Debbie

[Barneytoner1]

Do many people get pip benefits with haveing behcets disease I v e been on long term dvla and about to fill my forms in for pip thanks

[GlastoGal]

Hi

I applied for PIP forms back in January but was too unwell to get around to completing and returning them. I reapplied in March and received help from the local Citizens Advise to complete them. I attended an assessment centre and had a face to face interview at the end of May. My elderly father drove me to the centre and I asked him to wait in the car as I didn’t wish him to be in the room when discussing the personal nature of my illness etc.

The first thing I asked the assessor was if she was familiar with Behçets and she stated she’s never heard of it but had had a ‘quick google’ at the weekend!! I had brought some printed information on Behçets for the assessors information, however, she declined to read it or accept it. I tried to explain the nature of the illness and that you never know from day to day, sometimes hour to hour how you will feel and likened it to MS in that it is a lifelong debilitating illness which is remitting and relapsing.

As PIP is not awarded for simply having a diagnosis (you don’t actually have to have a confirmed diagnosis just proof of symptoms which affect your daily living and mobility) I tried to give examples throughout the assessment of how I am affected on my worst days and more tolerable days.

It all seemed futile as I was declined any PIP award - I was just 2 points short to receive standard daily living and awarded 0 points for mobility. I requested a copy of the assessors report and discovered inaccurate information throughout the report and it seemed it appeared to go against me that I had been able to attend the assessment unaccompanied. Untrue statements such as ‘I had drove to the assessment myself’ plus the report was full of statements such as ‘in my (assessors) opinion’ were the information I had provided about my abilities had been completely disregarded and an assumption made on the assessors opinion of my abilities observed in just 90 minutes of that one day. I walked 4metres from a chair in the waiting room into the assessment office and the assessor stated ‘in her opinion I could walk 200m’! Because I stated I owned and ‘occasionally but with pain’ drove a manual car she based much of her assessment on her assumptions eg I could prepare a simple meal because I could drive a manual car!! The assumptions were ludicrous and did not seem to take into consideration whatsoever how debilitated I can be at other times. It seems the main thing to enforce and repeat is that you cannot carry out any task or activity REGULARLY, REPEATEDLY or SAFELY.

I am now in the process of appealing the decision at ‘Mandatory Reconsideration ‘ stage were they have 10 weeks to look again at the assessors report and perhaps change their decision, however, the decision is rarely changed in favour of the applicant at this point and most people then have to appeal to a tribunal, which I am willing to do even though the whole thing is extremely stressful.

It seems the government strategy is to put people off applying and for many people who genuinely should be entitled to this benefit, the stress and difficulty of proving you’re worthy of this is just too much!

I would still recommend to apply and beforehand join the ‘UK M.E’ and Chronic Illness Benefits Advise Group’ who are on Facebook. They have many support and advise files to help with all stages of your application process. I wish I had found the group before I started my application!

Good luck!

facebook.com/groups/2782601...

[Barneytoner1 in reply to GlastoGal]

Hi there thanks a lot for your reply sorry for your outcome !! I’m so dreading going to my face to face ! As you said they don’t know about our condition any advice to give as I’ve been told if your honest and say you can do certain thing on a good day just goes against you !! Did you get examined

good luck please keep me informed

Thank you x

[GlastoGal in reply to Barneytoner1]

Hi Barney

Some things I wish I had known before my f2f assessment -

1. you can record the assessment interview - however, you need to provide a copy of the recording at the end of your f2f interview for the assessor. It seems the recording must be by cassette tape - therefore you would need to purchase 2 basic tape recorders and audio cassette tapes to last the duration of your interview (from Argos or similar). You may also have to provide advance notice that you will be recording the session. I believe the benefit of recording the session is that there is instant proof of EXACTLY what you said and therefore less opinions of the assessor.

2. you can ask the assessor to read back to you exactly what s/he has typed at the end of the interview - this gives you an opportunity there and then to correct anything you disagree with or add in any extra information you feel should be included.

3. you do not have to do the exercises you are asked to do - you can tell them you don't feel well enough to attempt them and that you believe trying to do them would be detrimental to your pain levels and wellbeing afterwards.

4. when answering questions base your responses on your WORST day and state what percentage of the time this would be eg. WORST days % versus BAD days % versus more TOLERABLE days % - for me WORST days is completely bedbound, not eating, not washing or dressing. BAD days could be needing help (or encouragement) to wash, dress, eat, etc and TOLERABLE days could be attempting activities but needing to rest in between or explaining how these impact on you afterwards - eg going out for a coffee, shopping etc - you need to pause and rest before carrying on and afterwards it could induce a flare were you end up back in bed or in a lot of pain.

