Southend University Hospital NHS Foundation Trust – Preventing blindness by fast-tracking suspected Giant Cell Arteritis patients to immediate treatment
Leading edge UK rheumatology services revealed
Winners of society best practice awards revealed
The winners of the 2016 Best Practice Awards in Rheumatology and Musculoskeletal Disorders (RMDs) have been announced, with this year’s crop of winners showing the breadth and depth in quality of services across the UK. All winning projects were able to demonstrate improved outcomes for people with RMDs, better co-ordinated care and reduced costs.
Fourteen winners have been chosen across three categories: Outstanding Best Practice, for mature programmes that have consistently demonstrated excellence in transforming the lives of patients. Best Practice, for initiatives demonstrating innovation and resourcefulness in changing clinical practice. This year we have added a new category of Emerging Best Practice for sites that have responded quickly to the challenges facing the NHS locally and nationally with novel approaches making a real impact to patient care.
Building on the success of the 2013 awards, applications for this year’s awards underwent robust economic analysis, which looked at the impact of the services on clinical, financial and patient reported outcomes. Site visits were conducted involving a multidisciplinary team of clinicians, health economists and patients who assessed each site against established criteria. The winning sites were determined by a panel of experts, including representatives from Royal Colleges, NICE and patient representatives, in addition to senior BSR members.
Dr Peter Lanyon, President-elect of BSR and chair of the judging panel for the awards said: “We are used to seeing excellence in patient care across the UK’s rheumatology units, but the standard of award entries was particularly high this year. It was a great privilege to chair the panel and see so many examples of innovation in the delivery of clinical rheumatology services from across the UK. The BSR is committed to helping its members attain high standards in their clinical care; these Best Practice Awards are a great opportunity to share and promote ways of achieving this.”
A view echoed by fellow judging panel member, BSR Chief Executive Laura Guest, who remarked, “the panel was greatly impressed by the range of innovation across the rheumatology community. Services are rising to the challenges of growing demand and dwindling resources, with novel ways of delivering services that are having a real impact on patient care. Our services should be proud of their achievements. ”
The Best Practice Awards aim to recognise excellence and innovation in patient care and are designed to not only inspire change in clinical practice, but also to have a wider influence on policy and commissioning. With this in mind, all winning entries will be made into case studies setting out how each project developed, the challenges faced and how these were overcome, and the impact the initiative has had on people’s lives.
This year's winners, who will be showcased at the annual conference in Glasgow, are:
Outstanding Best Practice
Southend University Hospital NHS Foundation Trust – Preventing blindness by fast-tracking suspected Giant Cell Arteritis patients to immediate treatment
University Hospitals Birmingham NHS Foundation Trust – Coordinating a person-centred pathway to high quality care for people with rare autoimmune disorders
Staffordshire and Stoke-on-Trent Partnership NHS Trust – Evidence based care - translating research into changes in clinical practice
Central Manchester University Hospitals Foundation Trust (Manchester Royal Infirmary) – Virtual multidisciplinary clinic to improve medicines management and reduce delays to drug therapies
Scottish Paediatric and Adolescent Rheumatology Network (SPARN) – Reducing variation and improving the quality of care for children and young people with rheumatic conditions
Best Practice
South London Health Innovation Network – An integrated rehabilitation programme for chronic joint pain
Derby Teaching Hospitals NHS Foundation Trust – Empowering patients to be their own personal trainers to improve function and strength
Scottish Society for Rheumatology – Streamlining audit data collection on a national scale to reduce variation and improve care
Emerging Best Practice
East Lancashire Hospitals NHS Trust – Improving access to co-ordinated musculoskeletal rheumatology and pain care in the community
Royal Berkshire NHS Foundation Trust – Improving the co-ordination of care for people with chronic pain
Oxford University Hospitals NHS Foundation Trust – Paediatric Virtual Gym: using technology to engage children in exercise
Guy’s and St Thomas’ NHS Foundation Trust – One-stop multidisciplinary clinic for patients with fibromyalgia
Newcastle Hospitals NHS Foundation Trust – Integrating service, audit and research data to improve patient care
Barts Health NHS Trust (Whipps Cross) – Streamlining diagnosis and access to treatment for people with inflammatory back pain
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Written by
Ruadh
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It's great, will raise the profile for GCA. Prof Bashkar Dasgupta has done so much for the GCA problem, and internationally, working with Prof Bienvenu, CHU De Caen, setting up centres of excellence in France re id'ing / treating GCA. A really good step forward. So heartening.
Can I just point out this is from 2016 - and the fast-track approach is slowly being set up. The original paper was published in 2013 or so. Google "fast track gca pathways" to get a whole load of links which indicate which hospitals may have it if you look closely enough!
But the impression I get is that the crucial part of the fast-track pathway is still missing - the awareness training for ALL GPs. Because without THEM being able to recognise the potential problem, all the fast tracks clinics in the world won't help the patient who can't get their GP to listen.
