A general theory of rehabilitation: Rehabilitation catalyses and assists adaptation to illness.

BACKGROUND: There is no general theory of rehabilitation, only definitions and descriptions, with the biopsychosocial model of illness as a structure. OBJECTIVE: To develop a general theory of rehabilitation that explains how healthcare rehabilitation changes outcomes and to evaluate its validity. NEED: A general rehabilitation theory would help research, improve services, increase understanding, modify resource allocation and explain some anomalies, such as how rehabilitation helps when no natural recovery occurs. BUILDING BLOCKS: People adapt to change throughout their lives. Illness is a change, and people adapt to their illness. Adaptation's purpose is to maintain an equilibrium in a person's life. The balanced components are related to Maslow's five needs: basic, safety, affiliation, status and self-fulfilment. The general theory of behaviour suggests that a person's behaviours change to maintain balance, regulated by a central homeostatic mechanism. THE THEORY: Rehabilitation aids adaptation to changes associated with illness through accurate diagnosis and formulation, catalysing adaptation, optimising the environment and assisting the person in making necessary changes by safely practising activities and teaching self-management. IMPLICATIONS: The theory makes the person the central active agent, emphasises the importance of the environment in facilitating adaptation, explains why all conditions may benefit, including progressive and static conditions, suggests that health can be equated to someone maintaining their equilibrium and explains why a small dose may be very effective. CONCLUSION: The general theory of rehabilitation emphasises the catalytic effects of rehabilitation in facilitating and guiding adaptation and suggests areas for research and improvement.

Does a service provide safe, effective rehabilitation? An evaluation method for providers and purchasers.

BACKGROUND: Independent organisations monitor the safety and governance of clinical services but do not assess specialist expertise. Peer review can assess service capability but is resource-intense and infeasible. THE PROBLEM: How can you ensure a service provides safe, effective rehabilitation? You ask them to provide data as evidence that they can be trusted to do so. This article suggests a structured approach to providing data on entrustability. AN ANALOGY: How is the specialist skill of a doctor in training established? They provide evidence about high-level outcomes (capabilities in practice) related to their speciality. An educational supervisor assesses whether they can be trusted to perform safely and effectively without supervision. The capabilities in practice define their expertise. THE SOLUTION: A service can use seven high-level rehabilitation service capabilities, based on the clinical capabilities associated with medical training, with observable indicative descriptors, to collect evidence of their rehabilitation approach. A service must also select four to eight high-level competencies indicating they can rehabilitate their patient caseload safely and effectively. These competencies also need indicative descriptors as evidence of their performance in the service; 11 examples are given. CAPABILITIES.: The seven rehabilitation capabilities are: using the biopsychosocial model, having a multi-professional team, making a person-centred rehabilitation plan, working collaboratively across all boundaries, tailoring treatments to the patient's needs, ensuring staff have specific competencies required for their caseload, and acknowledging and managing uncertainty and complexity. CONCLUSION.: Service providers could use this structured approach to develop and provide users with evidence of their rehabilitation expertise.

Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis.

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a disabling long-term condition of unknown cause. The National Institute for Health and Care Excellence (NICE) published a guideline in 2021 that highlighted the seriousness of the condition, but also recommended that graded exercise therapy (GET) should not be used and cognitive-behavioural therapy should only be used to manage symptoms and reduce distress, not to aid recovery. This U-turn in recommendations from the previous 2007 guideline is controversial.We suggest that the controversy stems from anomalies in both processing and interpretation of the evidence by the NICE committee. The committee: (1) created a new definition of CFS/ME, which 'downgraded' the certainty of trial evidence; (2) omitted data from standard trial end points used to assess efficacy; (3) discounted trial data when assessing treatment harm in favour of lower quality surveys and qualitative studies; (4) minimised the importance of fatigue as an outcome; (5) did not use accepted practices to synthesise trial evidence adequately using GRADE (Grading of Recommendations, Assessment, Development and Evaluations trial evidence); (6) interpreted GET as mandating fixed increments of change when trials defined it as collaborative, negotiated and symptom dependent; (7) deviated from NICE recommendations of rehabilitation for related conditions, such as chronic primary pain and (8) recommended an energy management approach in the absence of supportive research evidence.We conclude that the dissonance between this and the previous guideline was the result of deviating from usual scientific standards of the NICE process. The consequences of this are that patients may be denied helpful treatments and therefore risk persistent ill health and disability.

