Prolonged disorders of consciousness (PDOC) services
- First published: February 10, 2025
- Last modified: January 10, 2026
On 6 February 2025, three speakers at a seminar organised by COPPA (the Court of Protection Practitioners Association) considered “Withdrawal of treatment applications in the Court of Protection for patients in PDOC”. While preparing my talk, I published a blog post on being a prolonged disorders of consciousness (PDOC) expert. I was accompanied by Dr Krystyna Walton, Consultant in Neurorehabilitation, and Francesca Gardner, Barrister from 39 Essex Chambers. Each speaker vividly described how current practice in clinical teams and healthcare organisations, including healthcare commissioners (Integrated Care Boards, ICBs) within Integrated Care Systems (ICS), is failing patients and, specifically, fails to comply with the Mental Capacity Act (2005). This systematic failure of the NHS concerns me so much that I have written a post to illustrate the failures and suggest ways matters could be improved now.
I acknowledge my two co-presenters’ examples and ideas and their comments on my first draft. However, the content is my responsibility, not theirs. I must also thank Claire Christopholus of Hill Dickinson for organising the conference and the audience for their questions and comments.
Table of Contents
Introduction
People with a prolonged disorder of consciousness cannot advocate for better services, and their families are often too concerned to do so. This vulnerable patient population needs safeguarding, yet it is rarely protected, and no one takes responsibility for its quality and standards. Standards exist, and the Mental Capacity Act 2005 should protect them, but patients are commonly overlooked. This page considers why this has happened and what must be done to ensure reasonable quality service.
Few medical students or doctors in training receive explicit education about prolonged disorders of consciousness despite the phenomenon being known for more than 50 years. The only medical specialty that is interested in people with prolonged disorders of consciousness is rehabilitation, but few rehabilitation services have much expertise. Many services have limited knowledge and feel that patients are unlikely to benefit. Most commissioners cannot see any concrete, achievable goals and do not fund a service.
Only one organisation advocates for better services and provides excellent training and support for clinical teams and families: the Coma and Disorders of Consciousness Research Centre.
The evidence of poor service quality mainly comes from the Court of Protection, which adjudicates contested clinical decisions made in a person’s best interests as defined in the England and Wales Mental Capacity Act (2005). The NHS’s failure to audit services for this vulnerable group of patients is an indictment.
Mrs Justice Theis reviewed the unsatisfactory standard of services in her judgement in a case Re: XR, [2024] EWCOP 66 (T3). A full 25% of the judgment (paras 69-94) concerned repeated failures of services in cases coming to court.
In paragraph 92, she said, ”In my judgment the ICB has an important, critical role to play. As the Clinical Lead for the ICB set out in her statement ‘The ICB will undertake as a minimum an annual review of the care commissioned to ensure that the care package remains appropriate to meet the service user’s assessed needs’ (emphasis added). For these reviews to be an effective mechanism they should include active consideration by the ICB at each review to be vigilant that the care package includes an effective system being in place for best interest decisions to be made in these difficult cases so that drift and delay is avoided. The ICB should not just be a bystander at these reviews.”
PDOC service background.
No one collects any routine data concerning patients with a prolonged disorder of consciousness, and they cannot be identified from NHS data. In 2013, a National Clinical Guideline strongly recommended the NHS should set up a register. It did not. Professor Lynne Turner Stokes, a leading expert who runs a rehabilitation service that sees many patients with a prolonged disorder of consciousness, used data from the UKROC database to investigate how they could be identified.
In 2018, I estimated the epidemiology. Sanchia Berg, a BBC journalist, asked all health commissioners for information about the number of patients known to them and the annual cost of care. I reviewed the published papers giving any data. The paper concluded that:
- There was no dependable research into the clinical epidemiology of people with a PDOC;
- The best estimates were an incidence of 5/100,000/year and a prevalence in most countries (excluding the Netherlands) of 5/100,000;
- The estimates are subject to considerable uncertainty and are likely to be low.
In another paper, I discussed the costs of about £120,000 per patient per year in 2018. This equates to spending at least £6,000,000 annually for each million people or £408M each year from the UK’s NHS continuing healthcare budget, a significant sum.
Most people envision a person with a prolonged disorder of consciousness to be a young person injured in a road traffic accident. They are a minority. Common acute causes include cerebral hypoxia following cardio-respiratory arrest and drug overdoses, , hypoglycaemia, stroke and cerebrovascular disease, and many progressive neurological conditions. Many are over 65 years old.
The diverse range of conditions that lead to prolonged disorder of consciousness means that no speciality or clinical service has experience with many of them. Most patients I see are the first seen by the clinical team, who are rarely even aware of the national clinical guidance. Most hospitals have minimal experience, and the patient is eventually discharged to a nursing home.
