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Can I complain?

claircclairc Posts: 90
edited 30. Sep 2010, 05:44 in Living with Arthritis archive
I'm not happy with the treatment I've had from the NHS, especially over the past 12 months and I wondered if I could or if it was worth complaining. I know about PALS but they said if I could only complain about a single doctor and complaints about GP were dealt with in a different way to complaints about hospital doctors and I need to complain about ALL of them!

I was diagnosed with Reactive Arthritis in August 2009. I was given a steroid injection and sent home from hospital. I was not given any information about my condition although I was seen at a general outpatients clinic twice although nothing else was done.

I had further flares and kept going back to the GPs. They treated me with painkillers and offered no other advice. I was having a lot of infections, Dr T blamed it on me having ME. He told me to exercise more, find a purpose in life and stay away from doctors, especially specialists. It is against NICE guidelines to advise patients with ME to exercise more without proper monitoring.

I had another flare and begged to see a rheumy. The rheumy said because there was no deformation of my joints there was nothing he could do. He sent me back to my GP to find out why I kept getting infections that triggered the arthritis.

My GP referred me to Dr S at the infectious diseases clinic. He could do nothing for me because there was nothing wrong with my immune system. He referred me to Dr E at immunology but Dr E REFUSED to see me because there was nothing wrong with my immune system according to the test results.

I had another flare and a GP Dr A prescribed naproxen for 2 weeks. This did nothing and I ended up on tramadol and gabapentin for the pain. I went back to see Dr A and he REFUSED to refer me to a rheumy and said I needed to take a herbal supplement to balance my system.

I complained to the practice manager who persuaded DR A to refer me to DR L. An appointment was made for me to see Dr L but he cancelled it because he doesn't deal with "chronic fatigue".
I complained again and I had to do my own research to find a doctor who dealt with reactive arthritis. The PCT agree to send me to Dr M in Norwich. Visiting him cost me around £200 in travelling expenses but it was worth it because in 10 minutes he diagnosed with Palindromic Rheumatism and proposed treating me with hydroxychloroquine.

I have suffered in terrible pain for 13 months and have paid a small fortune in prescriptions when all it took was 10 minutes with the right doctor to diagnosed me and give me a treatment plan. Best of all I am still waiting to be treated because I have to wait for Dr M to write to my GP and then my GP has to refer me to a rheumy who agrees with Dr M's diagnoses and treatment plan for me to even get a prescription for the drugs I need.

I am not a happy bunny. Is there anyone I can complain to? Will it make the slightest bit of difference?

Clair

Comments

  • sharmainesharmaine Posts: 1,638
    edited 30. Nov -1, 00:00
    Hi Clairc

    Have you spoken to the Citizen's Advice bureau? They may be able to help your story sounds very complex! One of the positives is I suppose that at least you have a diagnosis and all you're waiting for is treatment.

    The funny thing is arthritis can be jolly painful even when you are on your medication. However, if you feel that you're not getting any help for your condition or the pain then you must seek advice. Some of us have had bad experiences with the medical profession, however, they're not all bad!! I hope you find someone who will give you the correct treatment soon. I don't think there's an arthritis sufferer on earth who is ever really 'pain free'. I might be wrong!!! There's always some discomfort with arthritis.

    Being stressed isn't good when you have this condition.

    Have you tried telephoning the Arthritis confidential helpline?

    Regards
    Sharmaine
  • cthornleycthornley Posts: 627
    edited 30. Nov -1, 00:00
    Oh dear you have been put through the wringer, more complex or unusual diagnoses can always be more traumatic and take a long time to sort out and this can make the process frustrating but I guess that what has made you particularly annoyed is the way you were handled throughout the whole thing.
    Personally I would focus my complaint on your GP....they should be your guiding light in these situations and this responsibility can only really be handed over at all once you are properly settled with a specialist, and even then they should be checking in on your progress.
    In all my years as a difficult patient (believe me I can be difficult when I want to) I have complained about 1 GP and 1 consultant. In the case of the GP the practice was rubbish too so I left following my complaint and got a new GP. The consultant I changed and wrote to the hospitals chief exec to complain (weird because technically at the time he was also my husbands boss ).
    The complaint about the consultant was more successful, I got a fab new consultant (head of department) who is fabulously attentive, and very helpful, the original consultant got a slapped wrist (i’m not supposed to know this but gossip is a perk of having a medical husband) and I got a formal apology.
    The GP practice was less helpful and supportive but I felt I had highlighted a problem that they may not have been aware of previously and I also copied my letters to the university as they were at the time referring students to them as new patients. They lost this support and they actually got into a lot of difficulties with the university.
    I don’t know what you want from your complaint and you may be disappointed with the outcome BUT that doesn’t mean that you shouldn’t complain. Problems must be highlighted otherwise often they go undetected. Also try copying in all letters to the SHA (Strategic Health Authority ) as they are the overarching body for your healthcare and should be able to spot problems in the system.
    Hope you get something that helps, I’m glad that you finally have a diagnosis and that you can now move forward.
    Chrissie
  • Rainbow77Rainbow77 Posts: 352
    edited 30. Nov -1, 00:00
    Hi Clairc

