PIP discriminating against working people?

jennifereckles24

Hi all,

Long story short:
I am 27 years old and have scoliosis, developmental dysplasia of the spine, ehlers danlos syndrome, and (supposedly) fibromyalgia. I cannot stand up straight for the first couple of hours of the day, I experience frequent subluxes of various joints, including my jaw, knees, toes, and fingers. I struggle to walk around a small shop without sitting down. Since 2016 my partner has not worked, as I am unable to do basic things for myself, and do not leave the house alone for fear of subluxing something and having a fall (which was the ultimate reason for him eventually giving up his job in 2016 as he was working 3 hours away when I had a fall outside out daughters nursery).
I work as an Independent Research Consultant, and have slowly increased my hours since my OH gave up work to try to support us, until I am now working over 100 hours per week. This is all getting too much for me, so I was recently persuaded to apply for PIP.
Went for PIP assessment, told her my main issues were not leaving the house without another person, needing help washing my hair (or anything with arms above head), needing supervision whilst eating (subluxing jaw every five seconds whilst chewing is an obvious choking hazard), to name a few.
Two weeks later I have had my decision back - 0 points.

The reasons given are that I am able to work (note it does not state 'from home', which is an important point since my job does not require me to go anywhere!) so therefore do not struggle with disability, and that I do not take pain medication, so therefore cannot be in pain (even though my conditions are chronic so I have voiced my reluctance to begin pain medication at the ripe old age of 27, and also pain medication would prevent me from feeling the warning signs that usually let me know I am about to sublux something, like those I have. Even experiencing in my hips recently which require me to lie on the floor to prevent them coming out of their sockets).

Surely under the Disability Act and Equality Act they are required to support my ability to work? I have had no other choice!

The letter basically suggests that if I gave up work and started taking pain medication I would be eligible.


Am I wrong in thinking I should appeal this?
I am at the point where I need to decide whether to start using a wheelchair so I don't have to miss out on my little girls' activities, days out, etc. And this has totally invalidated how much pain I put up with and how much I struggle everyday .

[Deleted User]

Firstly if you are still less than a month from the decision you should request a "mandatory reconsideration" which will in all likelyhood uphold the decision then you should appeal, preferably getting some help with the appeal from welfare rights or CAB if available.
Good luck

easy

Definitely DEFINITELY appeal against this. No where in the criteria for Pip does it mention whether or not you are able to work, the fact that PIP isn't a means tested benefit is indicative that your working status should not be a factor in this decision

I am on full DLA - assuming my transition to pip letter will come eventually - but I am in full time employment as an accounts manager. But I couldn't get to work at all without my car, I can't dress myself without a considerable amount of help, can't cook or even make a cup of tea without endangering myself . Fortunately I can use a computer and a telephone, and have found an employer who makes a desk easily accessible. So I can still contribute to society and my family's income.

Please appeal this, you deserve better than the decision you have received

oldernotsowise

Hi
When I read your post it made me cringe. Can I share my experience with you. It took over 40 years for me to be given a correct diagnosis of EDS type III, fibromyalgia, Raynauds syndrome, IBS, and other related issues. Prior to diagnosis I had been accused over the years of attention seeking, lying, and being delusional so I can say I have some experience of the NHS !

Firstly you need to provide additional information for your PIP application. Are you under the care of a specialist (rare) or Rheumatologist that can write a supporting letter. If not a GP letter explain limitations might help.
The DWP have been given information about EDS with regards their assessment criteria, this I believe was supplied by the leading expert in EDS in the UK (just retired) Prof. Rodney Graeme.
You can find this via google search as well as documentation clearly confirming the debilitating status of this condition as well as fact that the condition is progressive (degenerative) and incurable.
You could also contact the UK EDS charity support group for help and the same for fibromyalgia.
So sorry you have this fight on your hands as well as daily issues caused by ill health. I have been where you are and it is draining to say the least but the best advice I can offer is preparation is the key to your success and do not give in.

From treatment point of view you would benefit from being under direct care of a specialist who can take responsibility for ensuring you are referred the correct departments for help.
You may not see it at the minute but your young age might allow you the opportunity to reduce the effects of time and degeneration of joints that is par for the course.
I hope that is of some help
Good luck

w06

in your appeal try to focus on how you meet the descriptors for PIP rather than the understandable anger at the comments re work.

