Understanding the management and monitoring of waiting lists in adult social care

There has been increasing interest in the use of metrics relating to waiting lists and waiting times for adult social care assessment, provision of support and direct payments and reviews of support. This is particularly relevant in light of growing demand (over 400,000 waiting for an assessment of their needs or for help to begin) and increasing complexity of need. However, the differences between waiting lists, different approaches in how councils manage these and in how they record initial contacts, and other activity makes any meaningful comparison or national overview and understanding difficult to achieve.

This work to support better outcomes and experiences for people by informing a shared understanding of adult social care waiting times and waiting lists, to in turn inform the appropriate development and use of metrics locally, regionally and nationally, for performance and insight purposes.

A roundtable was organised so that practice on managing the situation, mitigating risks, and reducing waits could be shared. The aim of this stakeholder engagement was to shape an approach that helps us collectively to establish a shared understanding of how data can be used effectively:

• in the context of how councils understand and manage their adult social care wating lists and waiting times
• to provide better insight and understanding of the challenges and people’s experiences (people supported, their carers and frontline staff)
• to promote informed self-assessment and improvement
• minimising the reporting burden and ensuring a consistent approach to metrics in this space.

Two distinct elements appear to be being considered nationally, those being:

• how are council and regions currently understanding their waiting lists and the potential impacts on those waiting
• can we identify metrics that will help councils and regions to compare practice and share learning?

The findings from this work have also aligned to other improvement work around the front door to adult social care (Supporting the adult social care front door: A community coordinated approach (practitioners' guide)) and how councils are working with the voluntary sector including faith groups (Developing a community asset based approach), to make best use of community assets.

Setting out on this project, we also had other pieces of work to draw on, including work done in the East of England, the outcome from the ADASS Spring Survey 2023 and the work undertaken in the East Midlands with IMPACT. The development of metrics using the client level data (CLD) set was also closely aligned and continues to be informed by this work and ongoing engagement.

There is an increasing desire to develop shared metrics relating to care waiting lists and waiting times for adult social care assessment, support, and reviews. However, different approaches in how councils manage waiting lists, and in how they record initial contacts and other events makes comparison or national overview and understanding difficult to achieve.

• The Care Quality Commission (CQC) has shown an interest in reviewing individual councils’ data as part of their assessment but recognise limitations in comparing between places.
• The Department of Health and Social Care (DHSC) is interested in waiting lists and waiting times both in the context of Market Sustainability Improvement Fund (MSIF) monitoring, and in the context of understanding capacity and demand, particularly in relation to hospital discharge. We are also interested in waiting lists and times in terms of these being a driver for avoidable hospital admissions.
• The Client Level Data collection provides the potential to interrogate councils’ case management records with a view to understanding waiting times and waiting lists, and potentially related support outcomes. However, it is essential that any derived data is meaningful and considered in the context of what is happening on the ground.

A project was initiated in December 2023 focused on co-ordinating stakeholder engagement to inform a shared understanding of adult social care waiting times and waiting lists. The findings from this will be used to shape and inform the appropriate development and use of metrics locally, regionally, and nationally, for benchmarking and insight purposes.

At the start of the stakeholder engagement exercise several related, but separate, initiatives were already underway related to the monitoring and management of waiting lists. To achieve a shared understanding of the topic and inform the development of useful and appropriate measures, the project approach was structured around answering the following questions in sequence:

• why do waiting lists matter
• consequently, what do we need to understand
• what do we know already and where are the gaps
• what needs to happen to close those gaps
• what are the priorities that result?

We want to thank over 80 council colleagues across a range of roles who engaged with this work, along with colleagues from the CQC, DHSC, the DLUHC (now the Ministry of Housing, Local Government and Communities), the Better Care Fund Support Programme, the Association of Directors of Adult Social Services regions, Think Local Act Personal, members of the National Co-Production Advisory Group and the Carers Trust for their engagement and support.

How different waiting lists are defined and measured depends upon:

• social work practice 
• how start and end points are defined and recorded for distinct elements of a person’s journey through the assessment and care planning process
• the combination of assessment, review, or services relevant to the person waiting
• the needs and circumstances of the person waiting and the team involved
• pathway and process design
• case management system used by the council and data configuration.

