Is it just me or is it difficult to get away from the umbrella of vasculitis symptoms causing or being responsible for everything.
I only ask as my GP is always keen for me to keep my questions for my (vasculitis) consultant and when I get seen in clinic I'm told I should be asking my GP about some of my concerns.
Then, when I see dermatology they don't know much about my vasculitis and are primarily treating my psoriasis, but my vasculitis consultant doesn't do skin problems and referred me to dermatology because I have non psoriasis skin problems.
Sometimes, I just leave my appointments more confused. In fact, sometimes, I just keep my mouth buttoned and with a fixed inane grin, thank them for their precious time and leave... humbled by their 'greatness'.
Occasionally, I'm also dumbfounded by the insensitivity of their throw away comments, but that might be the only thing I can remember from the meeting.
How do others manage or do you just sit there too?
I don't feel listened to by my rheumy and my GP always says 'let's wait and see what the rheumy wants to do'.
I only see my rheumy once a year in October so it's a flipping long wait.
I must admit I used to tell GP all my little concerns, just in case they were important but he usually poopoos them and says they're nothing to do with the vasculitis, but I don't agree.
Definitely feel not listened too and so tend to just sit there with an inane smile on my face too and state 'I'm ok' when asked and try to manage my disease myself as best I can.
Yes I do know I should be more forceful and proactive and sometimes I can be but right now just too tired and fed up to bother with arguing with them.
Cheers Ally, Dread is a good description for how I feel too, but I don't really know why. I know I should be more forceful but because I'm still learning and also perhaps a little cautious about getting it all out of proportion I feel I need to be polite. I'm one of those who apologises for taking up their time. Fortunately, overall I'm feeling very well and I don't have major concerns and my knowledge is improving over time. I just wish there were less contradiction between the doctors. Thank you.
John never sees his GP for anything really, especially if he thinks it maybe related to his Vasculitis, he always talks to his doctor who treats him for his Vasculitis first, even just by giving him a telephone call.
In an ideal world it is better for a patient diagnosed with vasculitis to be seen at a multidisciplinary centre such as Birmingham, Cambridge, London, Manchester, Aberdeen or a hospital where they work together under one roof as a team, such as Nottingham, Oxford, Edinburgh, Sheffield. Many of these hospitals also have a Vasculitis Specialist Nurse who would be the first point of contact and are invaluable for giving support, advice and information.
I wonder if the ideal world is a smaller hospital staffed by generalists who actually know their patients because they've seen them as inpatients as well as outpatients and who can refer up to specialists in the bigger centres when they realise the diagnosis is unusual then work with the specialist to provide the best care for their patient. So easy to get lost in the system with the bigger hospitals and the waiting times are much longer. In a smaller hospital you are an individual, not just the next patient on a very long list.
In an ideal world a smaller hospital with the understanding, knowledge, experience of Vasculitis plus the availability of specialist nurses would be fantastic. But with a rare disease, sadly this is difficult to achieve. But having said that some local smaller hospitals are trying to work together in some areas.
The big hospital was useful when it came to a whole team of rheumies scratching their respective heads about my condition but it was a soul-less place with some horrendous hygiene lapses and a real sense of despair among the patients on the ward as discharge dates were postponed simply because folk were still waiting days for tests that in my local hospital were done the same day as requested. I now have the best of both worlds with a rheumy at the big hospital looking after my TAK and at the end of the phone/email if I'm worried about anything, and a local consultant and others seeing to the rest of me and organising scans, etc., at my rheumy's request or on their own initiative. I see lots of comments about what might be called 'single-issue' consultants who only deal with one aspect of peoples' illness/es, some of which can be dealt with perfectly competently by a generalist. The ones at my local hospital are dealing with lots of folk with rare illnesses or unusual symptoms on a daily basis so I feel I have the best of both worlds.
it is good you have the support from both, sadly this is not the case for some. Lack of communication between the smaller hospitals and the larger hospitals is still an issue for many who contact VUK. Even, one or two smaller hospitals have refused to see the patient further, once they have been referred to a bigger hospital for a definite diagnosis. VUK do realise that there are those who have positive experiences and are happy with the care they receive but VUK are still contacted on a daily by those who are not receiving the care they should or even being given a proper diagnosis.
