Frustrated with NHS service

I started on Leflunomide on 25th November via the Rheumatology Specialist Nurse at the hospital. She said she would write to my GP to inform them of my new medication, to ask them to keep a regular check on my blood pressure and to ask for this med to be put onto my prescription list. When the med did not appear on my list I asked my GP today to prescribe more as I run out of tablets on the 5th Jan. He said he could not do this because he had not been sent any instruction letter from the hospital and the tablets were very expensive. He suggested I contact the specialist nurse and get them to send a letter. When I rang I just got an answer service which stated that because it is Christmas it may be some time before my query was answered.

What I want to know is why can no one these days do what they are supposed to do? I have said before on this site that you have to be one step ahead of the medical profession these days to get what you need but it is so frustrating when people just do not do their job properly!! The NHS service never used to be so unreliable and I fear it is going downhill rapidly.

I will not be at all happy if I am left without any medication. I am worried that my symptoms will all come back again. My next Rheumy appointment is 15th Jan and believe me they will get it with both barrels if this is not resolved before then. Rant over!

22 Replies

  • Your GP is correct in that he can't prescribe LEF without written authority as it's a DMARD & as such a Specialist drug but what I don't understand is why he said they were expensive! Cost is according to the dose of course but there are more expensive DMARDs & he'll have to prescribe them if instructed to do so, whatever the cost.... so irrelevant! That said our Practices are increasingly being pushed to reduce prescribing costs so maybe yours is particularly hard hit. I would ask them to double check that no such request has been received. I say this as I've had a similar experience & lo & behold after they'd double checked they found the request letter from my Rheumy.

    I don't think you need be overly concerned about symptoms returning once you've finished your LEF as it has a long half life (up to 4 weeks) & you'll only be out by 10 days by the 15th. If you do happen to need something if you start getting pain or inflammation ask your GP if you could increase your NSAID or if your nurse specialist didn't prescribe one ask your GP if he will to tide you over til your appointment.

    Hopefully it'll all work out & you'll be fine.

  • Thanks nomoreheels for your reply. They have checked several times and still cannot find any letter. It's good to know that I will still be okay even if I miss 10 days of LEF must I still maintain that this situation should not happen.

    I forgot to mention that towards the end of my conversation with my GP I tried to emphasise that I could not go too long without the tablets in case symptoms came back whereupon he said he would have to terminate the phone call as he has too much to do. Nice!!!

  • Of course it should not happen, no doubt about that! Have they been looking for a paper letter? Has it been considered that it may have been sent on NHSmail (an encrypted internal email-type system)?

    The way your GP ended the call was very unprofessional. Even if he wasn't in a position to prescribe what you needed without sight of the instruction/request from your Nurse Specialist he shouldn't have been so dismissive. Is he a partner in the Practice or a salaried GP? Whatever, he obviously wasn't open to further discussion but it would have been nice if he'd considered prescribing something for you should you start to feel the effects of not taking LEF as should be expected given the circumstances.

  • This GP is a senior partner and I too would have expected a more professional approach from him. I have to say this is not the first time he has dismissed me. A while ago I had a ten minute appointment with him but I was still talking about my problem when he said my time was up and that was it. Needless to say I avoid seeing him now and try to see another doctor.

    They were looking on screen for the letter but could not find anything. All he suggested was that if I had no reply from the specialist nurse then to speak to the surgery's pharmacist to see if he could help.

  • Hope you get this resolved my GP was exactly the same even when instructed by the hospital he was reluctant to add it to my list of drugs which was only thyroxin - the drug worked extremely well for me for some months until skin flare up - I came off it for three months then went back on it as it had worked so well again after nine months skin problems . Waiting now for next stage of meds which is why I am sat up on a Christmas morning wide awake cos of pain . anyway stay strong and hopefully you will get sorted x

  • I always ask for a handwritten letter which I take to the GP if there are changes to my medication. Letters from the hospital take at least six weeks, not because the doctor or nurse doesn't write it - it is done immediately after the clinic - but because the clerical staff have been cut to the bone.

