Transforming Care and the NHS Long Term Plan

A response to the NHS Long Term Plan from Rightful Lives.

Link to NHS Plan

At the beginning of January 2019 NHS England launched its Long Term Plan in which it set out it’s short to medium term vision for the NHS. It is a bold vision, that looks to deal with concerns around health inequality, an aging population and the historical funding pressures that have beset many of NHS’ organisations.

The plan includes a commitment to create genuinely integrated teams of GPs, community health and social care staff and promises significant additional funding with which to develop and deliver it. It promises action on health inequalities and commits to linking funding, to action on reducing those inequalities. It identifies priorities for care quality and improved outcomes in areas such as cancer, mental health, diabetes, healthy ageing, children’s health, cardiovascular diseases, respiratory conditions and learning disability and autism. All of which will be made possible by the additional funding and changes to the “NHS’ overall system architecture”. These changes will include taking action on workforce development, implementing innovative proposals on the use of technology and digitally enabled care; and the creation of ‘Integrated Care Systems’ through which the triple integration of “primary and specialist care, physical and mental health services, and health with social care” will be delivered.

This response by Rightfullives, does not include a judgement about how feasible the NHS Long Term Plan is as a comprehensive strategy, or whether it is likely to achieve the hoped-for levels of innovation and integration. Our focus is to assess the plan’s commitment is to improve the care, support and life chances of people with learning disabilities and autistic people. A commitment that is welcome and that marks another stage in the struggle for the rights and well being of this community of people – the question is does it represent genuine and significant progress or is it yet another a missed opportunity? Inorder to answer that question its worth looking back at the recent history of Transforming Care.

Transforming Care

At 3-33pm on the 7th of June 2011 Paul Burstow a Minister of State in the Department Health stood up and made a statement in response to an urgent question from Emily Thornberry:

Nobody watching the BBC’s “Panorama” programme last week could have been anything but shocked and appalled by the systematic abuse of residents at Winterbourne View…

…It is the right of every individual being cared for by others to be treated with dignity and respect and it is the responsibility of those trusted with their care to provide it: a responsibility that weighs most heavily on those who care for the most vulnerable, including those with learning disabilities. This responsibility rests in four places: with the providers themselves, in this case Castlebeck; with commissioners, both primary care trusts and local authorities; with the regulators, including both the Care Quality Commission and the professional regulators, and the CQC has acknowledged it should have acted sooner and issued an unreserved apology; and, of course, with individuals. No training, guidance or management should be needed to tell people that the behaviour experienced by the residents of Winterbourne View was nothing other than obscene and unacceptable.

It goes without saying that responsibility didn’t just lie in four places and that the NHS and political leadership should also shoulder their portion of the responsibility for the situation in which we find ourselves over eight years after Panorama’s expose of Winterbourne View was broadcast. In the years that followed, the government would repeatedly attempt to transform the inpatient healthcare system through a policy agenda that would come to be known as Transforming Care. After a number of false starts or failures, these attempts would culminate in the publication of Building the Right Support in the October of 2015. Building the Right Support was the government’s most comprehensive attempt to date to radically change this system. It had a significant budget and would set a number of ambitious targets on reducing the number of people with learning disabilities and autistic people detained in inpatient hospitals.

As we approach the March 2019 deadline for this latest incarnation of Transforming Care, we at Rightfullives have been reflecting on how successful Transforming Care has been. Whilst there has undoubtedly been some important progress for a number of the families who have campaigned publicly for the release of their loved ones, more broadly Building the Right Support has been a failure. Although how much of a failure, has been difficult to assess. The government has repeatedly claimed that Transforming Care has reduced the number of people in inpatient hospitals by 20% a claim that doesn’t appear to be supported by the Assuring Transformation Data. Bear with us while we look at this in a little more detail.

The baseline date against which the progress of the policy is being measured is March 2015, so the number of people who were in inpatient hospital at that point is important. According to the NHS Assuring Transformation data first published for March 2015, 2395 people were being detained in inpatient hospitals. However, the way that the Assuring Transformation data works is that over the following months revisions would be made to previous month’s figures and by August 2015 the March figure had been revised upward to a total of 2640.

The objectives set by Building the Right Support were that by the end of March 2019 the number of people in inpatient hospital would be reduced to somewhere between 1300 and 1700 and interestingly Building the Right Support itself set the starting figure for the policy at 2600. So, at the time the expectation and hope, was that by March 2019 Building the Right Support would help to deliver a reduction in inpatient numbers of up to 50% of the March 2015 figure. However, by the time that the NHS Long Term Plan was being drafted, the most up to date Assuring Transformation data estimates the number of people in inpatient hospitals to be 2350 far higher than the 1300 – 1700 that had been hoped for.

Transforming Care and the NHS Long Term Plan

Of the progress in reducing the number of people in inpatient hospitals the NHS Long Term Plan states the following: Since 2015, the number of people in inpatient care has reduced by almost a fifth and around 635 people who had been in hospital for over five years were supported to move to the community. However, the welcome focus on doing so has also led to greater identification of individuals receiving inpatient care with a learning disability and/or autism diagnosis, so increasing the baseline against which reductions are tracked.