I'm thinking outside the box. Sometimes it's necessary. My rheumy is good at it, too. I suspect some of the good communication in my case is there because I've done a bit of 'prodding'. In fact, I know that's the case because a previous consultant at the big hospital did not communicate sufficiently with my consultant at the local one and I could tell the latter was a bit miffed (though he didn't say so) so gave her some feedback with instant results which I know were appreciated. There was no bad intent on her part - it was just the way the system normally worked and we found an informal way round.
'The system' would have me travelling a long distance to and fro on different dates with some overnight stays due to the distance for the latest round of tests/scans. What has actually happened, at my request, is that anything that can't be done locally is done at the big hospital (MRI etc) but everything else is carried out at my local hospital or even at the cottage hospital, which is brilliant.
I write these posts not because I'm particularly special, assertive, over-positive or whatever, but to let folk know things CAN be done better if we ask nicely and use sites like VUK so we know what's what with our illnesses and thus understand what's going on. 'If you don't ask, you don't get.'
Thanks Susan, I always find that everyone is as helpful as can be and I can't gripe at my care as my health has improved vastly. I have learned that I had to take responsibility for my recovery too. I just get frustrated at the "batting back' that seems to happen between the doctors.
I'm very reluctant to ask for a referral to a hospital Consultant. I was told by one that if I had Giant Cell Arteritis, I would need 60mg of prednisolone, possibly by injection, with possibly methotrexate and/or AZA. If I get a referral, I wonder how the specialists will justify me seeing them. They know I don't like drugs. As I was misdiagnosed, and made a complaint, I was victimised by 2 consultants (one of whom diagnosed arteritis) and have not been offered another hospital appointment despite several worrying symptoms. If I could see a reputable hospital doctor, I would be very relieved, but have lost trust 100% in the medical profession.
Point one: doctors are not gods - they are human like us and have good and bad days. Worth remembering they don't always get things right, whether they admit it or not.
Point two: we are the ones with the disease and the ones who need to manage it, not the doctors. The specialists understand the medical side of things but can only help us if we communicate with them and tell them what's happening.
Point three: we need to read up on our conditions as best we can using sites like VUK and others relevant to our other conditions so we understand what the doctors are saying and what the test results mean. Then we are in control and know what's going on.
Point four: if we cannot communicate with current doctor we need to find another!
Point five: we might get a better service from younger consultants than from the high and lofty ones; don't forget the younger ones have learned from the older ones but are more modern in their thinking and more likely to work with us.
Point six: GPs do the prescribing at the request of the consultants so we need to make sure we can communicate with them, too. That said, I do everything through the receptionist/practice manager depending on who answers the phone!
Point seven: if at all possible, get it in writing! I get copies of rheumy's letters to GP and printouts of all my blood test results. Verbal communication tends to go in one ear and out the other!
Point eight: don't be afraid to ask questions or see GP if worried about anything. It's what they're paid for! It's the same as asking a shoe shop assistant, 'Do you have this one in size 6?' to say to a GP, 'I'm having trouble with the side effects of this medicine; is there an alternative?'
Point nine: if we've waited weeks or months for the appointment, we need to make the most of it and take someone along to do the talking/take notes of what we want to know/ask if necessary.
Point ten: I realise that some folk prefer to be passive and that's fine; just ignore points one to nine!
Feel free to argue, disagree, whatever; I'm currently on a low enough dose of Pred not to react badly
Hi orsen-trapp, I like your no nonsense response and I wish I could apply it in real life. At present I'm stuck at point 10. I have done my best to arm myself with the knowledge but I'm intimidated by the fact my doctor has years of experience and I'm only at 18 months diagnosed (and I have scratchy recollection of some of that time). When I started off on this journey I was a bit more flighty but I've actually calmed down greatly as the panic subsided and I realised I was going to be ok. I just wish I knew which health concerns I should discuss with which doctor to prevent going in circles. Thanks.
