It’s been a while since I last wrote anything on my blog. So tonight, I decided that it’s about time I started again. Tonight’s subject is all about writing to my local MP.
At the start of the year, I decided to write to my local MP about PH. I felt it was time to start trying to put my message across and raise the awareness. My decision to do this was based on the fact that I’ve found that a lot of PH patients have found that it has taken a long time to be correctly diagnosed. Many, like myself have had this condition for years without knowing. I found myself at stage 4 heart failure before anyone could correctly diagnose me and this I found to be overwhelmingly, traumatic. I never realised how much this had affected me until recently. This was when I partly decided that something needed to be done. My belief is that no one should have to go through what I did. I very much want to see a change.
My first letter wasn’t entirely what I thought I’d receive from my MP. My MP decided he would take the matter up with Jeremy Hunt. This he did and I received a letter back. To my dismay, the first letter from Jeremy Hunt, turned out to be very generic and seemed like a ‘copy and paste job’. So after some discussion with PHAUK about the letter I received from Mr Hunt. I decided it would be a good idea to write back to my MP explaining that the answer was not really answering my questions. So then came the response from my MP that he would demand answers from Mr Hunt if I wrote back to him in another letter. This I did and so the letter was passed on to Jeremy Hunt.
In April, I had wrote my second letter to Jeremy Hunt which was three pages long. Now looking back, it feels like I have wasted my time. The letter I had from the Secretary of State was unacceptable. What made me more angry than anything was calling ‘tobacco and obesity’ an underlying condition of PH. Well Mr Hunt, all I can say is either you need better advisors or you need to do better research. I still now, do not know where his logic is coming from. How are these initiatives really going to help when it’s to do with tobacco and obesity...? This wont help someone with PH!!!
PH is caused by many things. My type of PH was caused by blood clots in my lungs that formed into tissue that caused blockages in my lungs which then created the high pressures from my lungs to the heart. However, this is not the same for everyone.
There are five types, of groups, of PH:
Group 1Pulmonary Arterial Hypertension
- Connective tissue diseases (certain autoimmune diseases)
- HIV
- Liver disease
- Congenital heart disease
- Sickle cell
- Schistomaiasis
PAH can also be inherited and in some cases appears with no known cause
Group 2 PH
Is caused by conditions that affect the left side of the heart.
Group 3 PH
This includes certain lung conditions:
- Interstitial lung diseases
- Sleep apnea
Group 4 PH
Blood clots in the lungs and other clotting disorders also known as CTEPH
Group 5 PH
- Polycythemia
- Sacrcoidosis
- Thyroid disease
This is just a quick break down, just to show causes of PH. So when someone comes out with a completely ridiculous comment, it does make me feel quite angry. I’m no medical expert, but I can do enough research to find these answers out. I feel it’s a pity that Mr Hunt could not do the same!
My conclusion to all this is that, this man does not particularly care and as always talks his way around it. Never giving a straightforward answer.
I shall continue to peruse the subject in what way I can, and I hope that the information that I have now provided to PHAUK, can make some kind of difference. My letters have been forwarded to PHAUK and they seem to want to use them with a strategy they are currently working on. I truly help this will help make the difference I was looking for in the first place.
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