Given the significant variation in these factors within and between councils, there is no universally accepted definition of a waiting list and for the purposes of this project it was sufficient to engage stakeholders on the basis that the context of a waiting list is:

Given the scope of the project to create a shared understanding of how waiting lists could usefully be monitored and managed, a logic tree was constructed with the help of stakeholder input, to show the independent variables that need to be in scope and how they relate to each other for the purposes of effective monitoring and managing. 

While no one wants or should have to wait for an assessment, support or review, the impact of waiting times can to some extent be mitigated. Understanding the impact that they have on providing timely support and the outcomes achieved for people has raised the profile of this topic. 

It must also be recognised that stakeholders have distinct roles and interests in addressing the challenges created and stakeholders have described and prioritised these, noting that each is related to the others. Successfully managed waiting lists contribute towards:

• effective management of risk
• engagement, co-ordination, and influence across the system
• understanding the impact of resources and initiatives
• recruitment and retention
• assurance on the delivery of statutory responsibilities
• evidencing unmet or under met need.

Stakeholders provided us with a number of considerations for development of a future support offer as well as extensive commentary on related considerations, risks, and work already underway across the sector.

With the budgets and adult social care capacity currently not meeting growing demand, despite short-term funding support from central government, councils need to make effective use of finite resources. Adult social care capacity has been historically directed to support discharge and away from preventative work in community. Adult social care waiting lists will continue to be a high-profile area of attention over the years ahead to make sure that efficiencies are realised, and data can inform and drive improved performance, national policy, and ensure that positive outcomes for individuals are maximised and the negative impact of waiting times minimised.

From our engagement with councils and regions there is already much data collection and reporting in place. Collectively there is a desire to provide some consistency in the data reporting where appropriate, to support and facilitate shared learning and discussion and provide valuable insight to improve waiting times and lists going forwards, building on actions councils have found effective in minimising waits for assessment and support. 

Effective use of data and learning can support and inform consistency with other organisations and a clearer focus to support improvement of services in relation to waiting lists and times and peoples' experiences while they wait.

Our aim is to facilitate an enhanced understanding of the need for support within adult social care, and across the health and care systems more widely. This is to aid understanding of what actions will have the maximum benefit and impact on people’s outcomes and experience of care, alongside the need to prioritise, due to limited resources and workforce capacity. 

Access to client level data provides potential for research, mapping care pathways across health and care services, understanding key touch points and interactions across each pathway, identifying bottlenecks in the existing system design, and seeking to redesign to alleviate these through person-centred and strengths-based approaches to ensure a more effective use of the resources available.

Several additional conclusions were provided on how further work in this area could be progressed and some of the main points can be summarised as follows:

• Not all gaps in waiting list knowledge need a standing data collection plan and analysis to resolve. There is much good practice already identified both by councils and regional groups and more that can be done to collect and disseminate this evidence nationally.
• For some gaps in our collective knowledge and understanding, discrete projects may be the most appropriate response. For example, understanding of the impact of preventative and crisis resolution services may lend itself to this approach. Qualitative data and research may also yield insight in some areas instead of, or in addition to, systems-based metrics.
• It was emphasised that national bodies should seek to coordinate requests for data from councils to ensure returns are consistent and to minimise the burden of work on data and insight teams. The need for access to shared data, already underway in many areas, was also identified as important.
• Most critical however, is the need for co-production in the further exploration of this area. The topic is complex, and the development of effective management and monitoring will need expertise from national bodies, regions, system partners, people with lived experience of waiting lists, as well as council staff at all levels and across multiple teams.

Some areas of work currently being considered and addressed through sector-led improvement nationally and locally include:

• developing a common set of measures, ideally drawn from the Client Level Data collection, to support and inform benchmarking of waiting times and waiting lists across councils
• identification of supporting measures that inform an understanding of the wider context (for example, workforce, capacity, requests for support) and ensure a focus on understanding the impact on outcomes achieved for people who use services and their families
• supporting analysis of available data, including qualitative surveys to understand councils’ different approaches to support and inform discussion and shared learning
• identifying and supporting sharing of innovative practice and learning, including the learning through the CQC assessment.