So I put a claim in for the personal Independance payment about a year ago and have just found out today that the decision is a no. So so angry for being yet another sufferer of this invisible illness being turned down for no other reason than it being invisible!!! Does anyone know how to go about appealing please?? Would greatly appreciate some help 
Thanks everyone x
Sorry about the denial, Beth. You may also wish to post this in the UK group, as those members may have been through the process and can advise you: http://forum.livingwithfibro.org/group/fibro-in-the-uk
Hello Beth,
I get PIP (used to be DLA) I got it originally for my anxiety disorder but last year I had a review and added my fibro diagnosis to the forms.
I only get the low rate.....the support level.....but I did have to go for a medical assessment and I went armed with a letter from my GP....which cost me £25 but was probably worth it as it may have helped me to continue getting PIP.
Did they inform you of their decision by letter? If so there should be a contact number in order to start an appeal against their decision.
Have you been for a medical assessment? Before you start to appeal I would suggest you get a GP letter....outlining how this illness affects you on a daily basis and what help you need from others.
If you don't have a contact number, ring your local Job Centre Plus Office and ask to speak to someone who deals with PIP.
But I found it does help to get your GP on-side.....plus when I initially applied I had letters from my local Community Mental Health Team too....outlining my day to day problems.
Hope this helps and please keep in touch.
I wish you well,
Love Lucy (Essex UK) xxx
Hi Lucy,
Yeah I went for a medical assessment, I rang the helpline for the PIP to ask if a decision had been made and they said a letter had been sent a few days ago so I should get it shortly. How do you get the letter, is it the GP who writes it and are you there whilst they do, so you can tell them the details and stuff? It sounds like a letter would be a good way to go, it’s a decent piece of evidence! My GP isn’t the greatest though, they just go with whatever you say to them so I’m not sure how they’d make the letter sound 
they’re not the most understanding unfortunately. Are the local community health team just situated where you are of are there a few across the uk? I live in Hull so would be great if there was one here for me to look into. If I could get a letter from there too it would be great for a bit more evidence. I also suffer from a lot of anxiety, can you include that in the PIP claim? Thanks for the help Lucy, it’s greatly appreciated! I’m only 17 so don’t have any clue how to do anything in regards of getting help and stuff, at the point where my job is on the line too from having too much time off work, don’t know what I’d do without the income from there hope to hear from you shortly Lucy, thanks.
Beth xx
Yes I will do thank you, I didn’t even realise the group I was on wasn’t within the UK haha. I don’t have a clue how to work this site properly yet, I’m new on here! Thanks for the advice,
Beth x
Hi Beth
I am so glad Lucy came on she is great It doesnt matter about the group not being in the UK we have people from all over and it helps to get news from other areas.
I am glad you found us and hope you are able to get the support you need.
If you need help with the site let me no and i can help you
Yes Lucy really has helped me already, I had no idea you could get a letter from your gp!! And thanks for being there, it means a lot xx
Hi Beth,
Anyone can request a letter from their GP, it's a private service from them which you request, so as you're paying you can request what goes in the letter....my GP asked me what I wanted going in it.....I just said "everything"!! stating my on-going anxiety disorder plus now fibro, I wrote a list of things I wanted included, my 5 year battle with anxiety, my fibro diagnosis, any specialists I've seen regarding both problems and a full list of my current medication, plus she highlighted that my anxiety disorder is now unlikely to resolve having had it for 5 years, and stated also that fibro is a chronic illness, which again, is unlikely to resolve.
If, as you say, your GP goes with anything you say to them, just book an appointment, take the list of what you want included in the letter, tell them what it's for and hopefully they should write it for you, I had to wait 48 hours to pick the letter up, so make sure you have the letter done first before you start to claim against the PIP decision.
The local community health team I mentioned is the mental community health team, to do with my anxiety disorder, I saw them for a while, both a Psychiatrist and community mental health nurse, once you start seeing them they write reports to your GP and also send a copy to the patient, so that's how I've got those letters too, proving my anxiety disorder.
You say you also suffer from anxiety....have you only seen your GP re this or have you had a mental health team referral?
If you haven't seen a mental health team, I would also ask your GP for a referral to them....it can take a few weeks for an appointment to come through but once you're with them they are good at supporting any claims you want to make. Sadly, some people don't like to see the mental health team, thinking there's some stigma attached to seeing them.....but please don't feel that way, they really do help and they're not just there for people who have completely gone off their heads and need sectioning and carting off in a van with the men in white coats...haha!! It was them that first advised me to claim for DLA(PIP) I had no idea about it, but, like they said, why shouldn't people like us claim, it's for people with disabilities, both mental and physical and they pointed out to me that anxiety is a very disabling condition.
I don't feel the need to see them anymore but they did sort me out with medication that suited me, which I'm still taking, 4 years on.
Every county in this country has a community mental health team that the GP's link in with to help people like us, so there will be one near you.
