Vasculitis UK are part of UKIVAS which is the UK and Ireland Vasculitis registry. We meet twice a year for business meetings and also the Lockwood Club to share challenging cases, present new research etc.
The next meeting is in January and the theme is " Unmet needs in Vasculitis ". The proposal is that a clinician does a presentation from the medical point of view and Vasculitis UK will do a presentation from the patients point of view.
What do you think are the unmet needs of Vasculitis patients? Is it all about timely diagnosis and effective expert treatment or do you require more information/ help around living with the various symptoms on a day to day basis?
Things that have come up on the helpline recently include the burden of peripheral neuropathy, the incidence of secondary Sjorgrens ( dry eye and mouth ), fatigue and psychological burden.
I am really interested in YOUR opinions so VUK can represent them to clinical staff.
If you would prefer to e mail privately rather than post on here my e mail address is lynn@vasculitis.org.uk
I'm really lucky with my GP but something that comes up a lot on Facebook in the group is poor support from GPs re ongoing care, and poor collaboration with consultants. This can leave patients in a tricky position.
I'm talking about post diagnosis here, and primarily the care arrangements during immunosuppressive treatment. I'm not focusing on unfamiliar doctors even or locums, but the main GP doctors who should be willing to help, but too often go "Oh I don't know!" and don't help at all.
I'm not sure what the answer is. Maybe better education will help, but I have a feeling something even more pro active is needed. Maybe a set of guidelines developed to advise on best practice re liaising between GPs and consultants in ongoing care. That's obviously something the charity could advise on. I know it's not easy.
This problem is also probably particularly likely to happen with rarer illnesses, where GP knowledge and confidence is poor. Like vasculitis.
Was just talking to my husband a bit more about this. We wondered if maybe a leaflet targeted at GPs who have new vasculitis patients might help, giving them advice on how they can support the patient, and a basic precis re the disease?
So different from the patient information leaflet, but aimed at the professionals. Obviously this would have to be written by the right people. But we do think it might help, removing some of the frankly terror that some GPs seem to have re this, and meaning a better outcome for patients.
There is a Vasculitis UK Professionals leaflet , its called "Vasculitis from a Professionals point of view" "For better Vasculitis Care".
This leaflet was written by John Mills with input from a couple of doctors who have a special interest in Vasculitis. This leaflet is part of the "Information Package" which VUK give out at medical conferences such as the British Society of Rheumatology conference.
This "Professional leaflet" is also sent out to GP's on request from newly diagnosed patients along with the Understanding Vasculitis leaflet and the Guide to Vasculitis booklet. VUK do this to help the GP to have a better understanding of their patient and their patients vasculitis.
Its very difficult to target GP's with "Rare Disease" leaflets, VUK have tried many times over the years along with other well known charities. There are 7,000 rare diseases out there, a GP could not possibly know about all 7,000 rare diseases.
I think the GP's should be educated through CPD to be made very aware of patients who keep presenting with ongoing symptoms that wont go away, repeated infections, etc... to look at the patient as a whole and not keep treating individual symptoms. "Join up the Dots" as John said back in 2010. But I think this has to be achieved within the medical profession as part of a GP's compulsory Continuing Professional Development.
Also through CPD a GP should be educated on how to support their patient after a diagnosis of vasculits, working with both the patient and the consultant.
Just to follow this up, is this leaflet clearly mentioned on the Vasculitis UK website? Because looking in the professionals section (vasculitis.org.uk/professio... I can't see anything saying it exists. I think it should be shouted about Thanks.
I gave five copies of Vasculitis UK's booklet on vasculitis to my group practice and identified one of the doctors there who had a speciality in Rheumatology who had an interest in Vasculitis there. The booklets now reside in their reference library. As a result the practice identified another patient who had presented symptoms and was referred to the Royal Free hospital where they subsequently diagnosed the patient with vasculitis.
I think that as patients with Vasculitis we can and should liaise with GP's as best we can and inform them as to what to look for in possible symptoms that may indicate Vasculitis being present and refer to hospital specialists as soon as possible. The quicker diagnosis can be made the better chance in controlling this disease before it causes irreparable damage. The symptoms may indicate a similar condition but I believe that doctors, even if they have doubts, should always opt for referral.
I think the GP is a good one as they are our most immediate care providers.
I also would like clinicians to spend a little more time or use other clinical staff /specialist vasculitis nurses to give more information about the disease, preferably visiting newly diagnosed patients to let them know what support is out there, what the disease involves/can involve and who can be a point of reference. It is harder to be good self-manager of this disease without some good support and education at the outset.
I asked several times for a leaflet on vasculitis when I was first diagnosed and an inpatient in a renal unit. Although my care was good and textbook treatment for vasculitis, their focus was purely on the kidneys. I wanted to know more about the cause as I had already suffered its outcome. I got all the information about the treatment which was okay but never got any information on vasculitis.
Actually more vasculitis or rheumatology nurses would be lovely. I've never had one, in 20 years since diagnosis. There isn't consistent practice re this across the board, and it would be good if all patients were similarly supported.
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Thank you SueBolton, all excellent points.
