On 31st August a press release was sent out it contained this statement:
"Five women are launching a trans-Atlantic survey to help find the causes – and cure – for two mystery illnesses, PMR and GCA which mainly affect the over 50 ‘Baby Boomers’ and must cost the UK many millions of pounds. "
Today in the Google Alerts box was this link:
healio.com/rheumatology/vas...
Read it and smile.
PS The survey is still running...........quantisurve.com/cgi-bin/pmr...
INPATIENT stays???? Wonder how many PMR patients in the UK end up as inpatients????
It may be in France but not heard anything about it in England.
Maybe they will ban PMR and GCA.
Oh dear, so now we're a burden.... There is definitely a personal cost to those who've had to give up work but as for healthcare costs, we in the UK pay plenty of tax to fund medical treatment. As most of us are in our fifties and sixties, we've definitely covered that bill...
No never a burden - but there are additional costs to both the person apart from the NHS.
That’s France for you, I see no interests declared by Dr. Mounie.. Having recently lived there for fifteen years, I suspect he is funded by one of the Health Insurance companies.Costs are rising prohibitedly and who to blame ???, as they cast about -those of advancing years, of course. I can see in the future insurance will come with a heavy premium for PMR in France.
In UK?? NHS websites still adhere to 18 months to 2 years. Perhaps they don’t want to face up to the fact that it needs to be recognised for what it is, and the added costs incurred.
Why are rheumatologists/GPs not being educated in the disease, there are studies out there, thank goodness,
But, NHS sites do not reflect them.
Would save a lot of anger and frustration to patients, if they did.
Oh good, let’s bring on a Patient Forum, haha. As long as GP sits in on meetings, and learns something from those who have experience of the disease.
Thank you once again to all you wonderful people who give you time and advice.
If this site was adequately funded by NHS, then patients could be directed here for help and advice.
As Dr Gilbert said at the Conference last month, a GP’s salary is £72,000 p.a surely it would be cost effective to have an on-line dedicated PMR/GCA doctor, or two... to. As patients cannot get a GP/Rheumy, within weeks/months.
I just wish ‘They’’ could get a handle on health care and think outside the box.
First impression is that this is suspect and has to include in patient stays, like PMRpro, I want to know how many patients are hospitalised and if they are one has to question why the medical response has been too slow to prevent complications. Better education and rapid response is surely the answer rather than referring to us as burdens. I paid for my own Temporal Artery Biopsy, consultations and DEXA, the cost has been nowhere like what is quoted. For those who do not have a TAB the costs are only the drugs and they are comparitvely cheap. The true cost of this disease is borne by ourselves 🥂
Bear in mind though that this is a reflection of a very different system. Here in northern Italy I spent a total of 3 weeks in hospital having my atrial fibrillation sorted out to their satisfaction before it was considered it was safe to send me home. A friend in the UK with a similar emergency presentation was sent home after a few hours and on aspirin - which is useless in a/f.
When I had my hip done, they tried to send people home as soon as possible as they were so worried about them getting MRSA or such like which can be devastating for hips. The main hospital also used a smaller hospital with no A & E so nasty bugs did not get into the orthopaedic ward. So I suppose it is not just costs.
They do the cleaning properly here...
For a while they used outside companies as they do in the UK now. The standards fell and it was decided that the companies could be allowed to clean the stairs and lobbies. They were banished from the wards and the equivalent of enroled nurses do it now - so have the background knowledge to know how important cleanliness is. OH's privately employed cleaners in the UK, formerly hospital employed and with Standards, brought their own cleaning liquids to supplement the 1 squeeze they were allowed of the supplied rubbish for the whole department.
It has been said that the best way to banish MRSA is Proper Cleaning. And above all - BEDS! Hospitals over here have drive-in bed washes where the beds are washed like taking your car through the carwash. No hot-bedding here.
I love the idea of bed washes. My cleaning lady was in hospital recently for three weeks and said that the dust under her bed just accumulated. Being a feisty cleaning lady she made a fuss, perhaps that is why it was not done!
When I was in hospital cleaners did come in once a day and moodily pushed a broom thing round. We did not have the nurses doing anything except for changing beds.
They do the floors and damp dust EVERY day, just like it used to be in the UK.
Oh to be in Italy, UK seems to have given up somehow. They were talking about young people's Mental health problems on radio today and for a lot of the complaints you could have just swapped the words to GCA/PMR and rheumatologist and you would have got what is happening in our area too.
Sounds great but isn't Italy a financial basket case in waiting! Different it seems at the moment!
Italy can be - but it isn't any worse than a lot of other places if the truth were told. But I don't live in Italian Italy - I live in South Tirol which is an autonomous region and part of the financial backbone of Italy. The north is rich, the south is poor - and that is part of the problem!
An Autonomous region! Almost gone in Blighty! Just read the paper! One a week now & that's too much ....! Brexit...Brexit...Brexit.... Europe...etc.
I had my right hip replaced yesterday, Monday, at 9pm. In a private hospital under NHS funding, in UK. Spotlessly clean, well staffed and very attentive. Surgeon visited me at 8 am this morning after finishing op at 9pm! Also visits from pharmacist, anaethetist, nutrition team and physiotherapist.
