How in the UK, with national health service, Human Rights and the Equality and Diability Act 2010, is it allowed for someone to be completely abandoned and have zero access to healthcare. No GP, no rheumatologist, nothing.
Have SLE, which is fairly newly diagnosed in Oct 2019, not treated (intolerant to hydroxycholoroquine). After receving a generic letter from the department, I left a voicemail on the adviceline. That was a week last Thursday, still waiting for a call back.
Chronic/permanament leukopenia and neutropenia, severe B12 deficiency, migrains, PPPD.
Migrains are crippling. Neurologist gave two suggested medications, firsrt was proponoalol, took for two days and was awake for two full days, I was wired, so stopped taking it. The second suggested he gave clear instructions of tests to carry out before prescribing. However, a new GP at former practice, ignored this and still prescribed it. Due to having both cardio and respiratory issues since battling pnueomnia and pluerisy in March and April 2019, I am very cautious about trying it and I am not remotely comfortable taking new meds with no healthcare.
Dizziness (PPPD) is driving me up the wall, anxiety is through the roof and the heat is bothering me. I always get a rash on the inside of my knees anyway whenever it is warm/sunny. But this is totally different. I am new to SLE so ahve no idea what is normal, what isn't. Very itchy, red and angry rash all over my legs, particularly bad at ankles, inside of knee, top of calf, near inside of the knee joint and thighs and hamstrings. Scratching that much I have broken skin at several points. Using Elecon that the dermatologist gave me to try to stop the itch, but the rash is going nowhere.
SLE isn't even being moniteroed. Last had bloods done in Feb, but not given the results due to the failure that is BCUHB and devolved NHS as rheumatology care in Wales is near enough non-existent/ Wasn't given thte results from December 2019 blood either. The rheumatologist said he would give a written response to all my rheumatology/SLE questions. that was Feb 7th, I'm still waiting. Knew it was never going to happen anyway.
MP is utterly useless. He is nothing compared to the previous and very well respected MP and he was even helping me with the failuree that is North Wales Mental Health Team before the GE in Dec. Welsh AM useless, too.
I am at a total loss. How can anyone be left in this position? How can no one being doing anything about the state that BCUHB is in? Been in special measures since 2015 - 5 very long years and nothing, not a soul is doing anything about it.
Finally had a phonecall yesterday from someone who works for Mark Isherwood. Genuine quote from he when I asked how can I get healthcare "Well.... if you move to Chester..." Errrr, we have a NATIONAL health service, not a local health service and you shouldn't have to move counties to get healthcare! I also asked what was being done about BCUHB being in special measures and the state of it. After a lot of fluffing around and 'eerrrrrr' , 'errrrmmmm' 'welll...', I eventully got half an ansewr of 'well..... they (Welsh gov) have meetings with them to discuss it'. So just talking, no doing, no actions, no changing things?
What the hell has to happen before ANYONE does anything about the state of North Wales!? How many people have to die? Or does it not matter at all? No one cares (those in power).
They all seems perfectly happy with the way things are here.
I desperately need help, desperately need healthcare. Can't even go for walks atm. I would jump at the chance to have a phone consultation with a rheumatologist, GP, anyone!
I am on mertazapine, it works wonders, not taken it since Monday as I only have 14 tablets left and no way of ordering more. I need other prescriptions, but can't order. I am on ESA and UC, sick note is due to run out on June 10th, need a new one - no chance of getting one.
Straned in the village due to no car, no public transport, a small amount saved for a car so far, can't get a tax refund that I so desperately need (near enough same amount that I have saved up for a car (£640), PIP going through mandatory reconsideration.
How can anyone be left like this? I know I am nothing. I realy do hate this life with an absolute passion. I wish I had the balls to end it, but I can't I have my niece and nephew that I would give anything to hug them. Can't remeber the last time I had a hug was.
And NONE of this is to do with COVID-19! So no, it won't improve after the pandemic. Have no idea what is going on with the IPFR form that is/was going through for me to access rheumatology at Countess of Chester. It's probably lost in the air somewhere. Due to no healthcare, there sure as hell isn't anyone sorting it all out.