Rehabilitation potential: A critical review of its meaning and validity.

BACKGROUND: The concept of rehabilitation potential emerged in 1950 as a way to select people for rehabilitation; it is also used to limit access to services. OBJECTIVE: To elucidate the meaning(s) of rehabilitation potential and whether it is valid in selecting patients for rehabilitation, whether as an inpatient, outpatient, or in the community. METHOD: A non-systematic review of how it has been used, a structured discussion of its potential meanings, an exploration of the evidence in support of selecting people who might benefit from rehabilitation, and a discussion of the concept of rehabilitation potential. FINDINGS: It has been used in several ways with two primary meanings: predicting a person's function at some later time; predicting who will gain additional improvement in outcome from being seen by a rehabilitation service. The concept is flawed because rehabilitation is a process, not a specific action; the effects anticipated after rehabilitation are not restricted to functional improvement; patient characteristics do not determine many essential outcomes. There is no evidence to guide the selection of patients for an assessment and formulation by a rehabilitation team. CONCLUSION: Rehabilitation potential, defined as data that gives the likelihood of additional benefit from receiving input from an expert rehabilitation service, is an illusion lacking any coherent definition, description, or evidence. Its use to limit access to rehabilitation is invalid. The solution is to offer all people not recently seen by an expert multi-professional rehabilitation team a full rehabilitation assessment and formulation, which will reveal what rehabilitation might achieve.

Moving on. A farewell from the last Editor-in-Chief who says: 'Rehabilitation is a way of thinking, not a way of doing'.

What is rehabilitation? From 1994 to 2021, while I was privileged to be Editor of Clinical Rehabilitation, I explored this in editorials. I also encouraged and selected submissions that considered, in one way or another, the central features of rehabilitation. Why? Because when I started in rehabilitation, the general attitude among doctors and other healthcare professionals was that rehabilitation was pleasant but with no evidence of effectiveness. Further, they did not think a doctor had a role to play and did not think there was anything special for rehabilitation experts to know or have skills in. In this editorial, I discuss how, as editor, I used my position to support and encourage the publication of articles that produced evidence, considered the conceptual and scientific basis of rehabilitation, and ultimately answered the above question. I illustrate this with a few specific papers published in Clinical Rehabilitation. After 30 years, I have concluded that the essential feature characterising rehabilitation is its way of thinking about the patient's problems and how to solve them. Rehabilitation is holistic, person-centred, and concerned about social integration rather than disease or disability. Moreover, there is a mass of evidence showing it benefits patients.

Prolonged disorders of consciousness: A response to a "critical evaluation of the new UK guidelines."

BACKGROUND: In 2020, The London Royal College of Physicians published "Prolonged disorders of consciousness following sudden-onset brain injury: national clinical guidelines". In 2021, in the journal Brain, Scolding et al. published "a critical evaluation of the new UK guidelines". This evaluation focussed on one of the 73 recommendations in the National Clinical Guidelines. They also alleged that the guidelines were unethical. CRITICISMS: They criticised our recommendation not to use activation protocols using fMRI, electroencephalography, or Positron Emission Tomography. They claim these tests can (a) detect 'covert consciousness', (b) add predictive value and (c) should be part of routine clinical care. They also suggest that our guideline was driven by cost considerations, leading to clinicians deciding to withdraw treatment at 72 h. EVIDENCE: Our detailed review of the evidence confirms the American Academy of Neurology Practise Guideline (2018) and the European Academy of Neurology Guideline (2020), which agree that insufficient evidence supports their approach. ETHICS: The ethical objections are based on unwarranted assumptions. Our guideline does not make any recommendations about management until at least four weeks have passed. We explicitly recommend that expert assessors undertake ongoing surveillance and monitoring; we do not suggest that patients be abandoned. Our recommendation will increase the cost We had ethicists in the working party. CONCLUSION: We conclude the "critical evaluation" fails to provide evidence for their criticism and that the ethical objections arise from incorrect assumptions and unsupported interpretations of evidence and our guideline. The 2020 UK national guidelines remain valid.

