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Is this usual? Sorry this is so long.

mknightmknight Posts: 4
I moved to the UK a year ago, and am having some questions about my treatment here.

I was diagnosed with rheumatoid arthritis more than ten years ago (I'm 41 now) , and have been receiving fairly aggressive treatment for about four of those. When I arrived in the UK I had been receiving treatment from an American/Canadian arthritis clinic four three years and was on 25mg methotrexate injections weekly and 2g if sulfasalazine daily, along with 5mg folate daily.

When I got here I found a GP and asked for a referral to a rheumatologist. After a long delay I was given an appointment at the local hospital (Royal Preston)'s rheumatology clinic. I met the rheumatologist for around ten minutes, half of which time he spent complaining at me that he had not seen the referral from the GP. I have all my treatment records from my previous clinic, and I showed him those. He did the basic examination, asked some questions, and used the 1-10 sliding scale pain chart. I said 6 to 7 on the chart. I also told him that I'd been having considerable pain in my right hand and hip, and he said he would arrange for steroid injections.

At the end of the appointment, I had to ask him for a prescription for my medication, and he said that he didn't give prescriptions, but agreed to do so as a special arrangement. I couldn't get him to explain where I would otherwise get the medication (throughout all of this he was very rude, brusque, and couldn't sit still - I actually thought he might be on some kind of amphetamine, it was so bad). He did give me a prescription for methotraxate, and told me to take it to the hospital pharmacy. I was told to get the sulfasalazine from my GP.

I got the methotrexate a week later, in pre-loaded syringes, without needles. I had to go to the rheumatology clinic to get needles, and the nurse was really surprised, but handed me a few needles from their own supply (thick needles for taking blood samples, not fine injection needles - she didn't have any of those). My GP was completely surprised that he was expected to provide the prescription for sulfasalazine, but agreed, again, counter, apparently to standard practice. He also told me that I could get the folate from the pharmacy without a prescription.

The pharmacist tells me that I absolutely need a prescription for folate, but that I only need to take it weekly (I was taking it daily).

I am now getting the methotrexate monthly from the hospital, and having monthly blood tests (although nobody seems to read them, my Hb level has been below twelve for a year, and below ten for the last three months). I have to go to the clinic and beg the nurses for needles each month (literally, there is no system for dispensing needles that I can see - I have to hang out in the corridor and wait for a nurse to pass and ask them). I have to see my GP each month for sulfasalazine, and for folate.

I did have the steroid injections, at the hospital. I received a letter from the rheumatology clinic, and was expecting a routine follow up, but I was given three steroid injections (I had been told by the nurses that steroid injections were not done at Royal Preston, but that I would need to travel to another site for them, which is why I was not expecting them).

I have not seen the rheumatologist for a year. My treatment has not been revised for two years (since the clinic simply continued the regime I had been on prior), this despite my telling the doctor a year ago that my pain was 6 or 7 on a scale of 1 to 10. I did have x-rays done a year ago, but have not seen them, or discussed the results with anyone, and I do not believe I have had rheumatoid factor or anti-nuclear factor blood tests in that time, either.

Is it really normal that each month I would need to see four different medical practitioners (blood clinic nurse, GP, rheumatology nurse for needles, and hospital pharmacist) just to maintain the treatment regime I'm on, but that I would not see a rheumatologist or have any opportunity to discuss my treatment at all? I have tried to make an appointment to see the rheumatologist, but have been told I need to go back through the process of seeing a GP and asking for a referral, and waiting another ten weeks. I have not done this, at least in part because I am ambivalent about seeing the same rheumatologist as before.

Every time I speak to someone from the rheumatology clinic I am given the impression that I am somehow doing things wrong, that I am inconveniencing them, and trying to game the system in some way. When I speak to my GP he seems as baffled and frustrated by all of this as I am, but he cannot do anything, or change my treatment in any way.

So, is this normal? Should I complain to the local trust? Should I try to get my treatment moved to another region? I do get the impression that I am not the only person who is finding this difficult - the hospital pharmacist and the phlebotimists have both let slip that they frequently have issues with requests from the rheumatology clinic, things going wrong, patients confused. Am I missing something, is there maybe another kind of person between the GP, who cannot prescribe RA treatments, and the rheumatologist who is completely unavailable, that I should be speaking to?

