How odd !

So my GP is still not offering in person appointments and hasn’t been since March last year despite government advice that they should do so again NOW.

Amusing then that I get a letter summoning me for a cervical smear test, standard routine check - I’m 59.

I telephone the surgery and am granted an in person appointment for this non urgent procedure yet when I injured my leg GP wouldn’t even give me a phone appointment.

Yes I know cervical smear tests are important etc but I now limp because my injury was untreated, need pain relief, needed a scan and now am waiting to see MSK clinic who told me (on the phone) that an operation is likely needed due to the delay!

Which scenario will end up costing NHS more and use up more resources or am I either making a fuss about nothing or missing the big picture. Either way I’m furious early treatment was refused and now I’m using a stick!

😠😠😠

[Bowenlady]

The whole system is bonkers stillsdisease. I don’t know if you saw in another post but I rang the rheumatology helpline which is an answer machine to order more meds (Hydroxychloroquine and Prednisolone) as they haven’t transferred me to the GP yet as they are monitoring meds. I left a message giving the details of my meds, hospital no etc. Then said I needed urgent advice as my Lupus symptoms were really worrying me and I was frightened. I explained that my left foot and ankle were nearly twice the size of the other, both feet were hurting, stinging and really hot and I usually have cold feet all the time. I also said that there were round disc lesions appearing on my legs that looked like discoid Lupus but I haven’t been diagnosed with that. My prescription arrived three days later. I have not received a call and that was about 8-9 weeks ago! GP receptionist said that only emergency problems were being dealt with and infections were not considered emergency! It’s completely bonkers!

[PMRpro]

Oh no - definitely not missing the bigger picture - that's what they are doing.

OH fell in January last year having been sent home from hospital very weak and wobbly and with no instructions about care. He fell and that produced a fractured vertebra and a return to hospital - a different ward though. Once they had got the corset fitted 3 days later they sent him home with paracetamol (and incidently messed up his warfarin). The next morning he had major chest pain - needing another ambo. Not a heart attack but very obviously inadequate pain relief, On the medical ward they sorted the pain with cocodamol - but did not provide laxatives to go with it which had its own consequences a couple of weeks later. While there they decided the pain was most likely to have been the low INR having led to a pulmonary embolism, OK, that would srt itself - then came Covid, follow-up disappeared and rehab was delayed - further deterioration in physical condition and that steadily got worse in the autumn. Since the beginning of this year he's been in 3 times - and sent home no better each time. He'd got loads worse recently and was falling more and more. 11 days in hospital recently and he was a candidate for palliative care - the ward had done nothing. They found him a bed on the palliative ward in the regional capital 50 miles away. In 24 hours he was back to being a human - to quote him. He was no longer confused and cognitively challenged and able to get out of bed alone and, above all, eating. What had they done ? Put him on a low dose of dexamethasone and given him a pint of blood - that's all!! Things I had actually suggested to the GP months ago, but she wasn't familiar with it and medicine obviously hadn't a clue. He was truly on the downward path to hospice - think that may be a lot further away now. But last Saturday he walked into the village for an aperol spritz. Very slow, with a rollator, but nevertheless ...

So from the mistakes made last year they ended up with him needing an acute bed for a total of nearly 6 weeks and my life being awful for the last 6 months, especially the last 2. But it was MY fault - I should get a live-in carer as he was chronically ill, that wasn't needing an acute bed. Had they sorted the original problem it is very unlikely the rest would have happened and certainly wouldn't have been as bad. I am NOT a happy bunny.

[Hidden in reply to PMRpro]

Well I’m pleased he enjoyed the Aperol spritz, you deserve three at least.I should not moan after reading your tale of woe I really feel your pain and wish that good things happen to you both very quickly 🤗

[PMRpro in reply to Hidden]

I didn't mean it to tout for sympathy - it was an illustration of how poor acute care leads to a bad chronic situation and so it is something that really needs to be called out and sorted out.

[Hidden in reply to PMRpro]

I know but you have my empathy 😉

[PMRpro in reply to Hidden]

Thankyou!

[Roarah]

Wow I have been seen in person by all my doctors since May 2020. It is dangerous for this online or phone visits to continue indefinitely.

[Jmiller623]

All about liability. Cancer screening is an automaticity of the system. The person who schedules these very unlikely saw your current ordeal. That was a GP choice and personal preference to not see you. Although not right, know that what happened to you is common. I feel like were on a conveyer belt sometimes. ❤️xx

[Hidden in reply to Jmiller623]

After reading PMRPROs post my situation is insignificant by comparison. It’s a blooming disgrace.Different subject - how are you feeling?

[Jmiller623 in reply to Hidden]

Just had IVIG so a wee bit better but still struggling more than I ever have before. I’m not sure why but the fatigue has been relentless which is compounded by not being able to sleep due to night sweats. I keep my bed at 14 C/58 F and still sweat. It’s bizarre. See new rheum next week. Maybe he’ll have some ideas.

[Hidden]

Didn’t want to like any of this as all grim but really relate - until I moved GPs I hadn’t seen one in person since 5th March last year. When I completed the online registration for new GP it asked when I last had a smear. I can’t recall but can just recall that the practice nurse who did it was freaked out by a very longstanding cervical erosion so sent me to my GP - who checked it out and also took swabs which showed severe thrush and e-coli!

