Posted on June 25th 2026
Twice a year, NHS specialists from across the UK gather to plan services for respiratory conditions including pulmonary hypertension – and whilst these Clinical Reference Group (CRG) meetings happen behind the scenes, they can have a big influence on the care patients receive at their centres.
Following the most recent gathering in June, Prof. David Kiely and Dr Neil Hamilton of the Sheffield Pulmonary Vascular Disease Unit wrote this report especially for PHA UK members:
On Wednesday 17th June 2026 we attended the specialised respiratory clinical reference group (CRG) meeting at Girton College in Cambridge. This group meets at least twice a year and helps plan services for varied conditions including interstitial lung disease (lung scarring), severe asthma, cystic fibrosis and pulmonary hypertension, It includes patients and public representatives, doctors, nurses, pharmacists and commissioners from the NHS (who are responsible for planning services). We, along with PH consultant Jay Suntharalingham and Dr Iain Armstrong (patient and public voice representative) attend the meetings to work with NHS commissioners to discuss how best to deliver services for people living with pulmonary hypertension.
At the Cambridge meeting it was noted that there are a number of challenges facing the NHS. In particular the movement of work previously performed by NHS England to the Department of Health from April 2027 has resulted in some uncertainty around how care will be delivered and funded for conditions such as pulmonary hypertension.
We highlighted the value of the current network of expert and shared care PH centres and were reassured that there are no plans to change the way PH services are provided or how medicines are funded. Exciting developments were noted with new treatments such as sotatercept (recently approved by NICE) and a potential treatment for people with PH and lung scarring ( a drug called inhaled Treprostinil) currently being assessed by NICE.
They also discussed that some intravenous epoprostenol treatments (Flolan) are being discontinued, however, there are a number of options for patients affected including taking epoprostenol made by another company (Valetri).
It has also helped to make the case for having access to other drugs that work in the same way such Treprostinil (given intravenously or through an infusion into the fat under the skin). The CRG are prioritising this work to ensure that there is a high level or resilience in how PH medicines are accessed and supplied. In the UK the National Audit of Pulmonary Hypertension is used to assess the quality of care provided for people living with PH. At the meeting it was clarified that despite changes in NHS England, that funding for the national audit will continue – which is excellent news.
Despite anxieties around changes in the NHS and the potential for cuts in services it was hoped that specialised services around the UK would continue to provide high quality care. Many hospital trusts around the country are also having to make financial savings. The PH services around UK continue to work closely to share best practice and continually innovate to ensure that we maximise our resources.
We were both reassured that there is an enthusiastic and skilled group within specialised respiratory services that remain highly motivated to deliver patient focused care, despite the current pressures on the NHS.
Pictured above: Some of the attendees at the CRG meeting in June