Will put information/ better patient education on the list.
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I have a Vasculitis nurse, she's also my Rheumy nurse and my Osteoporosis nurse.
Evidence does show that there are better patient outcomes for those diagnosed with vasculitis who are seen by multidisciplinary centres and of course have a specialist nurse. There are more specialist nurses being recruited at these centres and even in hospital vasculitis clinics. I also am aware that some of the established vasculitis specialist nurses are quite keen to organise "workshop" days for specialist nurses to attend and for nurses who may have a special interest in vasculitis.
These are small steps.. but over the past 5+ years I have noticed a big difference in the support and care available for patients diagnosed with vasculitis. Still a long way to go .... but the education has to come within the medical profession. Consultants, nurses, GP's and patients sharing information and all working together for better understanding and care.
You mention Multidisciplinary Centres. Is there one in London? If not, where is one that exemplify such clinic? As for the specialist nurses, where are they? Is there any in London for instance?
I had hoped for a Vasculitis event in London in the autumn of 2017 and asked for information but didn't get any. I would be very interested in learning more about Vasculitis (both from the medical field and sufferers). Is there any planned in London next year?
I was diagnosed in January and I've been thinking a lot about this.
Being able to talk with someone who knows about vasculitis is so important. I had a counsellor who had been very helpful before and I was finding it hard, so I went to see her privately. But this time, the more I told her about what was happening the more upset she got. She tried to hide it, but I could see what was happening. It's a double whammy, having to get to grips with the brutal realities and explain it all to others. Clinic 12 at Addenbrookes is fantastic but I wouldn't feel OK popping in to see the nurses and saying I want to talk. They are so busy.
I've had so many unnecessary hassles with pharmacies. Now I understand how the system works, but initially I had no idea that some drugs could only come from the hospital and that GPs would only repeat prescribe with letters from the hospital (and with so many specialities involved they get so easily confused). I didn't know that pharmacies sometimes struggle to get hold of drugs and some won't take back unused drugs from other pharmacies.
I'm an occupational therapist (OT) and I've used my professional knowledge about pacing, fatigue management, graded activity, pain management, relaxation techniques, home adaptations, using activity as a distraction and preparing to/going back to work. My OT friends have helped too. I don't know how other people get access to occupational therapy.
I'm really glad to hear these meetings happen: it sounds such a positive way of developing services.
Thanks Wendy, the problem of shared care and who is willing to prescribe and monitor medications pops up often. I am in Scotland and there is less of a problem here as GP's aren't fundholders and the drug budget comes out of the same pot of health board money!
Your point about OT is very interesting, I suspect that very few patients with Vasculitis get access to OT and Physiotherapy compared to patients with Rheumatoid Athritis etc, fatigue is something that comes up time and time again, like you I had a professional background to guide me.
Thankfully I was referred to a clinical psychologist which really helped, I believe that clinic 12 have managed to secure funding for a Clinical Psychologist which is a good start.
I will put all your points on my list, I suspect you could talk for hours on this subject!!
Lynn
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Hi Lynn I must admit all my input comes through my consultant. I only see my G. P about unrelated things. My consultant has always listened and referred me on to the help I needed eg. Physio OT. I always said I didn't want to be dragged round from department to department. although some things are unavoidable. The fatigue and breathlessness has been a problem and I am being referred to a clinic dealing with ongoing symptom control. Not sure what it entails. I think more information as to the unpredictable nature of fatigue and the best way to avoid and handle it. More education for G. P.So hopefully a quicker diagnosis. Val
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Thanks Val, fatigue comes up time and time again so will definitely mention it.
A clinic to deal with ongoing symptom control sounds a great idea, would be interested to hear more about it.
The opportunity to have "Group Sessions" between GPs, specialists and sufferers, so that common symptoms could be recognised under the Vasculitis banner and non related symptoms could be rejected.
Ways to cope with the symptoms could be shared and what to expect in the future could be discussed, allowing you to prepare for what may be ahead. Sometimes it is dealing with the unknown that is the worst part. If you have a good idea of what to expect, although it may not be very good, being prepared can help to make it more bearable.
Both medical professionals and patients could benefit from this.
Interestingly the Behcets Centres of Excellence have had education days for GP's to enable them to manage their patients better.
There have been a number of studies that show patients knowledge of Vasculitis and the medications they take can be poor. For example in one study only around 25% of patients knew that Prednisolone, Azathioprine etc were immunosupressants and put them at risk of infection!
I think the overriding thing here is better patient education and information so we can become our own best advocates. It's definitely an unmet need.
John has been diagnosed with cancer this year as well as having the vasculitis for 17 years.
The consultants, GP's and specialist nurses have had "team meetings" all along John's treatment for the cancer. a couple of these meetings also included John "the patient". In all, I would say there have been 3/4 of these team meetings about John, his cancer, his treatment and overall care within the last 12 months. We were also referred, as an option, to a local hospice for counselling and emotional support should we need it.
It would, in my mind be fantastic if this same care and support could be made available to all those diagnosed with vasculitis.
