their communities, then what needs to change? What role could law play in that? So get reading, get thinking and answers on a postcard or several sides of A4 (not to me, obviously, but to the LBBill campaign – details on the website).