Rehabilitation Networks – 2

The Community Rehabilitation Alliance recently published some Best Practice Standards for rehabilitation aimed at the newly founded NHS Integrated Care Boards that manage the Integrated Care System. It recommended the formation of a rehabilitation network, and the standards applied to the network were set out and summarised in tables. I have abstracted them into a single document for download. My first blog post reviewed the history leading up to the current problems and analysed why it is so intractable. I concluded that complexity characterised the patient’s concerns and the rehabilitation services. The biopsychosocial model of illness facilitates clinical analysis and management, but there is no framework or system to assist in managing the service complexity. The evidence from complexity science suggests we should focus on two aspects of the services, the relationships between the many separate services and the strategic goals for the services. These two characteristics describe a clinical network. This post translates the theory outlined in my first post into action.

Introduction

Healthcare is a large, complex social enterprise employing many people, each with an area of expertise. People with similar specialism form groups and systems, and healthcare has many large and small systems and units. Most individuals, groups, and larger teams will interact with many groups doing different things; it is impossible to delineate any group that does not interact with several, usually many other groups, often with quite different areas of interest.

For example, a group specialising in neurological oncology will interact with neurosurgery, neurology, palliative care, neuroradiology, radiotherapy, and primary care services, to name but a few. Conversely, the neurology group will interact with vascular services, acute medical care services, neurophysiology, neuropsychology, and employment services, to name but a few.

Alan Dow and his colleagues illustrate the difficulty with an example in cancer care. They studied the people involved with cancer patients and how they interacted and worked. They took data from the electronic patient record over 60 days after the diagnosis. They found that the identified “networks are generally massive. Across the networks, the median number of individual healthcare professionals was 117” and “networks were heterogeneous. They varied in size from 8 to 440 healthcare professionals.” These were networks of individuals, not services. A team is a network of individuals, and I have discussed the difficulty of defining a team here, illustrated in the figure below.

The consequence is that contrary to suggestions I have made before, it is impossible to isolate any service, such as rehabilitation, to make it exclusive and able to act independently of other healthcare services. I have argued that services needed by a patient after a traumatic brain injury should not be isolated from rehabilitation. Still, until now, I have not appreciated that the same argument applies equally to rehabilitation within healthcare.

Thus, rehabilitation and all other healthcare activities involving patients with complex diagnostic or management issues that require input from many services face a problem.

How can one ensure that patients receive a service with expertise that is coordinated and seamless but delivered by a few of the much larger number of individual services that provide aspects of rehabilitation, especially when each service will be part of several other informal networks?

What is a healthcare network?

There is no generally accepted definition, and often the description states its goals rather than what it is. Bernadette Bea Brown and her colleagues developed a typology for their systematic review. They identified five classes of networks in healthcare:

Communities of practice, usually informal and short-lived, driven by enthusiasm within the group,
Information network, primarily acting as a register of groups interested in receiving information,
Clinical network (non-managed), a voluntary grouping of individuals working across boundaries with governance arrangement,
Clinical network (managed), a group of both individuals and their parent organisations, working across boundaries with governance arrangement,
Integrated service delivery is a group of healthcare organisations with some individuals focused on integrating services.

The description they give is “clinical networks provide a structure for clinicians to work more closely across institutional and professional boundaries, and allow for continuous working relationships and flow of knowledge about best practice between individuals and organisations, thereby improving the quality of and access to care for patients, including those who require coordination of care across a range of settings.”

I suggest the rehabilitation network units should be the services, not individuals, and the units may vary from a group of clinicians in a locality to a rehabilitation department that provides inpatient, outpatient, and outreach care across many domains, such as trauma and neurological conditions.

In practice, all services will be part of a larger organisation which often will have several rehabilitation services; for example, a hospital may have different paediatric, cardiological, orthogeriatric, and neurological rehabilitation services. Furthermore, an extensive rehabilitation department may have semi-independent teams covering, for example, assistive technology, acute-onset disability needing inpatient care, or vocational rehabilitation service. The network must decide whether a service should be separate or within a more extensive service, balancing the advantage of more detailed information about each service against the increasing complexity of enlarging the network.

Services from outside health must be included as they will meet many rehabilitation service needs. For example, Social Services usually have the sensory impairment team offering visual and auditory rehabilitation and occupational therapy teams advising on housing adaptations. Non-statutory organisations such as Headway and the Stroke Association often help rehabilitate patients with traumatic brain injury or stroke.

