It would help enormously if contributors and posters declared which part of the world they are in.
Obviously we are in different countries where health services are run differently although we are all suffering with a similar ailment.
By declaring our roundabout locations the people who are following the posts at least have some idea of what they face when they come up against their particular health system.
I am in Wales, UK. So my immediate port of call is Welsh NHS.
Written by
Barneyboy48
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I do self inject. My GP refuses to budge from every 12 weeks, I’m on my knees by then. I decided to try every four weeks and it’s helped. I was ill health retired at 58 and don’t envy anyone trying to keep to a time schedule with PA and various other auto immune conditions☹️
It such a shame that our working lives are cut short for the sake of a basic vitamin. I'm sure I'd be still working now if I'd been given more injections at the time.
Hi,. Agreed, early retirement from teaching at 57. Unfortunately I didnt have a diagnosis at the time so it was all very nasty and sad. Doctors said it was depression because my mother had died. In the end a doctor under GP training found it. 4 fully qualified, long standing GP s didn't even think of PA.I'm from SE London.
I’m used to self injecting as I been on biologics (PsA) for years. Get someone else to do it for you. It’s really painless. The wee hardest bit with my arthritic hands is trying to draw the injections up .
SI is nowhere near as bad as the thought of it! And feeling better and then gradually improving is wonderful. Plus you soon get used to it. I've done every day injections for over 6 years now and my biggest struggle is remembering whether I've done it yet or not - and that's not because I have memory issues any more - it's just so easy and common place that I don't notice that I'm doing it. Honestly!
Phobias of things can be overcome. Try getting a load of needles and syringes and put them in all the places you go to regularly until they become "part of the furniture" like pencils and pens and cutlery would be. Once you're at that stage it makes things a lot easier.
I’m in Scotland too & was reduced from monthly to 12 weekly & it was a fight for that! Don’t know what GPs are up to but the whole NHS is going down the tubes….only my opinion!
It seems that way Eloise until you really need them. I found myself critically ill out of the blue just over three weeks ago. Everyone from the paramedics to the consultants, nurses etc were fantastic. The food was gross but you can’t have everything. I don’t know why PA is sidelined the way it is. I guess we’ll all have to self inject meanwhile x
That’s really good you were well looked after & hope you’re well on the mend. Haven’t been in your situation, thankfully but my sister needed attention & having waited a couple of weeks to actually speak to a GP, she was told they didn’t deal with her problem anymore!! 🤷♀️🤷♀️ A GP friend has hinted that this is the way Surgeries are going on now, so I’m not surprised A & E Depts are over-run…..I do feel sorry for them. This then begs the question why GPs get paid so much!!
I have no idea how much GP’s earn but you couldn’t pay me enough to do their job. In saying that, I was a teacher and many people say the same about that😊 My daughter needs to have her ears syringed from time to time and that is a service the NHS no longer provides. I’m in the fortunate position to be able to pay for a private consultation if I need to. Many people are not. Covid has stripped an already underfunded organisation. to the bone. Most of the GP’s I know have second jobs eg out of hours, police surgeons etc. I guess they all want to retire at an early age.
Paying for ears to be syringed ! Already I forked out over 10k for operation now they want me to go private for physio .(different condition)Afraid they are going to force people more and more into private treatment by withdrawing services which were standard treatments.
Trouble is now medical insurance is probably far too expensive for the most of us!
Perhaps if we had the right connection or name (boris) treatment would be first class.
Crikey!! How on earth do GPs do a second job on top of full time GP work -its all encompassing.....so I thought! I dont know any GPs with second jobs though know plenty are part time as cant cope with the stress of full time GP work.
I think many GP’s are part time in their practices to allow for these second jobs. It’s probably light relief for them! I couldn’t do their job and I don’t envy them one little bit.
Yes I dont envy them either.....but having picked it for their careers they have a duty to look after their patients effectively. However the reality is that unless its blatantly obvious you are on your own trying to do what is effectively the GPs job. None of us would be on here seeking ways forward if our GPs really supported us and are proactive in moving things forward for us. However you look at it .....its just wrong that many are forced into sorting it out ourselves. .
It is great that members are responding but, unless readers check posting history, these responses will disappear into ancient history all too soon.
May I suggest those who have not already done so add their location to their profiles?
Click on your avatar/icon/name and you can get to your profile.
Unfortunately for the Original Poster, they do not allow Wales - but do allow United Kingdom. But more precise detail can be included in the text, if you wish.
Great suggestion Barneyboy48. I'm in Kent (Medway), UK.
Unfortunately the NHS here has not been very effective at diagnosing and treating my symptoms. I've had 20 yrs of on-off treatment & question whether some of my symptoms date back 20 yrs prior to this.
Hi doityourself. It's good to hear from you. Sailing on the Medway sounds lovely. I bet its energy intensive so can appreciate your comment 'when energy levels allow'. I hope you are well and that your symptoms don't prevent you from sailing too much.
It’s lovely to see we are a global community 😊 thanks Barneyboy48. I’m in Lancashire, UK, my gp gives me 8-weekly injections as my levels were still really low after loading doses and 12-weekly injections. They won’t retest or increase any further, so I get hydroxocobalamin from Germany and self inject weekly. Initially I did every 2 days and then spaced it out more. I try fortnightly every so often but I get eyelid twitches, scalp and skin crawling, and tinnitus creeping back in.
I’m in Northants, England and I’ve been SI for a while as it’s only given 3 monthly at my Dr’s. Although now even that I do myself as they’ve stopped doing it at the surgery.
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