British Lung Foundation
33,763 members41,218 posts

What is going on ? Neglect /Rationing?

I am concerned that my former surgery of 4 months said they did not deal with the cardio pulmonary when asked for a plan regarding pulmonary hypertension that had not shown up on tests .I had been left without treatment since the cardiac arrest .The same had happened with oedema becoming lipo- lymphedema when Drs refused diuretics for 3 years.

When hospital monitoring apps cannot be transferred when move and the A&E Depts of local hospitals taken away who is monitoring these safety issues.It appears the CQC, MP & GMC don't want to know ? Could it be they use call centres to block?!

5 Replies
oldestnewest

Hello there skybluepink and I also suffer from Pul Hypertension. I've had to fight all the way through several medical consultant s,to be referred to the Royal BROMPTON which is one of a few hospitals dealing with PH. I'm currently waiting for my appointment date and I certainly will tell you all about it afterwards.

Here's looking forward to a better New Year.

2 likes
Reply

Thanks but it was the Royal Free London who discovered it after 12 years when requested investigation after sudden heart attack , fitting a Reveal device .

The GP/Nurse? at time couldn't interpret the sigmoidoscopy test which showed a lack of stamina in fact the classic heart failure symptoms still being ignored by NHS .So the Reveal device has only revealed problem it is not being monitoring properly suspect as comatose daily after eating/drinking .

Reply

Dear skybluepinkskybluepink,I understand 100% about it taking years for PH to be correctly diagnosed. Even the wonderful Royal Brompton Hospital and I say that as up until the PH issue arose,they had been beyond winderful but even they took years to agree with the evidence in front of them! I'm still waiting for my next appointment to discuss our "plan of action". There's another member on here who's posts you may have read about PH and if not,then try reading them using the search facility. She's very knowledgeable. I'm sorry that you have the added problems of total fatigue after eating etc but you could always use the BLF advice line as they have fully qualified staff there to help us.

1 like
Reply

Your profile says you are in the UK so you could asks to be referred to one of the hospitals with specialist Pulmonary Hypertension departments, depending on where you are in the country. See : phauk.org/treatment-for-pul...

2 likes
Reply

It appears when you are over a certain age & location discrimination & RATIONING may be raising its heads, as the diagnosing hospital are not in urgent contact over problems with functioning of devices .The switchboard of Royal Free ask if you're a patient [ cardiac] & say not allowed to contact the Duty Doctor??!!! Now they are trying to put me in touch with local Nurses running a Heart Failure service 100 miles away from Dr see once a year via the cardiac .They are the ones who refuse to see you in Minor Injuries saying not medical? Yet are employed to triage in A&E ?Yet it is the Royal Free who discovered the underlying disability before there was a third tier of the system re: research [ patient orientated? ]

It had become even more confused as need sedation for another procedures & anaesthetists do not want risk as Lung Function Dept not been monitoring with Specialist overseeing having missed the PAH as do not coordinate records always returning to square one .Could it be it sits on the cusp?

Does this make reasonable sense ?

Reply

You may also like...