In principle, all patients with a prolonged disorder of consciousness must be funded by the NHS Continuing Healthcare budget and should, therefore, be reviewed annually. The annual assessment is undertaken by someone unfamiliar with the condition.
PDOC clinical care.
The National Guidelines set out the best management pathway. In a nutshell, clinically, the service should:
- Assess the level of responsiveness weekly for the first 12 weeks, then monthly until the level is stable
- Minimise all sedating drugs, reducing and /or withdrawing (for example) anti-convulsant medication unless the person has had two or more undoubted seizures
- Manage all the consequences of severe neurological damage, such as dysphagia, incontinence, and immobility
- Ensure the cause, nature, and extent of neurological damage are known and all treatable complications or plausible alternatives are excluded.
However, other crucial aspects of management are often overlooked. They include:
- Using the Mental Capacity Act best interests process from the outset to make all significant decisions. While the first few days of an acute illness may make this brief, more formal processes are essential before, for example, placing a gastrostomy tube, doing a tracheostomy, or undertaking any operation after the first few days.
- Learning about the person and what factors and attitudes guide them when deciding on the appropriate healthcare.
- Referring to rehabilitation services as soon as possible within the first two weeks.
- Discussing the likely prognosis (best and most likely outcomes at 12 months) and decisions that may be needed in future with the family.
Most services overlook the legal duty imposed on them by the Mental Capacity Act, which the House of Lords identified in 2014 and continues to be the case. Instead, reactive and usually inexpert clinical care is given, with no sense of direction and no one assuming responsibility. Most services readily acknowledge their need for expert advice, but, unfortunately, commissioners do not fund rehabilitation services to provide it, and acute hospitals are often unaware of any services available to them.
PDOC services: clinical deficits
Many specific aspects of care are faulty. I will give some examples drawn from the seminar speakers and the comments by members of the audience, and my experience.
The National Guidance recommends that all patients with a prolonged disorder of consciousness be referred to and seen by experts in a level I rehabilitation service. This does not happen for several reasons:
- Some regions of England do not have Level I rehabilitation units. Sometimes, the commissioned units only manage hyperacute rehabilitation and cannot take other cases.
- Some Level I units do not have the necessary expertise.
- Some healthcare commissioners are unwilling to commission any specialist care for this group of patients and explicitly discharge them to non-specialist nursing homes.
- Outreach services, which would be cost-effective, are rarely commissioned.
The commissioners do not evaluate or monitor the expertise or clinical care of any organisations outside the NHS they commission to care for patients with a prolonged disorder of consciousness. For example, they rarely:
- Check that the service undertakes yearly treatment reviews and whether it remains in the person’s best interests.
- Ensure the service has specialist clinical expertise or access to it. Most nursing homes only have medical input from general practitioners and limited, if any, other rehabilitation expertise. The service standards are set out in the recent Nursing Home Standards
Third, at almost every point, decisions are made by clinicians with little or no knowledge about prolonged disorders of consciousness and often by inexperienced, junior staff. Examples of situations where inadequate knowledge or experience is made available include:
- Decisions on gastrostomy feeding
- Ongoing review by commissioned ‘case managers’ or by continuing healthcare commissioners without involving specialist clinicians in complex cases,
- Discharges to care homes are often made by discharge coordinators without considering the patient’s needs beyond basic health safety. Speed and cost are the primary determining factors.
The way forward: acute onset PDOC services.
Several relatively simple steps would ameliorate most of the difficulties.
Most patients remaining in a prolonged disorder of consciousness will spend some time in an intensive care or high dependency unit. Anyone discharged from such units who remains unconscious should be registered on a hospital register and must have a fixed date within their discharge summary and forward plan no longer than four weeks after onset for a formal meeting between the clinical care team and the family.
The meeting goals would be to:
- Make any decisions needed at the time
- Collect and collate information about the patient and their likely “past and present wishes and feelings … beliefs and values … and other factors that he would be likely to consider if he were able to do so.”
- Outline the patient’s present state and prognosis
- Outline any decisions that might become important and need discussion in the future, especially if treatment may need to be withdrawn if it is no longer in the patient’s best interests to receive it.
Further, the clinical team must discuss with the family whether it is in the patient’s best interests before any patient has:
- A tracheostomy
- A gastrostomy tube insertion
- A nasogastric tube replace more that three weeks after onset
In most cases, it will be in the person’s best interests, even if only for a limited time while acute care continues, and progress is assessed. These meetings are crucial because they ensure that the clinical team and the family understand that they are part of good legal care and are legally required.
Last, as soon as discharge is discussed, the person responsible must:
- Refer them to the local level I rehabilitation unit, not necessarily for admission but so that they take on responsibility for all expert assessment and follow-up through and after discharge.