    I totally understand where you are coming from. I am got some spare hydroxy, can send you some if you like!!!! (Only joking - the mods will be one to me if I suggest that).

    I think that you have every right to complain. I don't understand why they did not dispense drugs for you at Norwich Hospital. Where I go they give you a months supply and then that would of given them time to write etc. It is going to take a few weeks to get a referral and then prescription for these drugs. I would go to see your GP about this and see if they can speed up the process.

    I am sure that there are patient groups that you could write to and see if they can support you in making a complaint. This is not PALS, but I am sure they will have one in your area.

    I think your story would be a fantastic case for the medical profession to learn some lessons from and esp GOV and NICE. So maybe that will be worth looking into. They would definitely help you with it.

    It is going to make a difference? If it makes a difference to how you feel about it then I think it is worth it. It may be that you need to get it all down onto paper to help you deal with all you have been through. I am going to google to see if I can find any patient groups.

    Take care clair - hang in there - you are nearly there.

    Fayann x
  • elainebadkneeelainebadknee Posts: 3,703
    edited 30. Nov -1, 00:00
    Hi Clair

    I may or may not be of help. I got told last week if public complain about consultants then I thought it went in form of - we send letter, Chief Ex replies, then I can ring up and speak to woman who is his sec who can arrnage a meeting with consultants and other people, plus a person for your moral support........I only went as far as CE reply and phoning sec....I got told if I pursued it further then when consultants have an appraisal, review then every complaint goes against their record, a black mark so to speak and they dont like it....Now I think if youre now getting the diagnosis you feel is the right one, dont waste energy on first one...I say this cos I have wasted most of this year with a useless consultant but if I let it eat into me I will become consumed by it....The most important thing is me, im getting listened to now and treated correctly and while the other consultations were pants, its energy on negatives and thats not good for your health is it in my opinion?
    If you still feel you will complain write, type it all down, that may get it out of your system but its your call really and you can change GP's quite easily if you feel they are at fault too....

    Good Luck

    Elainex
  • ichabod6ichabod6 Posts: 963
    edited 30. Nov -1, 00:00
    Hi Clair

    I may or may not be of help. I got told last week if public complain about consultants then I thought it went in form of - we send letter, Chief Ex replies, then I can ring up and speak to woman who is his sec who can arrnage a meeting with consultants and other people, plus a person for your moral support........I only went as far as CE reply and phoning sec....I got told if I pursued it further then when consultants have an appraisal, review then every complaint goes against their record, a black mark so to speak and they dont like it....Now I think if youre now getting the diagnosis you feel is the right one, dont waste energy on first one...I say this cos I have wasted most of this year with a useless consultant but if I let it eat into me I will become consumed by it....The most important thing is me, im getting listened to now and treated correctly and while the other consultations were pants, its energy on negatives and thats not good for your health is it in my opinion?
    If you still feel you will complain write, type it all down, that may get it out of your system but its your call really and you can change GP's quite easily if you feel they are at fault too....

