Rehabilitation Networks – 1
Rehabilitation networks are the central theme of the recently published Rehab on Track. Community Rehabilitation Best Practice Standards. Its second recommendation is to “establish a local provider rehabilitation network to include primary, secondary, tertiary health care, mental health, social care, independent and third sector providers”. Moreover, its following recommendation is to “review existing rehabilitation services to remove silos of care and duplication of services”, which is simply explaining how and why to form a network because a network is “a group or system of interconnected people or things.” [Oxford English Dictionary] Indeed, as this blog post will show, the first recommendation, to “appoint a director of rehabilitation at the executive level in every Integrated Care system”, is also a vital precursor. Although networks can form themselves, success is more likely with a committed clinical leader.
This is the first of two blog posts on rehabilitation networks, and it replaces my earlier effort, which was incomplete (to be kind to myself). This blog post starts by outlining the unresolved problems facing rehabilitation services. In that context, it discusses clinical networks and their theoretical and evidential background, which will support them as one way of overcoming many of our problems.
Table of Contents
Patients and families are acutely aware of many problems with the delivery of rehabilitation to them, such as:
- Difficulty in identifying and being referred to an appropriate available service and, associated with this,
- The need for a proper service for their needs.
- Delays in the referral and transfer process not directly attributable to lack of sufficient resources, such as
- No clear guidance on service criteria, preferred referral process or even who to contact
- Referrals being lost
- Need for agreement by funding authorities or other people
- Failure to provide relevant information to the next service when the transfer occurs, with in some cases
- Repetition of assessment and data collection processes,
- Failure to carry forward previously agreed actions or treatments,
- Advice, interpretations, and therapy are at variance with earlier opinions and plans.
- Services seem to focus on their processes, not the patient’s needs.
- This may follow from the requirements imposed by commissioners.
Patients, families, and professionals will often contrast these experiences with the stated goals of the NHS centred on patient needs and well-being. For example, the 2019 NHS long-term plan says it will ensure that patients “get more options, better support, and properly joined-up care at the right time in the optimal care setting”, and NHS England’s Commissioning Guidance for Rehabilitation (2016) says that “Effective rehabilitation takes a holistic and individualised approach”. The Commissioning Guidance sets out ten principles, and the first two are “I have knowledge of, and access to, joined-up rehabilitation services that are reliable, personalised and consistent” and “My rehabilitation will focus on all my needs and will support me to return to my roles and responsibilities, where possible – including work.”
It is generally acknowledged that rehabilitation services fall well short of expectations, as “Making the right to rehabilitation a reality: Community Rehabilitation Alliance position statement” clarifies.
Why are we here?
We might better understand the situation by analysing the history of these long-standing and intractable difficulties. This might suggest some solutions.
In his 1942 report, Social Insurance and Allied Services, William Beveridge envisioned a national health service organised as a unitary national organisation, working with other critical national organisations covering Social Services, Employment, Education, and Housing. He recognised that these five organisations were interdependent in the battle against the five “giants on the road to reconstruction”, and he pleaded that the “organisation of social insurance should be treated as only one part of a comprehensive policy of social progress”. His advice was not followed through. Why?
When the NHS was founded in 1948, a General Practitioner (family doctor) faced with an illness they could not diagnose or treat would refer the patient to a hospital consultant who, usually on their own, would diagnose and treat the patient. The patient would then be discharged. Hospital systems are still based on a model where their role is limited to diagnosing disease rather than managing a patient’s illness. The model has a single doctor (consultant) responsible for a patient with a single primary disease requiring a single albeit complex treatment; in this model, the medical service has no responsibility for any associated issues.
Beveridge’s conceptualisation arose from his thinking without any theoretical framework to support his analysis. Without an explicit theoretical underpinning, people fell back onto the culturally dominant model, the biomedical framework. This had been used successfully for over 200 years and could claim credit for many significant advances in health care. It informed the healthcare model used by the NHS in 1948, and the NHS expected the medical team to be responsible for any rehabilitation needed by their patients.
Healthcare has altered radically over the last 75 years since the NHS started. Patients’ health issues are much more complex, with multimorbidity, long-term problems, multiple treatments, increased acknowledgement of social and psychological influences on illness, and a stated intention to be person-centred with shared decision-making. Healthcare delivery is also much more complex, with an explosion of specialist knowledge and skills, a corresponding increase in specialist clinicians, treatments that include interacting interventions extended over long periods, a vast range of available investigations, and many different professions.
For many years this complexity was handled by fragmentation. Hospitals and, to a lesser extent, community services formed small groups or organisations focused on their area of interest. This specialisation disrupted whole patient care, as the General Medical Council and others realised in the report, Shape of Training.
