Deadlines, delays and denials of responsibility: John’s story of trying to move out of institutional care

It is five years since BBC’s Panorama exposed the horrific abuse of people with learning disabilities at Winterbourne View hospital unit. The scandal sparked wider concerns for other individuals with similar needs being held in secure in-patient units, leading to demands to move them into community-based support.

It is also almost five years since I met John*, 51, who has autism, a learning disability and exhibits behaviour regarded as challenging. As a senior associate solicitor at law firm Anthony Collins Solicitors, I was asked by his mother, Jackie*, to appeal to a tribunal to discharge him from a low-security, private hospital for adults with learning disabilities into a community setting.

However, as we explain in an accompanying timeline, since John was detained in 2011 under the Mental Health Act, he has endured an astonishing catalogue of delays, missed deadlines and denials over responsibility for his care. The shortfalls include what John’s tribunal has criticised as “the considerable slippage and apparent failure to take responsibility for onward planning”. Other failures, described in more detail below, include a community placement being lost due to delays and because local authority commissioners did not contact the care provider.

John’s potential to live with support in the community is not in dispute, yet not only is he still in the same secure care he moved to in 2011, he is about to move to his new “home”; another private rural hospital where he will remain detained under the Mental Health Act.

The glimmer of hope is that John’s new placement is a better environment than his current one; his mother is hopeful about the move. There is no tall perimeter fence, John will have his own flat with a private garden, choose some of the furnishings, and the provider’s longer-term plan is for the secure flats to become a care home.

However, it is a far cry from either the community housing with support envisaged by his family, his legal team, the social workers who have assessed his needs, or indeed the government’s national drive to move people from in-patient care.

The 2,600 people stuck in secure care

John is not the only one, as I have explained before, stuck in institutional care in this way. According to the latest government data, at the end of February some 2,600 patients were in hospital-style units. This is despite the government-funded improvement programme to transfer people from such units by 1 June 2014 and the more recent NHS England plan to close up to half the 2,600 inpatient beds for learning disabled people in NHS and private units.

John was in fact the first non-Winterbourne View in-patient to be reviewed in 2014 by the specialist NHS England Improving Lives team, launched to ensure that former residents of the unit near Bristol, and others, receive good care. Yet John’s experience reflects the setbacks and confusion that appear to be the hallmark for this cohort of people and reveals the inadequacy of existing provision. I am convinced that if community services had been able to provide the necessary support to individuals with such complex needs as John, fewer of them would still be awaiting transfer from assessment and treatment units.

It is also worth considering how the pressure on community provision has increased in the years since John was detained, and this is exacerbating the challenge. The Local Government Association and Association of Directors of Adult Social Services, for example, have warned of a £4.3 billion funding gap in adult social care by the end of the decade.

Delays and missed deadlines

John lived in a community-based home for 13 years in the Midlands and enjoyed a full social life until a decision from his funding local authority about catchment areas meant he had to move. Contrary to the advice of his long-term nurse, his medication was changed, John reacted badly, embarking on a series of increasingly unsuccessful placements, until he was detained in 2011 under section 3 of the Mental Health Act 1983 at the private rural hospital where I met him.

Since he has been there, his mother and I have been frustrated at almost every turn in our bid to get him out, with incidents including:

• hospital managers failing to review John’s renewed detention, leaving its lawfulness in doubt and delaying the tribunal process needed to move him out (Sept 2013)
• the commissioning local authority suddenly declaring that John’s aftercare and community placement funding was not in fact their responsibility, but that of another local authority, and then stopping all work on his case (July 2014)
• local authority commissioners (after acknowledging they were in fact responsible for John) rejecting the three potential community-based providers sourced by an independent social worker and their own social worker (July 2014)
• the same commissioners failing to attend a care programme approach meeting – they had previously cancelled the date when it was wrongly thought John was not their local authority’s responsibility (July 2014)
• the timetable for a move to community support falling by the wayside as local authority and health commissioners disagreed about responsibility for leading the discharge process (August to December 2014)
• the only suitable accommodation available being lost, because of delays, caused partly by the local authority failing to follow up with the potential provider (Sept 2014)
• more than 50 organisations requesting a tender pack for John’s care, yet not a single one submitting a bid for his support (May 2015)

