I Give Up With GPs
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@snow Yeah, patient transport's really awful. One issue is I live down a narrow street so I have issues with people refusing to pull up outside even though my current chair can't handle the local terrain)(i.e. cobbly, uneven roads/pavements). There's also the timing issue - you have to book them to arrive much earlier as they're often late but if they're actually on time then it's a crazy wait. You also can't book a return journey and have to get the receptionists at hospital to do it and a normal wait is about ninety minutes to an hour. Then there's the fact that many of the vehicles aren't suitable for wheelchair users and/or the staff don't do their job properly. One driver didn't strap in my wheelchair after I had to transfer to a seat so I had to hold it to stop it rolling around. Truly awful.
Have been told by the charity that I should know within two months if funding's been approved for my new chair. I'm not going to any other appointments before that. I'm just really unlucky with where I live and wheelchair access.
Have been told by the charity that I should know within two months if funding's been approved for my new chair. I'm not going to any other appointments before that. I'm just really unlucky with where I live and wheelchair access.
Archives1
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@snow - Sadly no, my father lives in the middle of nowhere. Plus, it's not a place I could stay anyway long term as his partner wouldn't have it. At my mother's the bonus is I'm near to London at least so with a decent powerchair I could get out and do stuff.
@Tarlton Thanks. It's a nightmare but sadly it seems my experience chimes with the majority of Long Covid sufferers.
@Tarlton Thanks. It's a nightmare but sadly it seems my experience chimes with the majority of Long Covid sufferers.
Archives1
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I the US you can fire a doctor and it will go on his work record.Sci_Fi_Fan said:
I have fired a couple doctors at the veterans' hospital i go to. Just for telling me all they could do for the fibromyalgia they claimed i had is give me antidepressants
being a trained EMT for over 40 years i knew better and they were feeding me BULL S**T.
i later found i did not have fibromyalgia but really had small fiber polyneurophy.caused by the sarcoidosis i have. i still can not get the fibro DX off my medical records but i did get the small fiber on the records.
Archives1
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@garry I’m sorry you went through that but I’m glad you took care of illness(es) and pushed to get yourself proper health care.
Seeing the experiences of those in the UK medical system has taught me to be ultra grateful for the U.S. health system that I used to complain more about. It costs a fortune but we have a lot more independent choice and power in our medical system. It’s not perfect, but it’s better than the absurdly long wait times and dead end care in the UK.
Makes me really sad for my relatives in the UK and explains some oddities when we get vague medical details from them - because they themselves are getting vague diagnoses and vague solutions from the UK health care system.
Sad. @Sci_Fi_Fan I’m so sorry that you’re still stuck in dead end medical care.
What if you go to a doctor and don’t talk about COVID because they’ll stereotype you as immediately for it? What if you just go to the doctor and say you have all the symptoms of MS and want to be evaluated for MS? That’s a really serious illness and honestly that sounds like what you have. It may or may not be COVID related, I know it does time with your COVID but it could be something else that you would’ve got anyway. It seems when you mention the word COVID to your doctors that they immediately quit listening to you so maybe you should try going to one and not saying the COVID word?
Best wishes as always.
Seeing the experiences of those in the UK medical system has taught me to be ultra grateful for the U.S. health system that I used to complain more about. It costs a fortune but we have a lot more independent choice and power in our medical system. It’s not perfect, but it’s better than the absurdly long wait times and dead end care in the UK.
Makes me really sad for my relatives in the UK and explains some oddities when we get vague medical details from them - because they themselves are getting vague diagnoses and vague solutions from the UK health care system.
Sad. @Sci_Fi_Fan I’m so sorry that you’re still stuck in dead end medical care.
What if you go to a doctor and don’t talk about COVID because they’ll stereotype you as immediately for it? What if you just go to the doctor and say you have all the symptoms of MS and want to be evaluated for MS? That’s a really serious illness and honestly that sounds like what you have. It may or may not be COVID related, I know it does time with your COVID but it could be something else that you would’ve got anyway. It seems when you mention the word COVID to your doctors that they immediately quit listening to you so maybe you should try going to one and not saying the COVID word?
Best wishes as always.
Archives1
Staff member
Garry. Heard good and bad about the VA's medical care. Got the paperwork and have been afraid to try it. In the past, my former employer has used anything they can to dump retired employees on another system so they (the employer and their "Third Party Administrator") one pays less out of their designated funds, and the other makes more profit on their contract, respectively. It's a long, expensive trip to the VA, here, too. Friends that go there report mostly good experience, but not the kind of care I need, so there is that.
If you are a member of the VFW or the America Legion, some posts can offer help with straightening out paperwork. Remember Agent Orange? The V and the Legion spent endless time helping turn that around.
Take care. Stay Safe.
If you are a member of the VFW or the America Legion, some posts can offer help with straightening out paperwork. Remember Agent Orange? The V and the Legion spent endless time helping turn that around.
Take care. Stay Safe.
Archives1
Staff member
@snow MS has been ruled out so it's really FND and Chronic Fatigue that I fit under (although it seems Long Covid is its own thing really).
@Maymay941 I've tried pursuing that to no avail. I'm going to try and apply for funding for private treatment if I don't get anywhere. I think the key is to just have an appointment somewhere so that I can be signposted to other places as well.
@Maymay941 I've tried pursuing that to no avail. I'm going to try and apply for funding for private treatment if I don't get anywhere. I think the key is to just have an appointment somewhere so that I can be signposted to other places as well.
