Fibromyalgia Action UK

Happy New Year - PIP

New year, new fight. After a year of closed doors and every place I went to saying they could not help - funding, staff, not sure of how to... GGRRRR!

I have decided to try for the PIP. Everything I have read tells me the first step is to call the DWP. The call is the easy bit, after that, what do I need to collect or do to get help?

I tried twice to get the DLA and went to three appeals but still lost. Yet my illnesses get worse or mutate and new illnesses start. In 2009 I got swine flu which resulted in FMS and CFS, in 2010 I had an accident and damaged my knee (need a new knee but not till I am 60 - 12 years to go now) which resulted in permanent crutches and unlimited pain. I now have six consultants and the latest is None alcoholic fatty liver disease (waiting a biopsy to see extent of damage) and due to medications (20 per day of different colours) now on the bariatric surgery list!!! :(

I can't afford to go part time at work and so the DLA or PIP would make my life a lot better. Not had more than two hours of sleep a night for five weeks now. I worry at work due to sickness time off and my employment record. To cut my hours just by a quarter would be heaven.

So now my steps. What do I do after the telephone call? What do I need to collect? Who can I go to for help - Have everything from benefits and work, have been a subscribed member for three years?

I am sure I am not the only one in this situation and I am sure a rough step by step guide from everyone who has been through the whole process and won or lost, would be a start. What do you all think? It wont be the definite guide but a set of steps that we could add to, to help and understand and face fears head on.

10 Replies

Hi Tibby, I began the PIP process in Jan 2014 and I am currently waiting a date for an appeal before a judge. I will share my process and that of a friend who was granted PIP straight away.

The form is lengthy and you have a few weeks to get it completed and sent away. I would start trying to fill it in immediately as it does take time. Remember to either photocopy it or write your answers on a pc and save a copy. Gather as much medical evidence to support your claim as you can and send copies with your completed form. Take a note of what you send them, just in case it goes missing in the system.

I would consult your local citizen's advice bureau, benefits advice centre or any local group that helps support people with disabilities. Fibro is classed as a disability. These people can often help with completion of the form using all the required jargon. Complete the form giving as much info as possible and referring to any additional medical info you are sending. Add additional pages if needed.

The people who make the decisions are looking at the impact that your conditions have on your life, they care not if you are able to work or not.

At the assessment, when it eventually comes round, answer questions, move around and behave as though it is your worst day ever. This is from before you enter the building to you leave. I was able to walk, with my stick and with considerable effort, to the interview room and was then told that although I had some difficulty walking it was not enough to qualify for PIP. The fact that their report contained complete lies and ignored me when I asked for a mandatory reconsideration as I had to spend the rest of that day and the following day in bed due to the pain and stress of having jumped through their hoops, was completely ignored.

My friend is much better at acting then me though is more able than I am was granted PIP for lack of mobility.

I don't mean to be the harbinger of doom but if you don't know how the odds can so easily be stacked against you, you have no chance of being successful. Good luck, Linda.


Hi Linda. I have my tribunal next month. weather i go or cancel it all depends on the results from the specialist on Fri. I am not hopeful after having a glowing report from the memory team nurse. Trust me to get a higher score in the memory test than a healthy person would be expected to get. :P

I put it down to the fact that there were no distractions and except for 2 timed tests could take as long as i liked, besides i was determined to do my best ,the last thing i wanted was a diagnosis of dementia.

If i decide to go for it there is then the problem of transport the building is in the middle of brum and on red lines. So how the heck both myself and my hubby plus my wheelchair can be dropped off close enough for my hubby who is also disabled to walk i have no idea.

Oh well one thing at a time. The specialist may want another MRI If so i will have to see if i can have it delayed.

