Has anyone experienced this at all? Refusal to prescribe and do bloods?
I have been waiting to see an oral medicine consultant since January. Obviously, due to the dreaded, it was, like many appointments, cancelled and put on hold. Thankfully, I have not had to wait too long since easing of lockdown and have now be seen by this lady. My appointment was the 19th August.
I have had many symptoms over the past 7 years but one of the most prevelent being oral ulcers, sore mouth, sore, burning tongue and have been told a couple of years back that I have Behcets, due to other manifestations and the ulcers being many and very little gap between them healing and recurring .
I have, in the past had skin lesion on legs and back, dry eyes, dry nasal passages, recurrent sore throat, profound tinnitus, accompanied by intermittent deafness - recently pins and needles in extremities numb feet, and so the list goes.
To try and cut what could be a very long story a little shorter, the consulant did a through examination of the oral cavity, sialometry test and oral rinse. She suggested I have full blood count plus CRP, ESR, immunoglobulins, C3, C4, C1 esterase inhibitor, ANA, ENA, rheumatoid factor, haematinics, ferritin, B12, folate and HLA B51 (this last one being related to Behcets I believe). As it so happened, I was having a blood test done the Saturday after I had seen the consultant, so to save two lots having to be done and a returning visit it was suggested this request to be sent through to my GP and to be added to the ones I was already having that Saturday. I received a call from the GP after my initial blood test which came back ' normal' - except for a couple out of range - one being my liver and one for albumin. I asked if that was ok and was told 'yes, nothing to worry about' Which is not 'normal' for me. I was also informed 'the extra bloods requested can not be carried out by our nurses at the surgery and will require me to return you to the dental hospital in three months time and you will have to have them done there!' Also, the prescription will not be fulfilled either as I can buy some of it over the counter and the rest as the GP put 'I havent even heard of - and, in fact, it is a ridiculously huge amount to prescribe someone - perhaps take the consultants letter to the pharmacy and they can help you out!' I was, as some folks put it, 'gobsmacked'
I have to confess, I have had a tottering time like many over the past 6 months - I retired from my school job early as I became very unwell at the begining of March- the 4 and 5 year olds were dropping like flies at the time ( I was due to retire July ) needless to say I joined the party with chest, ear nose and throat problems, and of course the ulcers to add to the mix. So due to this I was on the telephone a number of times requesting help and input as I lost a stone in weight. Still not 100% now. Perhaps I have had my quota for this year and the above requests have taken me over my limit or, the Gp's ) It was suggested I try to 'get on with my life as I have a good 20 years left to live it rather than worrying my days away' Yes, of course. If only it was as simple as that, eh?
Apologies for the long post.
Thank you also if you made it to the end.
Ps I know this doesnt mention lupus at any point but lupus has cropped up a few times in past conversations.
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Minnskimoo
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Hi sorry you are having a bad time.i have to have bloods done every month throught out lockdown as I take mycophenolate so I think over your limit is unlikely.have you got a bloods form with them already on ? .. .. if so go to path lab at the hospital and get them done there.i used to go there before covid as I'm terrible to get blood out of but as im evc I've had to go to my gp recently.i know there are some rheumatology bloods gps cant request I think it might be compliments and immungloblins but I'm not 100% so sorry if I'm incorrect.there are also some drugs gps wont prescribe without a shared care agreement from your consultant..I had to have one for both the Azathioprine and Mycophenolate so maybe that's the reason. All I can suggest is you ring them all back up and ask for an explanation....if you get no joy from the receptionist ( who are from a different planet) ask to speak to the admin person who deals with scripts.might be patient liaison . Best wishes xx
Many thanks for the reply. It does sound as if it could be a possibility now you mention immunoglobulins and some relating to rheumatology - but if that were to be the case, surely the consultant would know and would not have suggested I have them done at my GP practice...?
I have decided to contact the consultant's secretary and see what I need to do about it. I am not against purchasing meds from otc but, yet again, I have not been refused until now. I imagine GP's must operate and vary between practices- do they ? I have no idea about budgets and allowances but do apprecatie as with most things there is always a price to pay - either monetary or in my case be on the receiving end of someone's very short stick! Obviously the Bank Holiday was looming and she had clearly had enough.
