Emilia Clarke and discharge after a brain haemorrhage: must the SUS refer patients for rehabilitation?

By Ramon Martins Andrade, attorney (OAB/RJ 188.374)

English translation of an article first published in Portuguese: read the original.

In March 2019, Emilia Clarke told, in an essay published in The New Yorker, a story she had not until then made public. On 11 February 2011, shortly after finishing filming the first season of Game of Thrones, she felt a severe headache during a workout and was diagnosed with a subarachnoid haemorrhage, bleeding into the space that surrounds the brain, caused by the rupture of an aneurysm. She was 24. She was treated endovascularly, without opening the skull. After the first two weeks, a nurse asked her her name, and she could not say it: she had aphasia, the loss of the ability to use language. The aphasia passed in about a week, and she left hospital a month after being admitted.

The doctors had found a second, smaller aneurysm on the other side of the brain, and the approach was to watch it with periodic scans. In 2013, the scan showed that it had doubled in size. The planned procedure failed, there was major bleeding and she had to be operated on again, this time with the skull opened. Another month in hospital, anxiety and panic attacks followed. In the essay, she said she was fully recovered and introduced SameYou, an organization created to help people recovering from brain injury and stroke; Rolling Stone reported the account the same day. She also wrote that many people had been through far worse without anything like the care she had been lucky enough to receive.

In 2024, her mother, Jenny Clarke, co-founder of SameYou, wrote on the website of the National Rehabilitation Centre, linked to the English public health service, that it is on leaving intensive care that the critical need for rehabilitation becomes apparent, that it is “not always available” and that the messages received from young survivors revealed a great unmet need. The organization’s stated aim is for the person to have neurorehabilitation as soon as they leave hospital.

The account is hers and her family’s, and it ends there: nothing is known, nor is anything asserted here, about her doctors, services or treatments beyond what she herself has told, and one person’s course does not predict another’s. What the story makes visible is the moment of discharge for someone who has survived a haemorrhagic stroke: who ensures that rehabilitation begins, and where? In the SUS (in Portuguese), Brazil’s public health system, the answer lies in a rule rewritten in 2023; in health plans, in rules of the ANS (the health-plan regulator). The article goes through the science, the guidelines, the two Brazilian routes and three other countries.

Before the law, health: a sudden, very intense headache, unlike any other, with or without vomiting, fainting or difficulty speaking, calls for immediate help from SAMU 192, Brazil’s emergency medical service.

What science knows about life after the haemorrhage

Subarachnoid haemorrhage from a ruptured aneurysm is a form of stroke. The systematic review by Etminan and colleagues (JAMA Neurology, 2019), with 75 population-based studies from 32 countries, estimated a crude incidence of 7.9 cases per 100,000 people per year and a global decline from 10.2 to 6.1 per 100,000 between 1980 and 2010.

Surviving does not end the problem. The review by Al-Khindi, Macdonald and Schweizer (Stroke, 2010), which gathered 61 studies, described deficits of memory, executive function and language as common among survivors, with effects on activities of daily living, return to work and quality of life, aggravated by depression, anxiety, fatigue and sleep disturbances.

The aphasia that Emilia Clarke described has its own measure. Dunn, Finch and Rumbach (Disability and Rehabilitation, 2024), in a systematic review of 18 studies, found aphasia in 5% to 24% of patients with non-traumatic subarachnoid haemorrhage, warned that many studies excluded the most severe cases, which tends to underestimate the number, and recommended routine assessment of language after this type of bleeding. In stroke in general, the Cochrane review by Brady and colleagues (2016) estimates that around one third of people have aphasia.

Treatment works, and the dose matters. The same Cochrane review gathered 57 randomized trials, with 3,002 participants. In the comparison between speech and language therapy and no therapy (27 comparisons, 1,620 participants), speech and language therapy improved functional communication, reading, writing and expression; and therapy at high intensity, in a higher dose or over a longer period brought significantly better functional communication than therapy of lower intensity or duration, with the caveat that more patients dropped out of the intensive programmes. The trials were, in general, small.

