Will ‘the feeling of abandonment’ remain? Persisting impacts of the COVID-19 pandemic on rheumatology patients and clinicians

[Bcol]

Research Study on Rheumatology and Covid

Will ‘the feeling of abandonment’ remain? Persisting impacts of the COVID-19 pandemic on rheumatology patients and clinicians

For those who might have taken part in this the paper has just been published

academic.oup.com/rheumatolo...

[PMRpro Ambassador]

I'm much happier now I have discovered my rheumy will replace the Pain Clinic offer - and I suspect had I tried, I'd have been able to see himself sooner. But our system isn't under as much stress as the NHS. The thought of having to return to the UK and waiting lists of years rather than months is quite scary.

[Bcol in reply to PMRpro]

Yey, I have been lucky so far with a good GP practice, a relatively straightforward diagnosis and treatment ( so far!!) and no referral needed to a Rheumy.

[Kendrew in reply to Bcol]

I too have had my issues addressed but it's always felt like whatever has been required has been delivered almost after the event! Sluggish and slow so nothing really correlates accurately. (Eg: symptoms/problems occur- try to contact GP/rheumy- have telephone conversation- organise blood tests- symptoms improve- maybe f2f appointment- discuss problem that no longer exists- blood tests reveal nothing.No real conclusion or definitive answers.) Everything lagging behind and therefore never see accurate picture of problem at the time it's actually occurring.

[borednow in reply to Bcol]

You are, indeed, very lucky.

[Marijo1951]

I was told before the pandemic started that rheumatology was ''no longer considered a priority'' and, my goodness, Covid has proved this to us. I'm relieved that I've been relatively well for the last couple of years, have steadily been reducing my dosage and feel I am on the road to a full recovery. Nevertheless I resent that nobody rang me when I had a telephone appointment last April, that my December appointment has been postponed until May, also the protocol which means that my GP can't request the hospital to transfer my treatment to him - the impetus has to come from the hospital. Then there's having to chase the hospital to put me on the system for a blood test, which they're supposed to do automatically each month... The expression ''feeling of abandonment'' certainly speaks to me. I feel for those who aren't confident enough to assert themselves against the system, who simply feel too ill to make the necessary fuss, who maybe don't have English as a first language etc etc. I'm afraid that many are being badly neglected. At least this study shows that there is an awareness of the situation, so let's hope that it leads to major improvements.

[piglette in reply to Marijo1951]

I understand that 75% of people with PMR never see a rheumatologist. I suppose you are in the opposite position. The problem is we have primary care run by GPs who are not part of the NHS and secondary care which is part of the NHS and never the ‘twain shall meet. If GPs could become part of the NHS it would make a world of difference and cut a lot of unnecessary admin in my opinion.

[Marijo1951 in reply to piglette]

I have GCA as well as PMR which is why I've been treated by the hospital's Rheumatology Department. Like many people I had the best possible treatment when I was first ill and considered an emergency case, and also when I had a couple of serious flares of GCA symptoms. But now that I'm progressing quite nicely, I feel that I've been left to my own devices. However I think I still need monitoring and to receive advice. At the moment, I really want to try giving up Methotrexate to see how it goes, but don't want to do it without support.

With regard to GPs in the UK, although their practices are run as small businesses, surely they are still very much part of the NHS?

[piglette in reply to Marijo1951]

The NHS is the GPs “customer” so they pay them and do have quite a lot of say because of that. The trouble is because GPs are not part of the NHS their admin is all set up individually so nothing is properly integrated.

[Marijo1951 in reply to piglette]

I think part of the problem must be the failure of the grand universal computer system which was supposed to link up all parts of the NHS, but didn't manage it completely.

[Bcol in reply to Marijo1951]

It's interesting, but certainly the Urgent Care Centre, part of the Infirmary, where I was yesterday, had access to my medical records which I guess makes sense as the NHS app has the same access. It will be interesting to see if the blood tests and notes from yesterday appear on my medical record that I can access through Patient Access or the NHS app.

[Marijo1951 in reply to Bcol]

My local hospital the Whittington has access to my GP records and my GP can access my records at the Whittington. However when my GP first decided to refer me to a rheumatologist, the next available appointment was at the Royal Free and it was ages before I could be seen at the Whittington, so we decided to go for the Royal Free appointment. My GP doesn't have the same level of access to my records at the Royal Free, for example one of the rheumatology nurses has to email the practice with my blood test results.

By the way I see I'm not the only one suffering from insomnia tonight...

