Help change rehab.
Most people feel rehabilitation services in the UK could be better. They usually focus on the lack of resources, but most people will also refer to bureaucracy and how services are organised. This post was first published on January 31st 2021, during the first year of Covid. This revision occurred in May 2023 and is mainly restricted to improving the layout, presentation, text etc. There are a few corrections. I intended to empower rehabilitation teams to achieve change – optimistically, I am sure, but I must try! Since then, the Community Rehabilitation Alliance, founded in the autumn of 2019, has published best practice standards for community rehabilitation, an initiative considering the same issues. I hope they precipitate change. I have left much of the post unchanged because the issues I raise are still germane, and the ideas could work.
Table of Contents
This is a true incident.
A friend of mine is helping out as a physiotherapist during this pandemic. Recently, to get a patient who had just been discharged from the hospital seen, she had to spend nearly three hours inputting three different sets of referral data, all covering the same basic information, into three other systems with varying referral criteria belonging to three organisations. The patient needed a short visit of probably at most ten minutes following hospital discharge. The hospital had not provided any information.
In a one-hour Zoom conversation with two friends helping out in rehabilitation services locally, I heard example after example of the problems they experienced with local rehabilitation services, issues that are almost certainly occurring in every locality in the UK:
- many small services, each with a different name, slightly different acceptance and discharge criteria, and each with its own rules.
- each organisation and each service requires their own complete set of data on the patient before progressing to acceptance, let alone action;
- each organisation uses different forms and sets out differently using various measures, but all cover the same underlying information.
- the scoring format varied randomly: some measures scored good as a high number and some as a low number;
- most services are unwilling to be flexible because their contract is to provide so many sessions for each patient, regardless of need. Consequently, some patients with low needs are seen while others with high needs are not seen;
- there is no transfer of information between services; services rarely accept and use clinical information or recommendations made by another service;
- patients are often referred to multiple services because no one can be certain that a referral will be accepted;
This “awkward, complex, or hazardous situation” [OED] is a quagmire. I cannot call it organisation because it is not. It has existed for years, everywhere, yet no one does anything about it. Efforts to improve matters over 40 years have failed in the UK.
As a rehabilitation community, we have a once-in-a-lifetime opportunity to improve rehabilitation matters. The pressures of work are changing most other parts of the NHS. Rehabilitation should not be left out. You could help.
Why are we still in a mess?
History explains why we are in a mess. I have detailed it here. In brief, services have developed in response to needs and political pressures; each new service is set up independently of all other services. They are all short-term solutions to an immediate problem. No underpinning framework or theoretical basis has been used.
Over the last fifty years, numerous reports on rehabilitation services have highlighted the lack of resources, the waste associated with duplication, the lack of collaboration, the failure to hand over information and other problems. The failure to provide patients with effective, efficient rehabilitation services has been the stimulus each time.
The solutions recommended have never started from a holistic analysis of the situation; the reviews have focused on a particular concern raised. The fundamental problem – the lack of a coherent and intellectually sound vision of how services must be organised – has never been recognised, let alone addressed. Instead, various short-term solutions are put forward, but no one is ever sufficiently concerned to check whether the solution works.
Solutions tried, all of which have often failed repeatedly, include:
- exhortations for services to work collaboratively. Commissioners usually say they want this but use a commissioning process that ensures collaboration does not pay from the providers’ perspective.
- exhortations for services to share information. Initially concerned with paper records and forms, now it involves electronic records, but sharing is no closer. Even now, in large hospitals, electronic systems cannot share information. It can only succeed once sufficient resources are devoted to IT accompanied by a severe, probably legally-enforced policy of complete interoperability of systems. Moreover, sharing must include Social Services, community services, general practice and all secondary care systems.
- development of pathways. Managers much love these. They do not reflect any reality, as was recently illustrated for people who have been through a Major Trauma Centre (here). This approach has failed repeatedly. Each person’s unique needs will generate a unique pathway for each patient.