I suggest that the gp in the best person if you want to discuss everything. Clue is in the word 'general'! They know a bit about everything, at least in theory! Or if you can get an appointment with the practice nurse, they often know quite a bit too, at least mine does!
My husband has GPA and has all sorts of symptoms since being diagnosed in Nov 11. We find that sometimes the consultant will refer him to another dept like ENT or Eyes but we also use our GP who also refers us. We find that if we don't get our way with one, we go to the other and we are not adverse to telling a few porkies if it gets us what we want. Even down to blood tests, what's the point of waiting till you see the consultant for tests? we have them done a week before we go even tho we have no 'paperwork' for it. You must try to be more pro active with the consultant & GP although I know it's difficult, but as others have said, they do not know it all. Just keep making GP appts until you get the problems sorted.
Thanks Nadine99, your hubby is very lucky to have a strong woman like you. I take your point, I need to stop being so wishy washy and get tougher. Best wishes.
Hi raspberry tea,
Welcome to the wonderful world of Vasculitis where for many of us multi disciplinary, seamless care is something that we can only dream about.
My GP is great, my main problem has been getting a diagnosis and as my GP has said to me on a few occasions " we referred you on to these very clever people as we didn't know what was wrong, unfortunately neither do they! " .
I ended up doing the rounds of all the specialties ( ENT, Max Fax, opthamology, neurology, Gastroenterology, oral medicine and dermatology ). All of them dealt with their own " bit ", when I asked the how they could account for my systems as a whole I was told " I am here to look at your eyes, jaw, skin etc. " It is absolutely infuriating!
I have copies of my bloods, scans, letters, in fact I have made up a version of my own medical notes. I write down questions and give the Dr's that I see a printed summary of my history/ symptoms. I have paid for consultations and travelled all over the UK. I have done all my research and am only now, 3 yrs down the line, getting close to a definitive diagnosis and hopefully effective treatment.
Unfortunately, for me, the multi disciplinary Vasculitis Clinics I attended were far from that! Yet I keep plugging away, asking the questions and doing what I can because what is the alternative?
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Hi Keyes, I'm glad you are getting closer to getting your diagnosis and relevant treatment. 3 years is a long time, no wonder you have become so knowledgeable about vasculitis.
My biggest frustration is when I speak to my GP (despite being nice) she is always lumping everything in with my vasculitis and when I see my vasculitis doctors they suggest I speak to my GP about my concerns. It's like some kind of "un-fun" ping pong and I have found myself not mentioning things because of it.
I guess the problem is this that this is still quite a rare disease and maybe my GP is as flummoxed as me.
Keep plugging and thank you.
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Sorry raspberry- tea, I ended up having a bit of a moan there!
Of course you can't be expected to know what symptoms are related to your vasculitis and what aren't. I feel quite sorry for GP's, mine have had to pick up the pieces time and time again when I have been let down by Consultants. There are over 6000 rare diseases, I think, GP's can't be expected to have great knowledge of all of them, they are generalists!
I think that being assertive comes with time, I am great at being assertive with Consultants on behalf of my patients but have struggled for myself. Perhaps the thing to do is challenge insensitive comments and make them aware that you do ask your GP's questions but they feel unable to answer them?
Someone *you* who appears to be highly competent in dealing drs only highlights how difficult it is for many patients who got this condition. I generally find that no drs would want to make a sudden commitment on a patient who is fairly new..NHS demands you to wait around many years to be taken seriously and as you say, "how many drs have you had to see before you were properly diagnosed?" I find that NHS drs like patients to bounce within so many services and over so many years, which in fact costing NHS more and leaving the patient chronically ill and patients never get better completely due to delays in start of his/her treatments. Is this ethical? No.
