Increasing patient involvement in care pathways

Driving forward the patient voice and partnership working across the NHS is one of the keys tasks of NHS England and, in fact, all staff in the service.

Achieving this agenda within hard to reach and vulnerable groups, however, is going to be a significant challenge and the board needs to look to existing success stories for inspiration.

For instance, they could use some of the unique engagement and participation initiatives currently being delivered across specialist secure mental health services.

The My Shared Pathway programme has demonstrated that patients within secure mental health services − some of the most vulnerable and isolated groups of individuals in health services − have been given a real voice. And they are determined to make sure they are heard.

Collaborative working

The programme was launched in 2010 with three key objectives in mind:

• to shift secure services towards a much more outcomes-based approach to the delivery of care;
• to place as much responsibility as possible into the hands of patients to engage and drive their own pathways; and
• to support a shift in the culture of secure services towards a greater emphasis on recovery, increased collaboration between staff and patients, and greater transparency in system processes.

At an early stage it was recognised that a tripartite approach to the programme was required if it was to really engage with the secure system. Clinicians, patients and commissioners had to work collaboratively if the programme was to succeed.

‘It was only with the joint input of patients and clinicians that the real developmental work became clearer: how to change the culture’

In fact, without this “modelling” of real partnership working in the conception, development and delivery of the programme, it could not move the system towards more collaborative working. It therefore became clear that it was the journey, and this working in partnership, which was much more important than the destination itself.

Yorkshire and Humber Specialised Commissioning Group took the lead on the initiative as it already had a track record of working in partnership with patients in secure services through a range of initiatives that have recently been evaluated.

The launch day for the programme was organised and facilitated using an action method approach that employs drama techniques and exercises to enable greater user participation.

Real involvement

An important learning point from earlier patient involvement in Yorkshire was the need to use a wide range of engagement methods in participation. It is not enough to invite patients to meetings or to circulate documents for consultation.

‘The evidence base for secure mental health services is poor and robust research into what works is long overdue’

Real involvement means providing a range of opportunities and methods that patients can use to get their voices heard. Often the breaking down of more traditional and professional boundaries is the starting point for this to happen. It was this involvement and participation that dramatically improved the outputs from the process and suggested the final destination.

The launch day and subsequent development meetings and workshops focused much more on linking recovery to explicit outcomes that were to be achieved in order to move out of secure care.

It was only with the joint input of patients and clinicians that the real developmental work became clearer: how to change the culture of secure services to support patients in achieving their own outcomes, which would help them move out of secure care.

Difficulties and implementation

Much has been written about the recovery process in mental health but secure mental health services have struggled to implement this. They have also found it difficult to agree what outcomes to use.

Further difficulties are associated with agreeing how to measure progress against them. Early work by the Quality Network for Forensic Mental Health Services of the Royal College of Psychiatrists identified a number of outcome areas and measures that could be introduced as a standard across secure services, but it was recognised that much more work was required.

In fact, the evidence base for secure mental health services is poor and robust research into what works is long overdue.

As a pragmatic starting point, work was undertaken to identify current best practice in relation to outcome measurements and a draft outcomes framework for secure services was developed as part of the “managing successful programmes” method. The eight outcome areas related to the following clinical factors:

1. Insight
2. Mental health recovery
3. Harm-related behaviours
4. Problems with substance misuse
5. Nature of future plans
6. Physical health status
7. Life skills
8. Relationships

Nevertheless, there remained considerable opaqueness and likely variation in how secure services made decisions about the clinical thresholds for entry and exit of their services. The limited evidence base also meant there was a lack of clear outcome metrics that supported commissioning decisions at a wider population level for these types of services that extended across the care pathway.

As part of the set-up we organised focus group meetings with clinicians, carers, patients and commissioners. We also had a consultation with the Ministry of Justice − a key agency for determining policy and practice related to the admission and discharge of offenders with mentally disorders from hospital.

The final group of outcomes was selected as they appeared applicable to all representative clinical populations, comprised of dynamic factors amenable to change and also their relevance across secure pathways right through to the community. A scale was developed for each domain, which then became subject to part of the overall piloting and validation exercise as described below.

Recovery and outcomes

In order to make the link between recovery and outcomes that would ensure collaboration between patients and clinicians, a number of supporting resources were developed that aimed to ensure the outcomes supported a recovery-based approach, which engaged patients directly in the process.

These My Shared Pathway resources comprised a series of booklets of questions that clinicians and patients could use to focus a discussion or conversation in a number of important areas. The intention was to support collaboration and promote engagement in the care planning process.

Five booklets were developed as part of the programme:

• A shared understanding: aims to explore with patients their understanding of their admission into secure care and the reasons for it, providing an opportunity to tell their life story and an appraisal of their skills and achievements.
• My relationships: explores how the patient relates to other people and how to make sure those relationships are helpful in the process of recovery.
• Me and my recovery: helps patients explore their personal story, identity hopes and aspirations for their recovery, including personal goals and planning for the future.
• My safety and risks: helps to identify and understand positive risk taking and harmful risks associated with being in secure care.
• My health: helps service users to understand more about their physical and mental health in order to live as healthily as possible.