    Good Luck

    Elainex


    This makes real sense to me.
  • only49only49 Posts: 1,207
    edited 30. Nov -1, 00:00
    hi

    i can only imagine how you are feeling i must be honest i dont think my GP practice is any good and i feel i wont be approaching them any time very soon, i think we both need to complain but you have to remeber as well this stress from all this wont help, but heh we are only feel this way because of the crap service we are given, so i am sure truth be told we are not alone in the way we feel.

    thinking of you.
    sylvia :)stern02.gif
  • elnafinnelnafinn Posts: 8,043
    edited 30. Nov -1, 00:00
    Hi Clair

    I am sorry that it has taken so long for you to see the right person to give you a diagnosis.You really have been given the run around. I do agree with Elaine though, it is water under the bridge, you are now on the right track to being helped. Use your energy on getting the consultant to write to your gp and your gp to find a rheumi for you. It may well have helped you a little by writing your thread today and then receiving our replies. I truly wish you well.

    Luv
    Elna x
    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.
  • StarburstStarburst Posts: 2,546
    edited 30. Nov -1, 00:00
    Hi Clair,

    I'm sorry to hear of the treatment (or lack thereof) you've been recieving. Have you spoken directly to the PCT? I was having some troubles with getting treatment when I was younger (not for RA) and my mum was on the phone at least once a week to our local PCT. She was persistent and phoned them until they knew her by name! You have to pester them and be assertive.

    Good luck!
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    GPs are not experts in any form of RA, so they should have referred you to a rheumatologist earlier, who should have listened and taken all your condition into account. Do you think your reactive arhtritis was/is linked to the recurring gynae problems? Reactive arthritis is a response to infection, and the usual method of treatments is NSAIDS initially, if they fail then the corticosteroid injection/s, then if that fails DMARDS, which can take between 4-6 months to take effect. I think, from what you have said, that they should have referred you much, much sooner. They didn't listen, docs sometimes don't. Naproxen does nothing in a fortnight, all these meds need time to build up in one's system. As I understand things, palindromic rheumatism is just another term for RA, it's a defintition used to cover any pain in muscles, tendons, bones and joints.

    Complain to your practice if that will make you feel better, but conserve your energies for the stressful time ahead. You are due surgery and you are starting hydroxy. Ensuring that works is probably your priority now, plenty of rest and not pushing yourself too hard are the keys here. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • claircclairc Posts: 90
    edited 30. Nov -1, 00:00
    Thanks for all your replies. I'm going to have to think carefully about what to do.

    The problem is I think I have been discriminated against because I was diagnosed with ME when I was 15 years old. If I went to the doctors with any symptoms they were always put down to ME and were never investigated. That discrimination is still ongoing. One doctor told me that ME patients do best if they stay away from doctors, especially specialists, another refused to refer me to a rheumy and a rheumy refused to see me because he doesn't deal with "chronic fatigue".

    I'm really confused at the moment as to what is actually wrong wtih me. I've been grumpy because I've had a fever today. I don't know why I have a fever, it could be related to my gynae problems as I've just finished my period, it could be related to my arthritis or it could just be a virus. I'm just well and truly fed up of being ill and being fobbed off.

    I feel I need to complain to stop this happening to other people, but I don't think it will change anything. I did put in a complaint about an OOH doctor earlier this year. It was just before I was diagnosed with PID. I had several episodes of severe pain, I had maxed out on codeine and he wouldn't give me anything because it was Sunday night and the pharmacy was shut. The trust sided with him because he thought I had period pain. I had to be taken to A&E in the early hours of the next morning and was admitted to hospital the next day by a GP at the practice because he thought something wasn't right me being in pain despite taking strong painkillers. So it seems like the doctors can get away with anything if they say it was their opinion.
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    I think your gynae problems are the root cause of all this, they need to be sorted, you are not a well girl. ME people do face huge discrimination, which does not help. One of the greatest failings of people (not just docs) is the 'I have no experience of this, therefore I don't think it exists' syndrome, in which some are locked. There must be ME support sites, have you ever posted on those? I expect you are not alone with this sort of sad and sorry tale. I feel for you, you have begun to garner some answers to your questions and I really hope your surgery helps. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • elainebadkneeelainebadknee Posts: 3,703
    edited 30. Nov -1, 00:00
    Clair

    If you feel like this then you need to complain but you need to get someone on your side too....I dont know, first of all say to your GP you are disappointed in he/she, and just say it as it is....They may offer apologies, I dont know......You kinda need someone on your side though, im sure that I got told if you complain about consultants you can be offered someone to go with you to meetings re your complaint as a neutral person.....I think they told me it was ACAS to call, try them....
    There must too as DD says be support groups for ME...They can help you most I reckon.....