Archives1
Staff member
More GP drama:
So I'm applying for Universal Credit due to not being able to work. With the cost of living crisis my mother could really do with me contributing to costs. It's all relatively straightforward but I hit the dreaded GP surgery snag again. Even though they've known about my issues for ages (coming up to a year since I first asked for a referral!) and I've had numerous consults policy as this practice (it seems to be an outlier in this regard) is that even if it's for a known condition, you need an appointment first. I emailed them my A&E discharge notes and a referral letter from a neurologist confirming I've had to stop studying to no avail.
They refused to give me an appointment before April 20th even though it was urgent. The Job Centre (the places which do benefits) have actually been really helpful but have been really shocked that a) they wouldn't issue a sick note and b) how long it's taken to get an appointment given the urgency.
I just give up. I've felt so stressed and angry the last few days and yet again it's all because of the GP surgery. I have made a formal complaint - nothing will happen but at least they have to go through the boredom of actioning it.
So I'm applying for Universal Credit due to not being able to work. With the cost of living crisis my mother could really do with me contributing to costs. It's all relatively straightforward but I hit the dreaded GP surgery snag again. Even though they've known about my issues for ages (coming up to a year since I first asked for a referral!) and I've had numerous consults policy as this practice (it seems to be an outlier in this regard) is that even if it's for a known condition, you need an appointment first. I emailed them my A&E discharge notes and a referral letter from a neurologist confirming I've had to stop studying to no avail.
They refused to give me an appointment before April 20th even though it was urgent. The Job Centre (the places which do benefits) have actually been really helpful but have been really shocked that a) they wouldn't issue a sick note and b) how long it's taken to get an appointment given the urgency.
I just give up. I've felt so stressed and angry the last few days and yet again it's all because of the GP surgery. I have made a formal complaint - nothing will happen but at least they have to go through the boredom of actioning it.
Archives1
Staff member
@Sci_Fi_Fan just wondering if there's a charity that could help you with funding for a new or a good used power chair? Or if you could find a decent but better chair than you currently have. Finding a decent used chair from a private seller is what I'm meaning.
Here in the states we have Craigslist and Facebook market place and in some cases there's local buy sell trade classified papers. In Canada they have kijiji it's similar to Craigslist ie same concept.
For example I got a free used power chair from a charity organization. Only bad thing is the batteries are bad batteries can be replaced which I'm going to do.
I'm currently using a manual wheelchair but I've got shoulder issues with both shoulders. I just had surgery on my right shoulder 12 days ago, I'm having the same issues with my left shoulder so surgery might be in the future for my left shoulder.but shoulder issues make it difficult to use a manual wheelchair. It was recommended for me to get a power wheelchair, I was in somewhat of a rush to get a power wheelchair so I took this free chair, whilst I scratch,claw and fight with my health insurance to approve coverage for a power wheelchair.
Replacement batteries for a power wheelchair cost way less than a new chair and can be replaced with larger charge capacities for longer travel range/ run time.
But me being over here in the states I'm not familiar with what resources are available to you.
Could you please let us know what resources are available to you in the uk?
Here in the states we have Craigslist and Facebook market place and in some cases there's local buy sell trade classified papers. In Canada they have kijiji it's similar to Craigslist ie same concept.
For example I got a free used power chair from a charity organization. Only bad thing is the batteries are bad batteries can be replaced which I'm going to do.
I'm currently using a manual wheelchair but I've got shoulder issues with both shoulders. I just had surgery on my right shoulder 12 days ago, I'm having the same issues with my left shoulder so surgery might be in the future for my left shoulder.but shoulder issues make it difficult to use a manual wheelchair. It was recommended for me to get a power wheelchair, I was in somewhat of a rush to get a power wheelchair so I took this free chair, whilst I scratch,claw and fight with my health insurance to approve coverage for a power wheelchair.
Replacement batteries for a power wheelchair cost way less than a new chair and can be replaced with larger charge capacities for longer travel range/ run time.
But me being over here in the states I'm not familiar with what resources are available to you.
Could you please let us know what resources are available to you in the uk?
Archives1
Staff member
@compwiz878 I should be getting funding for a new powerchair via a private charity soon which is good. Something foldable which can get into the back of taxis. Ultimately in the UK the only real options are to self-fund or get private funding. The main pathway other than that is the 'Motability' scheme which is government help. However, the issue is that it basically means you trade your disability benefits for renting a powerchair/scooter so if like me your sole income is disability benefits it's not an option.
Most people I've seen online have either got funding, self-financed or even crowd-funded via gofundme. It's pretty shocking to be honest. I found myself physically disabled practically overnight (whilst looking back there was a gradual decline it worsened suddenly) but have not yet received any real help from any official channels re adapting to that. Plus, the ignorance of people doesn't help re how hard it is to get accessible transport if you don't have a folding chair and indeed the added cost.
Dealing with the Job Centre and the dreaded GP surgery again has really made my mental health hit rock bottom as it's stress I could just do without.
Most people I've seen online have either got funding, self-financed or even crowd-funded via gofundme. It's pretty shocking to be honest. I found myself physically disabled practically overnight (whilst looking back there was a gradual decline it worsened suddenly) but have not yet received any real help from any official channels re adapting to that. Plus, the ignorance of people doesn't help re how hard it is to get accessible transport if you don't have a folding chair and indeed the added cost.
Dealing with the Job Centre and the dreaded GP surgery again has really made my mental health hit rock bottom as it's stress I could just do without.
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