Disability Allowance: Hi Does... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Disability Allowance

Molly100 profile image
17 Replies

Hi

Does anybody in the UK claim any sort of benefit like ESA or PIP because APS has stopped them working? Last year I had massive problems with a new manager due to me making mistakes, I just make so many due to brain fog. I can't get my words out either, I know what I want to say but by the time the words get to my mouth they come out wrong!! Anyway I ended up being off with anxiety and depression, on top of that I had my stomach removed in December so am recovering from that. but I just cannot see me being able to go back to the job I was in. I am getting the forms for PIP but am aware I can claim ESA as well. I do want to do some sort of work in the future but the brain fog is getting worse and it is so frustrating. I am relying more and more on my partner and my confidence has gone as well. Many thanks

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Molly100 profile image
Molly100
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17 Replies
Ray46 profile image
Ray46

I haven't personally claimed either, but I have done claims for both (PIP for autistic son, ESA for wife).

You might get either or both, but do keep in mind that PIP is not related to working (or not), or work capability, whereas ESA is (DWP was going to combine some of the assessments at one point, but the benefits are absolutely separate and for different things).

PIP is all about what assistance you need in daily living, including mobility and transport. As an example, my son (autistic, so big time anxiety issues) still gets PIP despite holding down a job (which is a miracle we had no expectation of aonly a year ago), because he needs quite a lot of help and support from us to actually enable him to live and get to/from his job. Eventually he will lose it as he will (hopefully) manage everything without assistance and be able to live independently.

This sentence of yours: "I am relying more and more on my partner" is what PIP is about - needing assistance to do normal daily living stuff. When you get to filling in those forms make that clear and describe you at your worst. It's ok to put "this varies, some days are worse than others", but detail your worst days, don't put "I can do this" just because you can on a good day.

ESA is about working, if you've been working and paid NI you are entitled to it, not means-tested, for a while when off sick (once statutory sick pay runs out), otherwise you need to be looking for work or unable to work. You need your sick notes from GP for ESA, but with stuff like "I had my stomach removed" you should be good for a while before they will want a work capability assessment (I know that for cancer surgery/treatment it's 18months) - doesn't mean you can't go back to work in that timeframe if you can & want to, just that they won't ask you to go through capability assessment to prove you can't work.

Molly100 profile image
Molly100 in reply to Ray46

Thank you so much Ray, it is a mind field and I have never claimed anything before. I have tried to get the citizens advice to help but I cannot get an appointment until April which is no good. But this advice is exactly what I was looking for.

Ray46 profile image
Ray46 in reply to Molly100

Please don't rely just on what I've said :-) Seriously, I am no expert and I've probably forgotten to write down even half what I know. There are other benefits advices serivces and charities who deal with it out there who might be able to help, eg. turn2us.org.uk/ (which I think is national) or local organisations e.g disabilitynorth.org.uk/ Even just reading their advice pages on filling in the forms will be useful.

One thing I did forget - prompting / reminding counts as assistance. It sounds so trivial and the form questions are typically phrased to suggest physical difficulties or assistance, but actually if, say, you need prompting or reminding by someone else to take your pills reliably... then you cannot do that independently. My son could use public transport, physically, but he needed help with route planning and timetables and someone accompanying him first time he made any given journey - that is needing-assisstance, not independence.

Molly100 profile image
Molly100 in reply to Ray46

Thank you ray, you have been so helpful. I get so confused with everything and can never find the right words.

KellyInTexas profile image
KellyInTexasAdministrator in reply to Molly100

Molly, I’m so glad you are asking for help.

I’m also grateful to Ray46 for sharing his experiences with this. ( being a non UK resident, I’m not a resource.)

I really sorry you are having a hard time. I think so many, myself included, can relate on such a personal an experiential level with this.

Sara_A profile image
Sara_A

You can still claim PIP even when u are working I have sle and APS and lots of things that come with both hand have been claiming it for a while.I too found work very difficult I was working as a nurse and even worked reduced hrs right down to 12 hrs a wk 2 six hr days with big reasonable adjustments made as my employers were great and really tried to keep me in work.

