If we don’t learn lessons there will be a fourth ‘Post-Winterbourne view’ initiative

A former programme director of a local Transforming Care Partnership shares what must change to address the continuing scandal of too many people being left for too long in inpatient units

Photo: Aga7ta/Adobe Stock

By Smriti Singh

It’s been four years since the Transforming Care programme was set up – the second national response to the crises at Winterbourne View and other ‘assessment and treatment centres’ for people with learning disabilities.

It followed the Winterbourne View Concordat, which had failed in its objective to significantly reduce the number of people with learning disabilities or autism, or both, in assessment and treatment units. Significant numbers of people were discharged during the programme period, but even more were admitted.

Transforming Care shared the same objective – to halve the number of people in inpatient settings between 2016 and 2019. However, towards the end of this period, the number of people in hospital has not significantly reduced and the programme no longer seems to have the same priority The 2019 NHS Long Term Plan has extended the original timescales by another four years, and we now have NHS England’s Learning Disabilities and Autism Programme. This is essentially a third national programme to try and address the same problem.

While it’s sensible to extend the timescales, this will not be enough to address the scandal of too many people, particularly those with autism or learning disabilities, spending far too long in mental health inpatient facilities.

Policymakers and senior managers driving the national programme centrally must learn the lessons from the Transforming Care programme, or be faced with a fourth iteration of a post-Winterbourne View initiative.

Here are some lessons that need to be considered and ideas for what can be done better:

Everyone needs to be counted

Transforming Care was a closely assured programme and clinical commissioning groups (CCGs) were strongly performance managed on their number of inpatients. This is absolutely right, except exactly who is being counted varied with CCGs, and the performance monitoring approach prevents CCGs and regional assurance teams from finding the right people.

However, as the national initiatives changed – from the Winterbourne View Concordat to the Transforming Care Programme – and the definitions of the ‘Winterbourne View/ Transforming Care cohort’ has evolved, exactly who CCGs are monitoring has changed.

Some CCGs only monitored those individuals in specialist assessment and treatment units, i.e. those designed specifically for people with learning disabilities, whereas others – correctly – monitored any person with a learning disability or autism, or both, in any mental health inpatient setting, i.e. specialist assessment and treatment units but also mainstream mental health hospitals.

A key performance metric for Transforming Care Partnerships was a low number of inpatients and this means there is a real risk that people with autism or learning disabilities in mainstream mental health hospitals are ignored – even though we know these institutions routinely fail people with these conditions.

The national programmes delivery model did not support the development of a community-based model of care

Under the programme’s local areas, NHS England allocated piecemeal funding, with every bit of funding tied to a reduction in inpatient numbers. The performance management – weekly calls, monthly meetings, written submissions, performance data templates – simply did not allow for any discussion about developing a service which may take, say, six to 12 months.

This approach to funding and performance management meant that local programmes had no choice but to repeat the mistake of the first post-Winterbourne agenda, i.e. just discharge people but not develop the high quality, integrated services needed to support them in the community.

The Department for Education should be a national partner – if it is, we might just be able to achieve early intervention and prevention

In order to seriously address prevention and make changes to the lives of children with learning disabilities or autism, the Department for Education (DfE) must be involved. Whilst the Council for Disabled Children did support the Transforming Care Programme, the DfE was never a formal national partner organisation.

One example that demonstrates why it is crucial to involve the DfE is because schools’ data is the most comprehensive data we have on children and, if we can identify children who are likely to go into the ‘Transforming Care cohort’ early, we can support them well now and avoid crises in the future.

However, in the data collected by schools for the DfE, the terms ‘learning disability’ and ‘learning difficulty’ are used interchangeably, so it is impossible to identify the children who have a learning disability and ensure they remain well.

Retain the commitment to involving families and make this core to assurance and monitoring

The key paper underpinning Transforming Care, ‘Building the Right Support says all the right things about engaging patients and families, and one of the programme’s strengths was that people with lived experience were involved.

However, health, social care and education funding is devolved and services are commissioned and delivered locally.  A major driver for local NHS organisations is the assurance process, which often takes priority and varies from region to region – monitoring and ensuring lived experience is built into local programmes is inconsistent.

Lived experience keeps change programmes true to purpose, which is particularly important in a complex, high-profile one such as this.

While the national programme had a lived experience group, there was no incentive for this to happen locally, no reward where it was done well and huge pressures, leading to the inclusion of lived experience being ignored altogether.

National guidance was inadequate – it needs to be clear and honest

There was a small amount of one-off programme funding for Transforming Care, but no ongoing national revenue funding to support the development of new services. Changing the way we use existing money is therefore crucial if we are to develop the right community-based services for people leaving hospital.

When the Department of Health closed long stay hospitals in the 1980s, additional funding for individuals’ ongoing care was provided in the form of ‘dowries’. With Transforming Care, NHS England has had to run a similar initiative with no ongoing funding and consequently had to convince local commissioners that the finances stacked up, basing the financial case on two big assumptions (1) that supporting everyone is cheaper in the community and (2) that local commissioners could realise savings, from hospital closures wherever in the country they were,  and do this in time to fund individuals’ support. These assumptions did not feel reasonable to commissioners and consequently the financial guidance failed to convince.

The housing guidance issued by NHS England ran into similar difficulties.. Although published with the logos of the Local Government Association and the Association of Directors of Adults’ Social Services, it showed poor understanding of housing issues or local authorities’ work on housing, which takes years. Consequently, this too has been largely ignored and further discredited the programme.