I'm sorry this is so long, but I am really frsutrated (and in pain), and am not used to being this confused and disoriented (and I speak English fluently and have three university degrees - I hate to imagine what all of this is like for people who have language or other difficulties).

Comments

  • denpendenpen Posts: 389
    edited 30. Nov -1, 00:00
    Hi There
    What you are experiencing is the british way of medicine known as the NHS. Oh and Royal Preston Hospital is just the same for everyone whether you are born here or not, they treat everyone the same. So welcome and join the queue.
    Denise.
  • mknightmknight Posts: 4
    edited 30. Nov -1, 00:00
    I don't think you understood my issue. I'm not complaining about the wait, nor am I implying that I am being treated differently because I am a foreigner.

    I am asking whether it is usual to not discuss your treatment with anyone for a year of taking that treatment. Do most patients not see their rheumatologist for a whole year?

    I am also asking whether it is usual to get medications intended to treat one condition from different places - the methotrextate from the hospital pharmacy, the needles from the rheumatology clinic and the sulfasalzine and the folate from my GP.

    I am also asking whether I should expect that someone is reading my monthly blood tests, and will notify me for a consultation when my Hb level goes so low, or should I bring it to someone's attention, and if so, whose?
  • magentamagenta Posts: 1,604
    edited 30. Nov -1, 00:00
    mknight wrote:
    I don't think you understood my issue. I'm not complaining about the wait, nor am I implying that I am being treated differently because I am a foreigner.

    I am asking whether it is usual to not discuss your treatment with anyone for a year of taking that treatment. Do most patients not see their rheumatologist for a whole year?

    I am also asking whether it is usual to get medications intended to treat one condition from different places - the methotrextate from the hospital pharmacy, the needles from the rheumatology clinic and the sulfasalzine and the folate from my GP.

    I am also asking whether I should expect that someone is reading my monthly blood tests, and will notify me for a consultation when my Hb level goes so low, or should I bring it to someone's attention, and if so, whose?

    Hiya,
    I personally don't think you're being treated well at all. Very unusual story about rhuemy not prescribing and your GP telling you you can get folate from your chemist without a script-well, that's just crap! A year to wait for follow-up appt. is long. I think you need a referral to another rhuematologist and maybe changing GP? I'm sorry things aren't going well for you. Hope things get better soon :wink:
    Magenta x
  • denpendenpen Posts: 389
    edited 30. Nov -1, 00:00
    I am so Sorry... I didnt mean anything personal to you by saying that you should join the queue I do appologise if I gave you the wrong impression. I just meant that I am used to waiting around and being passed from pillar to post by the NHS. Here are a couple of my examples on 12th January I had a pre op and was told that I would get a date to go into hospital 4 weeks later I hadnt heard anything, so I rang the hospital only to be told quite abruptly that they had no slots and when they had some they would let me know I wasnt even asked my name by the lady on the phone. Another time I was referred for physio and waited for 12 months for a first appointment.
    I have been referred to see a cardiologist in October 2008 I am still waiting for the appointment to come through.
    Once again my apologies to you.
    Good Luck with your treatment.
    Denise.
  • elnafinnelnafinn Posts: 8,043
    edited 30. Nov -1, 00:00
    It may be a good idea for you to get in touch with Patient Advice and Liaison Services, (PALS), each NHS hospital has one.

    If you are interested, google PALS and you should find all the information you require to hopefully start getting some helpful advice in making sense of what seems a total muddle and lack of care. The treatment you are receiving is abysmal.

    The more people that complain to PALS, the better. If people do not, nothing will be done to improve the situation, for sure.

    With regards to the folic acid, some peeps on here are told by their rheumi's to take it daily and others weekly. Not sure why but if you go on well taking it daily then why discontinue because the pharmacist here tells you so. It is upto the rheumi and you, I would have thought. I also believe that peeps on here get their monthly metho/syringes packs sent to them directly each month.

    I wish you well in your "fight" for a better service all round regarding your health. You certainly deserve it.

    Elna
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • helpline_teamhelpline_team Posts: 2,067
    edited 30. Nov -1, 00:00
    mknight wrote:
    I moved to the UK a year ago, and am having some questions about my treatment here.