More positively, people started to work in teams because teamwork is often the only way to solve complex problems. Teamwork is universal in healthcare, though not all groups are called teams. At the same time, networks emerged, a few were named as such, but most were informal. A few groups organised themselves into departments, such as a neuroscience department, which might include neurology, neurosurgery, neuropathology, neuropsychology, neurophysiology, neurological rehabilitation, etc. These are similar to a small, specialised network.
Unfortunately, the development of teams and networks has occurred mainly within the biomedical framework, centring on disease. The recent proposal to develop a specialist service for patients with traumatic brain injury is a current and classic example, and my colleagues Meenakshi Nayar and Javvad Haider and I have explained why it is inappropriate.
The problems condensed.
The most significant issue causing problems is a failure to understand and use the biopsychosocial model of illness. Almost everyone – patients, the public, politicians, healthcare professionals, and healthcare managers- uses the biomedical model of illness. Consequently, they fail to understand the nature of rehabilitation and conceive it as a treatment given to a patient, similar to a drug or operation. Indeed, many people equate rehabilitation with physiotherapy.
Five significant features of rehabilitation lead to most of the issues mentioned. They are:
- Case complexity.
Many interacting factors influence each patient’s situation; the relationships are non-linear and often bidirectional. Complexity leads to unpredictability; one cannot accurately predict a patient’s clinical course, how much effect any intervention may have, or the rate, direction or extent of any change.
- Organisational complexity.
The complexity of the organisations is not acknowledged. Yet, it underlies many problems, such as difficulty working collaboratively and cooperatively, arranging timely transfers, and the failure to transfer information. A person’s needs will frequently span many organisations, and each organisation will have its own culture, rules, priorities, financial arrangements etc. The interrelationships are certainly bidirectional, non-linear, and interactive. The political drive encouraging competition further complicates matters. The outcomes are unpredictable.
All healthcare wishes to focus on the patients, but it is crucial to be person-centred in rehabilitation, for example, when assessing a patient. Each person has priorities and goals, strengths and weaknesses, context, and a mix of disease-related losses. If the formulation and rehabilitation planning does not establish and respect the person’s priorities and goals, they will not engage with the plan.
- A tension between expertise and being local.
Every patient wants the best, meaning access to someone who knows about their problems. Expertise derives from seeing many people with the same problem, which usually means covering a large population from many distant areas. Every patient also wants a local service, and local services have expertise in the locality but not necessarily in the condition.
Most processes with the biomedical model are quick, measured in hours, days, and sometimes weeks, but rarely longer. Rehabilitation requires behaviour change, changes in attitudes and expectations, acquisition of new skills etc. and all these processes take weeks, months, and sometimes years. When the whole system organisation runs fast, any part that runs at 10% of the speed will face difficulties.
The issue is the challenge of complexity, a construct discussed later that encompasses the five problem areas. A clinician or clinical team is faced with a patient with a complex illness, and they have to assist that patient by drawing on help from an equally complex system.
The complexity of the patient’s problems can be understood and managed using the biopsychosocial model of illness. However, we must harness the scattered rehabilitation resources within a complex social support system extending well beyond health, and we currently do not have a way to manage the complexity of rehabilitation services.
The way forward
The predominant obstacle to change is adherence by healthcare organisations and politicians, who represent the general population, to the biomedical model. They do not appreciate how complex a person’s illness is or how rehabilitation can improve their situation. Although the biopsychosocial model was first publicly expounded 47 years ago, it has only had a minor effect on clinical healthcare practice and virtually no impact on service organisations. We are unlikely to reduce the influence of the biomedical framework in the next 10-20 years.
Therefore, we must consider how to manage the complexity of the services involved.
A detour to consider complexity.
The complex is not synonymous with complicated.
Something is complicated if there are many factors to consider. However, if it is possible to identify all the relevant factors and describe their relationships and interactions to predict the outcome, the matter is complicated, not complex. Once a complicated issue has been analysed thoroughly, one can always explain it and predict how changing one factor will affect the outcome.
A complex matter is different because:
- The relationships between factors are non-linear
- There are mutually interdependent relationships, so a change in Factor B due to a change in Factor A may then influence further change in Factor A – for example, a positive feedback loop.
- The state of a factor may be influenced differently by different combinations of other factors.
The consequence of these characteristics is that the effect of altering one factor is unpredictable, and one can never predict the outcome given any specific set of values for the factors.
Anyone interested in a deeper discussion can read Roberto Poli’s “A note on the difference between complicated and complex social systems”. He stresses that “the difference between complicated and complex systems is a difference of type and not of degree.” One can solve a complicated problem; in contrast, a complex problem has no definite solution. He quotes Donella Meadows, “We can’t control systems or figure them out. But we can dance with them!”