Defining rehabilitation: An exploration of why it is attempted, and why it will always fail.

THE PROBLEM: Over 187 definitions of rehabilitation exist, none widely agreed or used. Why? THE WORD: Words represent a core concept, with a penumbra of associated meanings. A word means what is agreed among those who use it. The precise meaning will vary between different groups. Words evolve, the meaning changing with use. Other words may capture some of the concepts or meanings. A DEFINITION: A definition is used to control the unstable, nebulous meaning of a word. It delineates, creating a boundary. A non-binary spectrum of meaning is transformed into binary categories: rehabilitation, or not rehabilitation. In clinical terms, it is a diagnostic test to identify rehabilitation. There are many different reasons for categorising something as rehabilitation. Each will need its own definition. CATEGORISATION: The ability of a definition to distinguish cases accurately must be validated by comparison with 'the truth'. If there were an external 'true' test to identify rehabilitation, a definition would not be needed. As with most concepts, the only truth is agreement by people familiar with the required distinction. Any definition will generate misclassification. People familiar with the required distinction will also need to resolve mis-categorisation. DESCRIPTION: An alternative is a 'descriptive definition', listing features over several domains which must be present. This fails logically. Rehabilitation is an emergent concept, more than the sum of its parts. CONCLUSION: A useful definition cannot be achieved because no definition will cover all needs, and a specific definition for a purpose will misclassify some cases.

The future of rehabilitation in the United Kingdom National Health Service: Using the COVID-19 crisis to promote change, increasing efficiency and effectiveness.

THE PROBLEM: Rehabilitation services in the UK are inadequate, with insufficient capacity or flexibility to meet the needs of patients after Covid-19. HISTORY: Rehabilitation developed in a piecemeal way, focused on specific problems: spinal cord injury, burns, polio, stroke, back pain, equipment and adaptations etc. Rehabilitation is also provided using other names (e.g. intermediate care). Patients with complex needs do not fit easily within this system. SYSTEM FAILURE: After Covid-19, patients have problems that cross existing condition-specific and/or treatment-specific services. Covid-19 has exposed the lack of any coherent organisational principle underlying development or commissioning of rehabilitation services. Consequently, in order to have their needs met, patients either have to engage with two or more separate services or they receive good management for some problems and sub-optimal management for other problems. THE GOALS: The multitude of small specific services need to coalesce into an integrated service able to meet all the needs of any patient referred. Second, rehabilitation needs to be fully integrated into all healthcare services. A SOLUTION: The purpose of healthcare is to 'improve our health and well-being . . . to stay as well as we can to the end of our lives'. (NHS constitution) All healthcare services need to consider patients holistically, giving equal attention to disease, disability, and distress. Rehabilitation, acute care, mental health and palliative care services need to work in parallel to achieve this purpose. Healthcare providers, supported by commissioners and rehabilitation experts, could achieve structural and organisational change, meeting the needs of patients.

Dual-task walking and automaticity after Stroke: Insights from a secondary analysis and imaging sub-study of a randomised controlled trial.