    Good Luck Again

    Elainex
  • angel1angel1 Posts: 1,651
    edited 30. Nov -1, 00:00
    I hope you are feeling a little better Clair, both physically, and emotionally.

    You said that you feel you have been treated badly by the NHS over the last twelve months, but in fact, from your second post, it obviously goes back a lot further than that.

    When you were first diagnosed with ME, did you find that there seemed to be little, or no information regarding the condition? When you were told that you were better not visiting doctors, I think this was probably because they didn`t have any real knowledge of ME. I`m not sure things are any better today.

    It seems to me that all the rest of your very real problems have been treated subsequently with the ME diagnosis in mind. In other words, you appear not to have been taken as seriously as you deserved to be. This is wrong, but I imagine with so many different medics being involved over the years, it would prove very difficult for you to get a fair hearing now.

    I applaud the way you have pushed and never given up, in finding the right treatment for you. I hope you get that treatment very soon. Please, however, think very carefully before putting added stress on yourself, which will only worsen your condition.

    I wish you all the luck in the world........Ange.x.
  • claircclairc Posts: 90
    edited 30. Nov -1, 00:00
    Thanks again for your replies, much appreciated!

    The trouble with ME is it's a political hot potato. There is no diagnostic test or even a standard diagnostic criteria. It is a diagnosis of exclusion so if they can't find out what's wrong with you they call it ME and stop looking. That makes ME a dustbin diagnosis. The people I have met with ME probably have a whole host of undiagnosed conditions such as MS, thryoid problems, depression, arthritis, Lyme, personality disorders and Lupus but no-one investigates further after the doctors decide to call it ME.

    There are ME support groups out there but many are populated with very ill people taking extreme measures to find treatment. The politics are mindboggling and there is one faction who behave so badly it actually makes things worse for people with ME. If you want any kind of treatment at all then you have to pay privately. NICE guidelines promote 2 forms of treatment on the NHS, CBT and Graded exercise therapy. They can be helpful to a minority of people if they are done right but if they are pushed as a cure they make people much worse. I've been forced into GET and it made me very ill. If I did have arthritis all this time then increasing activity levels on inflamed joints isn't going to help is it?

    There is also the psychological stigma attached to ME. The doctors can't find anything wrong so it must be all in your head. When the GP told me ME patients do best if they stay away from doctors, especially specialists, he didn't mean doctors don't know how to treat patients with ME he meant by seeking medical treatment you are reinforcing the sick role behaviour that keeps you ill. If you believe you are sick and you get doctors to keep running tests on you then you will behave as if you were sick, but if you stay away from doctors and forget you are sick and you recover.

    I don't think I've got ME, I've always doubted the diagnosis and now I have another diagnosis that has the same symptoms of flu like malaise and joint pain I think it could explain why I've been ill and why I haven't got better. No-one has listened to this. I also wondered if the gynae problems were contributing to my poor health and I mentioned it to the gynae consultant but she was doubtful. She said if the hysterectomy helps then look at it as a bonus rather than hoping it will be a cure.
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Morning clairc, I hope you are feeling reasonable today. I have just re-read your post of 6th September and even tho I am not a doctor I think that your gynae problems are at the root of this. Endometriosis is a form of inflammation surely, and the fluid you mentioned, well, why would it be re-absorbed? All the fluid I made in my joints was never re-absorbed, it just collected and solidified. Who says that your hasn't done the same? I think you gynae is right, don't assume the hysterctomy will be a cure, btu I do think it will make a huge difference. When is it happening? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • tkachevtkachev Posts: 8,332
    edited 30. Nov -1, 00:00
    Hi Clair,

    I so admire your spirit. You found a specialist under your own steam- and he agreed with you and gave you a diagnosis other than ME. Now hopefully your GP will prescribe the medication as advised, you will hopefully get better and your GP will see that you are getting better. I dont think you will need to say anything to him and he will learn from your case and hopefully be a better GP!
    Get your health and strength back first as that is the most important thing.
    I wish you well and look forward to reading your next post.....

    Elizabeth
    Never be bullied into silence.
    Never allow yourself to be made a victim.
    Accept no ones definition of your life

    Define yourself........

    Harvey Fierstein
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