Posted on February 12th 2025
As a charity that has worked tirelessly for a quarter of a century to support people with PH, we were shocked and dismayed to see comments from the Health Secretary Wes Streeting suggesting that organisations like ours should stop standing up for patients by lobbying government.
Today (12th February 2025) we have written an open letter to Mr Streeting, and our own constituency MP, to contest his comments and call for patient originations to be recognised as partners rather than a nuisance.
We will continue to stand up for our community and be a voice for people affected by PH, regardless of his stance. You can read our open letter below.
Dear Secretary of State,
Re: Your comments around lobbying by patient charities
I am writing to express my deep concern regarding your recent comments suggesting that patient charities should “take a back seat” and that you aim to “break the culture” of the voluntary sector lobbying government. As Chair of the Pulmonary Hypertension Association (PHA UK), the national charity representing over 4,500 members impacted by the life-limiting disease pulmonary hypertension (PH), I strongly disagree.
PH is a rare disease with a huge symptom burden, and we have helped to give them a voice for the last 25 years.
Since the year 2000 we have worked tirelessly to ensure they have access to the treatments and NHS resources they need to survive. This has required persistent engagement with policymakers, as history has shown that without advocacy, patients with rare and complex conditions are too easily overlooked. The reality is that, without lobbying – a word you appear to use with disdain – PH patients would have been abandoned.
The suggestion that charities are merely “stakeholders, not partners” is more than troubling. The NHS was founded on the principle that the patient is at the heart of healthcare, not just a bystander in decisions that affect their lives.
Charities like ours do not exist to serve political interests—we exist to serve patients. When policies threaten to compromise patient care, we have a duty to speak up. To frame this as an inconvenience to government rather than a vital part of an effective healthcare system is a fundamental misunderstanding of our role.
I feel it’s important to draw attention to, and question why, your stance has changed so drastically.
You have previously been quoted as highlighting the importance of robust charity campaigning, and indeed during a meeting with a prominent national cancer charity, you said charities “have an important role”, and it is “totally appropriate for them to campaign and critique the government”.
Furthermore, at a 2022 think tank event – as reported in a national newspaper – you claimed “there is a culture in the NHS that means that too often patients are not listened to”. Yet your recent remarks suggest a worrying shift away from valuing the voices of those who rely on the NHS most.
I urge you to reconsider this position and engage with patient charities as genuine partners. Constructive collaboration should not mean unquestioning compliance.
We stand ready to work with you, but that partnership must be built on mutual respect and a shared commitment to improving patient care. I would welcome the opportunity to meet and discuss how we can ensure that patient voices remain central to shaping healthcare policy, and this letter will be forwarded to our constituency MP too.
Yours sincerely,
Dr Iain Armstrong
Chair, PHA UK