Healthcare is complex, and rehabilitation is among the most challenging areas within healthcare specialities, given its integration with psychological and social factors. Complexity science emerged from systems theory, developed by von Bertalanffy in the 1920s and drew upon ideas from chaos theory. It grew further between 1980 and 1990.
In 2001 Paul Plsek and Trisha Greenhalgh highlighted one crucial insight from complexity science; healthcare should be considered a complex adaptive system. The immediate consequences are that:
- A top-down, mechanistic, command-control management style will have a minimal beneficial effect,
- Attention should focus on the relationship between the components rather than the parts themselves,
- Specifications given to the system should be minimal and general. An example is how complexity theory may have fostered the changes in education and training, where a few broader adaptive capabilities have replaced multiple specific competencies.
These principles suggest that we should focus on something other than reorganising existing services, mandating services to use criteria, and mandating that patients follow pathways through the services. Each service is a complex adaptive system, so each will adapt to optimise its survival.
Instead, we should attend to the relationships between existing rehabilitation services and give the services an overall strategy setting out general principles. This will then form a higher-order complex adaptive system which, guided by the strategic plan, will adapt its relationships to provide a better service. This new system is a clinical network.
Clinical rehabilitation networks.
Rachael Addicott and colleagues reviewed the emergence of networks between organisations from about 1990 and in public services by 2000, noting that public services were using them to develop more collaborative and coordinated service delivery. They were well established in the NHS by 2007.
Cropper and colleagues, considering managed clinical networks in paediatrics, suggested several purposes behind such networks:
- Increasing patient-centredness
- Sharing or developing scarce resources that are often unique to a small service with strict criteria for engagement in rehabilitation,
- Increasing coordination between all parties in providing services,
- Accounting for service performance across healthcare boundaries
They also stress various necessary characteristics all parties need to adopt:
- Having less sense of ownership of a service, resource, or location,
- Being cooperative with others, not competitive,
- Having a broader view of service performance outside the limits of the service concerned,
- Contributing actively to the network,
- Tolerating uncertainty about outcomes.
One crucial common factor must be recognised; these characteristics are the opposite of the competitive, capitalist, financially driven ethos that some governments wish to impose. Other studies, mentioned later, identify similar attributes as essential for success.
Research studies into clinical networks usually combine evaluation, observation, and description. For example, Bernadette Bea Brown and her colleagues reviewed nine quantitative and 13 qualitative studies in 2016 and concluded that clinical networks could improve the quality of healthcare delivery; their effects on effectiveness and outcomes were uncertain. One crucial insight was that success depended on “strong clinical leadership, an inclusive organisational culture, adequate resourcing, and localised decision-making authority”.
A later study from the Clinical Networks Research Group investigated 19 clinical networks in South Australia. It found evidence of improved quality of care in clinical networks. They observed that the networks facilitated changes in the system and that leadership and network management were crucial to success. They also observed the need for a strategic overview, a form of a top-down approach, to take advantage of the operational adaptability encouraged by the clinicians.
Braden Manns and Tracey Wasylak also reviewed healthcare networks, focusing on their use in Canada. On looking at the given purposes, they suggest that clinical networks can be used to prioritise areas for change and identify and implement strategies to improve care and patient outcomes. They note that networks tended to be developed when an area of practice was complex and crossed boundaries.
However, in 2007 Rachael Addicott and colleagues sounded a note of caution. They observed how an intervention by the government with top-down demands distorted the earlier bottom-up approach and limited the effects achieved by the managed cancer clinical networks.
This overview of the issues facing rehabilitation service delivery leads to the following hypotheses:
- When he drew up plans for Social Insurance and Allied Services, William Beveridge envisioned healthcare (the NHS) as only one part of five national social services; he stressed that each was only one part of a comprehensive policy of social progress.
- The dominance of the biomedical model in 1948 led to its separation, based on a model of short acute illnesses with a single cause and cure, with no consideration of other health-related problems. Rehabilitation was expected to be undertaken by the disease-focused services.
- Specialisation led to the fragmentation of healthcare services focused on disease.
- The healthcare systems adapted by forming teams and a few networks.
- The current problems arise from the complexity of
- The patients’ problems
- The services needed
- The patient’s complexity is managed using the biopsychosocial model of illness.
- The complexity of services spanning many teams, organisations, and social care systems might be resolved by focusing on the relationships between services and ensuring an overall strategy for all services.
- This description applies to a clinical network.
Therefore, we must consider what a clinical rehabilitation network should be, its goals, principles, and structures. These matters are considered in the accompanying post.