So, yes, anxiety can be listed on the PIP forms, explaining how it affects you, what help you need from others...with me it's company, reassurance, emotional support, some days I don't like being alone, so basically just write a few notes on how it affects you....listing the physical symptoms you may experience.....with me it's panic feelings, dizziness, mental confusion, palpitations/racing heart etc, also company when going out socially or to functions with my Husband, where I don't know many people......known as social anxiety.
Also list when and where these symptoms creep in.....especially good if you do get to see a mental health team as they workout a plan of how best to help you, so don't be put off from seeing them, if you get the chance.....it's all power towards your claim.
Anxiety is very much linked with fibro, as you work your way round this group and read other members profile stories, you'll soon find anxiety is listed amongst nearly all of us!!
I have also seen a pain specialist for my fibro, referred by my GP, to get advice on what medication etc would help, he was very good and stated that there's a definite link between anxiety/nervous disorders like breakdowns etc and fibro, saying that severe emotional trauma like anxiety affects your nervous system, which in turn affects the nerve endings around muscles, causing pain, so very often anxiety comes before fibro. I know that was the case with me.....I had a severe nervous breakdown in 2009, even though I've gradually improved I am now left with something called GAD....Generalised Anxiety Disorder.....which is considered to also be a chronic condition, and I know if I'm more stress or anxious for a while my fibro pain is worse, as you enter this spiral of anxiety, not sleeping, not resting, your body then gets exhausted and then the pain kicks in.....it's great isn't it...lol.
Sorry Beth, I do tend to waffle on once I get in full flow...haha. I'm 48, so REALLY old compared to you...lol....but I was a Nurse for 27 years so I tend to give people all the info I have and help in any way I can.
If you ever want a private chat that won't be listed in your profile page, just click on my "Lucy" logo for my page, click on "send message" and type away......it's a bit like a private message on Facebook. No one else sees it.
I hope all of that hasn't been too much for you but I want you to have all the help that's available....we fibro-friends deserve it.
Love Lucy xxx
you have days depending on the type of appeal it can range from as little as 7 days to as many as 300 days, documentation is your friends call legal aid ,you have the right to call and request the documents used to reach the decision to build your appeal on, get your medical record, read up on americans with disabilities act and find out how it applies to you... I appeals and sustained a case based on simply how long it took them to reply to my claim AND the simple fact that I had documentation to prove that I was diagnosed with x, y and z and I required a, b, and c regardless of a nurses opinion on their board
Hi Lucy,
I’m at doctors on Tuesday so I will request a letter then, and will make a list of all the things I’d like in it, really appreciate that big of advice, I never even knew I could get a letter from my gp, I’ve been after one for years!
I’m not too bothered like that, I know some people are funny like you said with it being a mental community health team, but I’m up for anything that could help!! As far as I’m aware I haven’t seen one but will also be asking about that when I’m there on Tuesday. I too have been rendered to a pain team, who have also rendered me for physio therapy and counselling - which I don’t have much hope for as the waiting lost tends to be years!! However, I had a bit of a drama at college last night, they’ve rang me this morning to see if in ok, and if I’d be interested in seeing any counsellors there, so I’ve been referred through them and should be able to see someone within the week, so that should be good!!
Yeah I suffer big time with anxiety, I have panic attack, regular fainting episodes and times when I just don’t feel confident enough to go out infront of people. I’m generally socially awkward aswell haha. So I will include all of this in my new claim.
Haha don’t worry about going on, I’m also well known for waffling, but I think it’s a good thing! At least that way we get what we want to say out, and in easy terms describing everything! Which is great for people like me who tend to be pretty slow haha.
Yes I would love to speak to you through a personal message, wouldn’t even mind passing on my phone number if that’s ok with you? I’m rubbish when it comes to filling out the forms and stuff, and it would be a great help if I could be on the phone to you at the same time for some help. Would also be great for when I’m planning out what will go into my letter! So if that’s ok with you, I will forward you it via personal message.
Thanks again for all of your help, you’ve been an absolute life saver with everything!! Everyone on this site is great, I’ve gone years struggling with no support, and nobody to talk to who actually understands and it’s just great to speak to others that do! So thanks for being there for me, I’m always here for you too.
Beth xx
You're very welcome, I'm just sorry you've been struck down with this at such a young age, are you're family supportive? Not everyone understands how we feel when they haven't got it themselves.
I'm happy to help in any way I can.
Love Lucy xx
Yeah it’s a bit of a bummer being a teenager and not being able to do anything others do at my age, the big one being going out drinking!! Yeah my family is supportive, my mum the most, she cares for me a lot at home. My dad and brother aren’t great but they’re not around me all the time, the thoughts there I guess. No it’s so frustrating when people don’t understand how we feel, thankfully I also have a very supportive boyfriend who helps me with a lot all of the time
Beth x