    I was diagnosed with rheumatoid arthritis more than ten years ago (I'm 41 now) , and have been receiving fairly aggressive treatment for about four of those. When I arrived in the UK I had been receiving treatment from an American/Canadian arthritis clinic four three years and was on 25mg methotrexate injections weekly and 2g if sulfasalazine daily, along with 5mg folate daily.

    When I got here I found a GP and asked for a referral to a rheumatologist. After a long delay I was given an appointment at the local hospital (Royal Preston)'s rheumatology clinic. I met the rheumatologist for around ten minutes, half of which time he spent complaining at me that he had not seen the referral from the GP. I have all my treatment records from my previous clinic, and I showed him those. He did the basic examination, asked some questions, and used the 1-10 sliding scale pain chart. I said 6 to 7 on the chart. I also told him that I'd been having considerable pain in my right hand and hip, and he said he would arrange for steroid injections.

    At the end of the appointment, I had to ask him for a prescription for my medication, and he said that he didn't give prescriptions, but agreed to do so as a special arrangement. I couldn't get him to explain where I would otherwise get the medication (throughout all of this he was very rude, brusque, and couldn't sit still - I actually thought he might be on some kind of amphetamine, it was so bad). He did give me a prescription for methotraxate, and told me to take it to the hospital pharmacy. I was told to get the sulfasalazine from my GP.

    I got the methotrexate a week later, in pre-loaded syringes, without needles. I had to go to the rheumatology clinic to get needles, and the nurse was really surprised, but handed me a few needles from their own supply (thick needles for taking blood samples, not fine injection needles - she didn't have any of those). My GP was completely surprised that he was expected to provide the prescription for sulfasalazine, but agreed, again, counter, apparently to standard practice. He also told me that I could get the folate from the pharmacy without a prescription.

    The pharmacist tells me that I absolutely need a prescription for folate, but that I only need to take it weekly (I was taking it daily).

    I am now getting the methotrexate monthly from the hospital, and having monthly blood tests (although nobody seems to read them, my Hb level has been below twelve for a year, and below ten for the last three months). I have to go to the clinic and beg the nurses for needles each month (literally, there is no system for dispensing needles that I can see - I have to hang out in the corridor and wait for a nurse to pass and ask them). I have to see my GP each month for sulfasalazine, and for folate.

    I did have the steroid injections, at the hospital. I received a letter from the rheumatology clinic, and was expecting a routine follow up, but I was given three steroid injections (I had been told by the nurses that steroid injections were not done at Royal Preston, but that I would need to travel to another site for them, which is why I was not expecting them).

    I have not seen the rheumatologist for a year. My treatment has not been revised for two years (since the clinic simply continued the regime I had been on prior), this despite my telling the doctor a year ago that my pain was 6 or 7 on a scale of 1 to 10. I did have x-rays done a year ago, but have not seen them, or discussed the results with anyone, and I do not believe I have had rheumatoid factor or anti-nuclear factor blood tests in that time, either.

    Is it really normal that each month I would need to see four different medical practitioners (blood clinic nurse, GP, rheumatology nurse for needles, and hospital pharmacist) just to maintain the treatment regime I'm on, but that I would not see a rheumatologist or have any opportunity to discuss my treatment at all? I have tried to make an appointment to see the rheumatologist, but have been told I need to go back through the process of seeing a GP and asking for a referral, and waiting another ten weeks. I have not done this, at least in part because I am ambivalent about seeing the same rheumatologist as before.

    Every time I speak to someone from the rheumatology clinic I am given the impression that I am somehow doing things wrong, that I am inconveniencing them, and trying to game the system in some way. When I speak to my GP he seems as baffled and frustrated by all of this as I am, but he cannot do anything, or change my treatment in any way.

    So, is this normal? Should I complain to the local trust? Should I try to get my treatment moved to another region? I do get the impression that I am not the only person who is finding this difficult - the hospital pharmacist and the phlebotimists have both let slip that they frequently have issues with requests from the rheumatology clinic, things going wrong, patients confused. Am I missing something, is there maybe another kind of person between the GP, who cannot prescribe RA treatments, and the rheumatologist who is completely unavailable, that I should be speaking to?