[Bcol in reply to Marijo1951]

Morning, yey I guess if everything is local then there is a good chance that systems are able to talk to each other. Fortunately all my hospital excursions in recent years have all been local and I've never had need of a Rheumy. I'm usually up pretty early in the mornings and the beasties tend to get their first walk around 05:00ish.

[Marijo1951 in reply to Bcol]

''Local'' must mean different things depending where one lives - evidently practically next-door here in London. The Royal Free is 2.9 miles from my address by the shortest route, but it might as well be out in the sticks as far as my GPs are concerned. When my youngest daughter was still living with me, she needed to see a couple of specialists at the Royal Free and UCH as the Whittington didn't have the appropriate departments. Liaison with her GP was a nightmare with letters being delayed and faxes (yes!) going astray...

[piglette in reply to Bcol]

I don’t understand why they can't have one database relating to a patient instead of the current situation. I am on five different databases. (Some of which have errors). As the local hospital went into special measures, so got taken over by another hospital trust. If you go privately it seems there is no possibility of access at all to the NHS in my case anyway. Perhaps what we need is a sort of Healthbook!

[DorsetLady PMRGCAuk volunteer in reply to piglette]

Well they don't want to make it too easy for the patients to actually know anything, do they! That takes their feeling of power over us away....

Healthbook would be sensible, then most of us would be uptodate...think PMRpro said said they have something similar in Italy.., perhaps NHS could learn ...

[Bcol in reply to piglette]

Think the powers that be tried to put in an IT system that did just that and they failed miserably and at great expense. Too many different systems all talking to themselves in a different way. Suspect the only way they could do it would be to design one system to cover everything, and make it compulsory for all trusts to use it and nothing else. Then carefully/slowly move all existing data onto the new system. Can't see it ever happening. Nor can I see the private hospitals joining it unless they were offered a very very big carrot.

[DorsetLady PMRGCAuk volunteer in reply to Bcol]

Yes they did, I can remember filling in a comprehensive survey some years ago...must be 6 or 7...all came to nothing....but then having worked for HMG for 30 years not in the least surprised... too many factions wanting different things from one database, much too unwieldy and more to the point, expensive!

would be brilliant, but alas, not in our lifetime...

🙄

[Bcol in reply to DorsetLady]

Sadly I agree, can't actually think of any major IT scheme HMG have tried to put in place that has worked well or the way it was intended and not at great wasted cost.

[DorsetLady PMRGCAuk volunteer in reply to Bcol]

Well we had a couple of new systems installed in my department- which did work, won’t say seamlessly. But the number of end users and variable responses required by NHS makes the MoD’s pale into insignificance..

…nice idea, but probably beyond even the most brilliant IT programmer.. always assuming he/she was affordable.

[PMRpro Ambassador in reply to Bcol]

Strange how daffy Italy has all its public services IT linked up! If you claim to the tax office you have no income so don't pay tax but run a Ferrari, you will get a letter asking how you afforded the fancy car! If my income is below a certain level - the hospital knows I am exempt the co-pay.

[piglette in reply to Bcol]

Perhaps they could buy the Facebook coding from Zuckerburg and adapt it!! Perhaps they could ask Zuckerburg to write it even!!

[DorsetLady PMRGCAuk volunteer in reply to Bcol]

Not sure that’s likely - mine never have. Although haven’t been to hospital appointment fir last 2 years, do may have changed……or not!

As you’re out and about, guess everything okay from yesterday’s foray !

Edit…just seen reply further down thread…..😊

[Bcol in reply to DorsetLady]

I'll keep looking to see if anything appears. They seemed pretty definite about the DVT, and I was very impressed with everything that happened yesterday, but I do have to bear in mind that this is the same hospital where they totally misdiagnosed my PMR and that was picked up by my Doctors when they saw the results of the hospital's blood tests the following week.

[PMRpro Ambassador in reply to Bcol]

Do you know what tests they did? Did it include d-dimer?

[Bcol in reply to PMRpro]

I'm not sure but I think so. they took five tubes of blood and the senior doctor was saying if this test comes back positive then DVT us a possibility but if it was a - then no problem. Think he said mine was - 1.

[PMRpro Ambassador in reply to Bcol]

Probably then and probably fine. But if you get any chest pain - don't ignore them! You can have false negatives.

You aren't on anticoagulants are you?

[Bcol in reply to PMRpro]

No, not in anticoagulants and will certainly not ignore any chest pains or any changes in my thigh/leg.

[Flivoless in reply to Bcol]

The results of my blood tests arranged by Rheumy do not show up in GP Patient Access or the NHS app (in fact no BT's at all show up in the app)

[Bcol in reply to Flivoless]

I get the doctors ones, but these will be the first hospital ones I've had since being registered with PA and the NHS app.

