Building the right support is NHS England’s plan to move people out of long-stay inpatient facilities and into appropriate housing with support in the community. It involves improving services so that more people can live in the community, with the right support, and close to home.
To move it forward, VODG’s Provider Taskforce has undertaken a London Demonstrator to support 27 people originally from London who have been in inpatient settings for longer than five years into the community.
The Taskforce comprises care and support providers for people with a learning disability, autism or both. It offers statutory organisations, government departments and sector agencies a single point of contact to engage and work with voluntary sector organisations to deliver the transforming care agenda. Providers support commissioners to develop their approaches and work together to facilitate and co-ordinate support assessments and proposals.
As well as supporting people into the community, the Taskforce also aimed to identify learning around challenges and barriers to successful community support and actions to enable positive change.
The Taskforce met with four of the six London transforming care partnerships (TCPs) including clinical commissioning groups, NHS England’s specialised commissioners and local authorities. Panel meetings for each TCP area were used to discuss individuals’ support needs. Shared action and outcomes were agreed with the clinical and social work leads and providers were identified for each person. Referrals were then made by the Taskforce to appropriate providers and contact established between the provider, commissioner and funding agencies to take forward the planning process.
A key element of the pilot was to identify and locate appropriate housing and support for the individuals. The Taskforce identified three patterns: bespoke accommodation and support for people to live alone; bespoke accommodation and support within a core and cluster model; and shared housing and support. These also require a specific skilled workforce to enable the transition and tailor support.
The pilot faced a number of challenges to discharging people and barriers to developing appropriate support plans. These included: delays in discharge plans, including a lack of knowledge about potential community support options; negative attitudes and aspirations towards people supported (eg referring to people by patient identity number); confusion about costs, with commissioners and funders underestimating the cost of initial support immediately after discharge and/or therapeutic support; a lack of support to families, despite it being critical to the sustainability of support to their loved one.
As the Demonstrator progressed, the Taskforce developed solutions.
As opposed to funding authorities viewing housing and support needs in isolation, which makes it harder to identify people who can live together, the project started mapping people across the TCP, including a cross-borough information sharing to help to identify people with similar needs across wider areas.
Specific structures and differing timescales within the system delayed progress, so a stronger understanding of the impact of this along with accountability were found to help.
Different professionals involved in the process have different drivers for an individual’s discharge which are not always shared. The Taskforce concluded that shared meetings at the beginning of the process with all relevant professionals to discuss and agree the way forward for a group of people was helpful in agreeing a shared understanding. This included what has not worked to-date and the important issues for different stakeholders. They also found meetings helpful in refocusing on the person rather than cases to manage and process.
The Taskforce found it critical to be realistic about the financial costs of supporting people in the community. They concluded that there’s a need to establish a wider, shared understanding of the financial costs of community support packages.
Housing was described as one of the biggest challenges. The Taskforce found that the earlier the provider is identified in the discharge process, the quicker the housing solution can be agreed and sourced.
Recognising and agreeing the need for additional support through specialist organisations is important to achieving successful, sustainable, community support.
From these solutions, the Taskforce went on to identify next steps for wider implementation.
Firstly, they identified that a strategic regional pathway is needed to move people out of hospital and/or prevent readmission including demand and supply mapping with a detailed analysis of costs and funding arrangements.
A sustainable care, support and housing market needs to be developed to support the current and future needs of people. Also, a provider network should be created which dynamically maps organisations’ capacity, skillsets and infrastructures to identify an appropriate provider for each person. This could include regular TCP panel meetings with providers to strengthen shared working and to maintain momentum.
Regional work is required with providers to develop shared and standardised approaches as appropriate, to develop joint approaches to shared challenges.
An enhanced brokerage programme should also be created to facilitate people’s discharge and a therapeutic support programme should be piloted to understand the demand and impact of this type of support.
Over to the experts…
How can the learning from this report help to increase the numbers of people moving from inpatient settings into community services and their own homes? How can the findings be used for wider implementation? How easy will it be for other areas to replicate?