“We see a John who’s so different to the one who is kept in seclusion”

Amid all the delays and wrangling, it is important to stress how much John has enjoyed his rare visits home to his mother, Jackie. On these occasions, Jackie gets a glimpse of the son as he was before his detention, when he lived in the community and enjoyed his pub meals, hill walks and discos. He has had some great visits home for Christmas and his birthdays, including for his 50th in August 2014, with a party at a pub and karaoke.

Jackie has said he is almost always “as good as gold” at home while in hospital his behaviour can be unpredictable and he engages in self-harm. She has explained: “His behaviour is definitely a product of his environment. Of course his learning disability and autistic spectrum disorder affect how he behaves, but when he is kept in seclusion, if medication is suddenly changed, changes in routine aren’t explained, and there’s no consistency in his care, he gets agitated…But when he comes for home visits, we’ll go to the shops or out for a walk. We see a John who’s so different to the one who is kept in seclusion…and described as ‘dangerous’.”

Why plans for community-based support failed

It is clear that, with the right support, John would be able to move into the community. So, aside from the delays and confusion over responsibility of care from commissioners, why has this not happened?

The key issue is that two of the three community-based organisations hoping to support John were offering a social-care rather than a health-care service. Their plans involved finding a house or other accommodation for John, and recruiting a bespoke staff team trained in autism. However, neither provider could fully explain how their arrangements would meet important needs, aside from the basics of accommodation and care.

For example, there were uncertainties over access to speech and language therapy, psychiatric oversight and doubts over the management of his medication. For these and other specialist needs, both social care providers advised that they would look to register John with his local community services. The commissioners were all too aware that over-stretched and ill-equipped local services would struggle to plug this gap – hence the flaw in the providers’ otherwise carefully crafted plans.

The fear was that John would be set up to fail, his placement would break down and John would come back to secure care.

We know that people are not supposed to live in hospitals. Hopefully, for John, his new private hospital “home” will not look or feel like a secure institution and, if the provider’s plans to re-register the setting as a care home come to fruition, it will not even be classed as a hospital.

Until housing associations and social-care providers partner and collaborate beyond issues of accommodation and social care, this seems to be John’s best option. Unless community-based organisations provide integrated services with psychiatry, psychology, speech and language therapy, education and training, enabling individuals with complex needs to benefit from truly holistic support, John’s home will be a hospital.

Jackie, now in her 70s, is tentatively optimistic about her son’s future support. But her words from two years ago resonate and the reassurance she so clearly needs is still lacking: “I need to know that when I’m no longer here, my son will be taken care of”.

* John and Jackie are pseudonyms

Trying to move from secure care and into the community: key dates in John’s story

May 2011 BBC’s Panorama exposes the abuse of patients with learning disabilities at the Winterbourne View hospital near Bristol.

June 2011 Winterbourne View closes.

Oct 2011 John is detained under the mental health act at a private hospital for adults with learning disabilities.

May 2012 Anthony Collins acts for John after he’s referred for a tribunal about his future care.

Dec 2012 following the department of health’s interim Winterborne View report, its Winterborne View review concordat promises to end all in appropriate placements by 2014.

Sept 2013 we ask the secretary of state for another tribunal but before this is listed, it emerges that hospital managers did not review John’s recently renewed detention, leaving its lawfulness in doubt. The hospital detains John afresh; he is again referred for a tribunal after we make a second request for one.

Autumn 2013 we commission an independent social work whose subsequent report into John’s prospective move identifies three services that could offer a community placement.