The two challenges

Rehabilitation services must resolve two fundamental problems:

Identifying the most appropriate service for a patient’s needs.
Once needs are identified, ensuring a timely and seamless transfer into and between services, carrying forward all relevant information and rehabilitation plans.

Identifying and arranging transfer to the service best able to meet the patient’s needs is challenging because:

There are many small services, some of which will not be known to most other services,
Each service has idiosyncratic criteria and rules
1. They may concern the disease a patient must have or must not have, duration of involvement, clinical factors, the patient’s general practitioner etc.
Each transfer may require an agreement for funding or have other requirements before the transfer, further delaying and complicating the transfer.

Transferring a patient smoothly is challenging because:

Services are often reluctant to accept the formulation and plans of other people, insisting on starting again,
Different services use different data collection tools,
Practical or other less justified reasons delay, limit or prevent the handover of all clinical information.
1. Patient confidentiality and “we do not allow our notes to leave our building” are routinely used as excuses for not handing in crucial information. The parlous state of NHS IT systems exacerbates the situation.

I must stress that there cannot be a rehabilitation pathway because each patient’s situation is different, and although there may be roads not taken, there will be many pathways. These problems cannot be solved by devising even a few fixed routes.

I will now outline a rehabilitation network and how it could resolve these challenges.

Rehabilitation network – scope and goals.

The network must contain all services used regularly as part of a patient’s behavioural and social adaptation to their illness to be effective. Its scope includes all services that focus on ameliorating the limitations on activities and social participation associated with an illness; services focused on disease are excluded. The coverage must consist of relevant services from all statutory and non-statutory organisations.

The goals should be considered from three perspectives, the patient, the individual professional or team, and the commissioners; they are complementary and are simply different ways of looking at the same thing.

A patient’s goal is to ensure that their rehabilitation needs are identified and met once they arise and that people and services with appropriate expertise accomplish identifying and meeting the requirements without undue delays and as close to their home as practical.

The goal of a service provider is to ensure that all patients who might benefit from their expertise are referred promptly with sufficient information to evaluate their suitability and that they can identify and refer to other services needed without undue difficulty or delay.

The commissioner’s goal is to ensure their population has equitable access to efficient and effective services that meet all their rehabilitation needs without undue patient delays or harm.

The overall outcome will be a rehabilitation service that enables patients to:

Be assessed by an expert rehabilitation team when someone needs rehabilitation
Receive the required input from a suitable expert rehabilitation team
Move from service to service and place to place according to need, always being as close to home as is practical, without undue delays or interruption in their programme.
Contact a rehabilitation team if they need to after discharge from rehabilitation.

The MindMap below shows the four goals of the network, framed as expected high-level outcomes; it can be downloaded.

Rehabilitation networks – the objectives.

The Community Rehabilitation Alliance’s standards document sets out standards for the network, relating to the seven principles they suggest should guide rehabilitation services. The network standards are not derived directly from any overarching network goals.

I will start with the network’s goals and set the objectives for a fully-developed network; the network should:

Have an accessible register of all network services with a standard set of up-to-date information about each.
Have protocols governing the acceptance and transfer of patients from service to service.
Work towards the agreed strategic aims of the network.
Have protocols governing collaborative and cooperative working when a patient sees two or more services simultaneously.
Monitor its performance and undertake quality improvement activities to improve performance.
Ensure that both clinical and service decisions are focused on the needs of patients and their families and friends.
Ensure all actions are based on the best available evidence, maximising effectiveness and minimising harm.
Have a planned programme of multi-professional education and training.
Support research.

The MindMap below illustrates six central characteristics of a rehabilitation network that will arise from the objectives; it can be downloaded here.

Rehabilitation Network – structures.

The network needs to:

Be centred on the needs of patients and families.
Be fully integrated into other healthcare systems and be guided by the principles applied to all healthcare.
Have strategic aims that are considered and agreed on by all relevant parties:
Commissioners, providers, patients and their families, Social Services, and many other organisations.
Be actively monitoring and improving its quality – effectiveness, efficiency, and patient experience.
Ensure that all services are engaged actively in all developments and changes.

In a monumental review, Tiago Jesus and his colleagues demonstrated that a person-centred philosophy had to apply throughout the healthcare system, including top management and commissioners, for services to be patient-centred. I have discussed this here. The whole network must prioritise being person-centred.

Each of the other five needs (b-f) will be the responsibility of a specific group. A MindMap showing the structures is below and can be downloaded.

Integrated Care Board.