- Ideally, the level I service should notify the patient to the UKROC PDOC database
- Undertake a best interests process with input from an expert in patients with a prolonged disorder of consciousness to consider
- The appropriateness of the nursing home considered
- Advance Care Planning for all likely events
- The timing of the following review
- Arrangements for expert service follow-up
The recently published Nursing Home Guidance includes ways of checking competence in meeting the needs of patients with a prolonged disorder of consciousness so that they provide safe, effective care.
The way forward: long-term PDOC services
There are fewer everyday events or pathways to identify people whose prolonged disorder of consciousness arises from a progressive disorder or those who have been discharged from acute care.
One good point is when they start clinically assisted nutrition and hydration through a nasogastric or gastrostomy tube. No unconscious person should have a gastrostomy tube inserted until a best interests decision confirms it is appropriate. This process must involve people who know about prolonged disorders of consciousness and must not be delegated as a routine process for inexperienced junior staff to complete. Further, a similar process must occur when any unconscious person has a nasogastric tube replaced more than two weeks after its first insertion.
Most people receiving long-term tube feeding are known to the dietitian service, and dieticians should insist on establishing that continued feeding is in the person’s best interests; if they do not demonstrate this, their continued provision of treatment falls outside the law.
Additionally, most patients will be funded by the NHS continuing healthcare budget and will be known to the relevant commissioner. The person undertaking the annual review must ensure a thorough review with input from a clinician with expertise in prolonged disorders of consciousness of all treatments before or during their review; this review must explicitly discuss whether any are no longer in the person’s best interests.
The Integrated Care Board (ICB) responsibilities
NHS England describes Integrated Care Systems thus: “Integrated Care Systems bind artner organisations together. Their core role functions are planning to meet population health needs, allocating resources, ensuring that services are in place to deliver against ambitions, facilitating the transformation of services, coordinating and improving people and culture development, and overseeing delivery of improved outcomes for their population.”
The Integrated Care Board is responsible for commissioning healthcare services for its population. The Kings Fund review explain that: ”This means that, instead of focusing on procurement and contract management, the role of commissioners is to work closely with key partners across the system (including with providers) to understand population needs, determine key priorities and design, plan and resource services to meet those needs.”
In other words, as Mrs Justice Theis said, “The ICB should not just be a bystander at these reviews.” The ICB must work with hospitals, nursing homes, and Social Services to ensure the Mental Capacity Act is followed in the services it commissions. It is also responsible for commissioning all the services patients in its population need.
In many settings, services need input from an expert in prolonged disorders of consciousness to make decisions soon after the condition is identified and later, when the patient is in a nursing home or occasionally at home. The patient will usually not be directly under the care of the expert rehabilitation service, but other services cannot reasonably make proper best-interest decisions without it.
Therefore, the ICB must commission a rehabilitation service with expertise in managing patients with prolonged disorders of consciousness to provide extensive outreach and inpatient services, usually for a short time.
The ICB must also:
- Ensure acute hospital services have in place procedures such as those outlined above so all patients entering a prolonged disorder of consciousness are identified and managed in compliance with the Mental Capacity Act
- Commission a rehabilitation service that has or undertakes to gain appropriate expertise to provide an expert service to all patients with a prolonged disorder of consciousness from as soon as they become unconscious until at least one year later. Most of this will be by outreach services, not by admission to a unit.
- Ensure that dieticians and continuing healthcare funding reviewers insist on annual formal meetings. During these meetings, all treatments are considered and explicitly discussed to determine whether they remain in the person’s best interests.
- Preferably, a register of all patients with a prolonged disorder of consciousness should be established and maintained. This would reduce the risk of failing to maintain good standards and help clinicians plan appropriate services for this resource-intense group of patients.
Last, an estimated 10% of patients are cared for at home, with the remainder in nursing homes. Thus, the issues affect all parts of Health and Social care services. General practitioners and other community services, such as dietetics and physiotherapy, support nursing homes but are not experts in prolonged disorders of consciousness. The rehabilitation service’s expertise must be made accessible along the patient’s journey.
Developing a rehabilitation network in each area would help, but that is some way off.
Conclusion
Healthcare providers and commissioners have had access to explicit and comprehensive guidelines on the best management of people with a prolonged disorder of consciousness for 12 years and have singularly failed to act on them. The Mental Capacity Act (2005) has been in place for 18 years, yet clinical teams routinely ignore it. The Care Quality Commission and hospital safeguarding teams have also singularly failed this group of vulnerable patients. This page has taken a different approach. I have suggested some practical steps to improve care. The Integrated Care Boards, Hospital services, nursing homes, Social Services, and community services must work together. That is their purpose, and this may be an opportunity for all to benefit as even small proportionate savings and improvements will be significant.