Fibromyalgia Action UK
38,723 members50,984 posts

More PIP stress

After years of hell with my health I now have the transfer from DLA to PIP to endure!

I sent all sorts of letters from my consultants and factual evidence from my GP but my GP is refusing to give a letter stating 'how my condition affects me ' for PIP.

I stupidly thought it would be enough but on top of my having to have two hospital visits a week I now have to have a PIP assessment!

I rang them to ask for a home assessment and ATOS said they had nothing down regarding my proof so I rang the DWP. They said they had it all there ! They agreed to send someone to my home as I really don't go anywhere on my own now because my breathing can get bad very quickly and I can choke on the phlegm, due to surgery on my throat. I also feel faint and anxious when I walk and have to stand.

I can't understand why they would waste money doing an assessment when there is so much evidence?

I've lost over half a stone in a week as this has triggered issues in my stomach again and the choking is a bad problem being examined by an ent consultant at the moment, I started choking during a barium swallow test on Monday.

I'm so worried about all this and only for needing the money I wouldn't bother claiming.

I wouldn't mind but when I claimed ESA I didn't even need a medical, they rang me to tell me everything was OK and not to worry.

Has anyone else had this? It really makes me feel awful

11 Replies

Hi Paulaw22

I am so sorry to hear that you are struggling so much with your health and I can truly empathise with you.

Unfortunately due to the cuts in funding for benefits, the DWP don't believe anyone and more and more proof is being asked for.

I really do not understand why your GP is refusing to write a letter for you.

Is it possible for you to get in touch with the Practice Manager at your surgery and ask them why your GP is refusing to write a letter for you?

It may be a good idea for you to get in touch with our Benefits Adviser Janet and ask for her advice.

Here are all of her contact details:

At present ESA and PIP are treated as completely separate cases by the DWP. I believe that they are looking into joining the 2 benefits but that is not happening at the moment.

Is it possible for you to have someone with you when ATOS come to do your home assessment? Also make sure that you have copies of all of your letters to hand for them to look at.

I think that I can speak for the majority of us here and say that it is unbelievably stressful applying for these benefits and that most of us would prefer to be pain free and able to work.

Please be kind to yourself and try your best to stay calm. I know it is far easier said than done.

Wishing you less pain and more peace

Lu x



Found out today that I'm not getting a home visit after all as I'm not permanently housebound! They denied telling me they would and sent me an appointment a day earlier at 9 am in the morning. They said to ring my GP again and ask him for a letter saying I'm struggling getting out. They said they can give me a later appointment but I would have to make sure my daughter is off work to come with me?

We looked at where the appointment place is and it's a good way from the car park so there's definitely no chance of me getting there if she's working.

I don't know what will happen as I'm waiting for my GP to ring me back.

I really don't think with everything else I have going on that I can invisage my life like this? This isn't living is it really?

Thanks for the details of the advisor I think contacting her would be a good help.


Hi, Paulaw22

Applying for PIP causes such a strain and the sooner they bring in the rule about not duplicating assessments the better.

Your doctor can write a "To Whom It May Concern" letter setting out your illnesses for a fee of £25.00. I know it is a lot to pay but if you take copies of this you will be able to use it for other purposes like a Blue Badge, theatre and cinema concessions and Disabled Bus Pass, (depending on your local council of course)

I am glad you are having a home visit but do make sure you are not on your own, even if it is just a neighbour who pops in. Also don't answer the door yourself or make them a cup of tea!

Hope it all goes well for you



Hi can I just say, I think it depends on your Doctor as to what the charge is for a letter. Mine was £40 which my doctor was'nt happy about me paying for it, as she said, if the dwp want info from her, about me, there will wright to her, but I insisted that I wanted one, because, we all no, the dwp don't like paying for a letter of further info, if there don't have too. & I wanted to make sure there had a full list of my illnesses, from someone who no me well.

Gentle Hugs x.

1 like

This is inhuman but rest assured you are not alone so many of us have had to go through this farce. I was in a similar position to you with no GP's letter but for another reason as I had moved home and my new GP had only seen me once and my paper notes were stuck in some warehouse, probably still there so he only had the bare bones of my main illnesses from the electronic records. He actually stated it was no good him writing a letter as he and his fellow GP's feel even when they have known a patients circumstances for years the DWP seem to be taking little notice of them. I could tell he has no time for the DWP and seemed reallt upset that as he stated " they are even making my patients who have been housebound or in wheelchairs for years go through an assessment".

I gave the DWP my repeat precription form which is more like a book and printed off the list of my main illnesses from my Patient Access records. I also had no specialists letter as my specialist had retired and as they had not replaced him the clinic I attended for treatment had closed. I jsut really concentrated on telling them exactly how my illnesses affected me and did two days of a kind of diary of two entirely different days and what problems I faced when I tried to do things,time it took, pain and fatigues issues etc. I did get PIP only the care at the LR but better than a kick in the teeth. Do hope you get a good result. Take care and let us know how you get on.

PS make sure you record the assessment.


Hi Paulaw22

I am so genuinely sorry to read this and I am hearing it more and more. It is awful but I am delighted that you did manage to get a home visit in the end. I want to sincerely wish you all the best of luck with your assessment and please take care of yourself.

All my hopes and dreams for you


1 like

Hi there, yes im afraid we have all been through it, i have never heard of anyone however bad who has been forced to change from DLA to PIP that has not had to have a face to face assessment , the vast majority (including myself who has had 3 face to face assessments) say that the actual assessment has not been as bad as they imagined. I would certainly advise you to have a sensible witness with you to keep notes about whatbyou are adked and your reply. I know it is easy to say but please dont worry too much nothing about the process is as awful as the physical processes you have been through on your hospital visits. Very best of luck.


I really hope it isn't as bad as this!

I'm sure the Police treat you better than this for committing a serious crime?


I can sympathise with you as I was on DLA high rate for both indefinelty and despite submitting over 78 pieces of evidence which included detailed reports from several consultants and doctors I was still required to attend an assessment that I thought was a waste of my time in that it took all of 16 minutes from meeting the assessor to me being told to go home I was awarded enhanced rate for both for 5 years on my PIP award in November 2016.

1 like

Now been given a home assessment!! Got a letter to confirm it yesterday hope I've done the right thing but I couldn't expect the ward to give her the time off at a weeks notice? They are really good when I have hospital appointments if my OH isn't feeling well enough to come with me. But the room I was having to go to was at the back of the hospital so I know he wouldn't be able to come with me and I would definitely need an afternoon appointment even if I could go.

I feel bad about putting in for it in the first place as I have to acknowledge what is wrong with me and I don't like doing that.

My GPS surgery have reassured me that 'I shouldn't have a problem' but some of the stories you hear terriffy you. My condition has worsened considerably since I applied for DLA but they make out that you've got to be totally bed ridden and not be able to do anything to qualify don't they? I really wonder why they call it Personal Independence payment when they're stopping people from taking jobs or having any life.

I'm hoping that after this round of tests are done that I might be able to do something from home to enable to get even a part time job? I don't want to be frightened all the time of losing benefits and letting my poor husband down. He's had a bad enough two years my kidney surgery, losing his Dad, Aunt and Mother. Now he is being assessed for ESA again when he had been given early retirement from our local authority because they said he will never be fit for work!

Anyway thank you all so much for your support, again, you don't know what it means.


Still no appointment . Ended up at the GPS in meltdown with a raging temperature. Been given antibiotics and thyroxine


You may also like...