Help please

[Seeley]

Hi all any advice pls , my pip an esa were stopped Nov 2020, since then I have been appealing it but no luck, as the assessment phone call was all lies, I have severe Raynaud's, arthritis both wrist an fingers, type 1 diabetes, anxiety, low mood disorder, depression, vitamin d deficiency, livedo Reticulairs, high cholesterol, I can just about manage the 11 hours work I do a week, which is my only income but as you can imagine its no were enough to be able to use my heating, so as a result in this I get blisters on my hand and feet, I am at the point I don't feel to be here anymore as I really do suffer every single day an it's to much of a struggle I can't see a way through this please any advice would be so much appreciated 😢

[glasslass]

That sounds an awful position to be in. Are you getting help with your appeal? If not ask your local CAB for help as they do this regularly and know the system.

[Seeley in reply to glasslass]

Thanks glasslass but can't get appointment anywhere been trying for months it's useless.

[Krazykat26]

Aw Seeley 😔Come here n let me give you a gentle 🤗🤗🤗I've been in a similar situation myself n I totally get the 'wanting to give up' feeling. N it makes me mad that the DWP put us through all of this 💩😤💩😤

Where are you with the appeal process? Are you waiting for tribunal date to come through? It can be a very long wait. My ESA was stopped in 2016 n the tribunal was late in 2017..n of course this was pre covid..so waiting times will probably be longer now.

There are some helpful organisations that have been formed especially for situations like yours. I'm not that cyber savvy so can't post the links..but if u have a Google you'll find more about them. There's a site called Benefits and Work. Another is Fight4justice. Or Turn2us. The last one is a charity helping people who are fighting the DWP and I believe it's free. The other two I think there's a small charge..but check them out.

If your appeal is still being processed n your left hanging..please hold onto the belief that you will get the money that's owed to you. Both benefits being stopped really just means that you've gotta fight them in order to get what you are entitled to!!

I hope this helps give u some ideas...DO NOT give up!! 🥊🌈😽😽Xx

[Seeley in reply to Krazykat26]

Hi thanks for your advice, do you know they make me sooooo mad , the assessment said I told them I am a carer for my mum , which really made me sad an angry as my mum passed away 7 years ago, the lies are unbelievable I know I have to fight this I have been for 17 months, just feel so tired with everything they put us through, but thanks for advice I will check them out xx

[Krazykat26 in reply to Seeley]

It sounds like you've had the papers for the tribunal..when I read mine I roared!! I said what a Rhoda Borroks ( if you get my drift 😉) I did think the assessor had got me mixed up with someone else!! Were we in the same room?? 🤷When it finally came to tribunal I didn't even go. CAB had sorted us out with income support..so I thought "Do you know what..you can shove your money where the sun don't shine!" Even so I won it!! 😁We got a new carpet with all the back pay 😹

Keep the faith..get help..you will win..n you'll get a decent backpayment to help you 🤗🌈😽😽xx

[Seeley in reply to Krazykat26]

Hi thanks for your reply, it is absolutely ridiculous what they are doing to us I'm sure there not awear of the damage they are causing, I'm glad you won x

[HowNowWhatNow]

Hi Seeley

I used to work in a CAB and would recommend that you try to go without having an appointment, saying how long you have been trying and failing to see someone. I understand that post Covid you may need an appointment to see anyone but it is worth trying all the same.

Also - if you don’t mind answering - what county do you live in? I will have a think about what advice you could get there. And maybe others with local knowledge can suggest, too.

Have you spoken to your GP? They can refer you to a food bank, if you haven’t already been referred to one.

I would then also ask your GP for a referral to a medical specialist - am not sure who deals with Raynaud’s. Dermatologist? Rheumatologist? - saying you need to see someone who can give you ongoing medical support for this preventable condition before it gets any worse.