Self-evidently the difference between 2600 and 2350 does not represent a reduction of almost 20% and despite asking Ray James of NHS England for a clarification of the 20% claim (which we have not received) we did eventually identify an explanation for it, in the data that NHS England had provided to the Joint Committee on Human Rights. According to that data, the baseline for Building the Right Support had risen to 2865. We don’t think that NHSE would mislead Parliament so it’s likely that 2865 is now the true figure for the March 2015 baseline.

Therefore, the increase in the baseline figure probably means that when Building the Right Support was launched there were hundreds of people in inpatient hospital that NHS England was unaware of. And just to re-iterate, the figure for the total number of people detained was 2395 in March 2015, this had risen by a little over 200 by August 2015 and would continue to rise by another 265. We do not know how long it took NHS England to identify the total number of people that it had in its care. But we are concerned about the implications that this has for ensuring that people’s well being is protected. How can commissioners ensure that people are getting the support and treatment that they need if they do not even know that they are in an inpatient hospital, yet for whose detention they are writing the cheques.

But beyond the concerns that we have about the system’s ability to protect the well-being of individuals, what is clear is that the “new” target set in the NHS Long Term Plan isn’t really a new target at all and that all it actually represents is a slight adjustment of the original targets set when Building the Right Support was originally published

By March 2023/24, inpatient provision will have reduced to less than half of 2015 levels (on a like for like basis and taking into account population growth)

And just so that we are clear 50% of the most recent March 2015 figure (2865) is 1433. Which actually represents a 39% reduction on the most recent figure – a slightly less catchy number than the 50% reduction presented in the plan and to the media. So, in effect the NHS Long Term Plan doesn’t really say anything new about people detained in inpatient hospitals it simply moves the deadline for achieving its previously stated objectives from March 2019 to March 2024. It might have been simpler and more transparent to state that the NHS Long Term Plan is kicking the deadline for Building the Right Support five years into the future.

People with learning disabilities, autistic people and NHS Long Term Plan

Chapter 2 of the NHS Long Term Plan outlines a number of other aspirations relating to people with learning disabilities and autistic people:

Across the NHS, we will do more to ensure that all people with a learning disability, autism, or both can live happier, healthier, longer lives. This means that we will provide timely support to children and young people and their families. We will do more to keep people well with proactive care in the community. We will ensure that reasonable adjustments are made so that wider NHS services can support, listen to, and help improve the health and wellbeing of people with learning disabilities and autism, and their families. Over the next five years, we will invest to ensure that children with learning disabilities have their needs met by eyesight, hearing and dental services, are included in reviews as part of general screening services and are supported by easily accessible, ongoing care. For people with the most complex needs, we will continue to improve access to care in the community, so that more people can live in or near to their own homes and families. Finally, we will accelerate the LeDeR initiative to identify common themes and learning points and provide targeted support to local areas.

Unfortunately, this important paragraph does not provide any detail on how these aspirations will be delivered. How will it ensure that timely support is provided to children, young people and their families? How will it ensure that there is proactive care in the community? How will it ensure that reasonable adjustments are made? Will these aspirations be funded and does the commitment to invest only relate to the eyesight, hearing and dental services of children with learning disabilities? And does it also include a commitment to invest in care in the community and if the answer to any of these is yes, then how much?

Fortunately, some of the answers to these questions can be found in Chapter 3 of the plan. So, for example on the theme of reasonable adjustments and premature deaths we can identify the following actions:

Action will be taken to tackle the causes of morbidity and preventable deaths in people with a learning disability and for autistic people. To help do so, we will improve uptake of the existing annual health check in primary care for people aged over 14 years with a learning disability, so that at least 75% of those eligible have a health check each year. We will also pilot the introduction of a specific health check for people with autism, and if successful, extend it more widely

And

Sustainability and Transformation Partnerships (STPs) and integrated care systems ICSs will be expected to make sure all local healthcare providers are making reasonable adjustments to support people with a learning disability or autism

This added to the commitment to continue funding and accelerate the LeDeR programme appears to represent the extent of the government’s direct response the issue of premature deaths. Although other initiatives such as:

The whole NHS will improve its understanding of the needs of people with learning disabilities and autism, and work together to improve their health and wellbeing. Following a consultation on the options for delivering awareness training, NHS staff will receive information and training on supporting people with a learning disability and/ or autism

Or “Oliver’s Training” as we will refer to it in future, this should hopefully also play a role in reducing premature mortality as should elements of the STOMP-STAMP initiative.

We will expand the Stopping over medication of people with a learning disability autism or both and Supporting Treatment and Appropriate Medication in Paediatrics (STOMP-STAMP) programmes to stop the overmedication of people with a learning disability, autism or both.

The primary focus of the STOMP-STAMP initiative relates to the issue of restraint and the effect that the overuse of psychotropic medication has for long term well being and human rights. However, regardless of its focus, both of these initiatives are generally accepted as being a good thing although it would be helpful if its impact and outcomes were being systematically evaluated.