I too walk with a limp for an only recently diagnosed huge Morton’s neuroma I’ve had for ten years. Got my first podiatry insoles a few months ago as they say with advance of my neuropathy and vascular disease it’s inoperable now.

Honestly the things they need to look into but don’t are astonishing. For me the fury is that 6 years of misdiagnosed IBS-c turns out to be severe gastroparesis and irreversible damage done to my GI tract, likely due to my vagus nerve by small fibre neuropathy and ischemic damage from my overlap. The pandemic has made life so much harder for those of us with rare conditions and neglect over this past 18 months by my old GPs just beggars belief.

I realise that some practices and GPs have been brilliant. But it seems, from what I read on here and elsewhere and know first hand - that many more have used Covid as an excuse to hide behind closed doors. 😡xx

[Hidden in reply to Hidden]

Totally agree! The wide chasms of different care levels is astounding!I fear for us all tbh 🙁

[Bowenlady in reply to Hidden]

Sorry to hear your problems. I had a Morton’s neuroma for years and it is incredibly painful. I couldn’t put my foot on the floor some days and it always hurt when walking. The cold seemed to make it even worse, and shoes with any heels above flat were out of the question. I’m a qualified holistic therapist and decided to learn reflexology - many years ago this was. As students we had to practice on each other regularly for a year, and many other clients. After I qualified I got on with adding this to my practice. Then a friend was doing a massage on me and asked how the neuroma was, and I suddenly realised it had stopped hurting. My friend commented that he thought that a Morton’s neuroma was something that doesn’t go, and we checked but couldn’t feel it. About a year later he phoned me and said that he had just seen a report in a medical journal that a study showed that deep compression massage had helped alleviate the pain with this condition. Reflexology is deep compression massage. If someone delves deep into the tissue in my foot I can feel it a little sore but I have no problems whatsoever with it. No pain. May be worth considering. X

[Hidden in reply to Bowenlady]

Hmmm mine is not often painful anymore. I’d love reflexology (had a brilliant reflexologist years ago but she was very opinionated in her conversation!). However I don’t think it would do much for my intermittent pain - just be very relaxing.

To be honest I think it’s because I have advanced small fibre neuropathy, Erythromelagia and Raynaud’s and last year what hurt terribly has this year turned mostly numb. That said I can’t walk as far now or it kicks off. I still get a little electric shock whenever I put my foot down but I’m so used to it that it’s not bothersome now that I have proper rheumatology podiatry insoles. X

[Bowenlady in reply to Hidden]

I love reflexology too. Shame about the opinionated therapist. Some people are naturals for reflexology and show empathy, and others work as a business first and foremost. Not saying she did but it does happen. To see a child sitting on the couch with their mouth slightly agape and their eyes glazed, and mum looking really relieved is a joy. Or an elderly client snoozing as you work. Fab. At the beginning of my work with reflexology I was the constipation queen on my town! I treated two women at my slimming group and it solved the constipation problem. Suddenly I had loads of clients - all with constipation. I just couldn’t believe it, people were telling their friends and passing on my number. You never can tell eh!

[Hidden in reply to Bowenlady]

Wish you lived near me 😝

[Bowenlady in reply to Hidden]

I retired in 2018. Everything swelling up. Falling asleep momentarily whilst you are doing a full body massage and jolting yourself awake is not good, even if the client is blissfully unaware! Lol! Feeling completely exhausted and in pain and doing as many as 5 full body massages, plus Bowen Technique and reflexology in one day is hard work. I did a few clients who were housebound for a few months when I retired, but Covid settled that and it was a godsend for me to not have to drive there, carry a couch in, set it up and help them onto the couch. Drained me. Couldn’t do any of that now. Hey Ho, such is life. X

[Hidden in reply to Bowenlady]

A good skill to have used to help others though 😀

[Treetop33]

I have to say I quite like the system of phone consults. I've never had a problem getting an emergency call, and if they need to see you in person they will - I've had this throughout the pandemic. For me it saves time, and I don't always need to be seen (and indeed, I can just ask for what I want rather than having to deal with a GPs ego).

Rheumatology is a bit different and while I've had appointments any help in between this time is hard to get. I've got lots of ongoing problems I can't get help with. I think I might pay for a private consult with Dr Kaul. I believe that is because they are constantly firefighting with Covid. Of course, when Covid is out of control it affects ongoing care for chronic conditions.

[Krazykat26]

I've had the same invite for smear test and annual health check! It certainly does seem weird!! 🌈😽😽Xx

[GloomyEeyore]

I really feel for you and everyone else going through this. I feel really lucky that I have seen my GP and rheumy in person, not regularly, but on more than one occasion. Saw my GP yesterday after she phoned inviting me in. She wanted me to have a check up as she hadn’t seen me for a while. Xx🌈🥼🩺👩🏻‍⚕️

[Hidden in reply to GloomyEeyore]

Unbelievable but pleased for you

[MusicalFurbaby]

Hi stillsdisease, so sorry to hear of your troubles and delays. I’m in Australia so I’m not sure why the NHS is stuffing you around, but I certainly understand the frustration of medical delays—especially now that your condition has become so much worse! And it is weird they invited you in for a routine check, but were seemingly non-responsive to your urgent requests. It’s infuriating! I only hope they get their act together and sort it out for you. In the meantime, we’re here for you ❤️