The National Health Service (NHS) in England and Wales provides care for approximately 15000 children and adults with HbO. A national peer review of paediatric and adult HbO services against a set of quality standards was commenced in 2010 aiming to obtain a clear picture of service provision. These initial visits confirmed a lack of investment and marked inequalities of care highlighting the need for improved facilities, staffing and the establishment of networks of care. The results of the second national peer review programme (2015/6) are reported here with comparative analysis of performance against quality standards allowing an opportunity to establish whether the programme has led to improvements in the quality of, and access to, care.


Services were reviewed against a set of 51 quality standards established by a steering group of experienced UK clinicians from the UK Forum for Haemoglobin Disorders. They examined support for patients, staffing, training, facilities/equipment, service organisation, guidelines, governance/audit, clinical networks and commissioning. 32 centres were visited including all major city hospitals in England and smaller hospitals with significant HbO patient populations. Review visits were conducted by a team of doctors, nurses, patient representatives, psychologists and NHS managers and the process was overseen and supported by the West Midlands Quality Review Service. Following each review the centre received a standardised report of compliance highlighting areas of good practice and concerns.


Overall the visits provide evidence of a progressive increase in compliance with the quality standard, more marked in paediatric services (fig 1 and 2). 14/16 (82%) of paediatric and 21/31 (68%) of adult centres showed an improvement in compliance. The percentage of change in compliance ranged from -12 to +39% in paediatric and -22 to +59% in adult centres.

Other findings from the peer review visits showed:

  • Themes from patient feedback were difficulties accessing adequate emergency care and support for Day Care units providing open access pain control.

  • Out of hours transfusion was only available in 50% services, throughout the review process.

  • Inequity of access to automated apheresis with several large centres not being able to provide this service.

  • Inadequate dedicated medical and nursing time with a decrease in number of adult services with named lead nurse from 68% to 58% in successive reviews. A lack of specialist psychological support was almost universal and unchanged throughout the review period.

  • In the 2015/16 review only 25% of services had completed audits specified in the standards, but increased numbers of services were developing a rolling programme of audit and participating in research.

  • Assessment of pain control according to NICE Guidelines had been performed in most centres, however very few services were able to meet the 30 minute arrival to analgesia target.

  • Transcranial Doppler services were of an inconsistent standard and no national quality assurance tool existed for this investigation.

  • Increasing numbers of services (67% paediatrics, 75% adults) were participating in multidisciplinary meetings and this had improved from 47% in the previous review.


Peer review of NHS quality of care in England is mostly voluntary but generally valued. This is the first ever report of a nationwide iterative, quality standards-based HbO peer review programme. It was conducted with almost universal participation from individual services, highlighting the willingness of service providers to engage with this voluntary process. Thearguments to sustain such programmes include evidence of cost effectiveness but impact on outcomes is more difficult to demonstrate. This report demonstrates that higher rates of compliance with quality standards were observed following implementation of the peer review programme. In part this is likely to be driven by the peer review process and shows that this process can promote excellence in patient care.


Howard:Bluebird Bio: Consultancy, Honoraria; Novartis: Honoraria, Speakers Bureau.

Author notes


Asterisk with author names denotes non-ASH members.

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