In a perfect world we would have....

Trish9556

A designated GP and nurse in each and every doctor's surgery, an arthritis ward in every hospital and a specialist arthritis centre in every county treating in patients and outpatients. Imagine all the hip (other joints are available) surgeries that could be carried out quicker than at present if there were. These units would have operational phone lines that worked and got through to a real live person.

Pipe dreams I know, but it would be nice! What would be on your wish list?

Love n hugs

Trish xx

Emmasknackeredjoints

Longer appointments for complex needs which would have BOTH RHEUMATOLOGY AND ORTHOPAEDIC in the same clinic .

Emmasknackeredjoints

@jamieA something for a little fun x

Hope ur well.

mosborn11

Painkillers and medications without terrifying potential side effects!

jamieA

Hi @Emmasknackeredjoints

I don't think they'd need to be in the same clinic (though that would be good) but simply talk to each other directly. In my health board area everything seems to go through your GP. So if rheumatology determine that a joint has deteriorated to the point it is 'a mechanical issue' they tell you to go to your GP to get referred to orthopaedics. In my present case I saw rheumatology in March 2023, contacted my GP immediately, my then GP put in a referral to orthopaedics - but as a routine referral unbeknown to me - which had a 58 week lead time. When I chased this up with my new GP in November she put in an urgent referral and I was seen in December. I received a letter in January stating I was now on the knee replacement waiting list but it's a 107 week average wait. That's almost 3 years in total. If they'd talked directly there wouldn't be this issue.

I took a heart issue 8 months after my PsA diagnosis and the cardiologist put me on heart medication that shouldn't be taken with NSAIDs but didn't stop my NSAIDs. I found out by reading my discharge letter, contacted my GP who didn't want to know and eventually got confirmation from a pharmacist that under no circumstances should I be taking the NSAIDs. I called the cardiologist and said he surely should have spoken to rheumatology and in response he said 'in an ideal world yes - but that's not how the NHS works.'

Later I also needed a change in heart drugs which took about 6 weeks to implement. When I chased this up I found out the cardiologist dictated a letter to my GP on the day of my appointment. His secretary typed it up but it then waited in excess of 3 weeks for his physical signature. It was then sent by post to my GP to wait a further week to be read and the prescription altered only for it to land at the pharmacy in the middle of their 4 week drug dispensing cycle so no changes were made till that ended.

So my wishlist would include :-

• different departments talk to each other directly especially for patients with co-morbidities
• communicate electronically
• patients should be able to electronically access their medical records easily

Trish9556

Hi all

@Emmasknackeredjoints

Longer appointments should be given as standard - I don't think I've ever been kept to my 10 minute time slot though apart from one snotty nosed little pipsqueak of a physio who didn't apologise for keeping me waiting 45 minutes then tried to kick me out after 10 minutes as my time was up! I have refused to see her again as she was as much use as a chocolate tea pot and wasn't interested at all in what was going on with my joints.

If we did have dedicated Arthritis centres then we would be able to be seen in the same place for all of our arthritis issues.

Yes, this thread is for a bit of fun but I'm looking to find an extremely wealthy multi billionaire who might fund our wishlist :)

@mosborn11

Agreed, some meds have awful side effects and I consider myself lucky not to be able to take some of those due to other health issues. Does it seem that the ones that help most, cause the worst side effects? Maybe there are alternatives that don't cause the side effects but they're more expensive?

@jamieA

I don't know why different departments refuse to talk to each other - they're all there to look after us and yet they all seem to think that their department is more important and they don't need to talk to anyone else. Everyone else is obviously psychic? I have been lucky to see 2 consultants/surgeons who have referred me quickly to other consultants/surgeons whereby I have jumped up the waiting list but that is rare. I was recently re-referred to my hand surgeon for possible osteo necrosis on the hand he operated on in 2020. They suggested I should have a guided injection while I was waiting for an appointment to see him. The GP referred me to MSK for the injection with the surgeon's note and MSK subsequently refused the injection because I hadn't been seen by them. 4 months after referral to the MSK for the injection and after a lot of phone calls from my surgeons secretary, GP and me, I'm getting it tomorrow. It would have been so much quicker and more efficient if I could have booked a guided injection with X-Ray at Stoke Mandeville who did all my previous guided injections into my hand but this is impossible apparently!

