PIP and relapsing-remitting fibromyalgia

Spoonie_Turtle

peteuk said:

@Muttleythefrog and @Alice_Holt. 
I dont doubt that someone with fibro hasn’t suffered for many years, so I ask the question why havent they claimed PIP with their symptoms.  

For a PIP assessment the claimant needs to provide evidence, specialist referral, diagnosis, medication ect.  of the condition they are claiming for, what I am saying is if your condition is Fibro youve been diagnosed with it.  If you claim PIP saying youve got Fibro then the question will be where is the evidence.  

Probably because they've been wrongly told, or inferred from all they've heard about PIP, that they need a diagnosis first.  And/or simply surviving daily life and work and trying to get an explanation and some form of help from the medical system takes up all their energy and they literally have nothing left over to try to claim PIP.*

*That's incidentally why it took me five years to apply after my condition became truly debilitating.

Someone with with undiagnosed fibro would not be claiming PIP saying they have it, they'd be claiming for what they're calling a not-yet-identified / not-yet-diagnosed condition (or 'suspected fibro' if they're far enough along in their fight to get an explanation).

Go to a doctor and he will treat you for the symptoms and refer for diagnosis.

Oh if only this actually happened for chronic illnesses/conditions.  What an easier world we'd live in!
I take it you're unaware that the first major hurdle (after having been able to make and attend an appointment, of course) is being believed in the first place, especially for women who are disproportionately affected by autoimmune diseases and other illnesses such as fibromyalgia and ME, all illnesses having the types of symptoms that doctors dismiss.  And every step of the way after that is usually a battle too.

Muttleythefrog

peteuk said:

@Muttleythefrog and @Alice_Holt. 
I dont doubt that someone with fibro hasn’t suffered for many years, so I ask the question why havent they claimed PIP with their symptoms.  

For a PIP assessment the claimant needs to provide evidence, specialist referral, diagnosis, medication ect.  of the condition they are claiming for, what I am saying is if your condition is Fibro youve been diagnosed with it.  If you claim PIP saying youve got Fibro then the question will be where is the evidence.  

Put another way, if someone has seizures, seizures is not the condition it’s a symptom of a condition.  Go to a doctor and he will treat you for the symptoms and refer for diagnosis.  Provided with medication to reduce/stop the seizures whilst the referral goes through.  The condition comes with diagnosis.   Eg epilepsy or tumour.  In some cases such as if there is evidence of a head injury prior to the seizure then it’s likely to be a one off depending on the severity of the head injury.  Hence why the seizure is a symptom not a condition. 

In the end it’s semantics really.  In my experience you don't get far with a PIP assessment without evidence of a condition/diagnosis.

Possibly because they're not aware of potential of getting PIP or are expending their limited energies into trying to get medical support and maybe that diagnosis.

As for the rest of the post I'll say this.... no wonder so many reports are so flawed and tribunals required. The assumption, or any perceived requirement, that someone with disablements relevant to PIP will have engaged in fruitful way with the NHS (or some other medical services) is so flawed it beggars belief. (It obviously assumes the NHS has limitless resources and endless professionalism too - just being believed that you have symptoms can sometimes be a hurdle too high and I imagine many a sane sufferer of depression thought better of waiting a year for 6 hourly sessions of therapy.) Some of the most seriously psychiatrically ill for example can spend great time trying to evade medical professionals and treatment (and I remember back in early days of ESA one got a report saying there was basically nothing wrong with them and used it to challenge their psychiatrist who was treating them) or even claiming there is nothing wrong with them (claims in such cases more likely made on their behalf). It reminds me of a great phrase that came out of the enquiry into 9/11... with the security services stood accused of having a 'failure of imagination' and it clearly applies to many doing these assessments. "Go to a doctor and he will treat you for the symptoms and refer for diagnosis" - will they?

"In my experience you don't get far with a PIP assessment without evidence of a condition/diagnosis." - I suspect you are right and that's probably one of many reasons why assessments are often so flawed and essentially junk evidence. We have seen in various an exposé how trashy the internal training and approaches can be at the assessment companies and IMO every assessor should be forced to attend a tribunal to justify their report (/elements of it) or remove their evidence with the tribunal given option to fine the HCP and/or their company for flawed reports. After all these years we should have had significant improvement to assessments and decisions... and far fewer tribunals!

It is with knowingly false hope that such flaws in the system and discussion of them do not put of claimants pursuing what legal entitlements they have... and so it is worth adding that in the end after all is said and done probably most awards do end up about right. (Also worth adding my last face to face assessment was for ESA and it was perhaps the most accurate and professional assessment/report by any healthcare professional in any setting I've personally experienced).

Alice_Holt

"no wonder so many reports are so flawed and tribunals required. The assumption, or any perceived requirement, that someone with disablements relevant to PIP will have engaged in fruitful way with the NHS (or some other medical services) is so flawed it beggars belief. (It obviously assumes the NHS has limitless resources and endless professionalism too - just being believed that you have symptoms can sometimes be a hurdle too high and I imagine many a sane sufferer of depression thought better of waiting a year for 6 hourly sessions of therapy.)"

Quite.
I have lost count of the flawed mental health assessments I've seen where an award is withheld because the client is 'not currently supported by the Mental Health Team'.
It's not uncommon for such appeals to go from a nil to an enhanced award at tribunal, so appallingly poor is the assessment.

It's as if the assessor is not willing to accept the evidence of the PIP2 form nor accept the claimant's word...

I'd like to see the tribunal costs recharged (with interest) to the private profit driven companies running assessments - it might possibly result in better outcomes.  

WMH2001

Thank you everyone for your replies to my original post, the ensuing discussion was really interesting too. I have no intention at present of applying for PIP, it all seems impossible and hugely stressful. As has been said those us with this and similar conditions can often find the process too intimidating and triggering to be navigable. As well as fibromyalgia I’ve several other serious conditions including ptsd and a complex bundle of sleep problems. I’m getting therapy and other interventions for both but nevertheless it’s 01:40 again and I’m awake, such sleep as was was riddled with pain and nightmares, I can barely make a brew and take pain relief let alone see a way through the benefits system.

Applying my DBT skills I ask: “does [will] this serve me?”  - well actually no, the damage the communications and conflict will do will far outweigh any benefits. There is a direct connection between conflict and dealing with these big issues and my dreadful nights. I can get by financially without benefits but not much longer without decent sleep. 

To add there are a few truly committed individuals I’m working with in the nhs who are helping me so very much, I can’t name them here but honestly without them life would be so much worse, if even life at all. 

Thanks

Emma