Good luck on your tribunal.

hugs sue xx


Hi Sue, I am sure that the powers that be have absolutely no idea of the stress they cause or the impact that all of this has on those of us who suffer in constant pain. I wish you good luck with your tribunal. I am not holding out any great hopes for mine and, at the moment, I have no idea when or where it will be. Apparently there is some kind of time limit on these things, at least in Scotland, because I got a letter last week saying that more time had been requested and was refused as the process had taken long enough already. The letter states that at the tribunal there will be a judge and "the addition of a disability and medical member". I have no idea whether that will be one person or two but I will post once it is all done and dusted. Thankfully I have been put into the support group for ESA but only till March when my contribution ESA ends and I have to see if I qualify for income based ESA. This benefits thing certainly isn't easy, at least not for those of us who have worked for many years and then suddenly find ourselves to ill to continue. Take care and good luck, Linda x


Hi Sue,

If my memory serves me correctly, it is possible to claim for taxi fares if you are not able to cope with other transport methods due to mobility issues. I think you have to meet their eligibiliity for funding requirements, I qualify as I am receipt of ESA. If you do have to go then I think there is a number that you ring to ensure they agree to pay your expenses.

I hope you're successful.

kind regards,

Gin :-)


yes i have a letter that says as much. The problem will be finding a taxi that is willing and able to get my power chair in, complete with batteries.

Thanks any way. :P


Hi Sue,

I know that they exist as one of my friends used to be delivered, in her power chair, each week to my old place of work. She had to pre-book as I think that they only had one such vehicle in that firm.

I've just spoken to a mini cab driver friend of mine and he's said that some private hire have such vehicles and some of the more modern black cabs are equipped to take power chairs, it's a matter of ringing to see if they have such a vehicle you can book. He also said that the council may know as all vehicles are licensed through the council so they should be able to find out for you. If they will is another question.

I hope you can get sorted with minimal stress.

Gin xx


It is down to Luck sometimes, having the right medical examiner, having proof of your illness', being more ill on the day they visit or your attending their office.. but you must be prepared to show your truth of your ill's. however you do it is up to you.. Letters, photo's, emails, whatever you have.. A court will only adhere to the word of law, they don't look at the grey's or off white.. its either black or white.. so evidence of others having won their case with the same disease as you, look up cases on the Net, will get you a lot further than anything else- Like- "jones-V-evans" in such and such a case, A bit of homework will do more than trying to fight with just word of mouth. Ask someone on here who has been awarded pip who has the same problems as you (Or almost).. their evidence written by the Dss to let them have the award will be in good stead for you- if you see what I mean... Best of luck-


Hi Tibby,

I have been through the process, it takes such a long time but I succeeded first time round and would recommend that you get help filling out the form. I went to NeuroMatters, a group attached to the Neuro centre where I did my pain management programme. I met up with the person who had a huge book that detailed what was actually being asked by the questions on the form. She was able to put the questions into words that detailed how my condition affects my day to day living. This form filling angel also asked me questions that enabled her to assess if I was eligible to points that are part of the assessment protocol. Once the form was complete she wrote down where I would qualify for points which would then determine the level of payment that I now receive. I would advise anyone to seek help filling out this form as the questions, I found, were rather ambiguous. That said, once I understood the purpose of the questions I was able to answer them comprehensively....they are put into context. When I got my letter detailing how I qualified and points awarded I was able to compare it to the list I had been given by my form filler and it all made sense.

I hope you are successful in your claim and am so pleased that you have a plan to stay in work. Sadly the type of job I was doing prior to my illness could not be carried on as unhindered mobility is a must.

Best regards,

Gin :-)


Hi Tibby3a

I sincerely hope that you are feeling as well as you possibly can be today? I have pasted you a link to the GOV.UK cache on how to claim PIP, and I want to genuinely wish you all the best of luck with your claim:

GOV.UK - How To Claim PIP:

It may help you to ask the Citizens Advice bureau to help with filling in your forms?

All my hopes and dreams for you



Yes citizens advice bureau have just help me fill mine in I did not know where to start my husband filled in a bit of it ANE they help with the rest it's meant to be in by the 19th of January and they sent me a letter on the Saturday asking if I'd sent it back I had only had it a few days so it was filled in on Monday and sent back then I phoned them to day to let them know I had sent it back on Monday and I had to get help to fill it in so she sed they not got it yet but she put some extra time on it just in case I told her I have taking copys of them so just see wot happens now good luck to u all x


You may also like...