Where rehabilitation takes place also matters. The Cochrane review by Langhorne and Baylan (2017), with 17 trials and 2,422 participants, concluded that early supported discharge, in which rehabilitation continues at home, reduced the risk of death or dependency (odds ratio 0.80; 95% confidence interval 0.67 to 0.95), with moderate-quality evidence. The greatest benefits came from services with a coordinated multidisciplinary team; without one, the result was inconclusive, and the participants were mostly older people with moderate disability. The benefit came from the coordination, not from the discharge itself: sending the patient home without a team to receive them is not the intervention that the studies assessed.

What the guidelines require at discharge

In 2013 the Ministry of Health published the Guidelines for Rehabilitation Care for People with Stroke. The document allows rehabilitation to begin during the hospital stay and recommends that the patient, on hospital discharge, “receive a report on their clinical condition, referrals to the rehabilitation team, and guidance on home care”. It also lists the team that may see the patient as an outpatient, with physiotherapist, speech and language therapist, occupational therapist, psychologist, social worker, nurse, nutritionist and physician, and devotes a section of its own to aphasias. These are three verifiable deliverables: the report, the referral and the guidance.

The English guideline is more detailed. NG236 from NICE (2023), on stroke rehabilitation in adults, requires screening for communication difficulties within the first 72 hours of symptom onset and referral of suspected cases to a speech and language therapist (recommendations 1.12.1 and 1.12.3); offering rehabilitation of at least three hours a day, on at least five days a week, according to need (1.2.16); follow-up by the specialist team within 72 hours of transfer from hospital to home (1.1.17); continuing rehabilitation after discharge “for as long as it continues to help the person achieve their treatment goals” (1.1.8); and reviewing the needs of the person and of those who care for them at six months and every year thereafter (1.17.5). The guideline is not law, but it provides the clinical yardstick: rehabilitation ends by goal, not by calendar, and the transition has a deadline.

In the SUS: referenced discharge under the Care Network for Persons with Disabilities

The Care Network for Persons with Disabilities (Rede de Cuidados à Pessoa com Deficiência), created by Ordinance GM/MS 793/2012, was consolidated in Annex VI to Consolidation Ordinance GM/MS No. 3/2017 and had much of its text rewritten by Ordinance GM/MS No. 1.526/2023. The firm has already described the network, the Specialized Rehabilitation Centre and the path through the regulation system (the SUS referral and scheduling system) in the articles on Guillain-Barré syndrome (in Portuguese) and on continuing care after spinal cord injury (in Portuguese). What matters here are three points of the 2023 wording that weigh on discharge after a haemorrhagic stroke.

The first is the discharge. The hospital and emergency component of the network must “establish rehabilitation reference teams for the early identification and treatment of disabilities” and “promote responsible, qualified discharge, referenced to the other points of the Health Care Network” (art. 22, II and III). Referenced means with an address: referred to whoever will continue the care, and not a generic “look for physiotherapy”. Lei 8.080/1990 (the Organic Health Law) defines comprehensiveness of care as the “articulated and continuous set of preventive and curative actions and services” (art. 7, II), and discharge without a referral breaks exactly that continuity. The provision does not guarantee a particular service or a number of sessions; it guarantees a destination, and the discharge summary shows whether there was one.

The second is whom the network serves. The 2012 wording spoke of “temporary or permanent” disability; the 2023 wording adopted the definition of the Lei Brasileira de Inclusão (Lei 13.146/2015, the Brazilian Inclusion of Persons with Disabilities Act, art. 2): a “long-term” impairment which, in interaction with barriers, may hinder full participation in society (art. 1, sole paragraph). Some read into this the exclusion of those who have just left hospital and do not yet know whether the sequelae will last. That reading does not hold up against the rule as a whole: among the network’s objectives is the early identification of “health conditions that may result in long-term impairments” (art. 4, II), and recent aphasia after a brain haemorrhage is exactly such a case. The Convention on the Rights of Persons with Disabilities, which has the status of a constitutional amendment in Brazil (Decreto 6.949/2009), calls for rehabilitation to “begin at the earliest possible stage” (art. 26, 1, “a”); the reach of that article is discussed in the text on the treaty and the number of sessions (in Portuguese). The limit also exists: if the functions have returned and there is no indication for specialized rehabilitation, there is nothing to demand of the network.