Jan 2014 the social worker’s report is sent to NHS England commissioners; John is offered a bespoke service by three different community providers.

June 2014 John’s tribunal is heard and the panel adjourns, we ask for a section 117 meeting to be held before tribunal (section 117 places a duty on the discharging authority to provide after-care, like outpatient treatment).

July 2014 ahead of a visit from the NHS England’s Improving Lives team (set up to safeguard former Winterbourne View residents and others in secure units), John’s commissioning local authority suddenly declares that his aftercare and community placement funding is not in fact their responsibility, but that of another local authority. It stops work on his case.

The two-day Improving Lives review concludes that John must be moved on, recommending a timetable of actions.

Local authority commissioners then acknowledge they are responsible for John, but say his level of need is unclear and doubt the three potential community-based services could provide the right support. They call for a multidisciplinary meeting. John’s care programme approach meeting is held but the local authority fails to attend as it had cancelled the date when it was thought John was not its responsibility.

Aug to Dec 2014 as local authority and health commissioners disagree about responsibility for leading the discharge process, the Improving Lives timetable falls by the wayside.

Sept 2014 a section 117 meeting finally establishes John’s hospital setting may not be the least restrictive option and, subject to finding appropriate care, John appears set to move to the community. However, due to the delays and the fact the local authority has not followed up with the potential provider, the only suitable accommodation has been allocated to someone else.

Oct 2014 directions are issued at a tribunal to progress matters, including for a joint report to be filed by the local authorities and health commissioners outlining who has lead responsibility for John’s discharge planning. The subsequent report specifies a lead contact in this process. Extensive but unsuccessful efforts are made to speak to this contact; until it emerges that they are not yet post and do not have a start date.

Anthony Collins refers this development to the tribunal, which notes “the considerable slippage and apparent failure to take responsibility for onward planning”. Both sets of commissioners arrange for an independent psychiatrist further assess John and his needs, ahead of drafting a current service specification passport and care plan.

Jan 2015 another section 117 meeting is held where Anthony Collins, on behalf of John’s mother, expresses frustration and disappointment that the passport and care plan has still not been circulated. A timetable is drafted to finalise the service specification and put it out to tender. A tribunal considers the timetable, decides not to adjourn further, and decides not to discharge John as he meets the relevant criteria for a section.

April 2015 a meeting is held to shortlist providers, with a plan to agree a placement and funding by 1st June, enabling John’s transition to begin and working to a discharge date of 1st Sept 2015.

May 2015 the Improving Lives team return, commissioners advise that over 50 organisations have requested a tender pack for supporting John. However, not one has submitted a bid.

July 2015 a post mortem on the failed tender is followed by local authority commissioners suggesting the service specification be revisited to consider what can be removed, and what is non-negotiable. They propose re-starting the tender process. Anthony Collins suggests a proactive approach; listing the organisations who could provide a service, and directly discussing John’s case with them – by telephone – as opposed to issuing another invitation to tender – to speed up the process.

Sept 2015 a section 117 meeting identifies three further potential providers, identified to give a presentation, with a view to making a final choice.

Oct 2015 NHS England sets out a plan to close the last NHS hospital in England for people with learning disabilities, plus up to half the 2,600 inpatient beds in special units in the NHS and private sectors used to detain learning disabled people.

Nov 2015 after information from shortlisted providers, a unanimous decision is made to proceed with the only one that could provide the necessary holistic services John needs. Transition planning begins with a view to John moving in May 2016.

January 2016 John begins his fourth year living in the same rural hospital, still detained under the Mental Health Act. However, his new accommodation is under construction.

June 2016 John is still waiting to move to his new flat – it is in a private rural hospital but the setting is less restrictive and more homely than his current one. The provider’s longer-term plan is to re-register the flats as a care home. His original move date of early June has been postponed, due to outstanding issues with his new accommodation.

Further information

For further information about anything raised in this article, please contact Sheree Green

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