PALS?

Hi I have finally seen my GP and after discussing my lack of confidence in my consultant she is suggesting that I contact PALS.

Is this wise, will it help? I still can't get over how my regular consultant completely disregarded the outcome of my visit with the locum. I am finding it hard to trust him now. The locum made so much sense and made a recommendation to move to biologicalls but my consultant poo pooed her and wants me to move on to lufludamide. I have already failed Methatrixate, hydrochloroquin and I think that I am failing sulphasalazine.

My GP agrees that it is possible that my bloods can be ok bit I still have pain. My consultant made me feel like I am crazy and seems only to,care about joint damage and not my physical capabilities or mental health.

I would really appreciate any comments. Thanks.. Steph.

11 Replies

oldestnewest
  • Hi Steph. I don't know if PALS would take on a complaint like this but I don't think we have them where I live in the North of Scotland so I might well be wrong - and your GP would know. I know you have to have failed 3 DMARDs to qualify so this does seem wrong but then others on this site seem to me to meet all the criteria for Bologics but because they are so expensive no one seems to want to know. I think it would be your GP practice that covers the costs so if she is advising you that you need them then she is probably right.

    How about showing willing and at least trying Leflunomide -which is on a par with MTX and stronger than Hydroxy and Sulpha I'm told? Might be worth a shot as each drug works differently for different people and it just might turn out to be the one for you? You could always get your GP to refer you to a different rheumy consultant for a second opinion if you don't like yours. He shouldn't be making you feel like you're crazy and nor should he be poo-pooing you - that's just unnecessary. Tilda x

  • The locum sounds very good your consultant sounds like mine avoid biologics at all cost due to cost .. aagh .. which are of the country are you from?

  • Hi Aummer I,am from staffordshire?

  • Hi Tilda you are so,good and reassuring. I have decided to give lufludamide a try but I still feel that my consultant is being unfair so I think that I have to speak to PALS. Will update you. Thank you.

  • leflumonide works well for some people no good if you suffer from border line or high blood pressure. My gp 2 years ago was thinking of sending me up to a staffs hosp( ps Iwas born in staffs Kingswinford.

  • Its definitely worth talking to PALS - after you have told them your story and they have told you what they can do, you can then make the decision if you do want to take it further. I think if you are actually eligible for anti-tnfs (from having failed 3 DMARDs), then the consultant shouldn't be insisting you try yet another DMARD.

    Remember too that PALS are an advice and liaison service, not just a complaint service, so they should be able to give you options for what you can do.

    If anyone is in Scotland and wants to know the equivalent service - its PASS (Patient advice and support service) and CAB has the contract to manage this service, so you need to phone your local CAB rather than the hospital to ask to speak to someone. Should be the same kind of help available though. (Advice, liaison, and helping you manage complaints if necessary)

  • I spoke to PASS recently about my dispute. They told me I have a year to complain and I should make an appointment to come in. I've registered with a different consultant in same department and were getting my treatment sorted out. Only after that will I decide about the complaint. But I have paperwork so when I decide to go, I can. My reasoning was that I'm the first priority, but then I want to ensure that no one goes through what I've been going through.

    My first thought would be can you get a good second opinion and transfer to a different consultant first? Good luck.

  • I am in a similar position Sparker exept I am under co-consultants and 1 says we still have plenty of things to try and the senior one saying there is nothing else to offer me (onfused or what).

    I think it would be much easier for you to be referred to a different consultant, but take care to out the one you choose. Perhaps if you put on here a town or city you can access someone may come along with the name of a good consultant.

    I have already changed once - not because of the consultant, but because of the way the clinic was run. Wish now I had asked if he held a clinic at the hospital I now go to.

    Wish you the best whatever you decide.

    Love C xxx

  • Hi Steph

    Just to clarify, for RA the criteria for getting onto biologic therapy is having failed on two standard DMARDs, one of which must be methotrexate (unless it is contraindicated). Along with a DAS (disease activity score) of 5.1 on two occasions one month apart which shows you have high disease activity.

    It would be worth having a chat with PALS to see if they can offer any advice but, as the others have suggested, perhaps you could speak to your GP about getting a second opinion if you really aren't getting on well with your current rheumatologist.

    We often speak to people on the helpline who find that their blood results don't seem to accurately reflect how they're feeling, and so it's important that health professionals take this into account and treat you as a whole not just a set of blood test results!

    I hope you are able to resolve things soon and move forwards with your treatment.

    Kind regards

    Sarah Kate

    NRAS

  • Hi Kate

    I do meet the criteria, however after the locum consultant did my DAS my perm consultant did not call me back for 2 months? He then went on to,say that he could not see why the locum had done this as their notes were sparse ( have seen the GP let and there is nothing sparse about them)

    The consultant will not listen to my pain as he is judging by my bloods and you are correct they are ok. It will be difficult to get a second opinion as my GP has stated that they may have problems getting blood results from another provider!

    While all of this is going on I feel that this disease is stealing my life away, it has now been over 3 years and things are getting worse not better.

    I now am not sure who to trust and feel anxious about the future. I could never have in my wildest dreams believed that this could happen. Steph

  • Hi Steph

    Sorry for the late response, we do not get notified of responses to previous threads. It sounds as if it would certainly be worth contacting PALS and I hope they are able to help. I'm not quite sure I understand what your GP meant about getting blood results from a different provider, I wouldn't have throught this would be necessary to get a second opinion. There's a little information about getting a second opinion on the NHS site: nhs.uk/chq/Pages/910.aspx?C...

    I'm really sorry to hear how anxious you're feeling at the moment. Please feel free to call the helpline on 0800 298 7650 if you want to discuss things further.

    Kind regards

    Sarah Kate

    NRAS

You may also like...