Firstly i have to say that i’m a little upset that you haven’t taken me up on my offer regarding me relaying my experiences with the care I’ve recieved through the NHS and how i feel it could be run more efficiently and effectively so that everyone benefits but primarily the users of the service receive the quality of care they deserve, have been promised and lets face it should be given .
I first became ill approximately seven years ago . Im not going to go into the finer details (happy to in private) but lets just say several things happened to my body at once.
I went to my GPs problem one you never get to see the same Doctor so you can’t built up a relationship with them. They don’t know your history and let’s face it it really is pot luck if you get a good one or not. Within approximately 3 weeks after ruling out anything super major i was put on pain killers and told i had fibromyalgia.
I’d gone from being super active exercising four times a week, active with my children to barely able to do anything.
That was the start of my demise (is that the right word) as everytime i went back to the Doctor’s i saw a different one (that is if you could get an appointment) i just got more medication.
In agony with muscle spasms my husband took me to hospital and they started me on oxycontin. That was another big mistake.
I mean there was literally no help. I didn’t want to live. I couldn’t move . I was in agony. I wanted to die.
Little bits started happening in the background my Dentist referred me to maxillofacial. He became pro active in trying to help with the facial spasms and we seem to be on top of them mostly with regular botox injections because they can offer them at blackpool Vic hospital.
It was then discovered that i was stopping breathing at night but it was central apnea so had to be referred to a specialist lung function unit at wythenshawe who have been amazing and we still aren’t understanding what the heck is going on but they are fantastic there.
I was also referred to a pain clinic in Preston. He’s great and he worked with me in getting off these oxycontin because they weren’t doing anything. They were completely wrong for the symptoms i was having . I was given cannabinoid to try and that has helped. He also gave me steroid injections in my head neck, I’d have rather had botox as i know that works for me but preston hospital don’t do botox. Bear in mind i already have steroid injections further up in my head that the neurologist does to treat my migraine cluster type pain so I’ve no idea if I’m being overdosed on steroids 😤
So i have all these amazing specialist now treating me and after 6 years of hell I’m starting to feel a bit more like i want to live again.
The problem with having specialist all over in different regions is that they are on different computer systems. Tests can be repeated results aren’t shared so diagnosis delayed therefore treatment is and that’s unacceptable! Surely my files should be in one place?
Then if you are going to try and use the argument that GPs are supposed to correlate the information and make sense of it are you kidding me? I am trying to stick with one GP at my surgery and the poor man is run off his feet. I can’t get an appointment but isn’t it my right to have someone watching over everything that knows me and knows my history?
My next point is social care. Not a lot to say really as there isn’t any in my area and as you are making it one of your targets i hope you will support me to set up something in this area. Young carer deserve a place where they can go. It’s not only that my youngest child has been terribly unhappy about going into school or beaver scouts because he has attachment issues with being stuck in the house a lot . I have been asking for support for him as he would benefit from group activities to build up his confidence and social skills.
The next thing ( i bet you are wondering when I’m going to stop , nearly there)equipment. I was stuck in . Couldn’t leave the house. Contrary to belief you don’t grow wings when you drink red bull !🤣 It’s like stupid to say it but you need someone to teach you to be disabled.
You don’t have a clue what to do. I’ve had to use a camping toilet in my hallway for 7 years . It’s been the best buy ever that toilet and we have definitely had our money’s worth out of it.
So i bought my own second hand scooters but as they died i asked the doctor if he could get one because mortgage to pay and all that. I was expecting an appointment to go to the wheelchair place to discuss my needs. It’s not it’s one style for all! It may as well of been an extra seat because it was useless as a wheelchair in this area. I told them and they did kindly replace it with a more action one but this area is horrendous for pot holes and kerbs that are supposed to be lowered but aren’t. How am i supposed to enjoy going out with my family? I do have an electric wheelchair i bought myself second hand even that isn’t good enough for this area . I can’t be independent. I can’t do what i want to do . I’m fustrated. Do you know how it feels to really really want to do something but you can’t because your chair won’t go that way. Mum’s let us down again .
On a positive note we have just got enhanced community support workers in this area and it’s the first social care I’ve had which has been priceless.
I’ve worked out a way to exercise with my ventilator on so I’m trying to strengthen my arms up .
The occupational therapists came around and hopefully I’m going to get ground floor bedroom and toilet hallelujah. The kids can have friends around.
It may be jumbled, there may be typos, punctuation, grammar (my brain all jumpy even with screen letters on huge I’m struggling) etc anyone feel free to edit and send back. But it is from the heart and it’s real so i hope you read this letter and take it on board. I was a strong person and this has broken me . More importantly it’s stolen my childrens’ childhoods because I’ve failed them. Times ticking they’ve lost mostly 7 years……………
Well Mr Hunt I Just wanted to update you about the wheelchair situation. I have since had 2 accidents