Sheffield charity welcomes findings of pulmonary hypertension audit

23 March 2017

A Sheffield-based charity for people affected by pulmonary hypertension has welcomed the findings of research into how those with the condition are cared for.

The National Audit of Pulmonary Hypertension report, published today (23rd March 2017) by NHS Digital, shows that patients receive timely and high quality care, with many of the standards set by the audit being met.

The Pulmonary Hypertension Association UK (PHA UK), based in Chapeltown, has welcomed the findings, which show that over 7000 patients were managed across the specialist NHS adult treatment centres in the UK between 1st April 2015 and 31st March 2016.

Pulmonary hypertension (PH) is a serious condition that causes high blood pressure in the blood vessels connecting the heart and lungs. There is no cure, and average life expectancy is six to seven years.  PH is very rare, and adult patients are treated at one of seven specialist centres in London, Sheffield, Glasgow, Newcastle and Cambridgeshire.

The report shows that 86 per cent of those referred to a specialist centre attended a consultation or were discharged within 90 days, exceeding the standard of 75 per cent. Forty-five per cent were seen or discharged within 30 days, exceeding the standard of 40 per cent.

Ninety-two per cent of patients taking PH-specific drugs have had at least one consultation at a specialist centre within the last 13 months, and 99 per cent of patients received a firm diagnosis of pulmonary hypertension before drug treatment was started – exceeding the standard set.

The national audit has taken place each year since 2010 and is the largest of its kind in the world. This is the first time it has used standards to measure clinical practice.

Iain Armstrong, Chair of PHA UK, said: “The specialist pulmonary hypertension centres in the UK are the envy of the world and it’s fantastic to see this audit confirming such high standards of care. It demonstrates that the PH service continues to deliver high standards, even with such huge pressures on many areas of the NHS.

“PH is a life-limiting and life-threatening disease, but it can often take a long time for patients to be referred to a specialist centre, because their symptoms can be confused for more common conditions like asthma. Therefore, it’s vital that once they have been referred they are assessed quickly, so it’s particularly encouraging to see the centres exceeding the standards in this area.

“The standards used to measure performance were retrospectively applied and provide a benchmark for future years, to drive quality of care even higher.”

PHA UK has put together a summary of the findings of the audit, following consultation with patients about which aspects they were most interested in. It can be accessed by visiting www.phauk.org.

The National Audit of Pulmonary Hypertension was founded by Dr Simon Gibbs, lead clinician and honorary consultant cardiologist for the National Pulmonary Hypertension Service at Hammersmith Hospital in London.

It has run annually since 2010, and was funded by the PHA UK in its first year. The audit is now funded via NHS Specialised Commissioning in England, and managed by NHS Digital. 

PHA UK is based in Chapeltown, Sheffield, and is the only charity in the UK dedicated to supporting the PH community made up of patients, their family and carers and NHS professionals too. It provides information, support and advice; and funds thousands of pounds worth of medical research and health education initiatives to promote better awareness, diagnosis and treatment of the disease.

 

Notes to editor

Image shows Iain Armstrong, Chair of the PHA UK.

Also attached is the PHA UK’s summary of the findings of the National Audit of Pulmonary Hypertension.

Iain Armstrong is available for interview, to arrange please contact Mary Ferguson on 01226 766900 or at mary@capitalbmedia.co.uk

The seven adult specialist PH centres in the UK are within the Freeman Hospital in Newcastle; Golden Jubilee National Hospital in Glasgow; Royal Hallamshire Hospital in Sheffield; Papworth Hospital NHS Trust in Cambridgeshire; and Hammersmith Hospital, Royal Brompton Hospital and Royal Free Hospital in London.

Thanks to a range of highly advanced treatments developed over the last 15 years, people with pulmonary hypertension have seen quality of life improve and life expectancy double to around six to seven years on average, with many living longer. But there is no cure. A few people with PH undergo heart and lung transplants.

People can be born with PH or develop it at any time and it can affect anyone, regardless of age or ethnic background. It affects more women than men.

Symptoms of PH typically involve breathlessness, fatigue, black-outs and swelling around the ankles, arms and stomach. PH affects the ability to carry out basic tasks and get around. Living with the condition can have a significant impact on emotional well-being.

For further information about pulmonary hypertension visit www.phauk.org, call the PHA UK office on 01709 761450 or e-mail office@phauk.org.  

PHA UK is a registered charity no: 1120756

This press release was prepared by Capital B Media, a public relations and media training agency based in Sheffield, South Yorkshire. For more information, please visit www.capitalbmedia.co.uk

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