The third is the care plan. The specialized care point must produce, together with the person, a Singular Therapeutic Project based on a multidisciplinary assessment of needs and functioning, shared with primary care (art. 15, IV). The primary care unit is responsible for follow-up “at the UBS, at home and in the spaces and facilities of the territory” (art. 13, VIII) and offers “individual and collective rehabilitation practices”, including through multidisciplinary teams (art. 13, XIII). The Lei Brasileira de Inclusão points the same way: public actions and services must ensure habilitation and rehabilitation “whenever necessary” and multidisciplinary home-based, outpatient and inpatient care (art. 18, § 4, II and III).

In practice, this translates into three requests, made in writing: the discharge summary with the diagnosis, the sequelae observed (including of language and memory) and the referral for rehabilitation; registration with the regulation system, with the request number; and, at the primary care unit, a record that the case has arrived and of who will follow it. Lei 13.460/2017 (the public-service users’ law) guarantees users of public services access to the information about them held in records (art. 6, III), and it is with this material that the wait is measured. When the problem is not the referral but the lack of somewhere for the patient to stay after discharge, the discussion is a different one, dealt with in the article on social discharge (in Portuguese).

In health plans: no cap on sessions, with a deadline for scheduling

Those who have a health plan need not wait for the public network to begin. RN ANS 541/2022 revoked the utilization guidelines that limited sessions with physiotherapists, speech and language therapists, psychologists and occupational therapists (art. 3), a change explained in the article on facial palsy and the rehabilitation the plan owes (in Portuguese) and, for stroke, in the texts on physiotherapy (in Portuguese), occupational therapy (in Portuguese) and speech therapy for dysphagia (in Portuguese). What is not repeated there is the scheduling: RN ANS 566/2022 sets a maximum of ten working days for sessions with a speech and language therapist, psychologist, occupational therapist and physiotherapist (art. 3, III, V, VI and VII), with access to any accredited provider in the network within the municipality, not necessarily the one chosen by the beneficiary (art. 3, § 2). For someone with aphasia, this means that the speech therapy prescribed at discharge must begin within two weeks, and not when a slot opens at the preferred clinic.

When the patient is unable to leave home, the boundary is a different one. If the health-plan operator offers home-based hospitalization in place of inpatient care, with or without contractual provision, it must meet the health requirements and the guarantees of hospitalization laid down in Lei 9.656/1998 (the Health Plans Act) (RN ANS 465/2021, art. 13). In any case, what defines the extent is the detailed prescription: therapies, frequency, goals and the date for reassessment.

Comparative law: three ways of guaranteeing what comes after

The three countries below treat rehabilitation after stroke as part of the treatment, but guarantee it by different routes: one through the clinical guideline within the public service, another through a coverage criterion of public insurance, the third through cost exemption for the disease.

1. United Kingdom: the guideline as the yardstick of the public service

In England, the public service is free of charge by law (National Health Service Act 2006, section 1), and NG236 gives the service the yardstick of time and intensity: communication screened within 72 hours, three hours of therapy a day on five days a week for those who need it and can take it, follow-up within 72 hours of discharge, reassessment at six months. The limit of the model is that the guideline is not law, and Jenny Clarke herself recorded that, in England, rehabilitation is not always available.

2. United States: coverage conditional on intensity

Under Medicare, the US federal public insurance programme, admission to a rehabilitation hospital is covered only if, on admission, there is a reasonable expectation that the patient requires multiple therapy disciplines, one of which must be physical or occupational therapy, and can participate in an intensive programme, which under the current standard consists of “at least 3 hours of therapy per day at least 5 days per week” (42 CFR § 412.622(a)(3)). The benefit must be shown by measurable improvement of practical value to functional capacity, and the therapies must begin within 36 hours from midnight of the day of admission. The rule protects intensity, but leaves out of that admission those who cannot yet participate in the programme.