OBJECTIVE: To test the extent to which initial walking speed influences dual-task performance after walking intervention, hypothesising that slow walking speed affects automatic gait control, limiting executive resource availability. DESIGN: A secondary analysis of a trial of dual-task (DT) and single-task (ST) walking interventions comparing those with good (walking speed ⩾0.8 m s-1, n = 21) and limited (walking speed <0.79 m s-1, n = 24) capacity at baseline. SETTING: Community. SUBJECTS: Adults six-months post stroke with walking impairment. INTERVENTIONS: Twenty sessions of 30 minutes treadmill walking over 10 weeks with (DT) or without (ST) cognitive distraction. Good and limited groups were formed regardless of intervention received. MAIN MEASURES: A two-minute walk with (DT) and without (ST) a cognitive distraction assessed walking. fNIRS measured prefrontal cortex activation during treadmill walking with (DT) and without (ST) Stroop and planning tasks and an fMRI sub-study used ankle-dorsiflexion to simulate walking. RESULTS: ST walking improved in both groups (∆baseline: Good = 8.9 ± 13.4 m, limited = 5.3±8.9 m, Group × time = P < 0.151) but only the good walkers improved DT walking (∆baseline: Good = 10.4 ± 13.9 m, limited = 1.3 ± 7.7 m, Group × time = P < 0.025). fNIRS indicated increased ispilesional prefrontal cortex activation during DT walking following intervention (P = 0.021). fMRI revealed greater DT cost activation for limited walkers, and increased resting state connectivity of contralesional M1 with cortical areas associated with conscious gait control at baseline. After the intervention, resting state connectivity between ipsilesional M1 and bilateral superior parietal lobe, involved in integrating sensory and motor signals, increased in the good walkers compared with limited walkers. CONCLUSION: In individual who walk slowly it may be difficult to improve dual-task walking ability.Registration: ISRCTN50586966.

What attributes should a specialist in rehabilitation have? Seven suggested specialist Capabilities in Practice.

PROBLEM: Many services and professionals refer to themselves as providing rehabilitation. There is no agreed method for determining whether someone has specific expertise in rehabilitation. This makes it difficult for patients and payers to know whether professionals who claim to provide rehabilitation are specifically expert in rehabilitation. CONTEXT: Doctors have a medical speciality of rehabilitation. The medical training curriculum gives attributes that differentiate a rehabilitation specialist from other doctors. Until recently, these attributes were competencies to undertake activities associated with specialization. Apart from nurses, who have at least one, unofficial, curriculum identifying specific competencies, other professions involved in rehabilitation do not have any way to show specialization in rehabilitation. CAPABILITIES IN PRACTICE: The U.K. General Medical Council accredits specialist medical training. It has moved from specifying multiple practical clinical competencies to specifying fewer high-level 'Capabilities in Practice'. Six are generic to all doctors, eight identify the trained doctor as having specialist rehabilitation skills. This article adopts this approach to put forward seven generic and seven specialist capabilities to identify any professional as having special expertise in rehabilitation. The seven specialist capabilities centre on the biopsychosocial model of illness and multidisciplinary teamwork. Four of them could be used to define a specialist rehabilitation team. CONCLUSION: Seven capabilities identifying specialization in rehabilitation are put forward for discussion. They could form the basis of a formal recognition that any professional has additional expertise in rehabilitation. A validating authority would be needed to provide oversight and governance.

What is rehabilitation? An empirical investigation leading to an evidence-based description.

BACKGROUND: There is no agreement about or understanding of what rehabilitation is; those who pay for it, those who provide it, and those who receive it all have different interpretations. Furthermore, within each group, there will be a variety of opinions. Definitions based on authority or on theory also vary and do not give a clear description of what someone buying, providing, or receiving rehabilitation can actually expect. METHOD: This editorial extracts information from systematic reviews that find rehabilitation to be effective, to discover the key features and to develop an empirical definition. FINDINGS: The evidence shows that rehabilitation may benefit any person with a long-lasting disability, arising from any cause, may do so at any stage of the illness, at any age, and may be delivered in any setting. Effective rehabilitation depends on an expert multidisciplinary team, working within the biopsychosocial model of illness and working collaboratively towards agreed goals. The effective general interventions include exercise, practice of tasks, education of and self-management by the patient, and psychosocial support. In addition, a huge range of other interventions may be needed, making rehabilitation an extremely complex process; specific actions must be tailored to the needs, goals, and wishes of the individual patient, but the consequences of any action are unpredictable and may not even be those anticipated. CONCLUSION: Effective rehabilitation is a person-centred process, with treatment tailored to the individual patient's needs and, importantly, personalized monitoring of changes associated with intervention, with further changes in goals and actions if needed.

