gettingitrightfirsttime.co....
I haven't read it yet - 140 pages - but I thought some of you might like to have a look. I look forward to the claims - DO they get it right first time? Many of us would say not - so what does the report say.
PMR is mentioned in the Executive Summary as something that could well be better managed outside the hospital setting and there is a RRT (recommended referral time) of 8 weeks. I shall look forward to reading the more detailed assessment 
Thanks for that PMRpro, when you have read it perhaps you can provide me with the take home message. My eyes glazed over after I got no further than page 3.
Jump to p7 and read the Executive Summary - that's all anyone else will look at!!!
Wishful thinking or really achievable…..would be good if it was the latter, but probably the first - many trusts couldn’t met targets pre Covid, so what chance now?
It must be very depressing and frustrating for those working the NHS.
But obviously some manage it - so where's the difference one has to wonder?
I guess, some have better management, better medical staff, better funding…and probably location comes into it as well.
Well given OH's CEO ... been up for fraud since, departed rapidly on gardening leave!
Also a repeated message about remote contact with Rheumatologists....it said the NHS is aiming for 30 % reduction in attending appointments...(I think I got that right)...when Secretary rang me last week to say could I do a video call, she said this is the way the NHS is going now.....well excuse me, it's already here. Think maybe we will be dealt with in future at pain clinics....let's just hope they will be clued up on steroids!.....oh silly me...😕
Thank you, very helpful.
Well the rheumatology area does not come over as a well oiled machine. I think the thing that worried me was that the first thing I saw was the contents containing What is Rheumatology? If they don’t know God help us. They do say that GCA is a medical emergency, however I cannot see their recommendations for GCA and DMARDS ever being implemented properly. I must stop being cynical.
I am puzzled - isn’t PMR an inflammatory condition? why are they saying it should be lumped with non inflammatory conditions such as hypermobility, fibermyalgia, etc, especially when it is so closely related to GCA and small vessel vasculitis? And as a diagnosis of PMR is often the start of increasingly complex health issues related and unrelated to other rheumatic and MSK conditions shouldn’t it be monitored closely by specialists for statistical analysis at very least? They also ignore the importance of doctor to patient emotional support element in physical healing, something that video calls with usually a stranger cannot provide? It is a shambles for my care and a factor since Covid disrupted services at The Royal Free as my case has been all but totally abandoned.
For management, they don't seem to feel it requires accommodation at hospital level - but I get the impression they want the care to be at local level with the support you mention being provided there, making it more accessible and convenient in many ways, rather than removing it. It is the aim for a lot of things, Care in the Community, with peripatetic clinics. If the NHS could get its act together with their IT set-up the collection of data would be a lot easier!!! Most people would dispute they get good doctor/patient support in the current environment - they don't manage continuity of care as it is.I think you underestimate the role of video consultations - already in use in the Highlands and Islands.
do you think they are planning to widen the scope and capacity of local MSK clinics, for instance?
early on they state that PMR is non-inflammatory condition and should be provided in primary and community care settings. This would help to: bring care closer to home for these patients, in line with NHS Long Term Plan ambitions;
reduce waiting times for conditions that need urgent rheumatology assessment;
ensure that every patient receives the right care in the right setting to meet their needs.
still reading but that sounds wrong.
Read it again. It says "non-inflammatory ... such as back pain, fibro and hypermobility, as well as gout, PMR, osteoarthritis and ..." - gout and PMR are inflammatory, OA is becoming considered to be inflammatory. PMR is inflammatory since they insist one criterion is raised inflammatory markers!!!
understood see below my reply to me haha. I think they mean well but it all starts from good and rapid diagnosis. This means they need to really understand how debilitating and multi symptomatic this condition is. That needs a good spread of disciplines to help recognise them and understand.
Depressing so far. Guess inflammatory blood condition isn't a rheumatology urgency. They do include GCA but not PMR. They need to be more holistic in assessing the symptoms and diagnose quicker. If they had this they wouldn't pussy foot around. If they don't have clear diagnostic pathways across all NHS trusts, which they DON'T, that's quite obvious, then this is just another hot air exercise. I'm glad this website exists with all the good people here. I think this is most peoples best hope for recovery.
This is their early "mission statement"
We have therefore narrowed our scope to those conditions that have the greatest risk of avoidable harm if they are not assessed and treated urgently – including inflammatory arthritis, septic arthritis and rare autoimmune diseases such as vasculitis and connective tissue diseases. Our recommendations are focused on strengthening the pathways for these conditions to ensure we meet national standards for early assessment and quality of care.
Improving early management of inflammatory arthritis
Over 20,000 people are seen in rheumatology clinics with suspected early inflammatory arthritis (EIA) every year.
These issues highlight the need for rheumatology units to work more closely with primary care to improve local pathways, break down barriers and support good referral decisions.
We think prioritisation of EIA could be improved by having clear and consistent referral criteria to support GP referral, or a decision not to refer, as well as working together with primary care to refine referral processes to improve local referral ‘yields’. As mentioned in Improving management of referrals, page 40, GPs who are not confident of a diagnosis may be able to get a second opinion from hospital-based specialists through an Advice and Guidance (A&G) service. This would help avoid unnecessary referrals where EIA is unlikely.
I suppose it is more they are differentiating between GCA and PMR since there is no arguing that GCA can result in severe avoidable harm - "just" PMR doesn't which distinguishes it from inflammatory arthritides where joint erosion can be avoided by early diagnosis and treatment. There is no such long term damage in PMR. Unless it progresses to GCA without the red flag symptoms which far too many GPs can't/don't recognise. So education there is essential.
That's certainly true, although to be perfectly honest, when I was doubled up in a foetal position with 24/7 headaches I thought the end was not too far away. I had almost given up any hope and I don't think I will be alone in feeling that way. If only the Doctors and Rheumatologists and all the other specialists knew just how depressing and physically debilitating these conditions are they would certainly shift their attitudes and responses. That is probably the best way we can help influence the future of diagnosis. Is it possible that this forum could come up with a working diagnostic profile rather than wait for the professionals? I would also like to contribute towards a recovery program for rebuilding lost muscle and fitness. I certainly intend, when able, to follow this pathway and would like to collaborate and help others towards a better future. I don't seem able to be other than positive because the alternative is too unappealing.
Not really - because you have to have the proof of the associations. But I and a few others are involved with the development of outcomes measurement - and to do that you have to define a model of the disease. It isn't quite the same but it does try to get everyone singing from the same hymnsheet so that work done in different places is comparable. But it takes a lot of time - and money which is hard to attract for an illness that is perceived to only affect elderly, mainly retired, grandmas. We have limited economic impact - though as the retirement age rises and they realise that under 50s also get it, that will change. What we need first more than anything else is not a "better drug treatment" but a biomarker that is specific to PMR and GCA so that you can then work on management. There are almost certainly different versions - not all the same even if superficially they look similar.
That sounds really interesting if out of my depth. I hope you progress. What is the scale of the financial cost to progress and is there anything we can do collectively to assist. Timewise can't help , likewise technically. Meanwhile we plod on day to day at least knowing what we have and learning how to work with it.
Being a member of the charity is a start - that works on education of patients and medics and there is some support for research. jinasc's NE charity provided funding for a baseline study that eventually got NHS funding for the "ears" work and also some funding originally from them is earmarked for GP education. But Covid got in the way. Depends on what it is - but medical research doesn't come cheap.
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