I’ve at last had word from DWP about my PIP application and they are going to do a phone assessment on 4th August. Not only did they state they are going to phone when they’ve been told I have what amounts to a phone phobia, but they stated they will phone the mobile when hubby put on the form that our preferred phone number was our home number. 🤦♀️ Why ask if they aren’t going to take any notice of it?
Anyway hubby phoned them yesterday and they have noted that they’ve to phone the landline number and have taken on board that with a phone phobia I am going to find an hour on the phone in a stressful situation almost impossible to cope with, so I might well need a break. He’s going to be with me but of course won’t be allowed to answer for me.
I’m stressing over it already and wondered if anybody has any experience of such a call and any advice on how to cope with it. I’d be very grateful for any advice or reassurance. 🤗😘
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Hi Spotty. How bloody inconsiderate of them to do this to you. There is an option to nominate your husband to talk to them on your behalf because of your phone phobia I am certain. I know someone who suffers in a similar way and thankfully her Mental Health Social Worker contacted the DWP to object. With a letter from her and the persons GP outlining how detrimental it would be to her health, the DWP capitulated and gave her a paperwork review. It would be useful to ask your GP for support lovely. I am so sorry xxx
Thank you Cecily for your support and advice. Unfortunately my GP who has dealt with my anxiety and depression over the years is on holiday until next Monday. I listed her as one of my medical experts and because she’s been my GP for almost 20 years I wouldn’t want anybody else to get involved. I think if I try and fail she’ll object strongly then. I’ll discuss it with her on Monday anyway when I have an appt with her. Thanks again Cecily for your sympathy and support. I appreciate it. 🤗Xxxxx
Morning lovely, it really is such a punitive and demoralising process. I was so angry when they put me through two assessments for a total of 41/2 hours. The first one I was treated with indifference and because the assessors Mother had Lupus she declared she knew all about it ( she was a Physiotherapist). My second assessor was at least at home but he was a mental health nurse. He was extremely pleasant but they had lost the first assessment so I had to start from scratch.There is hope though because I had a paperwork review last year and they have written saying they will not contact me again until 2030!,! I wish you the very best of luck. Ask for a copy of the assessment to be sent to you in order that you can challenge any inaccuracies. Xxx
How awful you had to go through all that Cecily. What a relief they gave you a paperwork review last year and are leaving you in peace until 2030. That is great news. Thank you for your good wishes and good advice to ask for a copy of the assessment. I know from an assessment I had for early retirement from teaching how inaccurately they can record what you said! I very much had the feeling the dr had made his decision before I even entered the room! My Union objected very strongly at the time and I had another assessment and got it that time. So I’ll remember to ask for a copy of the assessment this time as I don’t have a union behind me now. There’s a thing, could we have a Lupus Union? 🤔 😆 Take care dear Cecily. 🤗😘xx
A Lupus Union now that would be great. Fighting for our rights when we are not feeling strong enough. Please let us know how you get on. Make your bullet points of the main concerns you have and where you struggle on your worst days and tick them off as you go along. It will help you focus on you even if they don’t want you to xxx
Hi, I've only had a face-to-face assessment (in my home) which I dreaded so much I was having suicidal thoughts. From that experience I'd draw these suggestions: Take a pause before answering questions - they have very specific criteria to assess; they won't care if your answer sounds scripted or rehearsed as long as they know which box to tick. You probably know this stuff already, having completed the paper application, but make sure you know the wording of each criteria (each one being worth a different number of points) for each section, so you know precisely what you're aiming to clarify. For a lot of it you need to get across that the disability/symptom/need for someone to help you applies more than 50% of the time. I found that benefitsandwork.co.uk can guide you through the process really well.
Very sound advice for dealing with the phone call, thank you SW. I’ll study the forms again, which hubby completed for me because I find it hard and embarrassing to talk about my health problems and tend to understate them and brush them off, whereas he put it how it is even to the extent I hadn’t realised how much some of my problems impact so much on both our lives. So you’ve given me something to think about and work on. I’ll study the forms and take notes to get it into my head. Thanks again SW. 🤗😘x
I wasn't aware of that. It seems odd though given that it is your medical information that you are sharing.
In that case I would suggest arranging for someone else, like a spouse to be with you when the call takes place and have the phone on speaker. Obviously tell the person that this is the case.
I ALWAYS have someone else at my pip assessments to witness them. I have heard of things being misreported and having a witness helps reinforce things in my opinion because the person writing the details who you meet (pre-pandemic), or speak to isn't the actual person who writes the report. It makes no sense to me but thats the system.