Lastly, I know anything like this is easier said than done but have you thought about doing something else outside the house - maybe volunteering? - where you will be in a warm place and can keep moving for a few hours, but at your own pace?

[Seeley in reply to HowNowWhatNow]

Hi thanks for reply I live in liverpool - merseyside, doctors no use he's not even referred me to see anyone over my Raynaud's which I have had for 24 years an it's really really bad, when I've asked in the past he just says nothing can be done an just to wear hat scarf gloves at home an in bed, I am so fed up with it all but yes I will try an do that at the CAB thanks again x

Colour post

[HowNowWhatNow in reply to Seeley]

Oh, I’m so sorry.

Anyone reading who lives near Liverpool - any good suggestions for local help / support agencies re: benefits advice and appeals?

[Hidden in reply to Seeley]

Is there anyway you could find a new GP practice or is this the only one in your area? As you have severe Raynaud’s you should be given a trial of a vasodilator medication such as nifedipine or Sildenalfil. Your GP should screen your antibodies due to having an existing autoimmune disease and Raynaud’s.

With PIP they say that it’s about impact of symptoms but I think they are led by doctor’s supporting letters and prescription medications plus prescribed equipment eg rollator, grip rails, perching stools, sticks or crutches, wheelchair, special cooking and food prep utensils etc.

Even with these I’ve been through this process over and over to finally be awarded the standard rate for daily living, not enough points for mobility even though I never go out on my own. It’s so wrong that we have to fight so hard - course it is. And I suspect it may have got even harder recently with so many more now applying due to mental health conditions and long Covid. Just guessing tho. Best of luck please don’t give up. I nearly have a few times but keep sending them more evidence each time of disease progression and impact. Hope to get enough for enhanced daily living and standard mobility this time.

[Seeley in reply to Hidden]

Thanks for your reply I have taken on board what you have said, and I intend to carry on so glad you sorted yours out x

[Hidden in reply to Seeley]

I’m so pleased. Mine isn’t sorted out yet as I should be getting more - disease has progressed significantly since first applied. So I’m not in the frame of mind to take no for an answer from them and therefore I too will keep calm, stay resolute and carry on xx

[Bkart]

Hi Seeley,I had to change from DLA to PIPS two years ago, I attended an assessment centre for my interview. I felt the person had no empathy, was stone faced throughout

and I couldn’t understand how she could truly listen to me

and continue to type at the same time. It was like speaking to a robot! I didn’t feel that medically this person was qualified to make a judgement on me. When

I received the report and they had downgraded me although In reality I was much worse, I was so angry.

Everything she had written about me was incorrect, I

couldn’t believe I had been in the same room as her!

I sent a polite but very firm letter pointing out everything

that was incorrect, how poor she was and how badly run the system was and how it should be put right for the benefit of all, with suggestions to that effect. They reviewed my application and awarded the PIPS within a

month.

You need to have a face to face appointment if possible,

I really don’t see how they can properly assess you over the phone. There is a very good charity called Turn2Us,

they will give you all the info you need as to what these

assessors are looking for and also how to fill in the forms

to give the information they are looking for. I wished I had seen this site before I had sent my initial form to the DWP. Hope this is of some help to you. Good luck and don’t give up. You do have to appeal within a certain time

though or start the application again.

PS. Turn2Us can all be done on line or by phone, I didn’t

have to wait for an appointment.

[Seeley in reply to Bkart]

Hello thanks for your reply I will definitely follow this up x

[Bkart]

Hi Seeley,I’m at my wits end trying to get a diagnosis but more importantly like you treatment, I feel so sorry for you.

Geogeor asked if there is anybody in our forum who lives near you who could give you local advice. I’m afraid the only advice I could give is in my reply to you previously

which is advice others have given.

We only moved here three years ago so I’m still getting to

know the area but I live in Warrington which is not far away so if I can give any support you can message me

privately. I have read in other posts that there is a Scleroderma unit at one of the hospitals in Liverpool, not sure which one though. Your photo very much looks like Raynauds and there is medication for this that your GP

could at least try you on but only he knows your medical history and contraindications with any other medication you might be on.