Great relationship-based commissioning
The project is a great example of relationship-based commissioning, which needs to be widely embedded if the TCP is to be successful.
IPC has been working for over 25 years in health and social care commissioning and our work over the years has taught us the importance of good relationships. Our model for relationship-based commissioning is based on our original commissioning cycle – Analyse, Plan, Do and Review, but emphasises what needs to happen in each quadrant to achieve good relationships.
Analyse: Commissioners and providers need to understand each other’s context, drivers and business relationship needs. Plan: Both need to schedule time to build the relationship. Do: Both need to actively listen to the other, value each other and behave in a solution-focused way (it’s all about people skills). Review: Both need to regularly reflect on what’s working and what’s not working in terms of their relationship.
The project is a good example of relationship-based commissioning because commissioners and providers took the time to understand each other’s needs and how they could best support each other. They prioritised finding time to meet, discuss and build their relationships. They actively listened and problem-solved together and when something wasn’t working they were honest about it which empowered them to move forward.
Enabling people to move out of long-stay inpatient facilities depends upon the willingness and ability of commissioners and providers to focus on improving their relationships and engaging in relationship-based commissioning as is so wonderfully demonstrated in this project from the VODG Taskforce.
Sarah Broadhurst Lead for Learning Disabilities and Autism, IPC
A timely reminder that the job is just beginning
As the end of Transforming Care looms large, this report is a timely reminder that the job to support people out of long-stay hospitals is still just beginning.
We’re pleased that the report is clear that each of the people assessed would have been able to live independently were it not for systemic barriers. Time and again, Dimensions has to persuade the professionals around a person that a better life outside of a long-stay hospital is absolutely possible.
Even if an individual has a history of failed placements in the community, the failure is of the plan, not of the person. Challenging behaviour must be seen simply as how a person has learned to communicate that things are wrong. It is not an indivisible part of his or her personality. By starting from this point, taking the time to get to know the person, and employing suitable levels of professional support, in particular using positive behaviour support techniques, almost anyone can emerge successfully from long-term stays in assessment and treatment units (ATU).
Our experience also shows that in the long-term, living in a community setting is usually much cheaper too. However, as the report indicates, funding suitable levels of support at the outset is key. Everyone around the individual must have realistic expectations of the support needed initially. Get that right, a person’s support needs can reduce significantly over time.
There has been no indication from Government as to what happens beyond the end of the TCP in March 2019. I have an unsettling fear that the end of the programme will bring the end of targets and of any meaningful efforts to help people stuck in ATUs. I hope I’m wrong.
Steve Scown Chief Executive, Dimensions
Yet more evidence of systemic challenges
This report provides yet more evidence of the systemic challenges to delivering the transformation of care, a transformation that is long overdue. The issues described are familiar to the families the Challenging Behaviour Foundation (CBF) supports – the report identifies solutions to these issues and examples of driving change to get people the lives they have a right to. It shows it can be done, but for too many people it isn’t.
The families we support live through the consequences of the system not working and this has a devastating and lasting impact on their loved ones. It means that people are kept in inpatient provision that doesn’t meet their needs, often long distances from their families and friends for long periods (the average length of stay in inpatient services is now 5.5 years). The report highlights that the people responsible for Transforming Care fail to even think about the people they support.
Our experience at CBF is that families can clearly describe the support their relative needs to live a good quality of life. Where families are engaged and their knowledge and experience is valued and listened to, their loved one is more likely to live a good quality of life with the right support. Yet lack of support for families was highlighted as a challenge in the report with a call to involve and invest in families.
Families articulate what is needed very clearly, what would it take to address the issues?
To a parent, it doesn’t seem like rocket science. It just needs adequate ring-fenced funding, and government-level scrutiny and accountability. This demonstrator contributes to a range of voices and evidence that we all have a responsibility to use to make change happen.
Vivien Cooper OBE Founder, Challenging Behaviour Foundation
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