My sister had her claim refused upon review. It said things like - she could easily read the written text on a piece of paper from a fair distance using her contact lenses. My sister is as blind as a bat and has NEVER had contact lenses. It said she refused to attempt to put her hands up in the air when she wasn’t asked. She said my sister could walk quite a distance (can’t remember exactly how far) with no pain and no aid. My sister furniture walks around the house and can only go out if she uses her mobility scooter. They stopped her Pip which is what paid for her scooter and they took it back. She became housebound. I knew nothing about PIP but clearly the findings were wrong so I wrote a massive letter of appealing pulling apart nearly every section and finished by asking if she had actually lost her notes or got two claimants mixed up. I also pointed out that she spent a lot if her time talking about my niece’s ex boyfriend who she went drinking with! My sister got reinstated and had all her arrears and then the scooter was back in action. It’s a bloody disgrace. X
Yes, hubby will be sitting with me and has warned them I might need a break if I get too stressed. He told me he’d intervene if he sees I’m getting too stressed during the assessment. It will help enormously having him beside me. Xxx
My mobile doesn’t have that facility as it is very basic and is used only for emergencies. Because of my phone phobia hubby has his phone on all the time and it was his mobile number that was given to DWP and his they wanted to phone until he reminded them we prefer the landline number. But he has a recording facility on his iPad which he used when he spoke to CAB about filling out the form. He put our house phone on speaker and the iPad recorded the conversation very well. Good idea, thanks HT. I hope you are doing better these days. 🙏🏻 Take care. 🤗xx
Its awful spotty your having to go thru this. No wonder your stressed!. Just sending you lots of love and ill be thinking of you , hoping it goes well. Keep us posted how it goes. Xx🤞❤🤞❤🤞❤🤞❤🤞
Your so welcome spotty, you've been a wonderful support to me so its lovely being able to reciprocate!. Im pleased you've had a lot of helpful responses. I hope you feel stronger about weds as a result.
Its awful what we're put thru but 🤞 you get a nice assessor. Keep safe and strong. Thinking of you both. Xx🤗🤞
Thank you so much Misty. Yes we are so lucky aren’t we to have such a wonderful family of support on this forum - all dear friends looking out for one another. 🥰 It is a real God-send. And you are one of the best lovely Misty. Thank you for you very kind wishes. You take care of yourself and I’ll be thinking of you on Monday and hoping all goes well. 🙏🏻🤗😘xx
Definitely spotty, this forum is the BEST, because it has such lovely people like us on it willing to share and support.Thank you for your lovely wishes and we'll catch up next week. Keep safe and strong. Xx🤗❤🤗❤🤗❤🤗❤
I’m so sorry you are stressed. I had my very first assessment and it was done via video the other day. I was so upset and stressed that I cried my way through most of it. The girls on here were really supportive towards me. I described my condition on a bad day. I kept remembering that the fact sheet on the lupus site said that the condition problems needed to have been there for months before the claim and made that clear where I could. There are no good days just bad days and worse. The assessor watched whilst I tried the exercises but over the phone they can’t do that, so that’s one bit out of the way. He seemed very nice and even asked if I though I was suffering from depression and had I thought about seeing my GP or Rheumatologist about it. My husband confirmed and clarified my circumstances because I had pre warned them about the brain fog and that I may need to stop every so often. I also made a list of the things I wanted them to know which I knew were relevant to the claim. I was flipping traumatised after it all, so understand how you feel. It takes 8 weeks here for the decision to be made, and at this stage I don’t worry about the outcome I’m just glad it’s all over. Please let us know how it goes. We are all ill and we have to go through this process, having to PROVE how ill we are. It’s so sad. Lots of healing thoughts sent to you in advance. X
Thank you so much for your understanding and support BL and I am so sorry you had such a rotten experience yourself. That was really traumatic and I feel for you. Good advice too thank you. I’ll see if I can find the fact sheet on the lupus site that you mentioned. I wish you the very best of luck with your claim BL and please let us know what their decision is. Hoping you are having some treats and fun time now to compensate for the awful experience you had. Sending hugs 🤗😘xx
My dearest one. Do not build yourself up with impossibilities. All things are possible. You have the courage of a lion, just look at all you have done, for others, and can do for yourself. Make a change with this phone assessment .One person can make a change, because everyone is behind you to do it! Remember how strong you really are, in all we face, we send you all our wisdom, love strengths. Stand for yourself, as the deserving lamb that you are, and make this one the difference for your future. We all support you, and many have been there . Like the "Wizard of Oz", down the yellow brick road we go, not knowing is the fear, the words of adventure are the Loir that guides us to the Wizard. You can do this my dear friend. No fretting. May the force be with you, in all our heart. Much love, Thestormy sunshine.Xxxxxxx
Stormy your beautiful words bought a tear to my eye, your such a wonderful person with everything going on with you you still have such kind words of encouragement for dear Spotty - sending lots of love to you 💕