In England, the Integrated Care Systems are supposed to encourage partnerships between Health, Social Services and the Voluntary sector. The Integrated Care Board is “an NHS body responsible for developing a plan for meeting the health needs of the population, managing the NHS budget and arranging for the provision of health services in the ICS area.“

The Integrated Care Board will be responsible for a strategic overview, considering the needs of the whole population. It should remain strategic, setting out principles and not specifying how the aims will be achieved, as the network board will be responsible for a more detailed strategy, and the network council will be responsible for the precise execution of the plan.

The Integrated Care Board has two other roles. It will ensure a collaborative and productive relationship between the Rehabilitation Network and other health services focused on disease diagnosis and management. It will also need to facilitate integration with other local authority agencies.

Thirdly, it must ensure equity and the fair allocation of limited resources between the many different parts of the health service. Because rehabilitation inevitably involves other local authorities, such as Social Services and Housing, this must also consider equity across more than health.

These last two responsibilities will require active involvement with the Integrated Care Partnership, “A statutory committee jointly formed between the NHS integrated care board and all upper-tier local authorities that fall within the ICS [Integrated Care System] area” responsible for “producing an integrated care strategy on how to meet the health and wellbeing needs of the population in the ICS area.”

When considering strategy, the Integrated Care Board and the Director of Rehabilitation will need to consider the following:

Conditions – diseases, impairments, disabilities
The network services should cover needs arising from all conditions people present with. Unusual or rare needs may be met outside the local network, but an arrangement should be in place for rare conditions.
Treatments – the whole range of interventions
The network services should cover all the rehabilitation interventions people might need. Rare or unusual interventions may be accessed from outside the network, but a process should be in place to handle these needs.
Local access – availability in different areas
Any person with a need should be able to access network services wherever they are; inevitably, ease of access and the mode of delivery may vary (out-patient or at home).
Equity – is observed variation discriminatory.
Variation is inevitable in every sphere. The Board needs to consider whether it is within reasonable limits and whether there is a discriminatory bias. This will depend on the data collected.
Effectiveness – is achieving intended goals.
This should concentrate on the network being effective. The network itself should consider the effectiveness of the component services. The Board needs to ensure that all information is accurate and current and that the relationships (i.e. transfer of data and transfer of patients) are all functioning well.

The outcome of these considerations should inform strategic development, considering the following:

Redistribution – improving equity across the locality
If there is evidence of over-provision or under-provision of some services or other inequity (e.g. in quality) across the locality, a plan to increase service access or quality in underserved areas.
New or increased services – improving network performance
If some conditions have little or no service or some treatments have limited or no availability, then the network needs plans to increase availability. This will include considering needs currently met by services outside the network.
Developing links outside – for unusual conditions or treatments.
Rare and unusual conditions and treatment needs are inevitable. The network should link with nearby rehabilitation networks to develop a regional network covering these conditions or treatments.

The Network Board.

The Integrated Care Board will lack the resources and expertise to develop a complete rehabilitation strategy. A Network Board will fulfil this role and take over most of the abovementioned areas.

The Network Board should have representatives from:

Patients
They are the ultimate focus of all activities and can give evidence from their experience of the network, individually or through surveys. They can also contribute to discussions on prioritisation, areas needing improvement, and areas of excellence.
Carers
This term may include family and close friends. They can also provide evidence of their experience, contribute to discussions on strategy and prioritisation etc.
Statutory and non-statutory organisations.
They have two interests. They will refer people for rehabilitation, and they will also host some of the rehabilitation services. Health and Social Services are conspicuous members, but there should be a representation of a few of the many other organisations such as Education, Housing, the Department of Employment, patient support organisations etc.
Commissioners
They pay for all the health rehabilitation services through the Integrated Care Board. Other bodies contribute indirectly through the services they contribute to the network.

It is worth stressing, again, how widespread rehabilitation services are. The network is likely to include services from:

Social Services departments, such as community Occupational Therapy and Social Care services
Housing Department, such as disability grants and housing adaptation services
Education Department, such as Special Educational Needs services and carer support
Learning Disability services
Department of Employment, such as sheltered work, return to work and vocational rehabilitation services.
Community and Primary Care services, such as District Nursing and Continence services
Non-Statutory organisations may provide daycare centres, social support services and some active rehabilitation treatment services (e.g. vocational rehabilitation).