Immunotherapy to reduce frequency of urinary tract infections in people with neurogenic bladder dysfunction; a pilot randomised, placebo-controlled trial.

OBJECTIVE: To establish the feasibility of a randomized, placebo-controlled trial to investigate the effect of a specific immunotherapy bacterial lysate OM-89 (Uro-Vaxom®) in reducing the frequency of urinary tract infections in people with neurogenic bladder dysfunction. DESIGN: A parallel-group, double-blind, randomized, placebo-controlled trial. SETTING: Patients at home, recruited through out-patient contact, social media and patient support groups. SUBJECTS: People with a spinal cord injury, multiple sclerosis, transverse myelitis or cauda equina syndrome who had suffered three or more clinically diagnosed urinary tract infections treated with antibiotics over the preceding 12 months. INTERVENTIONS: All participants took one capsule of oral OM-89 immunotherapy (6 mg) or matching Placebo (randomisation ratio 1:1), once daily in the morning for 3 months. MAIN MEASURES: The primary outcome was occurrence of a symptomatic urinary tract infection treated with an antibiotic, assessed at 3 and 6 months. Feasibility measures included recruitment, retention and practical difficulties. RESULTS: Of 115 patients screened, 49 were recruited, one withdrew before randomization, and 23 were allocated to the control group receiving matching placebo. Six participants, all in the control group, discontinued the intervention; all participants provided full data at both follow-up times. Over 6 months, 18/25 active group patients had 55 infections, and 18/23 control group patients had 47 infections. Most research and clinical procedures were practical, and acceptable to participants. CONCLUSION: It is feasible to undertake a larger trial. We recommend broader inclusion criteria to increase eligibility and generalizability.

The effects of small-needle-knife therapy on pain and mobility from knee osteoarthritis: a pilot randomized-controlled study.

OBJECTIVE: To investigate the effect of small needle-knife therapy in people with painful knee osteoarthritis. DESIGN: Pilot randomised, controlled trial. SETTING: Rehabilitation hospital. SUBJECTS: In-patients with osteo-arthritis of the knee. INTERVENTIONS: Either 1 to 3 small needle-knife treatments over seven days or oral Celecoxib. All patients stayed in hospital three weeks, receiving the same mobility-focused rehabilitation. MEASURES: Oxford Knee Score (OKS), gait speed and kinematics were recorded at baseline, at three weeks (discharge) and at three-months (OKS only). Withdrawal from the study, and adverse events associated with the small needle knife therapy were recorded. RESULTS: 83 patients were randomized: 44 into the control group, of whom 10 were lost by three weeks and 12 at 3 months; 39 into the experimental group of whom eight were lost at three weeks and three months. The mean (SE) OKS scores at baseline were Control 35.86 (1.05), Exp 38.38 (0.99); at three weeks 26.64 (0.97) and 21.94 (1.23); and at three months 25.83 (0.91) and 20.48 (1.14) The mean (SE) gait speed at baseline was 1.07 (0.03) m/sec (Control) and 0.98 (0.03), and at three weeks was 1.14 (0.03) and 1.12 (0.03) (P < 0.05). Linear mixed model statistical analysis showed that the improvements in the experimental group were statistically significant for total OKS score at discharge and three months. CONCLUSIONS: Small needle-knife therapy added to standard therapy for patients with knee osteoarthritis, was acceptable, safe and reduced pain and improved global function on the Oxford Knee Score. Further research is warranted.

A randomised double-blind placebo-controlled feasibility trial of flavonoid-rich cocoa for fatigue in people with relapsing and remitting multiple sclerosis.

