Personal Independence Payments Appeal for Endometriosis

[Melon365]

Hi everyone,

I just wanted to let you know that after being rejected for personal independence payments I have now been accepted.

I started the application in March 2020 and when they rejected me in September 2020 I decided to appeal. I took the DWP to court where a judge, a doctor and disability specialist decide if I meet the criteria. A couple of weeks ago I had the final hearing and they ruled in my favour. I am so relieved because it is recognition of how much endometriosis has affected my life. I can official call myself disabled.

It has been an exhausting and long process, but worth it. I now have access to tools that can make living with endo a little easier.

If you are thinking of applying or already have then you will need a lot of patience and persistence. Don't be afraid to stand up for yourself. Lay it all out for them to see, every horrible detail.

Finally, a big thank you to the people on this forum that helped and encouraged me through the process!

x

[Aurora20]

Good for you!! I applied for it got rejected and now I’m doing my first appeal and I have 2 other conditions too 🙄 sometimes it makes me think all these other people get it and you just know they don’t deserve it and then us who actually deserve it don’t!

I’m happy for you 😊 x

[Melon365 in reply to Aurora20]

I was told that 70% of people that appeal win their case. Just shows how messed up the system is. Good luck! I have everything crossed for you! X

[ChelseaWales]

Is it common for PIP to be declined for those with endometriosis? I am wanting to apply but I don’t know if I have the fight left in me to appeal a decline decision.

I’ve was fighting for my rights ect with my former employment and their workforce team. I worked for the nhs and have been treated appallingly regarding my condition, which they said was not a disability, this resulting in my resignation.

So I’m apprehensive about the future now.

I am so very happy for you though! That’s absolutely wonderful news!! I’m glad you have been recognised and listened to!

😇x

[Melon365 in reply to ChelseaWales]

Hi ChelseaWales

I think because endo is so unknown there is little understanding about how it affects our lives. How they assess PIP is based on how it affects your ability to do certain things rather than on what condition you have. I also think it depends who you have your assessment with. With PIP the assessor had no clue: they even asked me to spell laparoscopy for them. But with Universal Credit I felt like the assessor listen to me and understood how much it was affecting me.

I am so sorry you were treated so badly. They are wrong. It is a disability.

If you are not ready to fight then I would wait until you feel like you can. I waited three months after I initially lost my job before applying. I needed that time to pick myself up and figure out what was next. Its okay to take your time and do it when you are ready.

xx

[Bethleah in reply to ChelseaWales]

Hi contact citizens advice for help. They have special benefit advisors who can support you. They helped me with esa

[dodgeviperdiva in reply to ChelseaWales]

go for it 😁 xxx

[Jasmin24]

That's great news.I got mine in July, has I rely on a walking stick.

This condition is a disability. I'm now having an endoscopy to see how much the damage the pain killers have done to my stomach, after years of taking it, as I struggle to eat now.

This condition is damaging, physically and mentally.

I'm also having physio, due to the damage caused by endo.

I would say to those who are losing the will, please, please keep fighting. I know its hard, very hard, but fight for yourself, don't give up.

[ZiggyandBC]

I already recieve PIP for mental health issues and wondering if endometriosis will make a difference in what I get? I’m going to speak to my endo nurse about it because I don’t know how many people actually receive pip for endo x

[Melon365 in reply to ZiggyandBC]

It is certainly worth speaking to your nurse and looking into it. I guess it would depend if you qualify for more of the criteria because of the endometriosis. x

[AllthatGlitters]

Hi good for you for appealing and finally getting the help you need.I applied for it a few years ago and got refused, seemingly my debilitating symptoms and daily struggles weren’t enough to allow me to receive this payment. I then decided to apply again about 3 years later as I was out of work, for to my old employer discriminating against me because of my illnesses (shame on them and it could happen to any one of us). Anyway I now receive PIP. It’s not a lot every month but it helps a little and I think the system needs to be more understanding and fair instead of finding any excuse not to award you for PIP. I also find the people who do the assessment have no clue! X

[MaggieSylvie in reply to AllthatGlitters]

Catch 22 - they'd only have a clue if they had a disability; if they had a disability they probably couldn't do their job!

[Melon365 in reply to MaggieSylvie]

An interesting thought - have people with chronic illnesses do the assessments x

[AllthatGlitters in reply to MaggieSylvie]

Yes totally you are spot on 😊

[TinyRoo]

So happy to hear your getting the help you deserve! It's such a fight. I keep wavering about the application but I'm hoping they will start to understand more. It really is a disability and more people need educating on it, espec the DWP it seems.

[Melon365 in reply to TinyRoo]

It does take a lot of work but I do think it has been worth it. And the more people that apply the more awareness 🙂 x

[TinyRoo in reply to Melon365]

Thanks, I started and tried to get permission to get doctors evidence but the receptionist told me the DWP will contact the doctor if they need anything. I thought that the claimant needed to gain medical evidence first? Can anyone else help please?

Thanks again,

Jane

[Melon365 in reply to TinyRoo]

Hi Jane

Yeah PIP is based on how your illness affects your ability to do things rather than the illness itself so medical evidence isn't always effective. And they will ask to see your medical records and talk to your doctor if they need to.

If you have any medical evidence such as letters from consultants or surgery discharge letters then send those in. I had a lot of stuff because I had paid to have several ultrasounds before I lost my job, so I sent those in. Do you keep a diary of your symptoms? If you do then send in a copy of that.

xx

[TinyRoo in reply to Melon365]

Hello,

Thanks for getting back in touch and giving some advice - thanks for putting my mind at ease. It just felt like I'd hit a brick wall already. I do have all my appointment letters from my consultant etc. I do make a diary but don't tend to keep up with it on a daily basis, but I guess I should. Thanks again for your support.