But in the end I just had to come to terms with it so a few months ago aged 43 hrs I retired on ill health and got tier 2 (I think that's the right way round - see I cant even remember that 😂!) which means I can't do any other job again

But you can get retired on tier 1 which means you are able to do a different type of job to the one you do now.

So don't struggle one and suffer look into things and speak to ur gp mine was so supportive in my retirement and even said 'yes I think that's the way we're going now isn't it'

Good luck 🤞

Molly100 profile image
Molly100 in reply to Sara_A

thank you Sara I feel so useless at times. X

Sara_A profile image
Sara_A in reply to Molly100

I know that feeling well!! I've just started some counselling and CBT to try to deal with my general frustration of everything

Athenap333 profile image
Athenap333

I claim both I was a Qualified Nurse at the time from what you are describing sound very much like me I am on high level PIP and EESA which is the highest level I can be on my only difference is I live alone if your partner is not working and looking after you he/she could claim carers allowance it is not something I can claim since the person needs to be looking after you for 37 hours per week. And the money they give you get for a carer is not enough to pay one for the amount of hours you would need them. I woke one morning is 2009 to not being able to walk no reason for it but also I have lots of Neurological issues I was diagnosed with Viral Myalgia Encephalomyelitis brought on by having Pneumonia. I have also been diagnosed with Agoraphobia and PTSD and issues with mobility and Pain. With all these issues I put in a claim for both ESA and PIP. Get as much information you can from professionals and any diagnosis you have had one thing I will say send anything the explains what you are coping with but not the original document since it is very normal for your application to be lost I would do duplicates just in case, I know this sounds like a lot of work but get anyone you can to help. I hope everything works out well for you at the moment I am trying to gain support via adult Social Workers since I am now not even able to wash my own clothes not cook a meal. If you want to contact me directly my email in Athenap333@hotmail.co.uk.

Molly100 profile image
Molly100 in reply to Athenap333

Hi thanks for replying. Are you in England? I do not seem to be able to email you it is not recognised.

KellyInTexas profile image
KellyInTexasAdministrator

This is exactly the beauty and value of this forum. You guys melt my heart.

We walk such a unique path in this world- I’m so fortunate to walk it with kind people like you.

Fra22-57 profile image
Fra22-57

I do but not specifically just having APS as I have quite a few diseases.It’s not what you have but what you struggle with everyday life. I first got ESA but then things got worse n was advised to claim both.I had to stop work at 53.You need lots of proof with paperwork and a letter from doctor would help.You can still work with claiming PIPS too.There is no harm trying but it is stressful.Good luck 🍀

Molly100 profile image
Molly100 in reply to Fra22-57

thank you for replying. I’m stressed about and haven’t even got the forms yet!

MaryF profile image
MaryFAdministrator

Hi, it is a good idea for you to apply, and do look up where you go for some help, for instance in my town there is money advice/benefits advice, people do get there early to queue, but worth it, as how you fill out the forms will be crucial, and less stressful if you have help. moneyhelper.org.uk/en/benef... MaryF

Bloodredroses profile image
Bloodredroses

Bad luck to have it all happen g . Don’t give up hope that you can find at home work that can be fulfilled on your well days . It’s possible .

Molly100 profile image
Molly100

Hi I just wanted to update everyone who replied to me in this post. It is nearly a year now since I had a total gastrectomy and thankfully I have turned a corner regarding that and am doing fine. But my APS is still a huge problem and I have been put in the support group for the ESA so do not have to work. But I did not get the PIP although I have not tried again for it. My problems are mainly cognitive and I also have balance problems, also strangely my hands shake a lot. I am down to see a neurologist which my doctor wanted me to see. Anyway I am now waiting for another operation to have a hysterectomy!!! That will happen on 23rd November. It has been a long haul but I am glad that they have recognised my APS with regards to the ESA. I feel much calmer not struggling to work and mentally knowing I am not up to the job. But thank you all for your support and advise.

HollyHeski profile image
HollyHeskiAdministrator in reply to Molly100

Thanks for the update, glad your mental health has improved.Really wishing you well for the 23rd and a speedy recovery. x

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