Help save and monitor the NHS - LET YOUR VOICE BE HEARD.

38 Degrees is a non affiliated organisation which tries to keep it's finger on the pulse so to speak, a government watchdog keeping the public interest at the forefront and not monetary gain. Have your say and let your voice be heard as what happens with the NHS greatly affects us lupies. Xxx

15 Replies

  • After my appt this morning l am so angry with consultants lack of interest in me, that l more than want my voice to be heard ! l am going to get in touch with PALS re his attitude towards patients and lack of knowledge of my condition even though hes one of my consultants supposed to be treating me ?

  • Go for it girl. You won't be the only person he's mistreating. Ask to see someone else, it's your right. Good luck xx

  • I have been under a Rheumatologist for over 8 years, who completely missed all the classic symptoms of Lupus until the point of a routine urine test showed blood and protein, thats when my roller coaster ride of emergency kidney biopsies and intense chemo started, that was 2 years ago. I have since made a point of learning all l can about my illness, so therefore don't take kindly to ignorant Dr's, l feel for the people who are unable to speak up for themselves and some consultants are permitted to cause more harm than good! Rant over for now ha ha : )

  • PS my Renal Consultant is everybody's dream Dr, he is so knowledgeable , caring, patient, understanding Const l have ever met (i've met a fair few), l am so lucky to have him . : )

  • hello guildford and pattismith, does every hospital have PALS please? will my rhuemmy be told that im not happy with her (seen her since 2005) and im truley unhappy how she speaks to me etc. it isnt a one off bad appt with her. im concerned that she will treat me worse if she knew? x

    i will log on to the website though,thankyou x

  • I don't know, sorry. Reply to pattismith directly under her comment like I've done here and she'll be emailed. All I can say is we have to take a stand. Doctors act the way they do because we've allowed them to, they need to be accountable. If her treatment of you gets worse then you report her again. Record your appointment on your phone, take someone in with you , find a way and report her again and again and again. Though you should request to see someone else. Be strong hun. Xxx

  • hi caninecrazy. every nhs has a pals department and there should be a link from their hospital trust website., otherwise the if you ring the main switchboard number they can put you through. pals also have a website so you can always discuss your concerns with them before you take the next step. you can ask for any complaints/concerns to be kept confidential so your dr will not know it is from you. you can also ask your gp to refer you to another consultant from another trust, again no reason has to be given. i did this with gastro consultant, and moved from my home county hospital to the neighbouring county hospital - best move ever! as a pt and nurse i see good and bad drs, luckily the good ones far out weigh the bad ones. good luck hun :)

  • Hi, What is said between you and PALS should be confidential. However, I know someone who, after talking to PALS, found out that the consultant she had complained about had been told all about it. A grave mistake made by a PALS rep ( that too had to be complained about ..long story that ended well despite everything). So it may be just as well to point out that what you say should stay confidential. We can't be too careful.

    There is another organisation, ICAS, that may also be useful to know about:

    Lupies have to be really strong to handle being unwell!! :) Good luck! xxx

  • I recieved an email from 38 Degrees this morning.

    I have to say i was not happy with my recent rheumatology appointment. It was a tick boxing exercise by a nurse. Did i eat processed food. How much salt did i put in my food, how many units of alcohol did i drink and so on and so on. I came away feeling totally bamboozled and i never got around to mentioning any problems i had with Lupus.

  • How strange? That wasn't a normal appt, didn't you even see a consultant? Maybe the consultant was ill or something and they tried to cover up. It's all about meeting targets these days. I'd call them or see my gp, as the gps hold the purse strings these days. Don't let it go. Good luck xxx

  • Our consultant left last year. I think there is a locum in place at the moment. I think all about prevention rather anything else. I was also felt under pressure to take a drug i had already refused. My GP was pretty relaxed when i said i didn't want to take it. It was the locum who actually prescribed this drug, he's never clapped eyes on me. Not good enough i think.

  • Definitely not good enough. You need to push to be seen. Xx

  • Hi Guildford, Good for you for publishing this. I get 38 Degrees directly and often send their petitions on - have done the poll ..naturally! Let's keep pushing for a change for the better ..very soon. xxx :)

  • Thanks. Doctors surgeries should be looking for patient reps to attend new CCG area meetings quarterly. I've been asked to be the rep for mine which I lept at. Why don't you see if your surgery needs one. You have to attend the meetings and report back but supposedly you get to have your say on behalf of the surgery. :-):-)

  • Thanks ..will check up on that. xxx :)

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