PHA UK response to Mims Davies MP

Letter dated 24th May 2024

Dear Mims

Thank you for your response to our letter, dated 20th May. (Your ref: MC2024/36533)

I am writing this following the general election announcement; however, this development does not lessen the importance of this issue. If anything, it makes it more relevant  than ever.

It’s vital that we continue the conversation around the dangerous proposals to reform Personal Independence Payments (PIP). Regardless of the election results, this is something that really matters to people affected by the life-limiting disease pulmonary arterial hypertension (PAH).

In your response to our letter, you claim that ‘the nature of health and disability has changed’.  Can you please clarify what you mean by this? We would argue that in fact, what has changed is the way we support those with ill health and disabilities.

It is true, as you point out, that increasing numbers are applying for PIP with mental health conditions. However, this should not be framed as a negative. Rather than ‘suffering in silence’, people are increasingly asking for help – and surely this should be welcomed?

It is appropriate for me to point out here that there have been significant cuts to mental health services that these individuals might have found support from before.

Your letter states, on a number of occasions, that the welfare system is seeking to ensure the support is given to people who ‘need it most’.  The idea of a ‘hierarchy of need’ is problematic, and I’d like to reiterate that PIP is an investment rather than a burden. It’s about helping people remain independent, and maintaining their own dignity, to prevent them declining to a point where they would be deemed as needing help ‘the most’.

You say you want to understand if better support systems can be set up – but until those systems are put into place, PIP is the only safety net for many.

We have been contacted by a significant number of people with PAH since your proposals were announced, all expressing the huge amount of worry it is causing them – on top of the burdens they already must bear.

I would like to draw your attention to one comment we received in particular, which is reflective of them all: “I would have no life without PIP. All this talk about changing it is making me stressed and I’m losing my strength to fight.”

Please consider the impact of your proposals on vulnerable people.

I have already shared the concerns highlighted in my correspondence within my response to the consultation. I ask that you address the points laid out in this letter so that we may share them with our PAH community.

Yours sincerely,

Dr Iain Armstrong PhD FRCN

Chair of the Pulmonary Hypertension Association (PHA UK) and Consultant Nurse in Pulmonary Vascular Disease