As pmrpro says the often disagree as to who's responsibility it is to pay .do you have a rheumatologist? If not when you ring your gp ask for a referral as if your dental consultant is suspecting AI illness then you will need one anyway x
Sorry I dont understand that....I dont see why you arnt in the hands of your rheumatologist as you cant go on bloods alone.you can still have an AI illness and have normal bloods.xx
It was actually the dermatologist that sent me to the Oral medicine department as my mouth at the time was an absolute mess. He thought it could be some form of oral pemphigus ... so the oral medicine department was my next port of call. And I have to agree, I know I am not functioning on all cylinders, haven’t been for a long time but as my helpful GP put it...your bloods are all ‘normal’ of which my liver was slightly above reference and albumin below. Never had that before.. but, I have to stop worrying and get on with life! 🙁
If I do not get any support from oral medicine tomorrow I will contact the consultant rheumatologist’s secretary and explain my dilemma. Sometimes we need that extra push - I believe between yourself and PMRpro you have given me the confidence to pursue the matter further!
Thank you for showing an interest and providing support - It is far more than I received from my surgery, that’s for sure! 💐x.
I'm sorry if I came across as bossy...I've had a 5 year battle myself to get a diagnosis and treatment plan and poor, ignorant care infuriates me.id of said my piece to the gp who said get on with your life.my gp has been brilliant and wasnt to blame for my battle it was arrogant consultants at my local hospital who repeatedly said nothing was wrong with me.gps dont know how to deal with us which is another reason why I'd be going back to rheumatology. My consultants are my primary care team now.lupus has affected my lungs for that I see a chest specialist, my kidneys have class v damage so I see a kidney specialist and my rheumatologist deals with the rest I dont contact my gp as much now I see them and have a treatment plan in place.i hope you get some answers and treatment soon . B12 deficiency used to cause my mouth ulcers but I never got lupus mouth ulcers I got nasal ones thankfully touch wood with treatment I've havent had any for sometime now .
No need for any apology. And I hear you . It is good to know you have people on side to support you when at a low ebb.
I was unwell for seven years many moons ago in my mid thirties backwards and forwards with gynaecological problems -only to be repatedly told many things it wasnt! Mainly health anxiety and stated on my records as such - 'hypochondriasis' only to be in agony and end up with stage 1V endometriosis with ovaries the size of two grapefruits - resulting in a total abdominal hysterectomy with ovaries, uterus and cervix all removed - (almost a hollow shell. Sorry ) To be truthful, I have been on a downward slide ever since. So, once again I have a catalogue of symptoms that really do not appear to sit with any one clear diagnosis. As I said in my previous post, I am not working to full capacity and have not been for such a long time. I know something is not quite right much as I did before. I first posted on here when my symptoms began to increase in severity and became more prolonged -about 3 years ago. As per, I was offered counselling and AD...much the same as pre- endometriosis as I am not ill, just anxious. Of course I am anxious, no one is listening ! So, I have seen a rheumatologist, immunologist, dermatologist and now, oral medicine. As an aside, my mum had pernicious anemia and thyroid problems and my sister has Graves.I believe AI problems can run in families? It was suggested I have Behcets, and states this on my notes- but is debatable... therefore the oral consultant requested the test for that to be included in the bloods.
What I do know is, that AI disease can take some time to be diagnosed - living in hope I do not have to carry on this way for too much longer and I can at least have a little respite now and again. I am not holding my breath mind - it's difficult enough to breathe as it is.
I needed to vent after my conversation with my GP. Maybe she could have suggested a catch up with the rheumatologist...
It never fails to surprise me how our journeys are so similar .my children are 27 &17 there is a large gap as I had treatment for endometriosis for 6 years .. 2 mini menopause then laser treatment. I also have pernicious anemia and AI thyroid disease (hashimoto's) and now lupus,lupus nephritis and sjorgens yet it's still easier for them to label us as hypochondriacs and tell us it's in our heads 😡 .
It is very easy when fatigued to say sod it....quite often though it revs up my fiesty defiant side and I'll say nope not good enough.at the end of the day it's only us who can fight for the care we need and if we stay silent they will happily let time float by and move on to someone "less complicated "
The last time I was in hospital they said they send me a clinic appointment .... my reply was "dont bother I'll wait to see my chest specialist in preston at least hes competent "
Oh well onwards and upwards the fight goes on 🦸♀️ (we are tough cookies)
Chuckle . 💪🏼Can I use you as my support when I don’t have the energy please? Need a bit of that! 👍🏼😉
And so true how we all seem to share many similarities. Sorry you have had that struggle too. Phew! It’s the pits to be honest.
I did wonder about my thyroid as my sister suggested it could be that. As I mentioned, she had Graves now hypo’. Seeing as my TSH was deemed ‘satisfactory’ absolutely no need for further testing of T4 T3 or any antibodies for that matter. Same GP reminded me ‘we know what we’re doing and I can assure you, you do not have a thyroid problem or a B12 problem ( with a level of 190) and you’re just about right with your Vitamin D - it was 25! Was 70 at one point! B12 was 700 once upon a better time too so something def going on ! The joys.
