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today, 29th may 2020, we have sent the below letter to miriam cates, mp for the constituency in which the pha uk is based.

dear miriam cates,

question on behalf of people with the serious lung disease pulmonary hypertension

i am writing to you as chair of a rare disease charity based in chapeltown, part of your constituency.

our charity, the beplay.asp (pha uk), supports people living with pulmonary hypertension (ph) and their clinical teams. ph is a rare, life-limiting condition that affects the lungs and heart.  

people with this disease are officially recognised as being clinically extremely vulnerable and on government advice, have been shielding since march. these patients, and their loved ones, are becoming increasingly concerned that despite making the huge sacrifice to shield themselves away from the world, as society begins to open up, they are in danger of being forgotten.

the government daily briefings, and therefore the news, focus on the lifting of restrictions to allow healthy people to meet and socialise again with family and friends, go shopping, return to work and enjoy leisure activities.

our members, whilst appreciative of the shielding support provided by government, are anxious about how long they must continue to shield for and when they may be able to see loved ones or rejoin society.

they are justifiably disappointed that this does not seem to be acknowledged by westminster and tell us they feel ‘cast aside’ and ‘forgotten’ – despite making such a huge sacrifice.

while this sacrifice is in part done for their own physical protection it must not be forgotten it also to help protect the nhs and other crucial services.

as a charity based within your constituency, we would like to ask on behalf of our members: as restrictions start to lift, how is the government going to ensure that those still shielding are recognised within the strategy to ending uk lockdown?

we will be watching developments carefully and look forward to your response.

yours sincerely,

dr iain armstrong

chair, pha uk

standing up for those who are shielding

today, 29th may 2020, we have sent the below letter to miriam cates, mp for the constituency in which the pha uk is based. dear miriam cates, question on behalf of people with the serious lung disease pulmonary hypertension i am writing to you as chair of a rare disease charity based in chapeltown, part […]

29 may 2020

important notice – inaccurate updates about requirements to shield

updated 3rd june 2020 we have discovered that some people with pulmonary hypertension have been receiving notices advising them they no longer need to follow government advice to shield. these notices have come via a text message from the national shielding service or a letter from a gp practice. the notices state that consequently, food […]

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raise awareness with us on world ph day

world ph day takes place on tuesday 5th may with the aim of bringing global attention to pulmonary hypertension.

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pha uk partners with westfield health british transplant games

press release: the beplay.asp (pha uk) has partnered with the westfield health british transplant games for the second time.

10 march 2020

slozem® no longer available as a pulmonary hypertension treatment

the pulmonary hypertension treatment slozem® (which contains diltiazem) is no longer available for patients – but alternative brands are available.

26 february 2020

pha uk founder shortlisted for prestigious nursing award

press release: pha uk co-founder iain armstrong has been shortlisted for a prestigious national nursing award.

12 february 2020