    I'm sorry this is so long, but I am really frsutrated (and in pain), and am not used to being this confused and disoriented (and I speak English fluently and have three university degrees - I hate to imagine what all of this is like for people who have language or other difficulties).


    Thank you for your posting on the forum. It sounds as if your treatment has been very confusing for you and I can understand your frustration. As has already been suggested by other forum users contacting the Patient Advice and Liaison Service at your hospital in order that they can help and support you seems the appropriate route to take. If you want to consider moving to another hospital then you can look on the NHS Choices website on http://www.nhs.uk/Pages/homepage.aspx. This will tell you about the services in different areas. I hope this has been helpful.

    Best Wishes
    Dawn
  • helpline_teamhelpline_team Posts: 2,067
    edited 30. Nov -1, 00:00
    NICE (the National Institute for Health & Clinical Excellence) has just produced it's guidance for people with Rheumatoid Arthritis. It discusses the care and treatment options that should be available in the NHS. It's quite a useful booklet & has sections called 'questions you might like to ask your healthcare team/about your treatment' and other helpful tips about what to expect from your health team.
    We have copies here so if anyone would like one just send us a private message or an email to [email protected] with your address and we'll post one to you.
    Best wishes
    Val
  • gabbleratchetgabbleratchet Posts: 2
    edited 30. Nov -1, 00:00
    England is a joke for treatment. Scotland on the other hand is a different matter. Fifty times better and the staff are brilliant.
  • theresa4theresa4 Posts: 696
    edited 30. Nov -1, 00:00
    HI Sorry you are having such a horrible time I hope things have improved for you now, if not I suggest you move to a different hospital your gp can arrange this as you are entitled to treatment where you want. As for this hospital I think its a disgrace. I have 3 monthly appointments with my rheumy and he ensures he sees each of his patients every time they attend his clinic even if you see his registrars first he still comes and checks things. I also have a rheumatology nurse specialist in fact several of them and a telephone line where I can leave messages for them and they ring back when they can. If I have problems I can ring them and they discuss any things out of their remit with the rheumy docs then ring back. Maybe I am very lucky but I would honestly do some research about other hospitals within your travelling distance and asked to be referred there instead. My RA is not under control but the department has been very good and no cost has been spared in trying to find something that works to give me my life back. As for needles I was given a box of 100 on the day I was going on MTX and am regulary asked if I need any more. Hope things get better for you
    Theresa x :D
    mknight wrote:
    I moved to the UK a year ago, and am having some questions about my treatment here.

    I was diagnosed with rheumatoid arthritis more than ten years ago (I'm 41 now) , and have been receiving fairly aggressive treatment for about four of those. When I arrived in the UK I had been receiving treatment from an American/Canadian arthritis clinic four three years and was on 25mg methotrexate injections weekly and 2g if sulfasalazine daily, along with 5mg folate daily.

    When I got here I found a GP and asked for a referral to a rheumatologist. After a long delay I was given an appointment at the local hospital (Royal Preston)'s rheumatology clinic. I met the rheumatologist for around ten minutes, half of which time he spent complaining at me that he had not seen the referral from the GP. I have all my treatment records from my previous clinic, and I showed him those. He did the basic examination, asked some questions, and used the 1-10 sliding scale pain chart. I said 6 to 7 on the chart. I also told him that I'd been having considerable pain in my right hand and hip, and he said he would arrange for steroid injections.

    At the end of the appointment, I had to ask him for a prescription for my medication, and he said that he didn't give prescriptions, but agreed to do so as a special arrangement. I couldn't get him to explain where I would otherwise get the medication (throughout all of this he was very rude, brusque, and couldn't sit still - I actually thought he might be on some kind of amphetamine, it was so bad). He did give me a prescription for methotraxate, and told me to take it to the hospital pharmacy. I was told to get the sulfasalazine from my GP.

    I got the methotrexate a week later, in pre-loaded syringes, without needles. I had to go to the rheumatology clinic to get needles, and the nurse was really surprised, but handed me a few needles from their own supply (thick needles for taking blood samples, not fine injection needles - she didn't have any of those). My GP was completely surprised that he was expected to provide the prescription for sulfasalazine, but agreed, again, counter, apparently to standard practice. He also told me that I could get the folate from the pharmacy without a prescription.