The surgeon who did the surgery on my neck always dictated his letters while I was with him in clinic but the letters still took 8 weeks to arrive electonically at my GP surgery. I think they need more secretarial support! It still takes a couple of weeks for that letter to be read and uploaded to the Patient Access/NHS app. Maybe I should offer to type and send my own letters from my consultants. I imagine letters don't get digitally signed by the consultants secretaries as the consultants don't trust them to get the letter right? As an ex PA I can't think of any other reason.

I can access my basic medical record on Patient Access/NHS app where I order my repeat prescriptions but I am still wondering why different health regions use different software? For example, Oxfordshire cannot see my medical record as I'm in Buckinghamshire although there are shared services. Totally ridiculous and I seem to remember conversations in the media where records were going to be centralised with one system for the whole country. Or did I imagine it in a Tramadol induced brain freeze? Saying that though, I remember when Bucks first transferred our records to an electronic system I suddenly had all these unknown issues that I strugggled to get removed. I still get records for other patients uploaded onto my record and these are a nightmare to get removed even though its a bad data breach which could be seen as a sackable offence in any other industry (results of mammograms showing with the patients name, address, dob and results - luckily negative but what might have happened if positive I dread to think).

I think I ought to get my big inflatable mallet out and share it around so our messages might get through? In the meantime I'm continuing my search for a wealthy benefactor who is hopefully arthritic and willing to support our wish list.

Love and hugs to all

Trish xx

Jewels1973

Rheumatology Departments that you can actually get through to!

Now I’m reading all the comments I’m going to have to talk fast and shove a massive note with all my ailments in it, I have Lymphodema and ME as well.

@Trish9556 If you could pass me the inflatable mallet near to the 6th March when I have my first NHS Rheumatology appt maybe I could stun them into listening to me also if you find the wealthy arthritic benefactor please tell us 😉

Glad you have a sense of humour about all this you made me smile and I haven’t been able to do that in a long time & you are welcome to wade through any of my posts.

Also in a perfect world no arthritis or offshoot of it.

Love Julie x

stickywicket

@Jewels1973 , thank you for reassuring me, with your last sentence that the world hasn't gone crazy.

In everyone else's perfect world ARTHRITIS STILL EXISTS?

Really?????

Trish9556

Hi all

@Jewels1973

I need my inflatable mallet on the 5th when I go to the hip clinic but I will pass it over to you that evening.

I have found a piece of paper typed up (I'm a retired PA so everything is typed lol) that has, in case they don't know who I am, my name, address, dob, NHS number (yes really, they might get me confused with another woman), all my meds and all my medical history (mine is actually in excess of two pages) on it and I give this to the person on the other side if the desk when I see them. This is also handy for pre op appointments and I update it as necessary. That way they can't say they didn't know as the piece of your previous paper is in their dossier on you.

I find a sense of humour helps. If you can't laugh at yourself you often go the other way and cry.

Maybe that person sat in the opposite side if the desk is Mr blobby?

I do tend to read all the posts here and comment where I find it useful. I'm nosey lol.

@stickywicket

Of course there should be no arthritis but thought I'd start with the attainable boring stuff. We all have to start somewhere and targets should generally be achievable so I erred on the side if caution. Apologies. It's on the list I hope with all the gene testing that goes on the faulty gene that should be tried in court and should banished to some jar in a lab all dusty and forgotten. That way we could be given some jab or magic sweets as a child, maybe a gummi bear, to prevent us ever suffering again.

Maybe we should give the faulty gene a funny name rather than the boring name scientists give out? Mr multiple spindly legs who has been used as knot practice by the local scout group would be your starter for 10 in the words of if Bamber Gasgoine. Does anyone remember these people or is it just me? That name is a bit too long though so all silly suggestions welcome.

Meanwhile the lust is getting longer and the search goes on.

Love n hugs everyone

Trish xx

Jewels1973

@Trish9556 Not nosey at all you are brilliant you’ve helped me a lot today and you can definitely have the inflatable mallet for that day you have an ace sense of humour and you are right you have to really with everything that’s going on. Really you’ve been fab. Julie xx