Lose the ‘one size fits all’ approach

This programme is closely monitored by NHS England, which rightly monitors  the number of inpatients from each local area. However, the monitoring is insufficiently nuanced to distinguish between short stays and long stays. For some individuals, short stays might be essential, and ultimately help them stay well in the community, but event these negatively impact on monthly reporting of inpatient numbers.

Similarly, in London and the south east, there is a lack of local inpatient care, which is one reason why people are sent further afield, where they can’t get local social services to review them and end up getting stuck in units.

However, those undertaking the assurance process, often with poor understanding of this agenda and an inability to collaborate, will not listen to this. In short, the assurance process encourages commissioners and local managers to “manage their message”, rather than do what is right.

Integrated Care Systems are an opportunity – integrating pathways and budgets will remove structural barriers to providing the right care

The biggest structural challenge in implementing the Transforming Care vision is that the current system is fragmented, with disincentives and perverse incentives built into the system. CCGs are financially disincentivised from stepping people down from forensic units (which are funded by NHS England Specialised Commissioning) into non-forensic beds (funded by CCGs); similarly, councils are disincentivised from taking people back into the community.

This has been the case for years but, in a time of financial constraint, these structural problems are particularly acute.

I tried to make the case for delivering Transforming Care across the Sustainability and Transformation Partnership as a way of demonstrating the benefits of an integrated system. But nationally there was no patience for the time this would take, and locally there was insufficient resource and interest.

However, the move towards Integrated Care Systems is an opportunity for NHS commissioners to focus on developing a community-based care for people with learning disabilities and autism, and show they are serious about integration.

Going forward, the policymakers and senior managers who are driving the national programme centrally must learn these lessons. If they don’t, they will be faced with a fourth iteration of a post-Winterbourne View initiative.

From 2016 to 2018 Smriti Singh was Programme Director of the South East London Transforming Care Programme. She now undertakes advisory work for private and public sector organisations.

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4 Responses to If we don’t learn lessons there will be a fourth ‘Post-Winterbourne view’ initiative

  1. Ruth Cartwright September 4, 2019 at 3:30 pm #

    An excellent article! The neglect and lack of understanding of the needs and rights of people with learning disabilities and autism has continued while (to some extent and never sufficiently) other service user groups seem to have gained more attention and support (albeit sadly reduced in many cases through austerity and chronic cuts in social care funding). And it seems that flagrant abuses and incidents of neglect and mistreatment make little difference. Even if goodwill is there among families, friends and workers, and people with learning disabilities are able to speak out and express their aspirations, the complex systems, reluctance to fund new initiatives, and lack of joined up thinking continue to stymie progress. Over 30 years ago as a new Social Worker I compiled a local report on the future housing and support needs of people with a learning disability (although information was hard to come by), and I am sure others did the same. Somehow this never got to the top of the (funding) agenda; I hope it does now, but like Smriti Singh I am not holding my breath.

  2. londonboy September 6, 2019 at 4:38 pm #

    I’ve been involved in the Transforming Care programme as a parent carer and have had the experience of trying to explain to commissioners why commissioning more specialist carers ( via the market?) without having any local respite facilities ( capital and revenue investments needed ?) would lead to increased numbers of disabled children entering Care under s20 because that would be the only route available to get the right support for a child when families were at breaking point. I did not get a sense that commissioners had any awareness of the Children Act or understood the point I was making.

    There were also no representatives of Children’s social care at either any local or national Transforming Care events nor DfE presence despite the fact that many of parent/carers who engaged with the programme were parents of children or young people.

    I personally read this as symptomatic of a Department who could not work with the Department of Health ( or Justice, because the same sorts of issues apply in all secure settings? ) in the interests of the most vulnerable children, who simply are not a political priority for a Department with little interest in anything beyond Education despite their wide remit towards children and families.

  3. jim September 9, 2019 at 12:01 pm #

    ‘Transforming your Care” across the UK has not been worth the paper its written on. I speak as a carer of a young adult with autism and severe learning disabilities. In N.Ireland the situation is the same as in England, perhaps worse. We have the scandal with Muckamore Abbey ‘Hospital’ which is a small assessment and treatment unit for adults with ID. Police have confirmed that currently 1500 incidents of abuse/assault captured on CCTVare being investigated for just ONE MONTH alone. Staff did not realise the CCTVs were actually recording, so can you see how vital CCTVs are in all care home settings. Plus there are always ‘blind’ spots even with CCTV for privacy reasons such as toilets, so even with CCTV staff can choose their time to assault patients/residents. But it was a whistle blower and parental suspicions which drew attention to the assaults prompting the CCTV to be looked at

    Over a year ago the Dept of Health NI stated that its objective was to have all residents of that unit resettled into community placements by the end of 12 months. Not surprisingly it failed to deliver on its commitment as it only transfered a few while 6 or 7 remain. Some of these patients have been there for years. My experience locally of social workers and nurses allocated to my daughter’s case is that they usually side with their employers and don’t push for the Authorities to put in place local c ommunty facilities

  4. Chris Mitchhell September 27, 2019 at 6:44 pm #

    Lack of investment and inadequate inspection processes have left the most vulnerable exposed to exploitation and cruelty.
    Checkout all the coverage of the National Autistic Society’s scandalous mismanagement of a culture of sadism at their service in Somerset, Mendip House a couple of years ago. Described at the time as ‘ Winterbourne View without the cameras’ this never got the exposure it should have done due to the Oxfam sex exploitation expose driving it off the front page.
    The penalty for these crimes should be de-registration of providers, and prosecution of offenders. The NAS got away with neither, leaving the National Autism community, their supposed stakeholders, horrified.