Unable to sleep last night, just snoozes, got light headed and called nurse who made me a pot of tea and I ate water biscuits. The porridge breakfast with honey was good. I do have to remind them my medicine time, my personal are in a locked box in my room and Drs have prescribed other painkillers.
Room 102, Valerie
I am wondering about the toll of on costs incurred to settle on a diagnosis of PMR. This is where I have cost the NHS. Since there is no definitive test when symptoms started I was given the following during the elimination testing - x rays on knees, MRI on lower back / pelvis and dx scan, as well as numerous blood tests. I am also down for pain management injections to reduce pain in neck shoulders as a result of inflammation which could be pred induced (dowager hump) or PMR inflammation.
More recently, due to blood in urine often caused by UTI - side effect of autoimmune disease, I have had a telescopic investigation (all clear) followed by CT scan to look at upper tract (waiting on results but am convinced it is a red herring). Blood in urine co-incided with PMR and pred, so may be related or totally unrelated. We shall see........... In addition a sight scare lead to A&E visit to test for GCA through blood tests and a visit to stroke clinic to check it wasn't a TIA.
My point is that many of these additional tests are coming up clear, resulting in assumptions it must be the pred or PMR.
I rarely saw a doctor, let alone a specialist, previously. I only have PMR along with wear and tear and yes, I am costing the NHS a fortune! In my view, these additional costs are incurred because very few 'specialists' know enough about PMR to definitively attribute the different symptoms to the condition with great confidence.
In addition, as testaments from members of this community so often reflect, these so called experts advise incorrectly on tapering, resulting in flares and longer term meds that would have proven unnecessary were greater caution applied to slower reductions.
To reduce the costs long term, they need to throw more into research, educate health professionals to be both proactive and confident in recognising symptoms whilst also educating professionals in effective tapering plans in the shorter term.
To reduce the costs they need to get a decent up to date computer system and sort out the dreadful waste usually caused by bad management. Getting rid of some of those management consultants too might help.
Listening to the patients in the first place and then treating the patient not the textbook would help.
It certainly would!
I was in hospital for just over five weeks before being diagnosed with GCA/PMR. I had every test you can think of. Was in awful pain with GCA but a rheumatologist didn’t think that was my problem. apparently I didn’t tick all the boxes!!! Eventually I was moved to another hospital and rheumatologist there immediately recognised my symptoms and high dose steroids were started. I believe he saved my eyesight.
The cost of my hospital stay and the many extremely expensive tests must have been huge!! Thank you NHS
I despair! I've just said to someone on another thread - there is no one size fits all in PMR/GCA. How anyone can get through medical training without understanding that in medicine there are no written in stone symptoms of any illness. Biology isn't like that...
Don't despair, it was so much worse 11 years ago and you and others have persistently help to get a better understanding, yes even with the medics. 11 years ago little or nothing now...........
It is a slog, but people who were bewildered, frightened and who thought they were alone now they know they are not and they have been helped. Just take a look at the increase in numbers on here and Patient Info.
My father reckons it is because they are taught what the perfect body should be as a base and so do not then think of the sick body as they should. Could be a load of rubbish but perhaps food for thought!
Once upon a time they learnt physiology but some of us have our doubts now (including physiology lecturers at universities) . But the whole point of THAT was that they should then understand the pathological physiology they meet. I did ...
It seems to me that PMR patients would be ideal candidates for these new 15 patients at a time consultations, assuming that it's a doc chairing the consultation and not a Health Care Assistant - heaven forfend - that I have seen mentioned!!! The doc would then learn that not everyone has the same symptoms at onset and that the twists and turns during their time with PMR are not the same. Perhaps they are introducing these types of consultations so we the patients can fill the gaps in medical training - just a thought!!
I spent 5 days in hospital with sepsis, probably steroid induced. 2 cataract operations. Endless x rays aimed at proving I had arthritis. MRI Scan. Now osteoporosis requires visit to yet another clinic. Dexa scan after (!) 2 compression fractures. Endless blood tests often duplicated because GP IT does not tallk to hospital IT. Now after nearly 3 years another top consultant has agreed on diagnosis of GCA PMR. A lot of these investigations might not have been necessary if hospital had managed the recommended appointment within a week rather than 5 weeks later.
Perhaps ministers should ask patients how to make NHS more efficient?
Or perhaps not, the answers would not reflect well on their pet policies!
Oh dear,l can only say that PMR/GCA are just as much entitled to funding as any other health condition,at least it is not self inflicted like smoking or too much alcohol.I have no idea how l got PMR.maybe it was statins in which case it was the doctors fault.They clean my local hospital to a very high standard ,and bed linen is changed daily,there is a lot of money wasted by the NHS but cleanliness is extremely important so they should not cut down on that,but there does need to be more care taken on how and where money is spent.
GCA then PMR?
PMR/GCA
GCA / PMR 
GCA? PMR? Symptoms
For patients with GCA vasculitis