5. you will be asked how far you can walk - NEVER state this in 'TIME'! Instead make sure it is by distance - eg. 50m at a slow pace/with an aid with pauses to rest due to pain, SOB etc - that this cannot be done at a reasonable normal pace like other people and how it affects you afterwards - fatigue, pain etc.

6. I don't have any cognitive issues so I didn't report that I had - however, in hindsight I may have stated that due to the fatigue and the pain (and perhaps the medication) I do have brain fog and memory issues - eg. I could carry out a simple task eg. setting an alarm but that if I was learning something I could not remember instructions from memory they would have to be written down. Or other examples would be concentration to follow a conversation or watch a tv programme - I quite often repeat myself and have no memory of having already discussed things or forget things Ive said or been told.

7. I believe it is beneficial if you do have someone else with you during the assessment, it is another witness to your treatment and to what has been asked and your responses and they can also interject and add in information to help you.

8. I would recommend GOING ALL OUT for a few days prior to your f2f assessment so you really are not in your best state - I tried to explain to the assessor that I was having a better day than usual and it seems my whole outcome was based on my demeanour that day and absolutely no consideration taken that most other days I am much less able. I can completely understand why people say to put on an Oscar winning performance - it seems if you are honest it doesn't do you any favours - terrible really!

I hope this helps!

Regards, GG

[Barneytoner1 in reply to GlastoGal]

thanks a lot your reply really helped

Xx

[GlastoGal in reply to Barneytoner1]

You’re welcome!

I wish I’d known all this prior than my f2f.

I have just received a response this week to my Mandatory Reconsideration - as thought the award has not been changed so next step is taking it to tribunal.

[Barneytoner1 in reply to GlastoGal]

Hi just to say thanks for all your good advice regarding the pip assessment

Had my few months back hated it !! But had great news got all the points I needed to get top rate on both so very pleased !! Just wish every one with bechets got this !!

[GlastoGal in reply to Barneytoner1]

Great news!

[LindsG59]

Hi, it's definitely worth applying for PIP. I had my face to face assessment last week and don't know the outcome yet but if I'm unsuccessful I will follow the appeals process to Tribunal. I'm sure everyone is aware of how flawed the PIP process is. It has been contracted out to private firms with a mandate to refuse as many people as possible. In fact in over 70% of cases the assessor's decision is overturned at Tribunal. I second Glastogal's recommendation of the FB group. It's an amazing resource. Good luck! X

[Barneytoner1 in reply to LindsG59]

Hi thank for your reply

How did you think your face to face went ?? I’m dreading as some days I can walk and bad flare up it difficult !! Any advice on the face to face ? Thanks a lot

X

[LindsG59 in reply to Barneytoner1]

I'm not sure how mine went. It seemed as if the assessor was listening but I'm not sure she understood how bad things can get with this condition. I guess I'll find out when the decision comes through. It is an unnecessarily brutal way for decisions to be made but we can thank the Tories for that. Good luck with your application and don't give up if the f2f doesn't go well. Just follow the appeals process. Over 70% of appeals overturn the initial decision.

[Barneytoner1 in reply to LindsG59]

Thank for the reply !! Don’t mind me asking how does behcets affect you !! Do you get flu like symptoms ?

Regards xx

[LindsG59 in reply to Barneytoner1]

Exactly like flu! Fatigue, fevers, joint pain, headaches with uveitis, gastric problems and skin lesions added! It's exhausting! Good luck.

[Barneytoner1 in reply to LindsG59]

Hi gain

Just to let you know I just received my out come of my pip and I got full awards for the two ! Which I am so grateful !! But don’t think could go through it again !!

Have you heard any news !!

Debbie xx

[Barneytoner1 in reply to LindsG59]

Hi linds

Have you had your decision on your pip yet !?? Thanks xx

[LindsG59 in reply to Barneytoner1]

Hi, yes 0 points on anything. Went to MR, 0 points. The reason given in both cases is that although they acknowledge the effects of the condition on daily activities, it "isn't the majority of days". As I've been in a flare since May with GP sick notes covering the while period and I've lost my job, I don't understand how they reached that conclusion? Cruel, degrading and ignorant!

[Barneytoner1 in reply to LindsG59]

Hi linds

sorry for your out come carn,t believe not one point did you say you had good days

The system is awfull dreading having myn now !! Did you have any letters from doctors etc

Sorry you lost your job !!