Having worked in the NHS for over 20 yrs and really believing in the work I was doing I feel quite ashamed of the way that myself and others have been treated. Although I have had a long, hard journey I am lucky in that I understand the " system " and terminology, goodness knows what I would have done if I didn't.
My particular type of Vasculitis, Behcets Syndrome, is particularly difficult to diagnose for many reasons. I didn't mind the delay in diagnosis it was the psychosomatic label that really upset me when they couldn't figure it out!
With the help of VUK and particularly John and Susan Mills I am now getting somewhere and volunteer, hopefully to use my knowledge to help other people.
The NHS is excellent in many ways but if you have something rare and complex ( I have come to hate that word! ) then there can be huge gaps in provision of services.
I really disagree with your previous post, lancrose. There is not some kind of conspiracy to keep us all waiting longer than necessary! It's just that when immune systems go squiffy there are all sorts of odd symptoms which are common in a number of diseases. Sometimes doctors have to wait and see what develops, rather like a gardener sometimes has to let a seedling grow for a while before they can tell whether it's a weed or not.
The problem is that we all speak from our experience and I suspect that lancrose was speaking from their's.
Of course many of these diseases require " watchful waiting ", unfortunately some Consultants lose faith and interest and don't wait around to see what happens to the seedlings.
I think that this site celebrates the good care that is evident up and down the country, unfortunately not everyone has access to it. I never would have believed my " story " if someone had told me it 3 yrs ago, I would have said it was impossible for the NHS to get things so badly wrong.
Some expert gardeners recognise a weed before it's fully grown and requires more work to remove and to stop it spreading. Your metaphor is ridiculous. We have all known someone somewhere who went along with the "let's wait and see" diagnosis.
I am an expert gardener (for over 40 years) and even I have trouble telling the difference between 'wheat and tares' at the two-leaf seedling stage sometimes. That is in a garden where I know what I have planted and sown. A new patient could perhaps be compared to an unfamiliar garden where we don't know what annuals are already there as seedlings from last year's seeds. My super, lovely consultants at the local hospital had me under their care as an inpatient four times before they stopped thinking in terms of more common conditions and then less common conditions and in my opinion that was entirely appropriate. As far as I know, doctors are trained to look for and rule out common complaints before going for the more exotic ones. If I go to the garage with a flat battery I don't expect to be told I need a new engine just in case!
Ok...I understand what you are saying and your treatment was appropriate for you and now you are on a lower dose of steroids you are obviously feeling the benefits of your consultants care. However, as previously stated, in many posts on here it has been confirmed that we all have possible different diagnosis, variations and strains of the same disease...so one size does not fit all. I struggled to get a diagnosis even though I had all the classic symptoms of GPA. I struggled on for months with 'hormonal rhinitis' as I'd had a baby around the same time my symptoms appeared. If I had not pleaded with my GP at the time, as I'd lost my hearing and had constant nose bleeds, headaches, jaw pain, could walk far etc and could hardly look after myself yet alone an infant, to refer me to another hospital for a second opinion I don't know what would have happened. Fortunately for me, my family have survived this illness with me and we all have are scars to show (too personal to detail on here). So, as I say, I'm happy your treatment worked for you but I encourage anyone to do what is best for them...
Rasp, my treatment hasn't worked for me yet; we're still working on getting the balance right and to be honest, this time last year and for the year preceding that I wasn't terribly sure I'd make it - but that's not the NHS's fault - they were treating what they could see and looking for what they could not. If I could stay on high dose steroids I'd be more than happy but we all know that's not on and I'm happy to accept that.
I sometimes get the impression that if folk aren't seeing certain named, well-known consultants they feel short-changed. I am content that my totally 'unknown' consultants are doing their best for me and that they'll continue to do so. That's worth far more to me than being seen by a high and lofty expert
Well, I totally agree with you there. I get the same impression too, but that's the choice others have the right to make. Personally, I will continue where I am and remain responsible for keeping myself healthy too. (My gluten free and anti inflammatory diet with supplements have really reduced my side effects, helping my weight loss and boosted my energy and it's only been a month). Best wishes Rasp.