There is also a SRUK group based on the Wirral I think

(again not to far away).I haven’t got the details but contact SRUK and you can find the contact details, I think the leader is Pam ?

There is a good Scleroderma Specialist at Salford Royal, Manchester ( again not too far away). I had to battle with my GP to get a referral, long wait though. It is your right

to request a referral as they will do tests and definitely

tell you if it is Raynauds. Have you shown this photo to

your GP.

I will try to give you the contact details for Salford as I believe you may be able to leave a message and speak to the Scleroderma and Raynauds Specialist nurse who may be able to advise you. However I think your GP should know if there is a Specialist in Liverpool, just keep polite but insist on that important referral. You can do this, you are stronger than you think. Take care and be kind to yourself, you deserve better than you are being given. x

[Partner20]

Your situation is enough to make anyone feel depressed, however, Vit D deficiency can be contributing to your depression, low mood, and other aches and pains, and should have been addressed by your GP. You should certainly be referred to a rheumatologist for further investigation, and they will be able to help with your arthritis and Raynaud's, fir which medication is most definitely available! Make a list of your symptoms, and how they affect your life, and send them to your GP, asking for their help. If your own GP is not willing to help, try another in the practice, make a complaint to the practice manager, and/or enlist the help of PALS. You need a comprehensive range of standard blood tests, and specialist tests that a consultant can order. I sympathise with your DWP experience as I had a similar one regarding an assessment for fitness to work. Almost everything I said was twisted in the report to give a false impression of my health and fitness. I pushed for a tribunal, which fortunately ruled in my favour, so these things can be done, although they do require a lot of effort. A close friend of mine had to battle to keep PIP even though severely disabled, in a wheelchair, and needing care 24/7, so you are certainly not alone. Others have posted useful links, which I am sure will be of help. Hoping for a light at the end of the tunnel for you.

[Lazyhaven]

Hi Seeley, try contacting SRUK for help with this, we were discussing it in the Sussex support group and was told to ask for help at SRUK they can put you in touch with advisors to help - don't know contact numbers but go through helpline number on website.

Good luck.

[Bkart]

Hi Seeley,

Bkart again, I have tried to find the info re Scleroderma and Raynauds unit at Salford Royal Rheumatology.

The web page has changed and I can no longer find the link to the Scleroderma Unit and the Specialist Nurse contact details. I have found a link to the research side, they were enrolling patients into a research study for Raynauds 10 months ago, not sure if it is still ongoing.

Dr. Graham Dinsdale. 0161 206 2935

[e-mail]

twitter: @sclerodermaM/@ McrNcM

I haven’t looked at this info though but might be worth making contact, you never know something might come of it for you!

Also you could try ringing Salford Royal Hospital

Tel.Salford Royal Hospital. 0161 789 7373 main switchboard, ask for Rheumatolgy department, you can then explain your situation and hopefully you may be able to speak to the Specialist nurse and get advice.

Hopefully, you can get a PIP award without having to go to

court, although a high percentage of people have their

assessment overturned in court and are awarded PIP, which is also backdated to when you first applied.

Have you tried applying for Universal credit, again Turn2Us will have all the info on how to fill in the application form, not sure if you can still apply online.

You have so much to cope with, I hope you can get some

help soon.

[Seeley in reply to Bkart]

Thanks for your reply , very interesting and I do intend to look this up, I will update when something comes from it x

[Feelingpants]

It doesn't matter about how many medical issues you have!It's how those illnesses effect you daily living & your daily mobility it's how your illnesses effect you

[Seeley in reply to Feelingpants]

Hi thanks for your comment, I am aware of this the problem I'm having is the lies on the report from my phone assessment which is all lies, had the truth been told then I probably would have continued getting pip an esa x