Another positive measure outlined in the NHS Long Term Plan is the following commitment of:

Increased investment in intensive, crisis and forensic community support will also enable more people to receive personalised care in the community, closer to home, and reduce preventable admissions to inpatient services. Every local health system will be expected to use some of this growing community health services investment to have a seven-day specialist multidisciplinary service and crisis care. We will continue to work with partners to develop specialist community teams for children and young people, such as the Ealing Model, which has evidenced that an intensive support approach prevents children being admitted into institutional care

The challenge will be in ensuring that the support being made available is properly inclusive and appropriate for people with learning disabilities and autistic people. The new Learning Disability Improvement Standards will be a useful tool in helping to ensure that will be the case, as will the commitment to strengthen to CTRs and CETRs.

We will focus on improving the quality of inpatient care across the NHS and independent sector. By 2023/24, all care commissioned by the NHS will need to meet the Learning Disability Improvement Standards102. We will work with the CQC to implement recommendations on restricting the use of seclusion, long-term segregation and restraint for all patients in inpatient settings, particularly for children and young people. As well as focusing on the number of people in inpatient settings, we will closely monitor and – over the coming years – bring down the length of time people stay in inpatient care settings and support earlier transfers of care from inpatient settings. All areas of the country will implement and be monitored against a ’12-point discharge plan’ to ensure discharges are timely and effective. We will review and look to strengthen the existing Care, Education and Treatment Review (CETR) and Care and Treatment Review (CTR) policies, in partnership with people with a learning disability, autism or both, families and clinicians to assess their effectiveness in preventing and supporting discharge planning

The commitment to use a 12-point discharge could also be helpful if it becomes an enforceable reality on the ground.

A missed opportunity?

The NHS Long Term Plan has some good proposals but overall it probably represents a missed opportunity to create an NHS that genuinely supports the rights of people with learning disabilities and autistic people. In our opinion it is likely to fail for two reasons, firstly it doesn’t outline a comprehensive programme of action to implement and evaluate learning from the LeDeR programme and secondly because it doesn’t address the issues that underly the reason why people go into inpatient hospitals.

For every individual who gets detained in an inpatient hospital there is a life-course or care pathway that has led them there, and for each individual there is a unique set of reasons as to why their personal journey has brought them to an inpatient hospital, invariably against their will. For some it may be because an underlying mental health difficulty, coupled with their disability makes a period of treatment unavoidable, but for many others, it will be because of factors in relation to the support that they received or not received. This may involve a failure to identify and diagnose long term pain; it may involve repeated failed communication, it may have involved a failure to manage key transitions or it may involve the failure of key relationships between, individuals, families and practitioners. These failures may individually or collectively result in behaviour and a way of being that can put an individual and others at risk. This can include people who have been detained in an inpatient hospital because they have been deemed a threat to society by the criminal justice system. For many, perhaps even the majority of people in an inpatient hospital, what is key is that the underlying cause of their detention, is ultimately a failure of the support that was available to them and their personal community.

For most people their detention in an inpatient hospital represents failure – the failure of the system to support them through their life course and specifically at important times during their lives, for example in finding their place in the world as adults or in managing their emerging sexuality. Whilst Transforming Care has made some progress in getting people out of inpatient hospitals, it appears to have made little progress in preventing people from going in – in our opinion because it has failed to address the systemic failures that may lead to an individual’s detention. Systemic failures that ultimately boil down to failures in people’s everyday lives: the failure to identify pain, the failure support an individual’s communication, the failure to manage key transitions and the failure to support them and their community.

In relation to inpatient hospitals the targets set within the NHS Long Term Plan are likely to be the thing that people notice, and the lack of ambition is undoubtedly disappointing as is the disingenuous way in which the statistics have been used. But for us the numeric targets aren’t really the issue, for us the issues are:

  1. The historic lack of awareness of how many people are being detained at any given moment in time;
  2. The lack of independent external monitoring and accountability surrounding an individual’s detention and care;
  3. The failure in community support that results in an individual being deprived of their right to liberty;
  4. The lack of focus on a people’s rights in supporting their release from inpatient hospital;
  5. And the lack of focus on people’s rights in preventing their detention.

We believe that the focus should be on developing systems and processes that support an individual’s right to their place within their communities. So that detention in an inpatient hospital becomes an ever-diminishing last resort. And where people do have to be detained, that detention should be monitored by an independent body that is able to assess the legal and clinical justification for their detention and able to take steps to order stakeholders to take action to protect an individual’s human rights.

For us the ambition of the NHS Long Term Plan and the forthcoming Social Care Green Paper should be genuine equality of access to healthcare and the eradication of detention as a result of failures in community support. Some of the building blocks of a solution are in this plan, what is missing is transparency and the courage to acknowledge the scale of the work that still needs to be done and a recognition that most people who go into an inpatient hospital do so because the system has failed them. If the government takes action to defend the rights of individuals and in particular their rights to liberty, to family life and to freedom from cruel and inhuman treatment then the numbers of people detained in inpatient hospitals will decline because in this instance the policy solution isn’t the targets it’s the people.

Mark Brown, Julie Newcombe and Mark Neary - January 2019