This is a true incident.

A friend of mine is helping out as a physiotherapist during this pandemic. Recently, in order to get a patient who had just been discharged from the hospital seen, she had to spend nearly three hours inputing three different sets of referral data, all covering the same basic information, into three different systems with different referral criteria, belonging to three different organisations. The patient’s need was for a short visit of probably no more than 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, problems that are almost certainly occurring in every locality in the UK:

• many small services, each with a different name, with slightly different acceptance and discharge criteria, and each with it 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, set out differently using different measures but all cover much the same underlying information.
• the scoring format varied randomly: some measures scoring 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 need are seen while others with high need 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 could be certain that a referral would 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, exists everywhere, and 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 change rehabilitation matters for the better. 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 as they arise, each new service being 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, there have been innumerable reports on rehabilitation services highlighting the lack of resources, the waste associated with duplication, the lack of collaboration, the failure to hand-over information and other problems. Each time, the failure to provide patients with effective, efficient rehabilitation services has been the stimulus.

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 need to 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 failed often 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 perspective of providers.
  
• exhortations for services to share of information. Initially concerned with paper records and forms, now it concerns electronic records, but sharing is no closer. Even now, within large hospitals, there are electronic systems that cannot share information. It cannot succeed until sufficient resources are devoted to IT accompanied by a serious, probably legally-enforced policy of complete inter-operability of systems. Moreover, sharing must include all services: Social Services, community services, general practice and all secondary care systems.
  
• development of pathways. These are much loved by managers. 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.
  
• 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 by their absence seven years later. Our local effort never managed to identify even the main potential services, and the information changed so rapidly that the attempt was abandoned as impossible.
  
• use of the Rehabilitation Prescription. This was a second solution arising from the trauma service review. Some seven years later it is still alive (just), and possibly being used more (download here). It does not improve service provision or collaboration; it is paper-based; and so far is a good idea with little impact.

In the meantime, new services emerge, and then die again, on a regular basis, most being too small to be sustainable and too small to accumulate the experience and expertise needed.

One interpretation of the past is that it has started from evidence concerning outcome, and then tried altering processes, with no consideration of structures.

In summary, the reactive development of small new services in response to acute perceived needs, coupled with a complete absence of any system-wide coherent vision of how rehabilitation services should be structured had 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 fail again by setting up yet another isolated “specialist service” for Long Covid.

My hypothesis

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, its processes, and its outcomes. Traditionally we identify poor outcomes, and look to improve processes; rarely we change structures. I suggest rehabilitation services current have no structure, which leads to poor processes and very poor outcomes. My hypothesis is that only by identifying and putting in place a structure for rehabilitation services will be be able to improve services. The structure must be based on a clear purpose for rehabilitation services,.

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Structures are both physical and conceptual. The physical structures are obvious: hospitals, the design of wards and departments; the equipment available; and the personnel available.

The conceptual structures are less obvious but probably 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.

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Processes cover most working practices such as: how referrals are handled; admission to hospital; having a course of radiotherapy; discharging patients and so on. These can be influenced greatly by organisational structures which determine finances and by physical structures which can facilitate or obstruct some processes.

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Outcomes include, obviously, individual patient outcomes but also include population and service clinical outcomes, financial outcomes and so on.

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The usual analytic process starts with outcomes. Patients have outcomes 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 focusses on the processes, to identify ways that they can be improved. Not infrequently, it is observed that there are ‘system-related’ factors. In my limited experience, these are usually acknowledged, but the action plan rarely if ever includes any attempt to improve the system.

The system is a structure. When system faults are identified, people seem unwilling to explore how the structure should be changed. They go for a ‘work around’, altering the process to reduce the harmful effects associated with a poor structure. One understandable, but not necessarily excusable reason for avoiding system change is that change in any one part will require change in other parts of the whole system.

However, when outcomes are consistently and persistently bad, when processes are consistently inefficient and ineffective, and when attempts to improve outcomes through changing process have consistently and repeatedly failed then, just maybe, one should consider revising the structure.