  • Thank you oldtimer for your reply. It never even crossed my mind to ask for a hand written letter but I will certainly do so I the future. However it is not my/our fault that the clerical staff have been cut and even so I still expect an efficient and timely service. This is my /our health well being we are talking about and we need a service that can provide for our needs. Roll on the next general election!!!

  • Dear Jeanjack you have my upmost sympathy in my case the R/A dept was closed, recorded message call 999 in an emergency. I suggest go via google and enter "find my M.P." once there write to him/her and express your thoughts, at least it will give you some satisfaction.

  • Thank you scorpious for your reply. Sounds like contacting my local MP is the only way we can be heard. Will give it a try but don't have much confidence that it will even be taken any notice of!!

  • Having been off dmards for six months now because of intolerences myself I can sympathise with your dilema.

    My rheumy has always given me a handwritten note to give the GP by way of instructions for dosage changes or new drugs and this works well as Oldtimer has also experienced. It is daft of the rheumy nurse to leave you high and dry in this way but hopefully the Leflunomide will stay in your system for long enough to get you through until you see the rheumy and at least your appointment is soon. The bit about the expense of Leflunomide is absurd!

  • Thank you Twitchytoes for your reply. Never even crossed my mind to ask for a hand written letter but will certainly do so in the future. Couldn't believe my GP went on about the drug being expensive. So what! It's what has been prescribed. Deal with it !!

  • Ho ho ho there jean jack

    Sorry to hear about your medications problems. This happened with my son. His paediatrician letters were taking 6 weeks to reach our gp so he had to wait in discomfort. I rang the secretary and asked her to find the doctors tape and type a quick note and fax it to our surgery, which she did. I totally agreed this should not happen but old timer is spot. Everyday new patients are diagnosed and the old ones continue to come and the management fail to increase resources. To do a good job my nurse specialist devotes her life to her thousand odd Biologics patients. I have written to the hospital a few times but nothing changes. Scorpius I agree the way to go is complain to our MP's.

  • I agree the NHS is struggling. I was told I wouldn't be referred for my continued pain in my ankle, fingers, wrists and knees despite my mum having RA for 30 years, her sister being diagnosed in 2008 and my cousin having psoriatic arthritis because my bloods were negative and therefore the funds were not available...I even told my GP that NRAS recommended I wqs referred to be asked who NRAS was and what do they know? I have, as you can imagine, changed GPs within the same surgery and self paid to see my consultant. I am now fighting an upward battle to get back into the NHS as can not afford to be a private patient and I want to be a NHS patient so I can get the nurse support. However, my privately paid for consultant forgot to give my clinic notes to his secretary so I didn't get the methotrexate started for another week and he forgot to mention I need an MRI scan on my hands and wrists, meaning I've had to email the secretary to ask her to ask my consultant to write to my GP for the's crazy. I couldn't have an X-ray with the form I was given by my consultant because he said circled private patient instead of NHS. I've had no one explain what RA is, no one tell me what Methotrexate is only what to look out for when taking it...lucky I know what RA is but I never asked mum how it started in her and if what I'm finding is normal. Lucky, I'm close to my aunt, but I don't what to ask her all the time. I'm very grateful for this group and NRAS. I read a very Interesting article of methotrexate in the Arthritis Research magazine, which I found very interesting. My high BP no one has explained to me, I'm only 33 and fit and healthy. Not overweight. I know the NHS is pushed and it's hard that I'm trying to merge 2 areas, but I'd like some kind of answers! I have no idea when I see the rheumatoid nurses and no one has discussed pain relief.

    Regarding your issue, my father in law recommended I speak to Health Watch (he works for them) which is good and sound like a great idea, even for me to chat to about my issues. I am definitely going to ask for the hand written notes as mentioned above...what a great idea! Happy Christmas and hope you are all having a good day x

  • As far as I know leflunomide is not expensive. The nurse should have given you letter for GPs or can they not phone one another ...I am on leflunomide but keep getting urine infections .