Debbie xx

[LindsG59 in reply to Barneytoner1]

Don't take my experience as definitive please. I didn't realise how hard it would be and didn't stress that I was affected every day. Every time they ask you a question say "Every day I can't .... ". 73% of claims rejected at f2f and MR are granted at Tribunal. I hope you have better luck than I did but don't give up whatever happens at f2f. I'm taking it to Tribunal. Good luck. X

[Barneytoner1 in reply to LindsG59]

Thanks for you reply and advice !!

Let you know how I get 0n

Xx

[LindsG59 in reply to Barneytoner1]

Yes please do! X

[TomTomC]

I had Behcet’s for years and never claimed anything, as I was always put off, but was encouraged to apply by OH and the hospital and have reluctantly agreed with the support of the hospital, my Behcet’s is now affecting my nervous system so everything has become so much harder to manage. It seems like it’s a very long process and I think you need support not to give up, it’s disgusting that the government put us through this and that the assessors can be so ignorant. It’s like when I went for blue badge, I explained some days I couldn’t walk from the sofa to the kettle and provided photos of my joints, the assessor replied saying ‘Well you won’t be using your car that day will you’ they declined my application. As a public servant I’ve been horrified at the way I’ve been treated and the level of support I’ve needed to navigate the system. Good luck keep going!

[Barneytoner1 in reply to TomTomC]

Hi thank you for your reply

So sorry to hear the way you’ve been treated as I’ve said I’m dreading going to this face to face !! Any advice ??

Thanks a lot and good luck xx

[Dinkyjojo7]

Hi! I have pip for my behcets ! I have standard care and standard mobility . I’ve had it for about 3 yrs . Good luck hun xx

[TomTomC in reply to Dinkyjojo7]

The PIP lady came to see me at home after the hospital applied, which was very nice of them. She was a nice lady and listened, my friend who looks after me a lot was here. She was much nicer than the lady at the blue badge place. She said I have to wait 5-6 weeks and I’ll take a letter from her. She took lots of letters from

The dr’s that they send to the GP and said she will send them back. My friend told what they do for me like take my dog to toilet and things

[Barneytoner1 in reply to TomTomC]

Hi there

Hope your claim is successful I’ve just been awarded full rate which I am so pleased as lots of people are having to appeal so good luck let us know your out come !!

How does your bechets affect you ?? X

[TomTomC in reply to Barneytoner1]

Thank you. I think I have Neuro Behcet’s and lots of memory issues, confusion, arthritis, damaged nerves in my bowel, loss of feelings, chronic fatigue, I have to have a 4 day plasma exchange every 8 weeks, I function for about 3-4 hours a day, the symptoms get progressively worse as the day goes on, I just can’t predict how I will be on any given day. I could be ok for a few hours and leave the house, another day be bed ridden or have an obstructed bowel, or joints so swollen I can’t get off sofa without extreme pain. Or so confused I can remember why I stood up or what I was doing, I also forget the words so can’t talk for periods of time, I have no feeling down below anymore either, so have to have physio to train my bowel to toilet. However if you look at me, I look normal. I get headaches too so bad I can’t move. Is this like you are? The pip lady asked me maths questions and things, I have a masters degree. I hate being like this all the drugs too. Hopefully they will give me something, it won’t pay my mortgage or anything though. I didn’t think I could get it anyway as I have savings etc, but the hospital helped me applied. I have been diagnosed for 15 years now, but never applied it’s much worse now though and makes it very hard to go to work.

[Barneytoner1 in reply to TomTomC]

Hi again

So sorry to hear your having really rough time !! What a horrible disease we have lm having good days at the minute but never know when that will change I’ve been having bowel problems they said bechets gone into bowel !! Have terrible head aces and always got flu like symptoms!! I’m having injections which I do at home and I’ve seen a big change hated taking all the medications they try you on always side affects with me !!

As far as having saving that will not effect your pip claim

Hope your felling better soon stay in touch xx

[TomTomC in reply to Barneytoner1]

I just thought I’d let everyone know, I got PIP, care and mobility at the standard rates. Getting 8 points for both. I received it, without needing any appeal. To be honest I wish I had applied sooner. Like others they did not agree with some things I said. They said my cognition is normal, I have neuro Behcets and reports saying it’s not, but I’m not going to argue as I’m too tired to. I’m just so pleased that I don’t have to battle until I have to apply again. In 2021.