This was being talked about somewhere else, how many people lose their sight, and I wanted to say up to 3,000 people per year in the UK alone lose vision but I couldn't find a reference with a figure. Here it is:
"With incidence of 2.2 per 10,000 patient years, it is estimated that 12,000 new cases of Giant Cell Arteritis (GCA) are diagnosed every year in the UK of whom 20% lose sight permanently."
One of the important elements of fast track is ultrasound diagnosis rather than biopsy but I have been told that hospital trust in the UK are loath to use it as they get less income from the NHS for doing a scan than a biopsy!! Seems funding is more important than saving sight.
There is also the factor that you have to have been trained for the u/s - which takes about 6 months to be competent and isn't a skill that is included in most vascular labs which would be the obvious NHS source of technologists. It is a very expensive use of doctors - and they were/are the only trained people from the TABUL study. The TAB is handed over to the vascular surgery team - who often use it as training material for new surgeons (with obvious detriment to the results). The result is often only as good as the surgeon - who have variously been known to macerate the sample or even take a vein not the artery! I have to say, the income from a TAB versus u/s does seem to be a rather spurious reasoning...
Luton and Dunstable Hospital offers the fast-track, the u/s scan was being done by Dr Quick at the time of it being established (of Quick and Kirwan, the "Bristol paper" fame) so if she is on holiday or leaves - what happens then?
Interestingly scans at the Nuffield Orthopedic in Oxford are carried out by a technician from Portugal who comes from a radiography background. When I had my scan it was done by an Italian doctor who was there on a six month secondment. A week later I went back to act as a guinea pig for a training course for doctors/technicians from around the world. I was tested by 8, 3 of whom were from Italy where they are very keen to develop the technique (I know one of the leading authorities on PMRCGA is Italian and I think based not far from you). I know the girlfriend of the guy on Oxford is quite keen to return to Italy sometime soon so what happens then? After the first six months I haven't had a follow up scan (despite a large flare for over a year because he has been away for some reason and there is no back up. I am told by Prof. Luqmani that PMRGCA is more common than rheumatoid arthritis but gets far less research support or patient support.
We have a big message spreading and education role to play
IMHO THE original leading authority on PMR is Italian - but from Genua I think. Salvarini. This generation guru is from South Tirol (a German speaking region who do not generally regard themselves as Italian and where I live) and now my rheumy.
Be worried - in the London area up to 25% of NHS staff are not of British origin and well over 10% are from the EU. Those who don't have very tight ties to the UK no longer feel welcome and are returning home. It isn't just a major shortage of plumbers that threatens!!!
The PMR/RA situation is as much as anything because PMR is perceived to be a disease of the elderly - how many doctors tell patients "you are too young, you have to be 70 to have PMR"? The vast majority of patients in the past were already retired - women and 60 or over. So economically they didn't count. RA is suffered at all ages. Things will change - if there is an NHS to change their attitude.
One of my best friends is from the Sud Tyrol (Kalle - Karl Heinz - is a good Italian name) has worked for many years in the It department of Swarovski in Wattens in the Inn Valley in Tyrol!!
Where from in Suedtirol???? I know Wattens fairly well - my husband works a bit with a company in Innsbruck who have links with Swarovski and have an outpost near Wattens, next village I think. Plus it has our nearest camping store...
I'm not sure where Kalle was born but he went to University in Innsbruck to read Engineering in the late nineties and has stayed there though travelled quite a lot for Swarovski (has a Norwegian wife and son born in the USA who now has triple nationality (though I guess he may be able to claim a fourth - Austrian since he has spent most of his life there). Kalle's office is actually in Hall in Tirol, about 8km from Wattens towards innsbruck. I worked on a retail project with Swarovski in 2015 and 2016 which meant spending many happy times in both places - The factory in Wattens is something else and I am told the new visitor centre which they were just about to open when I was last there is well worth a visit. My love affair with the Tirol goes back to the early seventies and many family holidays were spent there both camping in the summer and skiing in the winter so have great respect for your life in Suedtirol
We had a "do" at the old visitor centre and restaurant at a meeting 5 years ago I htink it was. Really ought to go sometime - except we'd have to pay this time!!!!!
Which is why Southend was so successful - because all the GPs in the area were given information about how to look for the GCA signs and about visual disturbance, and the fast-tracking system that was in place. If this happened all over, then the number of people with sight loss could be reduced to almost nil.
Which is the idea - unfortunately it costs a lot. And theoretically yes - but you still have the unknown of the patient. Plus what is called occult GCA where about a fifth of GCA patients first note anything is wrong when they wake up blind. There was a lady on another forum some years ago who had been sat on the phone speaking to her daughter when she had severe visual symptoms over a period of abouthalf an hour. She didn't mention it to her daughter, she didn't dial 999 and waited nearly a week to tell her GP. She was lucky as far as I know.