[Nightingales in reply to Marijo1951]

Exactly. Patient choice is a good concept, I have had surgery much sooner at private hospitals on the NHS and seen specialists at other hospitals because I am willing to travel. But I have recently discovered that my GP has no access to any of these records, neither can other consultants. I am requesting copies of records but it’s such a palava. I now know to get copies of all test results.

[piglette in reply to Marijo1951]

And only cost the taxpayer £12,000,000,000

[PMRpro Ambassador in reply to piglette]

Bargain ... NOT

[piglette in reply to PMRpro]

Frightening just throwing away twelve billion pounds and to have absolutely nothing for it. It was some US company that was supposed to have done it.

[PMRpro Ambassador in reply to piglette]

Think how many nurses - who do work - it could have paid for!

[Bcol in reply to PMRpro]

It would be quite nice having that sort of money to spend

[SnazzyD]

I certainly feel cast adrift. Can’t get through to GP very easily now and none of my issues are desperate but I now have a collection of them and no monitoring. Half the time I play guesswork with my other condition and annually I’ve had a telephone conversation from Haematology and Rheumatology. These calls are thoroughly unhelpful as it is a new person and not having any visual cues, it’s hard to read them and make me a real person to them. Last week while telling the doc something I could hear her audibly sighing before she interrupted me and said I needed weekly blood tests for 6 weeks to see if I really have my condition.

[PMRpro Ambassador in reply to SnazzyD]

I hope you told her how unprofessional that was ...

[SnazzyD in reply to PMRpro]

Sadly I was having a weak and feeble day with post vaccine side effects. Didn’t have it in me other than to weep afterwards. I think there was someone else there and it struck me afterwards about consent to having others in the room during telephone consultations.

[DorsetLady PMRGCAuk volunteer in reply to SnazzyD]

Doubly unprofessional!

[Maisie1958 in reply to SnazzyD]

Sorry didn’t really mean to like this but just sorry you had to go through this 💐x

[SnazzyD in reply to Maisie1958]

I know, it’s a one size fits all like

[PMRpro Ambassador in reply to SnazzyD]

Grrrrrrrrrr ...

[Bcol]

Apologies for lack of posts/replies here but I've been at the Rheumatology Dept at the hospital all afternoon with suspected DVT in my right thigh ( sent by my Doctors). Still here but very impressed with the service.

[PMRpro Ambassador in reply to Bcol]

Oh joy! OH had a femoral DVT - had probably had it for weeks before he appeared one morning to ask did I think his foot was swollen. I did and sent him off to work with a flea in his ear. There he asked one of his technicians to have a look with the ultrasound - and an hour later he had been admitted and was phoning me to admit I'd been right. The technician said "Oh yes, of course - it'll be fine... OH!!!" It wasn't.

[DorsetLady PMRGCAuk volunteer in reply to Bcol]

Hope you’re not there much longer, and everything gets sorted satisfactorily. 🌸

[Bcol in reply to Bcol]

Back home last night, not DVT probably a badly strained muscle, so a good result, Right thigh is 3cm larger than the left one. Very impressed with the service, very comprehensive physical check up and blood tests.

[Lollybygolly]

Abandonment doesn’t cover it. My doctor is now my drugs dealer. I decide, choose and he supplies. It’s free but I’m offensively independent of medical support. I’ve lost faith in my GP. Long story but it started after my first jab when I ended up in A&E 3 times with crushing headaches, face pain, eye bulge, Misty vision on one side and painful jaw. A locum organised 60ml pred which helped, then blood tests. GP downed it to 5mg and I resisted, collapsed in the park. It’s been a farce. Lucky for me I belong to this group which helped me or I wouldn’t be alive. I’ve requested my medical records and there will be a balancing (or showdown) where I regain some respect both ways. I’m still not right but careful use of pred (9mgs now) and vitamins have restored me to operational viability at least. Thank God for You All.

[Bcol in reply to Lollybygolly]

Sorry to hear you've had such a rough/scary journey but at least you now seem to heading in the right direction. Just need to get your docs sorted now.

[Nextoneplease in reply to Lollybygolly]

This sounds awful 😳 Glad you’re somewhat better now. Keep up the good work with the pred and vitamins and I hope you have a better doctor/patient relationship before too long 🤞x

[Lollybygolly]

Thank you. I might sound bitter but I’m not. I was resigned but once I get my medical records I shall resume my attempts to get myself treated by a professional.

[calicojoy41]

OMG I came to the same conclusion this week about my rumy so I got my records and will ask my GP to take over as she is wonderful and caring and very through in taking care of my problems!!