Oh thank you my dear Stormy.😘 I feel more able to face it knowing all my friends here are behind me. Thanks for that reminder and sage advice as always from you. 👍🏻 I hope you are feeling a little better my friend.🙏🏻 Thank you so much for replying to my post when I know how much effort it takes you. I appreciate it so much. With love and hugs. 💕🤗😘xx
Beautiful words of wisdom stormy that i hope help you keep going . I know what a terrible year your having and its going on as your facing tough interventions. Lovely you felt well enough to respond to a special friend like that and to see you on here again. Sending you lots of ❤ and keeping 🤞 you have a breakthru soon. Thinking of you too. Keep safe. Xx🤗❤🤗
Dearest Spotty, I am so sorry that you are feeling stressed about the upcoming call - and not surprising what with the additional issues of the number confusion along with the assessment not being face to face. Lots of really helpful advice from fellow Lupie friends and of course, stacks of support, strength and love to get you to and through the 4th August. We’re here for you 🤞💐🤞🤗😘🤗
Thank you HW for the comforting reminder that everyone here is right behind me. 🥰 I just worry I’ll say the wrong thing, too much or not enough to help my case when I’ll be feeling stressed anyway. 🤪 I don’t hear that well on phones, especially if its a poor line, and get hold of the wrong end of the stick so much so it has built up this phobia for phones. But they are aware of these issues so I’ll just try my best and know my fellow Lupies are there to catch me if I fall and to console me if it all goes horribly wrong. We are all so lucky to have this haven of understanding wonderful folk to help and support us. I’m so grateful to everyone here for that. 😘 Hoping you are coping with this hot weather 🙏🏻 - another scorcher here and only light rain overnight. Hugs 💕🤗😘xx
I feel for you so much . I’mDesperate to apply but the whole process makes me ill and so I have never taken that leap. Will try to build up courage . All the very best of luck
Thank you so much for your understanding Harry. I really couldn’t have done it on my own and hubby had to fill out the form for me as he does so much for me and reminds me to take medication etc. Lupie friends advised me to use CAB or Benefits and Work and so hubby contacted our local CAB and a lady there took him through each question in turn commenting and tweaking his replies he’d done on file paper before he wrote them on the form. It was a long laborious job for him and I felt so sorry he had to go through that but we went out for afternoon tea afterwards to celebrate it going away in the post.🥳. That was one big hurdle crossed. If you have somebody who could help you with the process like this I’m sure you’ll manage it. Thanks for your kind wishes Harry, I’ll need luck to control this anxiety I feel. But I’ll get through it one way or another.🙏🏻 I hope you take that leap yourself, with somebody holding our hand. Hugs 🤗😘
Oh thank you Doey, that is so good to hear and very comforting. I hope I get somebody nice and understanding too. 🤞🤞 I hope your application succeeded.🙏🏻 Take care. 🤗xx
Hi Spotty it’s always very nerve racking at these appointments and even worse for you with your phone phobia but I’m sure it will be fine, we always tend to dread these things but their always not as bad as we dreaded - for my last PIP assessment I watched the zoom meetings on LUPUS uk regarding replying for PIP and they were so useful with guiding you about the whole process.
Thanks so much for your support SV especially when you are going through so much yourself. The zoom meetings on Lupus UK sound well worth watching. How do I access them? I think I’ve seen one before but I can’t remember how to find it. I’ll search for it in a minute. Thanks again SV. Love and big hugs right back to you.💝🤗😘xx
Will do and I’ll be thinking of you next Tuesday and hoping all goes well with anaesthetist appt.🙏🏻 It shouldn’t be long after that for the opp. 🤞 Keep us posted dear SV. 😘🤗x
Hi after many stressful face to face assessments in the past I now suffer with severe anxiety so when pip told me I was having telephone assessment I was so stressed however they were lovely the lady I spoke with allowed me to have regular breaks for a drink as she could tell how anxious I was. My husband was beside me the whole time and whenever he spoke the lady always asked me what he was saying and if I wanted it noted down. I know how sometimes the assessor seems nice then when you get report they have totally lied so I wasn't taking anything for granted and had the dreaded wait for my post to arrive . Almost 10 weeks after the text to say they had all information I finally received my award .... kept me on enhanced for both until 2024 so fantastic news for me hopefully yours goes as well. Just take your time and be yourself if you need a break tell them and make sure you tell them all the help you need and fingers crossed you get a nice assessor like I did xx
Thank you so much for sharing your experience with me Stas. I really appreciate it. It is very reassuring and I hope I’m lucky to have a pleasant assessor like you had. 🙏🏻 I am so pleased yours ended with a positive outcome but that was a long time you were waiting for that text! 😣 Thanks again Stas. 🤗😘xx
Hi spotty, it is very stressful whichever way the assessment is done , my few words of wisdom that might help are 1)...There are no good days , just better bad days
2)...Never offer xtra info , just answer their question ( I have a tendency to chat away , so I was told not to rabbit on )
3)...Put brain in gear before opening mouth . ( again this is especially for me ) but Family say I havnt got one !!!