Cheers muchly.
I will leave you to enjoy your day- but feel a touch better already for the chat!
Your b12 is 190 😲 200 is the treatment point and it should be above 800.mine was 202 and I suffered headaches pins and needles in my hands and feet extreme tiredness.i now have b12 Injections every 8 weeks...its Injection week next week....woohoo cant wait . You could take b12 tablets as its water soluble so you just pee out what you dont use.left untreated it will cause nerve damage maybe you should ask your gp if she is happy to take responisbility for that ! I always ask for my thyroid levels as you can be border line normal and still require treatment.id have a field day with your gp.😏.many AI illness are linked so you tend to have more then 1 .
Off down the beach for a walk but not too far as I cant tire myself out yet as I've got a fuel delivery coming today that will need moving under cover .
There must be a way to make a complaint in the primary care system - I know how to do it in a hospital, they have a legal department. I imagine you go to your CCG, Clinical Commissioning Group, who are responsible for purchasing services.
I know there is often a fight between consultants and GPs about whose budget is used to account for medication, especially the more expensive stuff, However - just because you have an ignorant GP who thinks they know more than the specialist consultant who they referred you to does not mean you should suffer in the meantime by being the filling in the sandwich. I would start with the Practice Manager and make it obvious you will not leave it lying. Unless there are other less unpleasant GPs in the practice who actually care about their chronically ill patients...
I am going to call the dental hospital in the morning and enquire as to why this might have happened. I was interested to hear if anyone had experienced similar with blood request and prescriptions ? It has never happened before. If so, what to do about it, or if I was expecting too much in one request. I appreciate the allocation per patient is perhaps not very much, I have no idea.
I was not a happy person when told to 'get on with my life' The GP has no idea what has gone before, sadly I do not have the time ( and 10 minutes is no way near adequate ) or the inclination to make her any the wiser. As if she would be remotely interested anyway....
She should be - if she isn't she is a poor doctor and has chosen the wrong profession. Or the wrong branch of the profession - I always think a bad GP who can't relate to their patient would have been better as a pathologist who never has to speak to the patient ,,,
What the GP is paid to look after you is not what they are to spend on your care - it is NOT coming out of their personal bank account.
If feeling low and vulnerable it’s not how information should be delivered to patients. However, I did feel that was how she wanted me to interpret her response. Do I have any idea how much ....blah, blah?
Sighing, but feel better for the chance to get it off my chest.
To which part of the response must be to point out that the system is that the NHS is there to provide medical care for you and you have paid your dues for your entire life since the NHS is paid for from general taxation. She is not the gatekeeper to ration your care. That is above her pay grade. If she doesn't like the way it works she should go elsewhere perhaps. She has a duty of care - and she has failed in providing it for you. With how many others has she taken this attitude? Has she possibly driven a sick patient away to become seriously ill as a result? Has she any idea how little money some patients have to pay for OTC medication that is classed as necessary for their illness? As far as I know, not all OTC medications have been removed from the prescribing list yet! Here in Italy where I live there are strict rules, you are only compensated for the cheapest generic and a lot of things are not covered by the state at all - but that is here and I can put all that sort of thing against tax!!!
No - a stiff letter to the authorities is called for, just for the satisfaction of the rant
So sorry you’ve had such a rough time , it seems it’s the way of it now and as I think has been said money being the root of all evil and top of lists, it’s all about who pays. My go would not refer me to specialists and I know it’s down to costs as my old go from there who was ok left because of the politics and not being able to make referrals because of costs to surgery. I think he told me as I was one of those and he said he did not become a doctor for that but to help patients.
I guess you should contact the consultant to see about getting done.
What a worry having to hope your case is worth the cost of a referral. How does that even work? I obviously do not know enough about such matters but it appears to be the way - as I have discovered to my detriment.
Hoping today brings a little more positivity and I can move on, receive the medication precribed and have the bloods done sooner, rather than later.
It truly is a sad state of affairs.
Thank you for the response. Support is always welcome and truly appreciated.
Yes despite stating the sad facts you must remain positive 🙏 and push forward , go back to specialist about it, don’t be like me I gave in to it all much to my detriment 🙈 you will get there and get it sorted it just shouldn’t have to be like that , but at least you are aware now , I also wasn’t .
