What can we learn from other NHS services?

Services for bleeding disorders are at an exciting stage of development. The 2013 NHS England service specification is overdue for renewal [1]. The 2020 Peer Review Programme, commissioned by UKHCDO, identified areas of good practice but also signs of systemic weakness [2]. The COVID-19 pandemic has accelerated the introduction of technology to enable remote consultations but also revealed important shortcomings in the NHS [3,4,5]. The past five years has witnessed the emergence of new treatments that may – for haemophilia, at least – transform the way care is delivered [6].

Haemnet initiated Project Phoenix to assess these challenges and stimulate debate in the bleeding disorders community about how best to respond. One strand of the project is looking at how other specialist services within the NHS have evolved and are preparing for the future.

There are many parallels between haemophilia and cystic fibrosis and the NHS cystic fibrosis service offers a model from which much can be learned.

What is cystic fibrosis and how is it treated?
What parallels exist between haemophilia and cystic fibrosis services?



1. NHS England. 2013/14 NHS Standard Contract for Haemophilia (all ages). https://www.england.nhs.uk/wp-content/uploads/2013/06/b05-haemophilia.pdf
2. NHS Quality Review Service. Inherited and Acquired Haemophilia and other Bleeding Disorders Peer Review Programme. Overview Report. May 2020 https://images.qualityreviewservicewm.nhs.uk/wp-content/uploads/2020/05/28154818/IABD-Overview-Report-2020-V1-20200527-1.pdf
3. Flannery T, Bladen M, Hopper D, Jones S, McLaughlin P, Penn A, Sayers F, Wells A, Stephensen D. Physiotherapy after COVID-19-“Zoom or room”. Haemophilia. 2020 Oct 4:10.1111/hae.14166.
4. O’Donovan M, Buckley C, Benson J, Roche S, McGowan M, Parkinson L, Byrne P, Rooney G, Bergin C, Walsh D, Bird R, McGroarty F, Fogarty H, Smyth E, Ahmed S, O’Donnell JS, Ryan K, O’Mahony B, Dougall A, O’Connell NM. Telehealth for delivery of haemophilia comprehensive care during the COVID-19 pandemic. Haemophilia. 2020 Nov;26(6):984-990.
5. Charles A, Ewbank L. The road to renewal: five priorities for health and care. King’s Fund. April 2021. https://www.kingsfund.org.uk/publications/covid-19-road-renewal-health-and-care
6. Hart DP, Kessler CM, Aledort L. Re-personalization and stratification of hemophilia care in an evolving treatment landscape. Hematology. 2019 Dec;24(1):737-741.