Glad your diet's working for you. I for one am delighted the mackerel are now in and I can work on reducing the med-induced high cholesterol. Can't beat fresh-caught mackerel with a good salad! As for the gluten, I suspect himself is away down to the bakery tomorrow for one of their loaves as a treat and as far as I know, gluten's not a problem for me
Quite frankly I could have done without travelling all over the UK and spending several thousand pounds of my own money to try and get diagnosed. I would have been content to stay with my local Consultant if it wasn't for the fact that he completely turned the tables on me, with the help of a few others.
Going to Addenbrookes got me a probable diagnosis ( which I already suspected ) but they fell down on the treatment front. I have now come full circle back to the local hospital and an open minded Consultant that I can work with and who is willing to take advice from a Prof in Leeds.
I suspect that there are plenty of people up and down the country who receive good treatment for their Vasculitis in local hospitals but we don't hear of them, the people who tend to phone the helpline etc are the ones whose treatment isn't great.
Effectively I lost a year of treatment which has meant abdominal problems and developing a form of dystonia which has meant I can't drive and I am probably going to lose the job I love.
I have to live with the implications of my former Consultants actions every day, he doesn't.
You could always complain so others don't suffer in the same way, unless you believe the way you were treated was unique. Mind you, you'd have to prove that the delay has caused your current problems and that they wouldn't have happened anyway.
I am going to complain and the way he treated me wasn't unique!
He took me off treatment as he said my symptoms were psychological, I developed new symptoms afterwards.
In a way all of this is moot and I don't want to make this about me, I was just trying to illustrate the problems that some of us have getting a diagnosis and effective treatmen, that's all. I am not trying to Dr bash or put down the whole of the NHS.
As you said earlier, it tends to be folk who aren't getting the treatment they feel they should who phone helplines and make posts on fora and facebook!
For all I know, my diagnosis might not be correct - I certainly don't fit the profile for TAK! However, they are trained medics, and I am not, and the meds are keeping me more or less under control. When I was reading about the various diseases I was being tested for there were many that fitted better ... but the treatment for most of them was, guess what, steroids!
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Keyes, I didn't intend to cause offence...I agree that there is a tendency (on here) to champion the better known vasculitis specialists and for some they are out of reach. This can create a division of opinion as some might consider lesser known doctors treating the same illnesses as second rate. I am happy with my consultants and I appreciate how fortunate I was to get my GP's agreement to refer me. I also acknowledge that some people have had a really awful time getting the correct diagnosis (and was there myself albeit briefly) and think it's a good job we have Addenbrookes and other centers of excellence to help pick up the pieces.
I'm so sorry you had such a terrible time Keyes. I think it's disgusting how you were treated and I wish you my most whole hearted best wishes for you to recover enough to continue with a normal life.
I complained about my wrong diagnosis at the first hospital...unfortunately I was told that because vasculitis is so rare it wasn't really the doctors fault he didn't recognise the symptoms and because I had been referred to another hospital I had taken myself out of their system before they could correct the error. So, basically my fault!. The did up hold my complaint about his attitude and he was spoken to... big wow.
Good luck with your complaint.
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No offence taken and I always welcome the opportunity for discussion and debate!
As I said before I don't want this to be about me, I use my own case to illustrate a point about delayed diagnosis and inadequate treatment. I know of many other cases, both personally and professionally but of course I am not at liberty to discuss those.
Part of my problem is the difficulty in making a Behçet's diagnosis ( average time 10 yrs). Interestingly a few years ago the English NHS set up 3 Behcets Cehtres of Excellence ( C of E's ) which are nationally funded in recognition of the difficulty in diagnosing and managing the condition.
The principle of specialist management of rare and complex diseases is well established in the NHS. That is why they do cardiac surgery etc in specialist centres, because they know patient outcomes are better when treated by Dr's who see X number of cases a year. Î always think of Vasculitis as the medical equivalent of open heart surgery!
