Anybody used PALS?

[achydunlin]

Hi, I'm at my wits end... I had a rheumy appointment at the beginning of June after nearly a year of feeling rubbish, aching swollen joints, blurry eyesight etc etc etc (sorry, I bore myself with my own symptoms) (I'd already seen a neuro - won't go into that - I've already posted various stuff about that).

I received a 'review' letter a few days after - basically describing the examination and 'possible' diagnosis of 'fibromyalgia and mixed connective tissue disorder' (something she never said to me during the consultation). I had a ton of blood tests done at the same time and x-rays on my hands and feet.

I've heard nothing since - it's now 13 weeks. I went to my GP last week and she only told me that some of my blood tests were 'borderline lupus, certainly fibro but something else going on' - her words... and sent me away with more painkillers.

I've rung the rheumy's secretary three times and each time been told 'if it were something serious they would have been in touch'!!! and 'there's a letter going out soon'...

So now I've got in touch with PALS to make a formal complaint.

Sorry for the long post but has anybody had any experience of PALS or any suggestions what I should do?

Thanks for listening.

[Sorebones]

What's PALS?

[achydunlin in reply to Sorebones]

Patient and Liaison Service.

They are supposed to be advocates for patients in the NHS - i.e. deal with GPs, consultants etc on your behalf. I wondered if anyone had any dealings with them.

[Sorebones in reply to achydunlin]

Thank you. I haven't heard of them before. I've learned something new today. Always a benefit. Hope you get some answers soon 🐸

[BlueMermaid3]

Hi there

I know it's not the answer to the question you're asking but are you saying that your GP told you the results of your blood tests were confirmation that you have Fibromyalgia?

As far as I'm aware Fibromyalgia cannot be diagnosed by a blood test? I would definitely query that with your GP.

With regard to PALS, I'm not 100% sure, but if you're going to make a complaint about your GP practice, your surgery will take you off their books as it would be a conflict of interest for them to still see you.

Any appointments you have pending at your surgery would be cancelled without any notice to you.

Hopefully someone will be along later to confirm what exactly the case is.

Personally I would recommend that you go to the CAB and ask their advice as to what you should do.

Also writing to the hospital may be an idea. Once you put something in writing, the hospital is obliged to reply to you.

Sorry that's probably not a great deal of help, but make sure you know what could happen before you do anything.

Best wishes

Lu x

[achydunlin in reply to BlueMermaid3]

Sorry, I didn't make it clear. No, I'm not complaining about the GP, I'm making a complaint about the rheumatologists department.

Fibromyalgia was just a diagnosis she was making as a sideline - i.e. a process of elimination - there are no blood tests for fibro - it tends to be diagnosed when a lot of other things are ruled out - or sometimes it's 'ruled in' along with other things - for unexplained pain. However, she should have said this - and didn't. I do honestly think she didn't know what she was talking about - but that's another thing altogether, and I'm going back to see another GP next week.

Thank you for your reply, I'm thinking of writing to the department itself.

[achydunlin in reply to achydunlin]

I suppose what I'm asking is - is it normal to wait 13 weeks for formal results from blood tests, x-rays etc from a rheumatologist? Or am I being impatient?

[BlueMermaid3 in reply to achydunlin]

Hi

We definitely have our wires crossed! I've had Fibro and CFS for over 30 years and have been down every avenue there is test wise.

I know exactly what the procedure is for diagnosing Fibro. I was just trying to be gentle and not sound like a know it all 😊

Perhaps you could ask for a second opinion and see a different Rheumatologist at the hospital or even a different hospital?

With everything I've been through, which is a heck of a lot health wise; operations, procedures, x Rays, ultrasounds, you name it, hospitals don't tend to let you know if everything is ok anymore. They just get back in touch with your GP to let them know if there is anything wrong.

You could still ask the CAB for their advice?

Apologies for the confusion.

Hugs Lu xx

[achydunlin in reply to BlueMermaid3]

Thank you, no problem. I'm still at a loss to be honest and even more worryingly, the GP I saw was also at a loss. I'm only now learning about fibro from the web etc and have realised what a nightmare it is to get diagnosed. But yes, I'm considering asking to be referred to another rheumy.

