Well dear Reader here we are again.. Been contemplating my next Blog and thought I would aim for something positive but I’m just so angry and in pain that’s not going to happen today.
15 years of a rare heart condition being completely ill managed by the Medical Profession. Not through want of trying on my part. No shrinking violet me.. A true ‘tenacious terrier’ my husband calls me..
The files on letters, emails etc I’ve written to try and get help ,are now so heavy I can’t lift them.
‘hey you have a rare condition so that must make the Doctors act quicker to help..’ Sheer bullshit.
Found my first Cardiac Consultant letter of 15 years ago the other day it read ..’this patient is neurotic ..’ So now 5 cardiologists later… Exhaustion beyond words, a heart op which didn’t work and left me with more problems… Back procedure…That’s DEFINETELY a neurotic issue.
Been housebound now more or less permanently since October and the heart op , have had a serious disc issue in my lumbar which now my Osteopath can’t solve so got referred to an Orthapaedic Consultant.
Diagnosis: inactivity due to heart op exacerbated long term back issue due to immobility to the extent in permanent excruciating pain and little mobility. Severe irreversible damage to muscle and ligament = wastage. Oh and my age isn’t helping even though I’m not old.
Had to cancel 3 Heart Consults due to this.. Yes it’s life I hear you cry .. But 6 weeks ago I was told I was and have been eligible for Transport to and from Hospital appointments.
I work from home with my husband I claim nothing as not eligible and luckily we manage, just.. But I need physical help the hospital is two hours away.
My Cardiologist Secretary told me 6 weeks ago that my GP Practice sets this up initially then they the hospital take over the Transport.
Ring the GP Practice she said.
I expect when you had your Heart Op last October the GP filled you in on this on her home visits…She said.
Home visits say I? What are they. in 2014 they don’t exist I said.
Oh they do she said, after a Heart Op.. Or they should.
My husband had to literally half carry me in after my Heart Op to see the GP.
She was so not coming to me.
Cardiologist Secretary says.. Well you must have known about Transport Help from GP practice.
No indeed says I… Aghast and weeping with pain.
Ring the GP she says.
Long story short 5 weeks it took even with written confirmation from my CCG for the GP Practice to actually listen and take 5 minutes to follow up my query.
Guess what dear Reader, spookily I was correct. Spookily so was the Cardiologist Secretsry.
The waiting lists are so long it’s literally months before you can get an appointment to see your Cardiologist, unless you pay.
Then if you pay for one Consult out of sheer desperation, the Private Side and NHS side of the same hospital war with each other and your notes get ‘lost”.
Not a good feeling when you are about to have Heart Surgery and the Hospital is asking YOU the patient for detailed information on medicines tried that you are allergic to over the last 15 years.
No drugs work on my heart problem
Another op won’t work.
So am just being monitored or at least supposed to be.
I had to beg my GP in a letter to get checked at the Practice because of my physical state and the wait for a rearranged appointment , which was no fault of my own.
I am not stupid I know the NHS knees are buckling but it’s the Admin not the Nurses and Doctors at fault.
There is no continuity between Hospitals and GP Practices, Private Healthcare and NHS on the Admin side.
The refrain is .. ‘Well it’s the system, or the paperwork and computer systems don’t link up… It wasn’t me…’ On it goes.
Well sorry’Hospital Admin ‘it’s not Rocket Science… It’s common sense and communication.
Communication : An issue where we are inundated on every day… Internet, Facebook. Twitter, Linked in… And yet it’s a million times worse.
Yes we have millions more patients than the 1950’s.
But what a Patient doesn’t want to hear and shouldn’t and we do is:
‘ I have no notes in your file, you have wasted my time!’
When THEY have lost them.
A Patient doesn’t want to hear as they are wheeled into an Operating Theatre:
” Your notes are lost can you tell me the dozens of years and dozens of names of drugs you are allergic to before we launch into your Heart’
A Patient doesn’t want to hear:
‘You need Non Emergency Transport Assistance as you are too weak, too ill to travel unaided ? This doesn’t exist try and find your own way.. ‘
This is when as a human being you realise you are in fact Invisible to them, they want you to disappear. All the supposed organisations set up to help you like PALS etc don’t make me laugh… I’m still waiting for a reply from October 2013 on how to cope after a Heart Op.
So like the Wicked Witch in Oz dearie just pour water over me and et voila your problem will disappear!