There are serious concerns that delays in the pathway of care for patients with a subarachnoid (brain) haemorrhage, resulting from the rupture of a cerebral aneurysm (aSAH), are affecting the quality of patient care, despite major improvements in the treatment of aSAH, the latest National Confidential Enquiry into Patient Outcome and Death reveals.

Managing the Flow? found that there were delays in assessment, diagnosis, referral, transfer and treatment of patients in the study, which were more marked if the patient was admitted over a weekend. 

Report co-author Dr Alex Goodwin, NCEPOD Clinical Co-ordinator and Consultant in Anaesthesia and Intensive Care, said: “This report highlights a lot of good care, but the lack of protocols for managing the care of patients with aSAH found in this study is most striking. I am extremely concerned that delay in diagnosis in primary and secondary care, and delays to treatment, particularly over the weekend, are affecting patient care. It is already known that the-time-to treatment is significantly longer in the UK than it is in other developed countries.”

aSAH is a condition that affects around 5,000 people in the UK each year, often at a relatively young age - half of patients are under 60. But, the survival outcomes are poor. Half of patients die within a month of the haemorrhage, and of those who survive the first month at least half will remain dependant for help with daily living activities, leaving 25% who go on to live a normal life. 

The NCEPOD report highlighted areas that needed improvement in primary, secondary, tertiary and rehabilitation care for aSAH patients. For example, GPs failed to recognise aSAH symptoms when patients came to them with a severe headache and other warning signs. In 18% of cases the initial assessment in secondary care did not include a neurological examination, and diagnosis of aSAH was not prompt. A third of hospitals also had no protocol to investigate acute onset headaches. 

Report co-author Professor Michael Gough, a Consultant Vascular Surgeon and NCEPOD Clinical Co-ordinator, expressed concerns that patient care was being further compromised by poor rehabilitation support available to patients: “Many aSAH patients will be dependant for help with their daily living activities for the rest of their lives. So, it is vital that all patients not only receive early inpatient rehabilitation, but also rehab support that continues in the community once they’ve been discharged from hospital. This is essential to help them make as a good recovery as is possible.”

NCEPOD Advisors found a worrying under provision in rehabilitation services both after surgery and following discharge together with inadequate planning for continuing care. As a result only 16% of the patients who were most likely to require neuropsychological support received it as an inpatient (28/170) and 12% (21/170) post-discharge. Advisors also observed that 21% (35/164) of cases had inadequate rehabilitation planning in hospital, and post-discharge 20% of patients (45/227) had an insufficient continuing care plan.

However, the report findings revealed an improving picture where 90% (190/210) of hospitals could provide CT head scans 24/7, and 86% (239/277) of patients were treated using endovascular techniques. Overall, NCEPOD Advisors judged that 58% of care provided to patients in this study was good.

Key findings

aSAH diagnosis was overlooked in primary care in 32/75 patients, and advisors considered the outcome was affected by this failure in 23/32 of patients. 

  • 18% (62/344) of patients did not have a neurological examination in secondary/acute care.
  • One in three hospitals (52/182) had no protocol for investigation and treatment of acute onset headache.
  • Only 39% (63/161) of hospitals offered neuropsychological support for patients repatriated from a tertiary neurosurgical/neurosciences centre following a procedure.
  • Interventional radiologists were only available seven-days-a-week in 10/27 neurological centres.
  • Treatment delays were more frequent following admission at the weekend: 70% (108/150) of weekday admissions had an intervention within 24-hours of admission compared to 30% (42/150) of weekend admissions.
  • In 58% of cases there was good care.
  • Organ donation did not occur in 49% (43/87) of potentially suitable donors.

Key recommendations

  • Formal networks of care should be established, linking all secondary care hospitals receiving aSAH patients to a designated regional neurosurgical/neuroscience centre.
  • Standard protocols for the care of aSAH patients in secondary care hospitals should be developed to improve diagnosis, stabilisation, management, referral and transfer of patients to neurosurgical centres and subsequent repatriation to secondary care including rehabilitation.
  • Appropriately funded rehabilitation for all patients following an aSAH should include as a minimum: access to information for patients and relatives; specialist nurses; and comprehensive inpatient and outpatient rehabilitation services.
  • Policies and audit should be developed to improve rates of organ donation.

NCEPOD Chairman, Bertie Leigh, said that Managing the Flow? had shown that in the last 20 years the NHS had made a remarkable change in the care of patients with aSAH: “This is a welcome and real achievement. Let us also acknowledge that 58% of cases in this study were judged as having good care in all respects.” 

However, he pointed to the NCEPOD findings that indicate problems of transfer and room for improvement to patient care, and questioned why there were longer intervals in treatment at weekends and out-of-hours care.

“Is it true that as a result we must endeavour to present our cerebral bleeds during working hours, and not at weekends?  An optimal outcome depends on prompt recognition, investigation and referral by people who may be specialist in the vital task of recognition and filtering, but who may well never have seen a case of aSAH before. Given this challenge, it is puzzling that a third of the hospitals where you are likely to present have no protocol or policy for the investigation of acute onset headache,” he added.

But, Mr Leigh concluded that: “There is no doubt that on the evidence of this report the NHS has made sturdy progress, and much in this report goes against the stream of anti-NHS stories.”