The Network Board will focus on strategic principles covering:

Collaboration and cooperation
How the network works (i.e. the relationships)
1. harmonisation of processes
2. development and improvement of referral and transfer processes
Scope
of what the services need to cover
Service changes needed
1. to maintain and improve quality
2. to meet the strategic aims, and
3. to adapt the network to changing needs.

Training and education needed
to develop areas of expertise needed

The Network Council.

The Network Council is responsible for the network governance and how it organises its relationship so that services work collaboratively towards the agreed strategic aims and principles. Its primary membership is service representatives, with a patient and someone from the Network Board. Its functions are to discuss and agree on the following:

The register.
1. what information must be given about each service
2. Updating information
Relationships
1. Referral process – information to provide, response time
2. Transfer process – information to transfer, follow-up, carrying plans forward
Working together
1. Defining shared responsibilities
Development of and change in services in line with strategic aims
1. Taking on new roles
2. Transferring roles to other services
Training and education
1. Planning a regular programme for network services
2. Arranging training placements and opportunities
Quality improvement
1. Peer review and visits within the network
2. Performance data to collect and analyse
3. Actions needed

These functions will require an administration with regular, planned network meetings.

The register.
1. what information must be given about each service
2. Updating information
Relationships
1. Referral process – information to provide, response time
2. Transfer process – information to transfer, follow-up, carrying plans forward
Working together
1. Defining shared responsibilities
Development of and change in services in line with strategic aims
1. Taking on new roles
2. Transferring roles to other services
Training and education
1. Planning a regular programme for network services
2. Arranging training placements and opportunities
Quality improvement
1. Peer review and visits within the network
2. Performance data to collect and analyse
3. Actions needed

These functions will require an administration with regular, planned network meetings.

Network services.

These are the building blocks. Each service must explicitly describe its nature and processes, focused on matters needed in any relationship with any other network member. The service will be responsible for keeping these data accurate and up-to-date, and a yearly review should be expected. Each service must describe the following:

Its scope – whom it sees, what it does, and where
The detail will depend as services differ significantly, but anyone reading the scope should know its area of practice. The information will cover such matters as the clinical features of the patients managed or specific interventions (processes) the service offers, where rehabilitation is delivered (inpatient, outpatient, community), and any particular exclusion criteria within the patient or intervention group accepted.
Its resources – what specific resources it has.
Again the details will vary, but anyone reading the description should understand what it has available for its caseload. This might include staffing details, such as professions and numbers, physical attributes, such as the number of beds or outpatient attendances, and any specialist resources
Its referral and admission process – how to contact with what information.
This item will have a similar structure across the network. Other people must know how to make a referral, with contact details being easily found. They must be told what information should be provided, and the process and timing should be outlined.
Its discharge process – including expected follow-up.
This should highlight any expectations on the length of involvement, any typical linking to downstream services, and what follow-up is usually offered.
Its training and education – an outline of opportunities available
This should cover post-graduate training posts, student attachment opportunities, other placement opportunities, and any courses or lectures.
Its research engagement – anything of note
Any involvement in or support of research or links should be noted.

Rehabilitation networks - starting.

A complete network will take some years to develop. They are more likely to succeed if they emerge from the current chaos, with services recognising their need and potential benefits. A pre-planned, imposed network will almost certainly fail. On the other hand, some encouragement will assist.

For example, a local rehabilitation service could agree with a small number of frequently used services in the locality to:

Put some basic information into a register and keep it up-to-date with a yearly review. Items would include the types of problems they can manage and any exclusions, with justification.
Use and accept a minimum information set to be transferred with the patient. The network members would be responsible for discussing and agreeing on the information. This could be the Rehabilitation Prescription used in trauma rehabilitation services.
Develop an agreed process for admissions and transfers.

When a director of rehabilitation is appointed, the nascent network should approach them, and they should provide support. Once the small network is functioning, a more important meeting of local services interested could discuss progress, debate improvements, and encourage other services to join. The process I suggested during the Covid crisis could be part of the development.

Conclusion

In this post, I have worked through some of the many practical matters to be considered when setting up a rehabilitation clinical network. These are untried suggestions, and other approaches may be better. Whatever method is used, I have suggested that the principles of the network are straightforward. The crucial principle is that the services must initiate the network, which will probably fail if set up by higher tiers of management. The second vital principle is that a network must be a collaborative, cooperative, and trusting organisation with no single powerful agent controlling it. The third essential feature is developing simple rules and processes focused on service relationships. There needs to be an agreed set of strategic goals, but the network members must be involved in setting these and be allowed to organise how they are implemented. Reaching this nirvana will take time and effort.