When John was diagnosed with vasculitis in 2001, there was nothing and I mean nothing... I managed to frighten myself to death via the internet until I found Paul and Jill Pegg who ran the old SSVT charity. Jill Pegg was my life line for about 2 years after my John was diagnosed, she kept me sane and I will always be grateful... It took 2 years to get John's vasculitis under control. There was no one to talk to, only Jill , no information from the doctors or hospital and the GP had not a clue..... no online support.....and I felt completely alone... it is so very different today... so very different...
My dream is for there to be no need for VUK, all doctors and nurses will be better educated, all the hospitals will provide information and support for their patients and Vasculitis Specialist Nurses will be the norm...
I completely agree with a lot of the posts regarding help, information, support for the ongoing symptoms such as fatigue, peripheral neuropathy, shakes, lack of sleep, fog brain, to name but a few. I thought it would all be over and could get back to a normal life, after the chemo treatment. Sadly that has not been the case for me, my vasculitis, diagnosed nearly two years ago, is still not in remission and I still feel quite poorly so have not been able to return to work. Because I thought I would be ‘better’, probably unrealistically, I have not accepted where I am. So I do feel people should be made aware that this can be a life changing condition. Also practical help regarding finances and claiming benefits would be useful, as someone who has never claimed benefits I found this very difficult I was unable to fill out forms, because I have the shakes so bad and dealing with DWP was incredibly difficult that I gave up because I just couldn’t cope. I know this sounds a bit feeble, but I just am unable to cope with things as I use to.
I also agree GP’s should be better informed, particularly on the secondary symptoms.
I am sorry to hear you still haven't managed to get remission, are you under an experienced Consultant?
I will definitely mention the lack of practical advice and information needed to manage debilitating symptoms such as fatigue etc. Many of these don't have a " medical " solution as they aren't something that medication can fix. Psychological support is so important as well.
I am now under David Jayne at Cambridge. I have had two Rituximab infusions, having the third in just over a weeks time, so hoping that will finally put me into remission. But as you know this condition isn’t a one size fits all, mine is just bring a bit stubborn.
Thank you for all the information and kind support you give everyone on this forum.
Thank you Terry for those kind words. When people say that they are having difficulty getting into remission my reflex response is are you seeing someone experienced and they don't come more experienced than Prof Jayne!
I have had HUV, a rare condition even for Vasculitis apparently, for 17 years and I have never heard of Vasculitis nurse. So this is a complete surprise. My experience so far has always been that I am alone in dealing with all that comes from having this condition other than the doctors giving me medicine or treatments. After many years I finally have a lovely and caring doctor (!) and he sees me regularly so I feel more supported now. I don't expect anything from my GP except for referrals. I have gone through four different GP surgeries and have met many GPs and to be honest, they don't seem curious or interested. I am sure my experiences are isolated but that is the case. I think they have to cover so much in general that they have no time and no space to get interested. They are much too busy filling out the forms and see all their patients for 7 minutes per. That is the reality in London it seems.
So my request would be to have a brochure that details what service is ( or should be) available from NHS for Vasculitis patients in its basic structure. A guide book please so that we can access better help from NHS. It certainly would have been more helpful for me had I known that there was such a person as Vasculitis nurse! I have never had any sort of helpful tips except different drugs prescribed by doctors. It would also be of help to have the explanation on blood tests for different function. Very often doctors have little time to explain what a certain test actually means.
I think the issues you have identified come under the headings of information, education and on going support.
I will certainly raise the issue of lack of speacialist nurses in the presentation and that patients aren't been given information and education when diagnosed.
There is a wealth of general and specific information about Vasculitis on the VUK website and we make our information booklets available to clinicians to give to patients.
If there is any additional education or lectures that patients could learn from that would be great. I have moved houses, jobs and areas in the uk since being diagnosed. This also meant changing GP and consultants. I find consultants in general to not have much time. And most GPs I have spoken to all say - well you know more about your dieseas than I do. Which is nice, but actually I don't know that much. I am a biologist by education and I find clinical trial and research level education impossible to find as I am not able to access research journals any more as I am no longer studying. Currently I am in the best health I have been in in years. But I know at some point I will flare again and being ill is my main driver to learn more about what might happen to me metabolically and physically at that point.
I have done a lot of my own trial and error with nutrition and food and I find that that extra help has propelled me forward to better health. But it has all come from doctor Google. None of it was suggested or driven by my health care professionals. I would love to have some more mainstream nutritional support.
Like a previous person, I have been to a therapist. At the time it had been 5+ years of illness, the breakdown of a relationship and multiple trips to consultants none of whom could tell me that anything was wrong. In that time I and everyone I knew decided that it was in my head. 3 days after taking my first dose of medication and at my weekly session my therapist said ' well I think we can confirm that most of your issues have been medical. You will be fine now' and I was. But I regret the 5 + years where I struggled. For reasons that were on the path to getting fixed within 24hours of taking prednisolone for the first time. So I think I would like some sort of guidance for GPs to follow when they are presented with someone in my position, (constant illness, fatigue, rashes, arthralgia etc etc) none of it specific, to investigate fully rather than brush them off for so long. I wouldn't want anyone to have to have as much of a delay in their treatment as I did.
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