Each of these resource booklets can be used along with other recovery-based resources and tools to provide a sound basis for care planning in relation to the eight outcome areas, as well as to assist service users in understanding what they need to achieve in order to move on from secure care.

Patient feedback

The development of these resources has been an iterative process and patient feedback has been vital for the ongoing development, refinement and adaptation of all the materials for different patient groups. Feedback from patients has been very forthcoming and has been provided and collected in a variety of ways, at a regional and national level.

Here are some of things patients have said:

• “My Shared Pathway lets me tell my own story, using my own words and I feel much more confident about doing this now. I feel like I can take back some control of my life.”
• “I’ve really enjoyed using the pathway resource books. I really got into them, spending long periods working on them and they helped me to think about the important things in my life more. I spent a lot of my sessions with my primary nurse working through the questions and setting goals. I’d never really thought about what my goals were before. I think the staff have a better understanding of where I’m coming from now.”
• “I know why I’m in hospital now and I’ve got a better idea of how to move on. I understand a bit more about what the outcomes are that I’m working towards. I understand my risks better and how to manage them. My relationships aren’t perfect but I’m working on them and they’re getting better.”

Negative feedback has almost all been about the language, format and accessibility of the resources. This has been invaluable in developing adapted materials better suited to people with learning disabilities, deafness and people with attention deficits. Other common themes of difficulties using the materials are those of lack of patient interest and engagement, which are not specific to this process.

‘With the rollout of the programme, secure services have moved closer to a recovery and outcomes-based approach to care delivery’

Feedback from clinicians has included similar themes to those from patients. Most staff have embraced the spirit of the programme and have found the materials useful in their clinical practice.

Innovation fatigue has been a factor in the negative feedback from clinicians, as has lack of time to support patients in their use of the materials. A perception of undue overlap with other recovery tools has also been reported.

Collaborative approach

In reply, it has always been emphasised that the My Shared Pathway resource booklets are to be used as flexibly as possible and that other recovery tools can also be used in supporting people to work towards achieving their outcomes. Indeed, the programme is all about this collaborative, recovery-based approach, linked to specific outcomes to move on from secure care.

As the outcomes and resource booklets were developed through a number of workshops and focus groups, it was necessary to test out and refine the products prior to national rollout. A total of 35 pilot sites were selected nationally comprising a range of medium and low-secure services.

These services tested out the documentation over five months and an independent evaluation of this pilot phase was undertaken by York University. This led to a number of significant changes to the documentation and further refinement of the programme.

‘These developments will take years. The real participation of patients on that journey, however, is key to the whole process’

Rollout of the programme started in April 2012 as part of the commissioning for quality and innovation process across all medium and low-secure services. At the same time, work within the three high-secure hospitals at Rampton in Nottinghamshire, Ashworth in Merseyside and Broadmoor in Berkshire was considered in light of the programme and convergence work began to ensure there was alignment and consistency between recovery and outcomes-based approaches across the whole secure pathway.

This year has seen the development of regional recovery and outcomes groups that draw together patients, clinicians and commissioners from secure services geographically located together, to drive and steer the local implementation of the programme. Discussions in these groups have led to further development and refinement of the programme and are uploaded onto an NHS network called My Shared Pathway.

With the rollout of the programme, secure services have moved closer to a recovery and outcomes-based approach to care delivery, with an agreed number of explicit outcome areas providing a framework for individual care planning, the care programme approach, and potentially the ability for services to performance report against outcomes instead of inputs.

More importantly, the recovery approach, patient involvement, participation and transparency will all be intrinsically embedded as part of the outcomes focus, so that patients can drive their own pathways as much as possible.

Next steps

Moving towards a recovery and outcomes approach within secure services will require a significant shift in the culture of these services and the system as a whole. The journey for this change process is likely to be lengthy, measured in years, if not decades, and so further developments to continue this process are planned.

Much more work is required in identifying and developing outcome measures that can be used consistently across the secure pathway. These are likely to include a range of methods that are able to measure and quantify change, both behaviourally and subjectively. More work is required in relation to identifying the range of interventions and packages of care that are most effective in supporting patients to progress.

These developments will take years. The real participation of patients on that journey, however, is key to the whole process. Not only is this because the quality of the products developed is superior, and not only because it is an NHS England policy priority, but simply because it is the right thing to do.

Rosie Ayub is national shared pathway lead at the South Yorkshire and Bassetlaw Area Team, NHS England; Ian Callaghan is national service user lead at My Shared Pathway; Dr Quazi Haque is executive medical director at Partnerships in Care; Ged McCann is associate director of commissioning at North of England Specialised Commissioning Group, Yorkshire and Humber office