The impact of flavonoids on fatigue has not been investigated in relapsing and remitting multiple sclerosis (RRMS). OBJECTIVE: To determine the feasibility and estimate the potential effect of flavonoid-rich cocoa on fatigue and fatigability in RRMS. METHODS: A randomised double-blind placebo-controlled feasibility study in people recently diagnosed with RRMS and fatigue, throughout the Thames Valley, UK (ISRCTN69897291). During a 6-week intervention participants consumed a high or low flavonoid cocoa beverage daily. Fatigue and fatigability were measured at three visits (weeks 0, 3 and 6). Feasibility and fidelity were assessed through recruitment and retention, adherence and a process evaluation. RESULTS: 40 people with multiple sclerosis (10 men, 30 women, age 44±10 years) were randomised and allocated to high (n=19) or low (n=21) flavonoid groups and included in analysis. Missing data were <20% and adherence to intervention of allocated individuals was >75%. There was a small effect on fatigue (Neuro-QoL: effect size (ES) 0.04, 95% CI -0.40 to 0.48) and a moderate effect on fatigability (6 min walk test: ES 0.45, 95% CI -0.18 to 1.07). There were seven adverse events (four control, three intervention), only one of which was possibly related and it was resolved. CONCLUSION: A flavonoid beverage demonstrates the potential to improve fatigue and fatigability in RRMS.

Determining whether someone has mental capacity to make a decision: clinical guidance based on a review of the evidence.

Valid consent to healthcare treatments depends upon a person having the capacity to give it. The Mental Health Act not only requires a presumption of capacity but also expects clinicians to take reasonable steps to establish whether the patient lacks capacity. The facts are that (1) lack of capacity is common among hospital inpatients and people in the community needing care, but is often not recognized. (2) Capacity must not be judged on the basis of the decision made: an unwise decision is not evidence of a lack of capacity, and a decision expected by the clinician is not evidence of capacity. Capacity is decision-specific and must be considered critically without preconceptions. There is no valid other test. (3) Clinically people will fall into four groups: (a) obviously lack capacity and will not recover it, (b) obviously lack capacity but will recover soon, (c) obviously have capacity, (d) capacity is in doubt and major healthcare decision needed. Only the last group need more detailed attention. (4) Capacity is (a) relative to the complexity of the information; (b) on a spectrum, not categorical; (c) decided using clinical judgement; and (d) subject to disagreement among assessors. The recommendations are as follows: (1) capacity should always be considered within the decision-making process, and the outcome should be documented, with sufficient information to understand the opinion given. (2) Detailed assessment should be reserved for situations when (a) a major decision is needed and (b) there is time to assess and discuss the assessment.

Making healthcare decisions in a person's best interests when they lack capacity: clinical guidance based on a review of evidence.

OBJECTIVE: To clarify the concept of best interests, setting out how they should be ascertained and used to make healthcare decisions for patients who lack the mental capacity to make decisions. CONTEXT: The legal framework is the Mental Capacity Act (MCA) 2005, which applies to England and Wales. THEORY: Unless there is a valid and applicable Advance Decision, an appointed decision-maker needs to decide for those without capacity. This may be someone appointed by the patient through a Lasting Power of Attorney, or a Deputy appointed by the court. Otherwise the decision-maker is usually the responsible clinician. Different approaches exist to surrogate decision-making cross-nationally. In England and Wales, decision-making is governed by the MCA 2005, which uses a person-centred, flexible best interests (substituted interests) approach. OBSERVATIONS: The MCA is often not followed in healthcare settings, despite widespread mandatory training. The possible reasons include its focus on single decisions, when multiple decisions are made daily, the potential time involved and lack of clarity about who is the responsible decision-maker. SOLUTION: One solution is to decide a strategic policy to cover more significant (usually health-related) decisions and to separate these from day-to-day relational decisions covering care and activities. Once persistent lack of capacity is confirmed, an early meeting should be arranged with family and friends, to start a process of sharing information about the patient's medical condition and their values, wishes, feelings and beliefs with a view to making timely treatment decisions in the patient's best interests.

Malingering and factitious disorder.