- development of ‘directories of services’.This was the solution proposed when trauma services (in the UK) were set up. A local directory was proposed to record the purpose, contact details, criteria etc., of all available services. Directories are notable for their absence seven years later. Our local effort never managed to identify even the primary potential services, and the information changed so rapidly that the attempt was abandoned as impossible.
- use of the Rehabilitation Prescription. This was the second solution arising from the trauma service review. Some seven years later, it is still alive (just) and possibly being used more. Unfortunately, it has not (yet) improved service provision or collaboration; it is paper-based and is a good idea with little practical impact so far.
In the meantime, new services emerge and then die again regularly, most needing to be bigger to be sustainable; they are too small to accumulate the necessary experience and expertise.
One interpretation of the past is that it started from evidence concerning the outcome and then tried altering processes without considering structures.
In summary, the reactive development of tiny new services in response to acute perceived needs and a complete absence of any system-wide coherent vision of how rehabilitation services should be structured led to the current chaos. Though the unsatisfactory nature of services has been recognised, only ‘sticking-plaster’, short-term, and unrealistic solutions have been proposed. They, very predictably, have failed. We are about to fall again by setting up another isolated “specialist service” for Long Covid. I have recently discussed this issue again.
My hypothesis to explain the recurrent failure, and the basis for the remainder of this blog, is as follows. It starts from the analysis of health services by Donabedian, who suggested one should describe health services in three ways: its structures, processes, and outcomes. Traditionally, we identify poor outcomes and look to improve processes; we rarely change structures. I suggest that current rehabilitation services have no design, leading to poor processes and outcomes. I hypothesise that only by identifying and putting in place a structure for rehabilitation services will we be able to improve services. The system must be based on a clear purpose for rehabilitation services.
Structures are both physical and conceptual. The physical facilities are prominent: hospitals, the design of wards and departments; the equipment available; and the personnel available.
The conceptual structures are less obvious but have more influence. Most of us in the UK know of or remember working in services where the buildings were old, not designed for the work undertaken, and often needing repair, but, despite this, the services were first class. For example, I recall the Rivermead Rehabilitation Centre. Examples of structures include commissioner-provider split in finances; faculties, departments, and so on in universities; cardiology department, neurology department, and so on; directorates, human resources – the list is endless.
Processes cover most working practices, such as: how referrals are handled; admission to the hospital; having a course of radiotherapy; discharging patients and so on. These can be influenced dramatically by organisational structures that determine finances and physical systems that can facilitate or obstruct some processes.
Outcomes include individual patient outcomes but also include population and service clinical outcomes, financial outcomes and so on.
The usual analytic process starts with outcomes. Patients have results below that expected; the department’s income is less than its expenditure; this patient suffered harm that is a ‘never event’; and so on. The analysis then usually focuses on the processes to identify ways to improve them. Not infrequently, it is observed that there are ‘system-related’ factors. In my limited experience, these are usually acknowledged, but the action plan rarely includes any attempt to improve the system.
The system is a structure. When system faults are identified, people seem unwilling to explore how the design should be changed. They go for a ‘workaround’, altering the process to reduce the harmful effects of a poor structure. One understandable but not necessarily excusable reason for avoiding system change is that change in any part will require modification in other parts of the system.
However, when outcomes are consistently and persistently bad, processes are always inefficient and ineffective, and attempts to improve outcomes through changing strategies have consistently and repeatedly failed, one should consider revising the structure.
The situation in rehabilitation is, arguably, both bad and good. The wrong side is that there is no structure, just chaos, with no organising principle. The good side is that the absence of any existing system allows us to develop a design fit for purpose.
Evidence is key
The threat of long-Covid could be used to precipitate change. Unfortunately, it is much more exciting and politically satisfying to have a “Moon-shot project” to get every patient with Long Covid seen in a specialist service by August 2021 (or some such nonsense). We will have to fight to get the actual best solution taken seriously.
