"Fibromyalgia no longer treated on the NHS" ???

Anything to do with the NHS or Private Healthcare.

Moderators: perseus, *Lisa*, FluppyPuffy

"Fibromyalgia no longer treated on the NHS" ???

Postby chipchip » Thu Apr 14, 2016 12:21 pm

It's been suggested to my mother by her GP that she might have fibro so she asked the pain management specialist about it today with the hope of getting a referral to a rheumatologist. Apparently the lady told her that fibro is no longer treated on the NHS and implied very strongly that she didn't believe in it anyway.

Anyone heard this recently? I haven't approached the NHS about mine for a few years now; CBT, physiotherapy and painkillers didn't work for me.

This was in South Wales, if that makes a difference.
dx Fibromyalgia and hypermobile joint syndrome in 2011 by rheumatologist. Female, early 30s.
User avatar
chipchip
UKFM Member
 
Posts: 26
Joined: Thu Apr 07, 2016 6:37 pm
Location: South West

Re: "Fibromyalgia no longer treated on the NHS" ???

Postby SchroedingersCat » Fri Apr 15, 2016 7:48 am

Given that it's still listed on the NHS website, it sounds like your mum met one of those lovely medical practitioners who has decided that FM sufferers are a bunch of lazy malingerers.

http://www.nhs.uk/conditions/Fibromyalg ... ction.aspx
SchroedingersCat
UKFM Member
 
Posts: 435
Joined: Mon Mar 19, 2012 8:11 pm

Re: "Fibromyalgia no longer treated on the NHS" ???

Postby chipchip » Fri Apr 15, 2016 1:36 pm

I'm sure that must be it. Apparently she met a lady later that day who couldn't get a diagnosis with the Welsh NHS either and had to go privately to someone in Bath - but there's a good chance she initially saw the same pain management person who told her the same thing.
dx Fibromyalgia and hypermobile joint syndrome in 2011 by rheumatologist. Female, early 30s.
User avatar
chipchip
UKFM Member
 
Posts: 26
Joined: Thu Apr 07, 2016 6:37 pm
Location: South West

Re: "Fibromyalgia no longer treated on the NHS" ???

Postby FluppyPuffy » Fri Apr 15, 2016 1:39 pm

Even Dr Googley is saying that FM is still treated by the NHS, with references from England, Scotland and Wales {both North and South} popping up. It might be worth your mum talking to someone else about a possible Rheumy referral, such as the GP who thinks she may have the condition xx
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

If your dog doesn't like someone, then you probably shouldn't either
User avatar
FluppyPuffy
SITE ADMIN
 
Posts: 12719
Joined: Mon Jun 08, 2009 11:25 am
Location: Living Life On The Edge.......Of The Norty Step!!!

Re: "Fibromyalgia no longer treated on the NHS" ???

Postby chipchip » Fri Apr 15, 2016 3:42 pm

Thanks :) That's reassuring.

I think her doctor's not really listening to her/doesn't feel the piece of paper with the diagnosis is really necessary. So she's going to get her physio to write a letter to her GP to push them. It's perfectly possible she doesn't have it which would be great really but she definitely needs to know either way now.
dx Fibromyalgia and hypermobile joint syndrome in 2011 by rheumatologist. Female, early 30s.
User avatar
chipchip
UKFM Member
 
Posts: 26
Joined: Thu Apr 07, 2016 6:37 pm
Location: South West

"Fibromyalgia no longer treated on the NHS" ???

Postby Roseofsharon » Mon Apr 18, 2016 9:25 pm

I doubt that the 'specialist' who made the comment understands much about the condition. Fibro IS still treated by the NHS. Your mom is entitled to a second opinion, or to change her doctors if not getting anywhere. Please don't let your mom give up trying to get the answers or the treatment.
Roseofsharon
UKFM Member
 
Posts: 577
Joined: Tue Feb 01, 2011 9:09 pm
Location: Medway

Re: "Fibromyalgia no longer treated on the NHS" ???

Postby sjc » Sun Apr 24, 2016 10:35 pm

I know you can get diagnosis on the NHS - A gp can do this....so I think this particular medical person is taking the mick...but personally speaking, but I know sadly that many medical people don't believe FM, and if they do, some medical people unfortunately do not take it very seriously, sadly.

I don't wont to sound harsh here...but from personal experience with the NHS, there are some good doctors - they are out there, thank goodness...but there are a lot of medical people that aren't interested about FM....It's sad really.