I know that the UK Vasculitis " experts " are looking to set up managed clinical networks so that care can be standardised up and down the country. We need a level playing field not the current postcode lottery. How can a single handed Rheumy in a District General Hospital manage Vasculitis to the same standard as a Rheumy in a multi disciplinary clinic?
I think that better days are coming. I was at a meeting in Glasgow 3 months ago hearing a newly qualified Rheumy speaking passionately about the need for an integrated service for Vasculitis patients in the city. She had just come back from a 2 year clinical placement in Canada, at a Vasculitis Clinic, and has set up a similar service. Including registering the clinic with UKVAS to help collect clinical information and improve treatment for patients.
I was lucky enough to attent the recent Vasculitis Patient Symposium in London. I came away with a renewed sense of optimism having listened to the " experts " in the field. Every one of them passionate about their job and the medical breakthroughs that are just around the corner. Also very approachable, down to earth and willing to engage with the participants. Not a high or lofty personage in sight.
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Very well said. I agree and hold the same optimism.
In the beginning of my journey along the Vasculitis road, I quickly realised that if I was going to have this for life and not just for Christmas, Yes! I do have my dog days still, I had to have a team and I was going to be part of that team too. My GP didn't know much about vasculitis so I gave him a copy of the Route Map, thanks John. I researched and read as much as I could including research papers and the Oxford journals so I had a better understanding of the disease. I also have all the consultants letters sent to me as well as the blood tests readouts and can discuss these with either the GP or consultants when I see them. It has been a very steep learning curve for me and in discussions I have found that even the consultants struggle at times to reach a conclusion. But the team concept works and I think they appreciate it too when a patient takes an active interest.
Good luck on your journey, it can be a fascinating one, a bit rocky at times but there are more smooth paths than steep.
I think I know what you mean...we often get a very patchy service. It seems nobody wants to deal with you properly. "Commitment-phobic", almost! If you are seen as a complex case, then they prefer "someone else" dealing with it. Sad but that's my own experience. NHS - if you are much worse (dying for example), I will lift my finger for you. But until then, you are on your own!".
Thanks for the comments; I went back to my GP today and revisited my concerns with her. She is going to write to my vasculitis consultants today so that she can refer me on or give me the treatment I have asked for. I feel better already.
That's brilliant, well done, rasp :). Thank you for the excellent thread, too.
My doctor puts my symptoms down to prednisolone (ie I need to reduce dose) rather than the Giant Cell Arteritis (inflammation of large to medium arteries) which would require a higher dose to protect my arteries and organs. Auto-immune illness is so common and serious (can be life threatening or cause long term disability). These illnesses seem to come not just one at a time. There needs to be more consultants with an interest in auto-immunity. They seem to pass the buck. No-one knows what causes it or how to effectively and safely treat it. Health Unlocked do well to get sufferers together for support and Vasculitis UK do well to question and record. So much more needs doing before people get quality caring treatment without judgement or preference. Some sufferers get as good as any private hospital patient, others struggle with 10 minute appointments with a dismissive and disinterested GP who puts very serious symptoms down to 'hypochondria'.
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I'm grateful to have this forum, we can share our experiences (good and bad) with each other. I have learned so much from reading posts and responses. I agree with much of what you say about doctors being dismissive. I encountered a very rude and dismissive doctor when I was seeking a diagnosis. My opinion is he was hiding his lack of knowledge behind this undesirable facade, rather than admit he was clueless. Then there is cost, my GP reckoned that if everyone with a persistent sore throat was sent for cancer testing it could possibly save a life or two but the majority would be cancer free and the NHS would be 'broke'. Doctors are also fearful of litigation and won't always commit themselves as a lot of the treatments have such adverse side effects.
The system is flawed and selfishly I'm thankful I have been (mostly) fortunate. But you do have to have your wits about you and fight your corner so often it's tiresome.
As for the prednisolone, the sooner I'm off them (if ever) the better.