Most people, if asked, agree that the current shambles is a shambles. Nonetheless, they also believe (against all the evidence of the last 40-50 years) that the whole problem will be resolved with more goodwill, better protocols, and more collaborative work. There is no acknowledgement of the scale and severity of the dysfunction. There is an ‘institutional blindness’ to the difficulties faced, and those who draw attention to it are considered to be complaining troublemakers, exaggerating the problem.
As explained above, the traditional approach is to undertake an audit to identify the nature and extent of the problem. This includes engaging all stakeholders, consulting about options to overcome the issues, etc. This approach will not work, as demonstrated by 50 years of failure to resolve a significant and obvious problem. A more politically-savvy approach is needed.
Covid-19 offers a golden opportunity. It is considered likely that many thousands or tens of thousands of patients will need rehabilitation. This is causing concern, quite correctly. Rapid reorganisation of services has succeeded in the acute hospital sector, where the need has been much more urgent. There was no audit and no option appraisal. All interested parties worked together, evolving service design and delivery over hours, days and weeks, learning immediately from successes and failures, and changing services immediately.
The rehabilitation crisis is not so acute and may not involve ‘life and death’ problems, but it will potentially affect many more people, often for the remainder of their lives. It will also affect society economically and in many other ways. The crisis facing rehabilitation from Long Covid is just as challenging as acute Covid posed for acute services. It needs precisely the same can-do, will-do approach – with the advantage that we have a little more time, but still limited.
Nevertheless, achieving change with at least some evidence to support the need for change will be easier. No one will want to be seen to alter services radically without any evidence.
History shows that the collection of ‘good’ evidence, as dictated by service improvement methodology, has never achieved change in rehabilitation. There are two reasons. The minor one is that rehabilitation has had a low priority.
The primary reason is that no previous review has taken a holistic view of rehabilitation services. Each study has been concerned with some particular matter within rehabilitation. The working parties have never thoroughly analysed the reasons for the failures observed, not appreciating the absence of any population-wide coherent framework.
History also demonstrates that individual cases and anecdotes are potent change agents. Ask Marcus Rashford and Mr Johnson to comment on the effect of one person’s photograph of their food parcel.
To conclude, the scale of the problem is such that standard service quality improvement techniques will not work. This is demonstrated by the repeated failures to improve services. The change is radical and is needed now, not in five years. The stress caused by Covid 19 and the impending colossal increase in demand for rehabilitation for people with Long-Covid offers an opportunity to achieve a radical change. Radical change is best precipitated by good, politically powerful anecdotal evidence. But a clear goal or vision and a possible route from here to there are needed.
I have outlined my goal in other places, such as here and here. In summary, we need to aim for:
- a single, comprehensive rehabilitation service in any defined locality
- working across all boundaries
- hospital, care homes, home, workplace
- health, social services, education
- all medical, surgical, and mental health specialities
- birth to death
- working in parallel with other services
- acute care (medical, surgical etc.)
- mental health (including learning disability)
- palliative care
Also, in summary, this can be achieved by:
- taking all services that focus on disability
- wherever they work geographically
- whatever organisation they work within
- whatever speciality they work with
- and placing them in a single organisation
- with a single budgetary and management structure
- with teams with skills relating to
- specific conditions, disorders or problems
- particular interventions
- and people with specific expertise working where needed
- and people working where needed
- broad general skills
This goal is illustrated in these two figures here and here.
The evidence needed
I pointed out above that previous reviews have started from an observation that outcomes are not as good as wished and have then tried altering the processes; they have yet to consider the role that the structures may be playing.
I hypothesise that the primary cause of the observed poor outcomes and the inefficient and ineffective processes lies in the chaotic, disorganised nature of the structure. Further, the total absence of any recognition that a unifying structure is needed has led to the recurrent failure of attempts to improve rehabilitation.
Therefore evidence is needed to support two hypotheses:
* the current arrangement is chaotic and incoherent; and
* this arrangement leads to waste, inefficiency, ineffectiveness and possibly, harm.
