Our not so wonderful NHS

butterfly1

Hi Everyone

I don't post on here very often but I have had a lot of support and information from you all, especially in the early days of my diagnosis with PA 3 years ago - thank you for that.

I had steroid injections into my shoulders 2 months ago and something went badly wrong. After 2 weeks of crying down the phone to the Rheumy clinic and calls to them from my GP they eventually reluctantly agreed to see me again. Xrays and ultrasound discovered they had ruptured my tendons and I was referred for an urgent MRI which should have come through within 2 weeks. After 2 weeks, I had heard nothing and after 5 phone calls found out that the radiologist had forgotten to send the form off to the MRI dept. I now have to wait until this Friday 14th Aug for my MRI (original urgent referral was 3rd July).

I've also been waiting 2 months for a physio appointment (this was referred before I had the injections that went wrong). I went to that appt this morning expecting the physio to start but it was just an assessment. There was a mistake in that I should have had a one hour assessment but was only booked in for 30 mins so the assessement could not be completed. They have given me another appointment for the rest of the assessment in 2 weeks time!! She did though refer me for hydrotherapy but I have to go on another waiting list for that which is at least 2 weeks. I wouldn't be so angry about all this if I was able to go to work but since the injections the pain and reduced mobility have stopped me working and I'm so desperate to get back. I can't bear being stuck at home and I don't know anyone who doesn't work so I'm so low and lonely. I

'm really sorry, I know there's so many of you out there much worse off than me. My company pays for BUPA so I have seen a Private Ortho Surgeon who is doing his own tests and he thinks I might need a full shoulder replacement. I'm only 43 and find this very worrying. I'm only on anti-inflams and painkillers as MTX damaged my liver and I had an allergic reaction to Sulpha. Because of funding they would not consider me for Anti-TNF and now I'm in this condition. Even though I have BUPA it does not cover my arthritis as it's a chronic condition which is not covered by them. I was lucky to get the referral to the ortho with them but if his tests find that the arthritis has caused the damage I'll have to progress with the NHS and from my recent experiences I expect I'll have to fight for a referral.

What is it with this country? You hear that we're supposed to be greatful for a free healthcare system which in fact is not free as we pay National Insurance but do not get the service and help that we all so desperately need. On reading this forum I can see there are so many of you out there going through similar experiences.

sharmaine

Hello

I'm sorry to hear that you have been in so much pain because of someone's negligence. I do hope you get some good news soon.
You must be in agony! What a travesty! There seems to be a lack of communication on all fronts.

Please let us know how Friday goes.

Sharmaine

tkachev

Dear Butterfly 1

I am really sorry to read your post!
I have had shoulder pain in the past and it was horrible,niggling,constant pain.It got better when I went on Humira and has now gone.
But your situation is awful and I can only give you my best wishes.
Dont suppose that is any use to you at the mo but I just wanted to make a comment so you dont feel so alone.
All the best
Tkachev

jaspercat

Hi Butterfly, really sorry for all your problems and hope they can soon be resolved, just a thought have you complained to PALS at the hospital? they might resolved the problem for you.

On the subject of the NHS I recently said on here that around here, Macclesfield, they are hopeless, my Rheumy is off on holidays and Rheumy nurse off sick, I last saw my Rheumy in febuary she wanted to see me in six months, I queried it and was told that I am being seen in december, thank goodness for my gp who gave me some morphine patches to help with my recent new pain love Jaspercatxx

butterfly1

Thank you all for your lovely replies. I've been bottling it up for weeks and feel a lot better offloading and knowing there's others out there going through the same. I hate the though of the TNF drugs going into my system but I think the time has come to go out there an fight for it. Work has been my distraction from this condition and now it's stopping me from working I'm totally lost, especially as I love my job so much. I run a team and I feel like I'm letting everyone down. I really don't want a shoulder replacement as I live alone with my teenage daughter and really don't think she'll be supportive enough for me to cope with the recovery. I really can't see her washing and dressing her mother at that age and to be honest it's not something she should have to do. I haven't heard of PALS so will investigate that one, thanks.