Jane xx

[Melon365 in reply to TinyRoo]

Glad I could help! And if you have more questions or just want to complain about the whole process you can always DM me xx

[Inonge1]

Congratulations on getting PIP, it is a daunting process!I also appealed and won the appeal some 3 years ago.

For anyone going through the process I've found that the organisation called Benefits and Work is very helpful as it has guides on how to fill in the form and also how to deal with assessments. You have to subscribe but it's worth every penny.

Stay blessed.

[dodgeviperdiva]

hi hun congrats 🎉 I applied for pip in 2016 and was denied 🤬 and I re applied in 2019 and was was awarded pip 😊 my Symptoms hadn't were the same as when I applied the first time (a little worse but the same!) I have asked and been accepted for a mandatory reconsideration, in other words I may get all the back pay from when I applied in 2016 😊fingers crossed 🤞 if u have been denied then accepted I really suggest that you look into it 😂 although they can only give you up to 5yrs back pay x

[Melon365 in reply to dodgeviperdiva]

I have everything crosses for you! And I don't see why you wouldn't get it if you have the same symptoms?! I appealed straight after my rejection so I got everything they owed me x

[dodgeviperdiva in reply to Melon365]

that's great I'm glad they gave you what you were owed, unfortunately I wasn't aware of that until January 😂 Fingers crossed 🤞 I do get it, it would be a lovely lump sum to receive 😊😂

[Jsrzb]

Hi, I’ve applied for pip for my endo pain and mental health I had assessment over phone just waiting to hear back now I’m worried they will decline, how does it work when you appeal their decision??

[Melon365 in reply to Jsrzb]

Hi That sucks, why do you think it will be declined?

If it is declined then you apply for a Mandatory Reconsideration. The DWP will then look at everything again and make another decision but it is unusual for them to change their minds. If they say no again you can then appeal to a tribunal.

Once you appeal the case will be taken over by a court and the decision will be made by a judge, a doctor and a disability specialist NOT the DWP. You would have a hearing in front of them where they ask you questions about your health similar to the questions you answered on the form. After that they make a decision. This is a really simplified version and it does take a long time. I started the appeal process in sept 2020 and didn't get a hearing until April 2021.

X

[Jsrzb in reply to Melon365]

Oh wow that is seriously long , we’ll I’m just reading on here seeing quite a few people say they was declined the reason I applied is because my legs ache so bad with endometriosis also my stomach and back plus I have chronic anxiety and depression I’m hoping they won’t decline fingers crossed x

[Melon365 in reply to Jsrzb]

Yeah lots get declined but I also know a few with endo that weren't! I have everything crossed for you, let me know how you get on x

[Jsrzb]

Thank you I will keep you posted hopefully all goes through xx

[LettyLouise]

Amazing news! I have just had my application refused with ZERO points even though when I took the telephone call assessment I was in tears down the phone trying to hold myself together during the appointment. Pip asked if it was ok to carry on, I agreed as I didn't want to wait another 6 weeks for an appointment. An hour later, I was rushed into hospital. I am now trying to put words together without getting upset for an appeal but it is very frustrating. I also have a fibroid and high risk of Ectopic. I am baffled how I've scored ZERO points.

[Melon365 in reply to LettyLouise]

Hi LettyLouise These assessments make me so mad, they have absolutely no clue! I think you did the right thing by agreeing to continue, waiting another three months would not have been useful.

I was also given zero points in my initial assessment and I was really upset by what they said in the response letter. It will be long but appealing is worth it.

My advice would be to give yourself a few days just to deal with the rejection. Give yourself some space from it. Then go through their response and write a rebuttal to what you disagree with. Take every Activity that you should get points for and tell them why the DWP are wrong and use what you said in your initial appeal to back it up.

It is so frustrating and the system is so wrong but you deserve help, don't listen to what the DWP say xx

[LettyLouise in reply to Melon365]

I agree it is very frustrating. I have actually requested from PIP the assessors Skills & Qualifications as I believe this will help in my appeal. I was on the phone to them yesterday. I explained that I will be making an appeal and to put my claim on hold (They sometimes cancel the claims if you don't inform them you're appealing) He noted it down on my notes, but also went on to explain the appeal waiting time is a minimum of 8 months. I wasn't put off by this, as this gives me enough time to gather my doctors notes, hospital records etc... I too am upset by the response I got in my decision and it clearly showed the assessor had no knowledge of Endo what so ever. I have a lower spinal injury from a car accident back in 2014 but as the years have progressed that is also getting worse. I am awaiting spinal surgery for a discectomy! Even though I put this on my claim, the assessor still thinks I am able to walk 200metres. It really is awful.

[Melon365 in reply to LettyLouise]

I 100% think that it is about the assessor you get. I had one with Universal Credit and she just got it, she was horrified by my symptoms , she understood. My Pip one asked how to spell laparoscopy so I knew immediately that they had no clue. I am sure you can use the assessors lack of knowledge in you appeal but remember its about your capability to do the activities, not their lack of knowledge. When you have your appeal there will be someone there from the DWP and they will argue with everything that is said. Yep the waiting time sucks!

I'm sorry to hear about your injury, I would have thought you qualified just with that!

[LettyLouise in reply to Melon365]

Unfortunately not. Hopefully I can win an appeal. Fingers crossed.