A closer look at the National Audit of Pulmonary Hypertension

Published September 2020

The National Audit of Pulmonary Hypertension is more than an NHS tick-box exercise. Professor David Kiely, who as a clinician will work with the very experienced team at NHS Digital, explains…

It’s amazing to think the National Audit of Pulmonary Hypertension has been around for ten years, and I feel privileged to have taken over from Dr Simon Gibbs as its Clinical Lead in 2019.

The annual audit, carried out by NHS Digital, looks at data provided by the UK’s specialist centres and measures outcomes – including frequency of consultations, timeliness of diagnosis, administering of treatments and tests conducted.

More recently the results have been measured against specific targets, known as standards, but it wasn’t always that way.

One of the big challenges at the beginning was trying to identify just how many patients actually had PH and were receiving treatment. So, ten years ago, it was very much about trying to uncover the day-to-day activity within the pulmonary hypertension service to help us plan for future services.

But medical audit is all about trying to improve standards of healthcare, so a few years ago, a set of standards were identified which reflected quality care measures. These were decided and refined in collaboration with the PHA UK, who involved their members – the PH community – in deciding which they felt were the most important. The standards were based on the areas identified by the PHA UK and their members as being most important. Each standard focuses on a specific area (for example, quality of life) and the top four standards were ranked in the following order:

1. 90% of patients who have had at least one consultation (inpatient, day case, or outpatient) in the last year should have at least one quality of life questionnaire recorded in that time.
   
   
2. 95% of patients whose referral letter was received over six months ago should have been seen, assessed and had a diagnosis recorded.
   
   
3. 95% of patients receiving a pulmonary hypertension drug therapy should have had at least one consultation at a specialist PH centre within the last 13 months.
   
   
4. Patients receiving a pulmonary hypertension drug therapy should have the gold standard diagnostic tests performed and recorded before any treatment begins.

It was key that patients and their families had the opportunity to identify what they felt was important. Because we always want to do the right thing for patients, it’s important to set standards that reflect what is important not only to healthcare professionals and the NHS, but also people affected by pulmonary hypertension.

Measuring improvement

Over the period of the last four years, we can see that the way centres have performed against these standards has improved year-on-year. You can see the latest results at www.digital.nhs.uk/pubs/naph10.

I think the audit has also been a huge success in terms of helping us to plan for the future, but it’s clear that it has also been very important in driving up standards and improving care for people affected by pulmonary hypertension.

Sometimes a centre may not meet every standard and there may be very good reasons for this. If that is the case, that individual centre then has the opportunity to reflect on their own performance. It’s invited to develop what’s called a ‘local action plan’, based on feedback from the national audit, and these are then shared on the NHS Digital website. You can access them using the web address above.

It’s a very important part of delivering a specialist pulmonary hypertension service to be able to demonstrate that people affected by this condition are receiving very high-quality care.

It’s also important that within the NHS in general, the people who overview how your PH care is provided – the commissioners – see that the services in the UK are well organised and meeting these high standards.

And of course, it’s vital that we look at identifying new standards that will continue to drive up the care we provide for people affected by pulmonary hypertension.

Understanding who carries out the National Audit of Pulmonary Hypertension

The national audit sits within an organisation called NHS Digital, who are used to managing huge amounts of healthcare data.

We are very fortunate that within that team there are individuals who have worked on the audit for many years now, so they understand the condition and what’s important to the pulmonary hypertension community. Having spent time with the team at NHS Digital it is clear how passionate they are about providing care for people affected by PH.

They are still keen to find out more though, so we’re delighted to be welcoming NHS Digital to one of the specialist centres soon, where they will see for themselves how the service works – and how centres are doing their best to provide high quality care.

“The PHA UK put up the initial funding for the formation of the national audit, paying for its first year. We wanted to ensure that the services being delivered in the specialist centres across the UK were meeting not just minimum standards, but high standards of care.

From our perspective, and from speaking to patients and their families, people are greatly encouraged by the existence of a national audit. And its results show that regardless of where you live in the UK, the standard of service is really high and consistent across the board. Plus, if there any issues, there is a process in which they are identified immediately and dealt with across the board.

Not only are centres striving to deliver high quality care in the UK – a high quality of care is actually being delivered.”

– Iain Armstrong, Chair, PHA UK

To see the latest results of the National Audit of Pulmonary Hypertension, visit www.digital.nhs.uk/pubs/naph10.

You’ll also find a summary in the last issue of Emphasis (Winter 2019), which can be viewed online at www.phauk.org.

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A word of reassurance about your data

NHS Digital collects information about you and your treatment to track your care wherever you receive it. The data within the published audit report is anonymised, which means that a patient cannot be identified because their personal information is removed.
If you do not want your information to be used in the audit, please contact NHS Digital by emailing enquiries@nhsdigital.nhs.uk or calling 0300 303 5678. They will talk you through the process of having your data removed. Please be assured that this will not affect your treatment and care in any way.