Any even if they do diagnosis you, and again from my personal experience, the NHS don't sadly provide long term therapies, which is abit shocking to say that FM is long term and painful condition.

When I went to see a rheumatologist and neurologist, to be honest, I saw them once, but they didn't even give me any specialist medications or advice or specialist therapies...the rheumy just told me to take vitamin d, have basic short term physio and gave me a leaflet on FM, which I already know about. And I feel GP's are the same, they just offer you basic medications or tell you to do basic short term physio and that was it...

I don't wish to complain about GP's or other doctors on the NHS, and some people may only need basic medical support with their FM, but I don't feel it is taken seriously and I think we should have more support with it being a long term illness.

But that's just my opinion and experience.

Hopefully you can got to another doctor, if it was possible, and get a second opinion, at least hopefully you may get a diagnosis at least - but don't expect great intensive or long term support, sadly...

Sorry for not being able to provide positive stuff here...but hopefully u will keep fighting anyway.

Take care and all the best for you. And I sorry if you not having much luck.

:-D :-D :-D :-D
Sick of being sick, if you know what I mean. Anger keeps me going! I love campaigning for the rights of those with hidden disabilities. Enjoys talking to other like minded people - well, if you are sane, anyway :)
User avatar
sjc
UKFM Member
 
Posts: 297
Joined: Sat Jul 31, 2010 8:58 pm
Location: East Midlands, Uk

Re: "Fibromyalgia no longer treated on the NHS" ???

Postby SchroedingersCat » Mon Apr 25, 2016 10:20 am

SJC - just out of interest, what more do you believe the NHS can do about FM, other than prescribe the usual barrage of medication and advise on diet, exercise, rest etc?

I've not had or asked for anything from the NHS for FM since my confirmed diagnosis in 2012, what would be the point? There is no cure, and all the medication has long term side effects, many of which actually make the symptoms worse. Until they find out what causes it, there is some justification for doctors thinking its all in our minds. Some days, I even wonder if it is.
SchroedingersCat
UKFM Member
 
Posts: 435
Joined: Mon Mar 19, 2012 8:11 pm

Re: "Fibromyalgia no longer treated on the NHS" ???

Postby chipchip » Mon Apr 25, 2016 12:40 pm

Thanks everyone for your thoughts. I doubt there's anything the NHS can do for her even if she does have it. But I think that a rheumatologist letter would be a useful addition to her PIP application (on top of everything else she has). If she doesn't have it then at least she can move past it, stop wondering and make sure she gets appropriate treatment for what she actually has.

I'm of the opinion that the only thing the NHS could actually do for me is let me use our local hyperbaric oxygen chambers for free. But sadly I have to pay to use them - but I'm hopeful they'll help!
dx Fibromyalgia and hypermobile joint syndrome in 2011 by rheumatologist. Female, early 30s.
User avatar
chipchip
UKFM Member
 
Posts: 26
Joined: Thu Apr 07, 2016 6:37 pm
Location: South West

Re: "Fibromyalgia no longer treated on the NHS" ???

Postby *Lisa* » Mon Apr 25, 2016 11:37 pm

SchroedingersCat wrote:SJC - just out of interest, what more do you believe the NHS can do about FM, other than prescribe the usual barrage of medication and advise on diet, exercise, rest etc?



Everyone varies in ways of treatment for FM but what the NHS can do for me is physio. Hands on treatment on a regular basis as my stiffness restricts my joints finding it hard to mobilise etc...

I can barely breathe some days with it tightening around the diagphram. Jaw locks, back *goes* etc...

For me hands on better then any meds!

I have to pay for private treatment which is only once a month, i need it more regular for it to really benefit my every day life even if it just means i can take a deep breath
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
*Lisa*
MODERATOR
 
Posts: 3884
Joined: Sun Sep 07, 2008 2:01 pm

Re: "Fibromyalgia no longer treated on the NHS" ???

Postby heather trippett » Tue Apr 26, 2016 1:20 am

there is a pain clinic referal singlton hostpital then treatment in morriston hostpital ie injections of steroids in trigger points :yikes: and physio and talk to disscuss best suited meds in morriston hostpital dr edgely fibromyalgia specialist google him im still waiting for appointment it took me a while to find this info i took it to my crap gp and a booklet about fibro n cfs and asked to be reffered i hope this helps those suffering in south wales swansea :-P :-P :-P
heather trippett
UKFM Member
 
Posts: 26
Joined: Sat Feb 20, 2016 3:28 am


Return to Doctors & Health Services

Who is online

Users browsing this forum: No registered users and 1 guest