Hoping you have a better day today and can get bloods done and medication. 🤞
I think at times 'giving in' is because it is quite wearing (as if you're not tired enough!) and a long, drawn out process- so, if like myself, somedays I think s*d it, begin to question wether I am causing more problems than necessary and try to push on - that said, the problematic, non - illness still makes a reappearance - hence the need to confer with someone that might actully give a hoot!
Sorry you had to struggle... it's no picnic, and a job that’s for sure.
x
Here’s my penny’s worth. Some seem to have found their GP practices marvellous before and since the pandemic but I’m guessing they are few and far between. Mine have been more useless than a chocolate tea pot although they have monitored my bloods due to me taking Mycophenolate - but I can never find out the results so just have to assume they are okay.
On the other hand my oral medicine consultant has been amazing, as have my dermatologist and rheumatolgist. My shielding was organised by dermatology and was really helpful for getting furlough and priority shopping.
The most useful member of primary care since lockdown has actually been one of the practice pharmacists. I speak to her and explain my symptoms and she arranges the prescriptions and takes things off and adds others into my repeats. She can look and give me my blood results and I can explain what a consultant has recommended and she can go away and check it out on the computer or with a GP. Perhaps you could try this route?
Otherwise I avoid my GP practice and the usually horrible receptionists like the plague.
Oral medicine recommendations are a little different as they don’t seem to come up on the GP system as quickly. Maybe the practice doesn’t have a share care contract in place with the dental hospital? But a consultant is a consultant so what they request should be acted on by your GP.
Really it’s between them to argue the toss about this between themselves and work something out - not for you to wait 3 months and have to try and get it sorted out yourself.
Hopefully the dental hospital will be more helpful when you phone and explain - as mine has been. I’m guessing your GP isn’t prepared to run rheumatolgy blood tests as they are usually ordered by rheumatologists and he won’t get recompensed or something like that. But CRP and ESR are basic and they should definitely be run along with a thyroid panel by your GP.
Disgraceful really when your health and wellbeing are at stake. But I’m becoming increasingly convinced most of my practice have given up being working GPs and have taken up mini golf - judging by the fact that none of my old partner GPs has once contacted me since lockdown about my new diagnosis of Systemic Sclerosis.
One GP guy I’ve never met with a deep sexy American voice drawled at me that I must get off the phone and call 999 when I said I was having muscle spasms in my left chest. In vain did I try to tell him this has happened before due to a trapped nerve and I just wanted Diazepam. He just said “phone 999 please. Goodbye” and hung up??! The lovely paramedics and junior A&E dr were not impressed at all and asked same as me - where have all the GPs gone and why aren’t they still seeing patients as we have to? I known mine have full PPE gear because I spotted them all standing around laughing and joking in it when I went for blood tests!
Thank you very much for the reply. And sorry to hear you have Systemic Sclerosis as a new diagnosis😏 - and just as shocking, the fact no one has had the good grace to contact you! For all the hard work that has so far been done and still is being done regards COVID it seems all else has to come secondary in spite of being told ‘we are still available for other matters not related!’
I never had the opportunity to spreakm to my named GP once when needing help, reassurance and advice. It was anyone that was available and had no idea of my history. Don’t get me wrong , I was fortunate enough to have one GP that did show concern and sent me off to A&E for bloods as my skin has taken on a golden hue, (appears to be steroid usage) whites of eyes still white btw! The fatigue was beyond manageable and I couldn’t breathe very well and had pains in what I found out to be a suspected gallbladder attack. No idea where that popped up from as never suffered before. Duly discharged and sent for scan following day. Meds prescribed to help was no problem.
Re the dental hospital - I had a returned call this am to say my GP is on holiday until Friday so I will be getting a call back next week! The dental nurse said if we have no joy from the surgery the hospital may be able to send a prescription to my local branch of Boots for me to collect. I cannot understand why that’s not already possible and I have to wait! It is perhaps as you suggested - the share care contract. There is obviously a barrier. Heaven only knows. 🙄
My next job will be to contact the rheumatologist.
Oh dear Sue - what hard time’s we with rare, chronic conditions are living in. It shouldn’t be this hard. They are handsomely paid to be GPs and we are not being paid to do their jobs for them - yet so often it seems we do? I’m not so bothered that the gps I usually see haven’t contacted me of their own accord.
But it’s the fact that when I’ve phoned for an on the day phone appointment I’ve ended up having to speak to GPs I’ve never met and who haven’t had time to read my notes. Mind you my notes will be as long as all volumes War and Peace x3 so this is why it’s best to try and get a GP who knows me and my history - rather than some Locum stranger 🤷🏼♀️😢x
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