My doctor put my breathlessness and tiredness and dizziness down to prednisolone, that was 7 years ongoing and very dismissive in hindsight because he thought he was the expert dealing with CSS having had only one previous case and also ignored the perils of being consistently ANCA negative. Now in 2015 I have a severely damaged heart. The moral of story is how ever nice your doctor is demand a second opinion. I wish I had.
Though I have Giant Cell Arteritis, I think this vascultis site is more for younger people than GCA which affects people in middle and of retirement age. I think that hospital specialists are interested in people of a younger age group. GCA sufferers are often too young for geriatricians and not old enough to be dead yet.
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Hi WMTuk, I haven't a clue what age people are on this site but one thing we all have in common is vasculitis and that's why I use it. I'm sorry to find you're struggling to get the proper attention you need. I'm not sure doctors limit their interest to younger patients, where I live the GP surgery wouldn't have to be open half the time if wasn't for the older generation using it. The other day I went for my dexa scan and there were 5 of us waiting, I was the only one under 50. The others were in their 70's and they were curious to find out why I was there, they'd all been referred by various specialists. If you are not happy with your treatment maybe you could look to another hospital? (Forgive me if you've already tried, just trying to make a suggestion). Very best wishes.
I had the opposite in the past from my so called 'expert'. Complained about tiredness and fatigue and could it be related to CSS only to be told 'we all get tired'. Years later I'm in heart failure!
Hi Rowmarsh, I hope you're ok and your retirement is going to plan. As for the doctors, I think there must be a big book called "The complete guide to indifference and pointless phrases" which is handed out to medical students, to be used when they don't have the correct answer. Best wishes.
You made me laugh! Yes I think there is a website called 'Doctors Know Best About Everything Rare but Have No Answers/Tinker With the Problem/Save Face.co.uk
I wished I could send you a copy of my final medical retirement report. My case at present is 15 pages of tables of diagnoses, history, symptoms and how the symptoms impact on my working life; they (Capita) are no interested in a person's quality of life! I have another few pages to go before others read it over for me. I have shocked myself to see just how bad it all is at 49 but if I were a betting man I can guarantee is will be rejected. On the other hand, if this is the case, my Department will be putting me and themselves at risk if my CSS and severe cardiomyopathy progesses further. The process of medical retirement in the civil service is quite sick really. It is cheaper to get rid of me on less than half pay a year than keep me employed on a full salary doing an hour's work a day at best but the view is, if a person has a pulse and can hold a pen they are fit to work lol Their choice!
I'm actually intrigued to know what my employer will do with me if medical retirement is refused. I have battled and performed with work for 10 years to my detriment and now my heart is severely damaged would they want to risk further health problems whilst I'm employed by them? Already told the senior management they will be taking the risk if I'm pressured with work.
I think if they refused your case, you would need to consider going down the grievance process, whatever that may entail. Do you have a Union, if you are a member you should (if you haven't already) contact them and let them know the difficulties you are having. Before I left my employer I threatened to sue them using the tribunals service, that was due to discrimination. It was a very lengthy and hostile process but my complaint was upheld and I was offered a £ sum to back down. It's a process best avoided if a settlement/resolve can be reached early as it is very stressful. I got what I wanted, but my position became untenable due to the circumstances and I resigned anyway. I hope your employer doesn't make you jump through hoops. Let me know how you get on. Again, all the best.
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sadly this is not the case for some. Lack of communication between the smaller hospitals and the larger hospitals is still an issue for many who contact VUK. Even, one or two smaller hospitals have refused to see the patient further, once they have been referred to a bigger hospital for a definite diagnosis. VUK do realise that there are those who have positive experiences and are happy with the care they receive but VUK are still contacted on a daily by those who are not receiving the care they should or even being given a proper diagnosis. 
Anyone else here with Vasculitis related heart conditions ?
My experience with cerebral (CNS) vasculitis
"Together we are stronger"
Please consider becoming a member of Vasculitis UK
Just diagnosed - vasculitis GPA 
Fed up