Thank you again sending hugs back. x

[BlueMermaid3 in reply to achydunlin]

Your best bet is to learn about Fibro on this forum. I've been a member since 2012 and everyone is so kind, caring and compassionate.

Post any question you want and you'll get loads of help and advice.

I was first diagnosed at 20 by a locum doctor. I was then formally diagnosed 3 years ago by a Rheumatologist. I'm now 54.

Ask me anything you want to. I can't express how much I've been through having Fibro. I have approx 27 different symptoms.

I'd be happy to help you with anything I can.

Definitely ask for a second opinion. That's my advice.

Xxx

[achydunlin in reply to BlueMermaid3]

Thank you again. This forum is wonderful with some great, compassionate people.

I suppose I'm worried that fibro may be masking something else.

[BlueMermaid3 in reply to achydunlin]

That's perfectly understandable. I think many of us feel the same way.

It worries me that my GP puts everything down to Fibro.

Go with your gut instinct and be persistent if you think you need something checked out.

xx

[Lou___]

They were brilliant with a friend whose op got cancelled. He even got an MRI scan on a Saturday morning! They will advocate for you with the rheumatology department and get things moving for you - go for it! Best of luck x

[Stephrm44]

Hi, I have worked in the admin side of the NHS for 20 'something' years and from experience from the other side yes PALS should sort things for you. If a patient complained to our PALS department because of a long wait for follow-up etc then they immediately came in to ask why the delay and arrange an appointment for the patient. They have the authority to do this as they obviously want to minimise the complaints against the health service. They also have to respond within a certain time frame I think so that should help to speed things along for you.

Good luck and gentle hugs, Steph

[achydunlin]

Thanks all. I'm still learning and have received very little help from my GP and I was hoping I would eventually get some concrete diagnosis from the rheumy - but so far nothing.... I understand re the fibro diagnosis - it's a process of elimination, but I also understand that some of my blood tests were 'odd'.

[Mdaisy]

Hello Achydunlin,

Would any of the following websites be of help at all?

healthwatch.co.uk/

patients-association.org.uk...

voiceability.org/what_we_do...

pohwer.net/our-services/nhs...

Plus to add in case anyone needs it;

seAp

They provide independent advocacy services to help resolve issues or concerns you may have about your health and well-being or your health and social care services;

seap.org.uk/

Hope it helps

Emma

[achydunlin in reply to Mdaisy]

Thanks for these - very helpful. As I said, this website is brilliant and the help on here is great.

[TheAuthor]

I am so genuinely sorry to read that and I want to sincerely wish you all the best of luck. I have never used them myself.

All my hopes and dreams for you

Ken

[achydunlin]

I don't know what to suggest flossyjoolz apart from going back to PALS? I'm going back to see a different GP next week - one who is senior in the practice who people have recommended and one I haven't seen - and I'm hoping to get more answers.

Surely what you've described though can't be totally attributed to fibro?

I do worry, and I think I've said this before on some other posts/comments but I don't want to alarm people, that fibro is a diagnosis sometimes made by docs and then everything is then put under that umbrella when there could and I emphasise 'could' be something else going on.

Take care

[Phinou]

I usually contact the PAL when I don't get answers from the hospital. And usually get answers within few days. I also complained about how I was treated in A&E and received a call on the same day.

[achydunlin]

It's funny, because I complained to PALS on 27th August, yesterday I got an email from them saying there was a letter in the system from the consultant dated 28th August... coincidence? I think not. Surely you shouldn't have to complain to get a response from a consultant after 13 weeks of waiting...

[Hidihi]

Hi. i've used a PALS representative to come with me to a Cardiologist appt.. the representative was brilliant. the Cardio Consultant was v. thorough. however, the next appoint., with another consult. without a PALS rep. left much to be desired. as there was a long waiting time @ the outpatient's, i had a long chat with the PALS rep. he said that PALS will do almost anything to prevent a case going to litigation.

H