Other than as an example of your daily activities and need for help with them, the fact that you work is irrelevant to PIP

I work full time, mostly from home, and receive enhanced rate for both parts of PIP, the assessor discussed work quite extensively in my assessment and I raised it on the form too using examples of need for assistance/adaption

jennifereckles24

Thank you so much for all of your invaluable advice.
I am currently under the care of a rheumatologist, who I found last October and who took my condition very seriously.
My jaw also pops out every time I eat (or yawn, talk, brush my teeth...) and this is a serious risk of choking, as well as making me not want to bother eating, but the letter stated that 'although you state you are at serious risk of choking, you have never required medical attention for choking, and thus I deem you able to take nutrition without supervision'! So, I have to wait until I die, and then they will say 'oh, she was at risk of choking !!!128514;' ! The whole thing seems so ridiculous.
Also it comments that my physical test found me to have the strength required to do all of the descriptors, it didn't mention that I practically do not have use of opposable thumbs since my thumbs are so flexible they bend all the way back at the first and second joints, or that when I was asked to push forward with my legs my knees made horrific crunching sounds that I apologised to the assessor for! Or that when asked to raise my arms above my head I nearly passed out and had to sit down.
I am so disappointed that this is the standard disabled people are having to face. It seems the assessment is about avoiding support rather than making sure it goes where it is required.
I will ask my rheumatologist to provide me with a letter. In my last appointment she told me it was not a good idea for me to undergo physiotherapy since my condition was 'too severe', and she also totally agreed with my decision not to take pain medication as it poses a danger to me since I might not recognise the signs my joints are about to dislocate. I hope she will write all of this down in a letter for me. I will have to wait until Monday now to ring !!!128584;. Should I send all this evidence back with the letter requesting MR? Or wait until they respond to my request?

Thanks
Jennifer

GlasweJen

Hi Jennifer, i went through similar. Put in your mandatory reconsideration on time and write that you have a letter to forward when it comes available as their deadlines are written in stone.

I was refused HRM (I'm paraplegic) and the reason given was I can phone a taxi home from work so therefore can use public transport!

Danday

easy wrote: »

Definitely DEFINITELY appeal against this. No where in the criteria for Pip does it mention whether or not you are able to work, the fact that PIP isn't a means tested benefit is indicative that your working status should not be a factor in this decision

I am on full DLA - assuming my transition to pip letter will come eventually - but I am in full time employment as an accounts manager. But I couldn't get to work at all without my car, I can't dress myself without a considerable amount of help, can't cook or even make a cup of tea without endangering myself . Fortunately I can use a computer and a telephone, and have found an employer who makes a desk easily accessible. So I can still contribute to society and my family's income.

Please appeal this, you deserve better than the decision you have received

Unfortunately I disagree. If you are able to work the assumption can be made that any difficulties could be of a minor nature and coupled to this that no pain medication is being prescribed could lead some to think that the claim is being exaggerated. Also, could not working contradict any claim being made?

The main issue as I see it is for the claimant to show using evidence that what she does either to get to and from work or carry out her job does NOT contradict any statement made in the PIP claim.
Secondly, not seeking medical intervention could also give rise to doubts that the difficulties are being overstated. Going to the GP is the first point of call.

poppy12345

Danday wrote: »

Unfortunately I disagree. If you are able to work the assumption can be made that any difficulties could be of a minor nature and coupled to this that no pain medication is being prescribed could lead some to think that the claim is being exaggerated. Also, could not working contradict any claim being made?

The main issue as I see it is for the claimant to show using evidence that what she does either to get to and from work or carry out her job does NOT contradict any statement made in the PIP claim.
Secondly, not seeking medical intervention could also give rise to doubts that the difficulties are being overstated. Going to the GP is the first point of call.

What a complete load of rubbish!!! There's most likely 1000's of people that hardly ever see their GP because people have conditions that can no longer be treated. Myself for example. I have my repeat prescription once a month and that's it. There's nothing anyone can do for me and all i can do is take a large amount of pain medication daily to try to keep my pain under control.

I'm sorry but you're advice is the worst i've seen in a long time.....yes, since your last username adviced **** like this.

poppy12345

Did i also forget to mention that i also claim ESA Support Group and Standard daily living, Enhanced mobility..... Now try telling me that because i don't see my GP that my difficulties are being overstated....

Rant over.

OldMotherTucker

Danday wrote: »

Unfortunately I disagree. If you are able to work the assumption can be made that any difficulties could be of a minor nature and coupled to this that no pain medication is being prescribed could lead some to think that the claim is being exaggerated. Also, could not working contradict any claim being made?

The main issue as I see it is for the claimant to show using evidence that what she does either to get to and from work or carry out her job does NOT contradict any statement made in the PIP claim.
Secondly, not seeking medical intervention could also give rise to doubts that the difficulties are being overstated. Going to the GP is the first point of call.

Well I disagree because, with adequate help and support I can get to work, but couldn't attend my last 2 hospital appointments. Nor have I been able to collect my perscription, which needs to be signed for. I have also had to book next week off work because it's too cold for me to my job.

So technically I can work and am currently not medicated. This is not sustainable and detrimental to my long term health. It's about having systems in place all the time.