  • Thank you AbbieJ55 for your reply. The nurse never offered me a letter for my GP nor did I think I could have got one but I do now! First thing tomorrow I will be phoning the specialist nurse to see If they have done anything about the message I left them. I have no idea of the cost of Leflunomide but it really should not matter and the GP should not have made me feel guilty about adding more expense to his practise budget. The GP will just have to do what the hospital tells him and just get on with it!! ( I am still furious that I have been put in this position to have to chase after my meds ) Jean

  • I've been there myself Jean. I had to fight to get MTX injections as my Surgery said they could only prescribe tablets. The reason of course was cost, approx £2 for 28 tablets rather than £17 approx per prefilled syringe so a difference in cost for me at my dose per month of approx £66. I eventually got what my Rheumy presribed but only after reminding them they'd signed up to shared care needing to get my Rheumy & nurse involved. What sound me up most is that I used to work for them so they knew I wouldn't sit back & take it! FYI leflunomide costs £14 to £15 dependant on dose, basic price for 30 tablets. I agree with you cost shouldn't matter, it's what your Specialist has prescribed so there should be no argument! The trouble is GP Surgeries are under increasing pressure to reduce prescribing costs but it shouldn't be up to us to stand up & demand what's prescribed by our Specialists. Surely the better plan would be to employ Prescibing Advisers periodically to oversee patients needs & requirements to ensure no unnecessary drugs are being prescribed & so reduce prescribing budgets leaving room for the necessary drugs to be readily prescribed? Ok, I've stepped down from my soapbox now.

  • Thank you for your reply nomoreheels. Its interesting to know the cost of our meds and now I know why we are all shunted onto taking Methotrexate first despite having to suffer the horrible side effects of nausea, headaches etc and in my case affecting my lungs, because it is cheaper! Still furious but hopefully will have it sorted by this afternoon.

  • If I'm honest I wish my Consultant had been a bit more of the gung ho approach type & started me on MTX instead of hydroxychloroquine which worked for about 6 months then tailed off so MTX was added. Turns out MTX as the one DMARD controls me better! I understand why they start us off on tablets as it would appear most people suffer the most common side effects yet those who switch to injections mostly tolerate it better. Of course taking it orally first may give the subcut an advantage by way of the system has already become used to the drug. I also understand if there is a cheaper alternative they're duty bound to try us on that first. I've worked alongside the meds & appreciate how their hands can be sometimes tied, but sometimes there should be a little wriggle room.

    I hope you have a positive outcome & you receive your script but do please take the advice you've received & ask to be copied in on any correspondence to your GP or at least ask your Rheumy or Nurse to make a note for you to hand in should you have a change of meds or if they request they monitor you in the future. They must have signed a signed shared care agreement for your hospital to make the requests in the first place so let them know you're aware of that!!! Kick a$$ Jean!

  • I usually do receive the same letter as the GP after every visit to Rheumatology but it's been unfortunate that it had not been sent quickly enough this time to avoid the situation I have found myself in. All sorted now but at least I know now from the advice I have been given that I can get a letter from the Nurse/Rheumy at the time of the appointment so that it won't happen again.

    What would we do without this site and all the people who help us?

  • Yes, it's great & we learn a lot from each others experiences don't we? Just typical that it was something out of the norm though?

    One of my Consultants abroad always wrote a note outlining things but my, his was the worst doctor-writing I've ever come across & unless they'd been in the meeting nobody would've been able to figure it what it said!

  • Hi jean jack,

    sorry that you are having so many problems with the NHS. I have put a link below on the complaints procedure. It is unacceptable that you should be left without medication through no fault of your own, but sadly you are not alone in having problems with some section of the NHS:

    I hope you manage to get your medication in time,

    Best wishes

    Beverley (NRAS Helpline)

  • Thank you Beverley for the link. All sorted now albeit entirely through my own actions and determination and I pick up my prescription tomorrow. Jean

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