franki

I have to say that I have had really excellent treatment through the NHS (Macclesfield) No excessively long waits, no problems with appointments, other than occasional delays in the waiting room. Really good communication between GP, Consultant and I.
Also my Dad was taken ill recently (heart attack) and the care he received was tremendous.
Over many years my family have had the need to access various different NHS services and the positive experiences far out weigh the minor negatives!

woodbon

Hello, I'm sorry that you'v had an awful experience. I don't think these people realise just what hopes are invested in them, and how to treat people with dignity and respect. Having said that, some NHS experiences I've had have been very positive, but not all by a very long way! Good Luck I hope that you manage to sort things out. My love and best wishes. Sue

mistywillow

woodbon wrote:

Hello, I'm sorry that you'v had an awful experience. I don't think these people realise just what hopes are invested in them, and how to treat people with dignity and respect. Having said that, some NHS experiences I've had have been very positive, but not all by a very long way! Good Luck I hope that you manage to sort things out. My love and best wishes. Sue

Hi
What a dreadful time you are having, no wonder you are so upset. You seem to have been let down at every hurdle! I sincerely hope that things start improving for you and that you get some help with your pain.
Dont underestimate your daughter's ability to be supportive though. In my experience, when teenage children realise that their help is really needed they come up trumps. I know it is not what you would wish for your daughter but she may value the experience of being there for you rather than always being the other way round. Fingers crossed that you will not need a replacement though.
Gillx

valval

have u spoken to your daughter about how she feels about it she may suprise u . i have two boys in there 20s now but anything which is asked of them they tend to do with no problem but they never see things with out being told bless them. so as she is semi adult treat her like one it will also mean things dont come as a shock to her. one of my lads saw me on this sight and said who has arthritis :roll: :roll: :roll: u would think they would have noticed

butterfly1

Unfortunately my daughter is still going through that rebellious stage. Outside of the house she is a lovely girl, has a job and works hard and extremely popular but at home with me it's a different story. She won't lift a finger to help me and I have tried everything including going on strike to no avail. She has no respect for me or my home. She'll be as nice as pie one minute then a complete raving maniac the next. I'm hoping when she leaves home she'll grow up and realize you can't behave in this way. She does cook and shop but won't clean or tidy up her own mess - she doesn't seem to be able to see it. Don't get me wrong I'm no "monica" but there are certain standards that need to be maintained, ie. washing up the dishes, not leaving shoes/bags/clothes all over the house. I will have a talk with her when she's in one of her better moods and see what happens but I really don't trust her to help me enough and it'll be hard enough without that extra stress.

Hope everyone's having a good day today.

mistywillow

butterfly1 wrote:

Unfortunately my daughter is still going through that rebellious stage. Outside of the house she is a lovely girl, has a job and works hard and extremely popular but at home with me it's a different story. She won't lift a finger to help me and I have tried everything including going on strike to no avail. She has no respect for me or my home. She'll be as nice as pie one minute then a complete raving maniac the next. I'm hoping when she leaves home she'll grow up and realize you can't behave in this way. She does cook and shop but won't clean or tidy up her own mess - she doesn't seem to be able to see it. Don't get me wrong I'm no "monica" but there are certain standards that need to be maintained, ie. washing up the dishes, not leaving shoes/bags/clothes all over the house. I will have a talk with her when she's in one of her better moods and see what happens but I really don't trust her to help me enough and it'll be hard enough without that extra stress.

Hope everyone's having a good day today.

Hi
Just wanted to say that my eldest daughter was a teenager from hell but she eventually calmed down and became delightful both in and out of the home. Not easy while you are waiting for it to happen though so you have my commiserations! Some studies have shown that there is a lot of remodelling going on in the brains of teenagers and that the area of most of this activity is in that area which plays a part in inhibition!
Hope you keep your sanity while waiting for it to happen!
Gillx