Although exaggeration or amplification of symptoms is common in all illness, deliberate deception is rare. In settings associated with litigation/disability evaluation, the rate of malingering may be as high as 30%, but its frequency in clinical practice is not known. We describe the main characteristics of deliberate deception (factitious disorders and malingering) and ways that neurologists might detect symptom exaggeration. The key to establishing that the extent or severity of reported symptoms does not truly represent their severity is to elicit inconsistencies in different domains, but it is not possible to determine whether the reports are intentionally inaccurate. Neurological disorders where difficulty in determining the degree of willed exaggeration is most likely include functional weakness and movement disorders, post-concussional syndrome (or mild traumatic brain injury), psychogenic non-epileptic attacks and complex regional pain syndrome type 1 (especially when there is an associated functional movement disorder). Symptom amplification or even fabrication are more likely if the patient might gain benefit of some sort, not necessarily financial. Techniques to detect deception in medicolegal settings include covert surveillance and review of social media accounts. We also briefly describe specialised psychological tests designed to elicit effort from the patient.

Using best interests meetings for people in a prolonged disorder of consciousness to improve clinical and ethical management.

Current management of people with prolonged disorders of consciousness is failing patients, families and society. The causes include a general lack of concern, knowledge and expertise; a legal and professional framework which impedes timely and appropriate decision-making and/or enactment of the decision; and the exclusive focus on the patient, with no legitimate means to consider the broader consequences of healthcare decisions. This article argues that a clinical pathway based on the principles of (a) the English Mental Capacity Act 2005 and (b) using time-limited treatment trials could greatly improve patient management and reduce stress on families. There needs to be early and continuing use of formal best interests meetings, starting between 7 and 21 days after onset of unconsciousness (from any cause, including progressive disorders). The treatment options need to evolve as the clinical state and prognosis becomes more certain. A formal discussion of treatment withdrawal should occur when the upper bound of predicted recovery falls below a level the patient would have considered acceptable, and it should always be discussed when the condition is considered permanent. Any decision to stop treatment should be contingent on a formal second opinion from an independent expert who should review the clinical situation and expected prognosis, but not the best interests decision. The article also asks how, if at all, the adverse effects on the family and the resource implications of long-term care of people left in a prolonged state of unconsciousness should be incorporated in the process.

How many patients in a prolonged disorder of consciousness might need a best interests meeting about starting or continuing gastrostomy feeding?

OBJECTIVE:: To estimate the number of people in a prolonged disorder of consciousness (PDOC) who may need a formal best interests decision-making process to consider starting and/or continuing life-sustaining treatment each year in the population of a developed country. METHOD:: Identification of studies on people with a PDOC giving information about incidence, and/or prevalence, and/or cause, and/or location of long-term care. Sources included systematic reviews, a new search of MEDLINE (April 2018), and a personal collection of papers. Validating information was sought from existing data on services. RESULTS:: There are few epidemiologically sound studies, most having bias and/or missing information. The best estimate of incidence of PDOC due to acute onset disease is 2.6/100,000/year; the best estimate of prevalence is between 2.0 and 5.0/100,000. There is evidence that prevalence in the Netherlands is about 10% of that in other countries. The commonest documented causes are cerebral hypoxia, stroke, traumatic brain injury, and tumours. There is some evidence suggesting that dementia is a common cause, but PDOC due to progressive disorders has not been studied systematically. Most people receive long-term care in nursing homes, but a significant proportion (10%-15%) may be cared for at home. CONCLUSION:: Each year, about 5/100,000 people will enter a prolonged state of unconsciousness from acute onset and progressive brain damage; and at any one time, there may be 5/100,000 people in that state. However, the evidence is very limited in quality and quantity. The numbers may be greater.

What I learned from my illness. Listen to what a patient tells you about changes in their experience and function, not about their current state.

I only realised how much my osteoarthritic hip had altered my life after the operation enabled me to return to activities I did not know I had stopped. Identifying need for and benefit from treatments should focus on relative changes in experience and function, not on a person's absolute state at a particular time.