    The pharmacist tells me that I absolutely need a prescription for folate, but that I only need to take it weekly (I was taking it daily).

    I am now getting the methotrexate monthly from the hospital, and having monthly blood tests (although nobody seems to read them, my Hb level has been below twelve for a year, and below ten for the last three months). I have to go to the clinic and beg the nurses for needles each month (literally, there is no system for dispensing needles that I can see - I have to hang out in the corridor and wait for a nurse to pass and ask them). I have to see my GP each month for sulfasalazine, and for folate.

    I did have the steroid injections, at the hospital. I received a letter from the rheumatology clinic, and was expecting a routine follow up, but I was given three steroid injections (I had been told by the nurses that steroid injections were not done at Royal Preston, but that I would need to travel to another site for them, which is why I was not expecting them).

    I have not seen the rheumatologist for a year. My treatment has not been revised for two years (since the clinic simply continued the regime I had been on prior), this despite my telling the doctor a year ago that my pain was 6 or 7 on a scale of 1 to 10. I did have x-rays done a year ago, but have not seen them, or discussed the results with anyone, and I do not believe I have had rheumatoid factor or anti-nuclear factor blood tests in that time, either.

    Is it really normal that each month I would need to see four different medical practitioners (blood clinic nurse, GP, rheumatology nurse for needles, and hospital pharmacist) just to maintain the treatment regime I'm on, but that I would not see a rheumatologist or have any opportunity to discuss my treatment at all? I have tried to make an appointment to see the rheumatologist, but have been told I need to go back through the process of seeing a GP and asking for a referral, and waiting another ten weeks. I have not done this, at least in part because I am ambivalent about seeing the same rheumatologist as before.

    Every time I speak to someone from the rheumatology clinic I am given the impression that I am somehow doing things wrong, that I am inconveniencing them, and trying to game the system in some way. When I speak to my GP he seems as baffled and frustrated by all of this as I am, but he cannot do anything, or change my treatment in any way.

    So, is this normal? Should I complain to the local trust? Should I try to get my treatment moved to another region? I do get the impression that I am not the only person who is finding this difficult - the hospital pharmacist and the phlebotimists have both let slip that they frequently have issues with requests from the rheumatology clinic, things going wrong, patients confused. Am I missing something, is there maybe another kind of person between the GP, who cannot prescribe RA treatments, and the rheumatologist who is completely unavailable, that I should be speaking to?

    I'm sorry this is so long, but I am really frsutrated (and in pain), and am not used to being this confused and disoriented (and I speak English fluently and have three university degrees - I hate to imagine what all of this is like for people who have language or other difficulties).
    There are many things in life that will catch your eye, but only a few will catch your heart...pursue those. --Michael Nolan



    Theresa xxx
  • katherine810katherine810 Posts: 67
    edited 30. Nov -1, 00:00
    Mmm. My mother goes through so much hassle just to get the basic things i need. Gloves for my injections, they wouldn't give them at the hospital pharmacy, so we ended up having to go and ask one of the nurses in childrens outpaients if she could please give us some gloves... she was confused as to why they wouldn't give us them.

    Everytime I go with mum to pick up my MXT injections nobody understands what they are, or where they need to get them from, alot of the time my mum rings up before hand to ask if they've got the injections ready for her to collect, they say yes so she goes up there only to be told they've only done 2 or something. Which means more trips to the hospital which doesn't seem fair on her...

    Everytime we go to collect my blood test results from the doctors we get treated as though we're doing something wrong, even though thats what we've been told to do and have been doing for 10 years now!

    It's all very confusing...

    I know it probabally shouldn't be, your not alone though, i hope this gets sorted for you, it just seems to add more stress to life...

    Katherine
    x
  • dvaidrdvaidr Posts: 25
    edited 30. Nov -1, 00:00
    It really doesn't surprise me; the way in which you were treated. Fortunately, I live in Scotland but am a native of Northumberland. The difference between English and Scottish treatment is vast. It's not just the treatment; it has a lot to do with approach and attitude.
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