A NE hospital, Gateshead I think, also tried to run a GCA fast-track a few years ago. They did so for a time but the sums simply did not add up to keep the TAB spaces available for immediate use when required. Any hospital could do it by teaching GPs to call a rheumatologist immediately they suspected GCA and sending the patient to A&E with a letter once they were expected. But they simply don't add up 2 and 2 and make 4. Paramedics in Yorkshire are taught to recognise potential GCA - and treat those patients the same way as an MI or stroke. Which is what should happen.
There's a 8-year time lag - and it won't cover medics trained outside the UK. And I have watched doctors chuck notifications on Guidelines into File 13 "I haven't time to read that..."
All of that, but...still got to keep hammering the nail until it bites. GPs are pretty much pushed to breaking point, hundreds will soon be retiring - insufficient coming forward to fill the gaps ! Horrendous scene all round. Only thing we can do is to make as big a profile as possible and to make as much noise as possible. Involve more of the media ? Incorporate into the soaps - that is one way to get the word out. Public made aware helps raise the profile. Radio programmes. Editorial in magazines. Only way to make it happen. Just as the Low Dose Naltrexone is at last being recognised.
Many difficulties. But the push must go on plus, with the realisation of the excellent good that this forum does in raising awareness and in the huge support for members. Big kudos.
That’s always been my concern behind the fast-track pathway -how to educate the doctors to recognise GCA in the first place. I saw three different doctors over as many weeks with the classic classic symptoms of what I now know was GCA - one said it was an allergic reaction to my BP medication and stopped it; the second one gave me anti-sickness pills for the vomiting; the third one (a partner) admitted he didn’t know what it was and suggested seeing the head of practice the following week. Meanwhile, a pharmacist came up with the answer!
I often think if everyone on just this forum became a member of PMRGCAuk, that would help with their research into a way of reaching out to those doctors. Or is that just wishful thinking?! There has to be a way where there is this sad potential for unnecessary vision loss.
It will improve - more is being made of it in medical school for a start. I just can't get over how much more aware medical staff are here - noone ever asks "What's PMR?"!
No wonder you would prefer to stay where you are! Even your recent trip to A&E sounded a world away from here at present. Friends spent the day in A&E at Chertsey on Thursday and they told us to believe everything we read about how bad it is - it was that bad with patients in beds and wheelchairs in the corridors. Initially, it was suggested that my friend was to be admitted but they couldn’t find a bed. She was sent home with penicillin and told to come back first thing on Monday morning. She is having a very difficult time getting over pneumonia after being in hospital for a week a couple of weeks ago. Things can only improve, although it’s difficult to understand how with today’s news that hospital admin staff are answering calls for volunteers at some hospitals to help out with washing patients etc.
Interestingly I went to my doctors surgery last week as I have been having some problems with my eyes (watering and not focusing - probably not helped by the Bells Palsy I had last year) and saw for the first time since the GCA was confirmed, the doctor in the practice who I had been seeing for the six months before I self diagnosed what was wrong (aided by Doc Martin on the TV). She was most apologetic that she had missed it but said mine was the first case that any of the 6 doctors plus 2 trainees in the practice had ever seen. Maybe PMRGCAuk members need to talk to local groups of medical practitioners to help develop their knowledge.
There are a couple of volunteers who visit hospitals to talk to medical students about PMR/GCA. Few and far between but it is a start. My surgery is now aware and the local PMR/GCA support group is included on its website. The more volunteers, the more we can reach out to spread the word.
There was a request on the forum a bit back asking for people to do it. I would do it like a shot - but it isn't the sort of distance to do as a day trip...
One doctor in my surgery was aware - but the one I usually saw wasn't and when I went to see him before we left I asked if he now knew what to do if a GCA patient appeared: "High dose pred and pray." Which I suppose is a start...
“It isn’ the sort of distance to do as a day trip” - well not whilst you have PMR!😉 I would happily volunteer to do it as well but with the group now being over 50 strong, I think I’d need another pair of hands, or two. So you educated your doctor - the more of us that can do that, the better. In the car on the way to occupy our little 1 and 2 year olds for a few hours now whilst Mummy & Daddy have a few hours shut-eye (jet lag) - we’ll probably end up feeling jmore than just et-lagged by the time we get home! Hope you’re starting to feel better.xx
Yes, I knew of the GP and it also applies to ophthalmologists - they do not always take on board that there may be other problems in the mix. One is lucky to get a good team. At the end of the day it is 'education'. Takes a heck of a time to filter through !
Kirkcaldy Hospital currently operate a fast track system for suspected GCA which is proving very successful. Meetings have been held with Scottish Govm to roll this out throughout Scotland, let’s hope they do as soon as possible
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Absolutely Fed up!