3. France: disabling stroke on the list of long-term conditions

Under French health insurance, the insured person’s share of the cost “may be limited or removed” when they have one of the conditions requiring prolonged treatment and particularly costly therapy listed by decree (Code de la sécurité sociale, art. L160-14, 3°, author’s translation). The first condition on the list is “disabling stroke” (art. D160-4, author’s translation). Rather than regulating the deadline, the French technique removes the cost from the path of those left with sequelae.

Brazil has a little of each model. As in France, the SUS does not charge for rehabilitation; as in England, it has a clinical guideline that requires referral at discharge; as in the United States, the health plan has a deadline to begin, the ten working days of RN 566. What is missing is the link in the SUS: none of the rules read for the article says within how many days, after a referenced discharge, rehabilitation through the SUS must begin. Discharge with a destination is the verifiable obligation; the wait after it is measured case by case.

Liability: what can be demanded, and what cannot

The Código de Defesa do Consumidor (the Consumer Protection Code, art. 14) makes private health-plan operators, hospitals and clinics strictly liable for defects in the services they provide: refusal of a prescribed session, lack of a provider within the deadline, discharge given without a summary or a referral. When the defect lies in the physician’s act, proof of the physician’s fault is required (art. 14, § 4). In the SUS, the liability of the public entity for delay has its own rule, examined in the article on the ruptured aneurysm and the wait for a neurosurgery bed (in Portuguese), which deals with the acute phase; the discharge phase follows the same logic, with one difference: the evidence is usually in the paper that the hospital handed over, or failed to hand over.

The Code of Medical Ethics forbids physicians from failing to record care in the medical record (art. 87) and from denying the patient access to it or a copy (art. 88), and Lei 15.378/2026 (the Patients’ Rights Statute) guarantees the medical record without having to give reasons (art. 19) and a second opinion (art. 18). With the discharge summary, the prescription and the protocol number from the regulation system or the operator, the timeline can be reconstructed.

There are situations in which the law offers no remedy. Incomplete recovery does not prove anyone’s failure: deficits after a haemorrhage are frequent. If the team assessed the patient and concluded that there was no indication for specialized rehabilitation, there is no referral to demand, although a second opinion is available. When the delay is avoidable and deprives the patient of a serious and real chance of a better outcome, the STJ (Superior Court of Justice) allows compensation for the loss of a chance; the leading precedent, REsp 1.254.141/PR (Third Panel, Justice Nancy Andrighi reporting, decided on 4 December 2012), is a case of inadequate treatment of breast cancer, and its headnote sets the limit that applies to all: “The chance, however, can never reach the value of the good that was lost”. In neurological rehabilitation, proof that the lost time changed the outcome is a matter for expert evidence, and depends on records of progress.

Before deciding

In my view, the word that decides the case of someone who survives a brain haemorrhage is “continuous”, from Lei 8.080: discharge without a destination breaks the continuity that the law describes, and the 2023 wording of the care network made that destination an express duty of the hospital. The rule does not guarantee an immediate place or a number of sessions, and the gap in deadlines after discharge is real; but it turns the referenced discharge into something that can be verified on paper. In health plans, the rule is firmer: no cap on sessions and ten working days to begin. In practice: ask for the discharge summary with the sequelae and the referral, keep the regulation system number or the operator’s protocol number and note down the replies. If the discharge came without a referral, the regulation system does not respond or the operator does not offer the therapy within the deadline, get in touch with the firm: the analysis starts from the discharge summary, the prescription and the replies received, read together, and does not replace medical assessment.

About the author

Ramon Martins Andrade (OAB/RJ 188.374) is a lawyer who graduated from UFRJ in 2011, with master’s degrees from Université Sorbonne Nouvelle and from the Naval War College (EGN, Brazilian Navy). He is currently a researcher in Human Rights and Health at ENSP/Fiocruz.

This content is for information and education only. It does not constitute legal advice, advertising of results or any guarantee of outcome, under Rule 205/2021 of the Brazilian Bar Association (OAB).