Evidence on the current chaos
I have illustrated, in a drawing, a generic picture of the current situation. However, an illustrative image needs to be more persuasive; an accurate picture is compelling. So we need a series of examples, for different parts of the country, of many isolated services delivering rehabilitation to a local population. These can be used to convince each local health and social care system (i.e. NHS and Social Services) of the need to change organisation. If enough localities agree, national support might occur.
To assist anyone interested in improving their local services, I have produced an illustrative form (here) for collecting data about existing services. It will need further refinement and adjusting to local circumstances.
The information to fill in this form could be generated over a couple of hours (on Zoom or, possibly, at work) by a group covering hospital, community, and Social Services services. Help from others may be needed to identify and get details on niche services. Those attending might be surprised to discover what they did not know.
Evidence on current processes
The second set of evidence concerns processes and needs to provide examples of unarguably inefficient practices or low effectiveness. It can be accompanied by text or comments that this example is one of many seen or experienced, but the example must be based on a real case.
This information needs to be generated by people working in rehabilitation services (in the broadest sense, not just those labelled as rehabilitation). Each example will be unique and may illustrate different poor processes or varying degrees of severity.
The Covid crisis has provided a unique opportunity. Many individuals are returning to work clinically to support the NHS services. They can see everything afresh. They have experience of other work. They are less threatened by the possibility of criticism by the organisation. The likelihood of threat is over-rated because most managers are well aware of the problem but cannot or feel unable to take their concerns forward; they might welcome evidence.
A cadre of five to ten individuals working in different services or locations in a locality, each documenting two cases, would generate sufficient evidence to make the case. This cannot be a quantitative study. I have also provided some additional documentary support here.
In summary, in any locality interested in improving services, a group of 5-10 people from different services and locations must compile a list of all local services that deliver any aspect of rehabilitation as their primary purpose, whenever their name. At the same time, 5-10 people who are working in different services and locations should each document, in reasonable detail, 1-3 specific examples of processes that are in some way wasteful, duplicating work, or do not achieve their goal, or in some other way are wrong (my imagination runs dry) or even harms a patient. The following steps are discussed below.
The approach I am suggesting is centred around localities, meaning geographic areas such as the area covered by a Clinical Commissioning Group. It requires about ten people (at most) who are working in an area to collect some data, turn it into a document, and then to present it to the chief executives of the commissioning organisation, the local NHS Trusts, the chief executive(s) of the relevant Social Services organisation(s), and any other major organisations involved.
The box below sets out a suggested plan.
Six suggested actions
- Between three and five people need to identify and list all the separate rehabilitation services in the locality that see patients, funded by the NHS or Social Services.
- Between three and six clinical staff, preferably working in different services, need to document in some detail actual experiences in patient management.
- The people involved, and one or two others with experience in writing documents for discussion, construct a short (two page) document summarising the findings and highlighting it importance.
- The same group spend some time discussing a possible complete re-organisation into a single rehabilitation service either in steps, or as one event, and write a 2-3 page documents setting out the two options.
- A full document to include the summary (3) and suggested ways forward (4), with the data (1 and 2) as an appendix is produced.
- A covering letter to all relevant chief executives is written, and the letter and documents are sent.
It would be best if at least some of the clinical instances came from people who have recently started in local services, either because of Covid-19 or a a natural move from elsewhere. This gives them the advantage of seeing what may just be accepted as normal. It also adds credibility if they are relatively independent, for example usually working outside the service concerned.
It will also help if at least some of the people have sufficient experience not to be dismissed as ‘just not understanding’.
Involving, as an advisor or helper, someone used to writing and presenting to senior management will help ensure that the document is attended to.
The request to the chief executives is that they:
- acknowledge that the current lack of organisation requires action
- agree to start a process of rapid change towards the goal of a coherently structured single rehabilitation organisation spanning all settings and patients
- will involve the clinicians who produced the data in the process
I obviously do not know whether this will help or achieve its goal. However, I do know that
(a) the current situation is about as bad as it can be and
(b) all previous attempts to alter it, using traditional approaches, have failed.
I am prepared for anyone who is considering this approach to contact me here.