The situation in rehabilitation is, arguably, both bad and good. The bad side is there is not structure, just chaos, with no organising principle. The good side is that the absence of any existing structure gives us a chance to develop a structure fit for purpose.

EVIDENCE IS KEY
we must collect evidence

The threat of long-Covid could be used to precipitate change. Unfortunately, it is so much more exciting, and politically satisfying, to have a “Mars-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, with a bit more good will and better protocols, and more collaborative working, the whole problem will be resolved. There is no acknowledgement of 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 problems and so on. This approach simply will not work, as demonstrated by 50 years of failure to resolve a problem that is large and obvious. 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. In the acute hospital sector, where the need has been much more urgent, rapid reorganisation of services has succeeded. 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 crisis of rehabilitation is not so obviously acute, and may not involve ‘life and death’ problems, but it is potentially going to affect many more people, often for the remainder of their life. It will also affect society, economically and in many other ways. The crisis facing rehabilitation from Long Covid is just as much of a challenge as acute Covid posed for acute services. It needs exactly the same can-do, will-do approach – with the advantage that we have a little more time, but still limited.

Nevertheless, without at least some evidence to support the need for change, it will be difficult to achieve change. No-one will want to be seen to alter services radically without any evidence.

History shows that collection of ‘good’ evidence, as dictated by service improvement methodology, has never achieved change in rehabilitation. There are probably two reasons. The minor one is that rehabilitation has had a low priority.

The major reason is that no previous review has taken a holistic view of rehabilitation services. Each review has concerned some particular matter within rehabilitation. The working parties have never fully analysed the reasons for the failures observed, not appreciating the absence of any population-wide coherent framework.

History also demonstrates that individual cases, anecdotes, are very powerful agents for change. Ask Marcus Rashford and Mr Johnson to comment on the effect on 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 needed is radical, and it is needed now and not in five years’ time. The stress caused by Covid 19 and the impending huge 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 is needed, and a possible route from here to there.

The goal.

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, work place
  • 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
    • training
    • broad general skills

This goal is illustrated in these two figures here and here.

The Evidence:
What? How?

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 not considered the role that the structures may be playing. My hypothesis is that the primary cause both of the poor observed outcomes and the inefficient and ineffective processes lies in the chaotic, disorganised nature of the structure. Further, it is actually the total absence of any recognition that a unifying structure is needed that 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.

Current structure

I have illustrated, in a drawing, a generic picture of the current situation. However, an illustrative picture is not persuasive; a real picture is persuasive. So we need a series of examples, for different parts of the country, of large number of 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 own 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 of people covering hospital services, community services, and Social Services services. Help from others may be needed to identify and/or get details on niche services. Those attending might be surprised to discover what they did not know.

Current process

The second set of evidence concerns processes, and needs to provide actual examples of practice that is unarguably inefficient and/or of 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 types of poor process, or different degrees of severity.

The Covid crisis has provided a unique opportunity. There are many individuals who 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 (probably over-rated; I actually think most managers are well aware of the problem but cannot or feel unable to take their concerns forward).

I think 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 need to compile a list of all local services that deliver any aspect of rehabilitation as their main purpose, whenever their name. At the same time 5-10 people who are working in different services and/or locations should each document, in reasonable detail, 1-3 specific examples of processes that are in some way wasteful, or duplicating work, or do not achieve their goal, or in some other way are obviously wrong (my imagination runs dry) or even harms a patient. The next 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 table below sets out a suggested plan.

Suggested actions.

1. 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.

2. Between three and six clinical staff, preferably working in different services, need to document in some detail actual experiences in patient management.

3. 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.

4. 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.

5. A full document to include the summary (3) and suggested ways forward (4), with the data (1 and 2) as an appendix is produced.

6. A covering letter to all relevant chief executives is written, and the letter and documents are sent.

Some suggested practical aspects.
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.