The assessment is also about other peoples interpretation , and they dont always get it right , but it is good to have someone with you , either in the home , on video link , or on loudspeaker , my daughter was with me , and at times she did jump in when necessary , so I hope that helps , you will be fine , just tell it like it is , if you get upset so what !, if they were having to bear all themselves , they would be in exactly the same position .
This is about YOU and how you feel and how you are TRYING to cope . not about their BOXES
Your wise tips are noted thank you TG. I might have trouble with the 3rd point too as I tend to open mouth first to cover the fact I haven’t clue what they are saying 🤪 Hubby will prod me I’m sure and correct me if I misunderstand. Thanks for the reassurance and sharing your experience. I am grateful. 🤗😘x
Hi Spotty, make sure the phone is on speaker and defer to your husband regularly for support. Take a break as often as you need to and don't get flustered. Tell them as often as possible this is hard for you and record it, whether they said yes or not. Could you not delay it, change the date until your doc gets back? You are allowed one change. If all else fails go completely bonkers on the phone and scream😂. Take deep breath. You can do this.
Hi BQ, I appreciate your advice and reassurance. Hubby will be right beside me so I’ll defer to him whenever I need to without feeling stupid like I normally do. I think I’d rather get it over with than delay it, but I’ll chat with my GP about it on Monday and see what she says. Thanks again for your support. 🤗😘xx
I usually put the phone on speaker and walk about with it if it gets stressed, then I can at least make a drink or have a drink while on and be comfortable. Take care.
I’ve had a phone assessment and they say I wasn’t being supported and needed no help and was not anxious etc. I had my carer/cleaner there the whole time, and she introduced herself at the beginning of the conversation with the assessor. It’s possible that the assessor didn’t hear most of the support I was getting because Tess was sitting 2 metres away social distancing. So the phone may not have picked up her voice. My advice therefore is to make sure that your husband supports and helps you very loudly. If he can take notes of what you said that would help too. They also said that I did not get upset when I was in tears several times. Now it’s going to appeal they have changed that statement slightly but they are often not altogether truthful. I also had a face to face assessment pre Covid which I did record with their knowledge so I don’t know why they should have stopped you recording. I’d record it anyway because my memory, especially when stressed, is appalling and if you need to go to appeal (I hope you won’t) it will help you. Just don’t ever tell them!
It’s a horrible thing to go through. I’m having my appeal by phone in August, I’m dreading it. They just refuse to believe me despite all the evidence. Try to allow for lots of rest in the days after and some things to help you feel better, treats or massages or time with friends etc, whatever helps you. I hope it goes well for you xx
That was rotten bad luck that your supporting carer wasn’t heard and secondly that you didn’t seem to have a fair and honest assessor. ☹️ I’ll make sure hubby speaks up and we’ll have our phone on loud speaker. Thanks for sharing this with me Jumper and I wish you all the best with your appeal. 🙏🏻 Many thanks for your kind wishes too. 🤗xx
Hi Spotty, does your phone have a loud speaker switch. This way your husband can listen to the conversation & take notes. I personally always listen to phone calls on my mobile using the loud speaker mode and with the screen switched on, for me it makes it easier to listen and concentrate. Maybe I'm strange😂. Also I think that if you are struggling with the phone call, explain this to them & give them permission for your husband to answer questions they should listen . Hope it goes well.
Hi VL, I’ll be using the house phone which does have a loud speaker mode on it. Hubby will be sitting beside me and so he can both hear and interject if he has to and feels I’m getting too stressed. Thank you so much for your support and kind wishes. Hoping you are keeping ok at present. 🙏🏻 Take care. 🤗😘xx
Oh dear Willow, what has happened? I’m so sorry to hear you are in hospital. I’m sending you love💝 and hugs🤗 for a speedy recovery and pray you are soon back on an even keel.🙏🏻 Thank you for you for your very kind wishes. 😘 Keep us posted on how you are doing. 💐xx
Oh no! 😳 That’s really rotten luck Willow. I’m so sorry to hear that. I hope you got to see your daughters before going into hospital. 🤞 If it was a stroke you are in the best place. 👍🏻 I hope you are feeling much better soon and that it isn’t long until they have things under control and you can be discharged. 🙏🏻 Keep us posted with how you are doing. Thinking of you. 🙏🏻🤗😘💐xx
Strange thing is , the nurse has just been to take a cannula out . He said we’ve just been discussing me with the nurses , he said Lupus , that’s that problem that effects only your skin ???????
I feel sad that even nurses at the spruce ward do not know a thing about lupus ..
Doctor ordered a contrast of my brain due to having vasculitis (small Vessal ) MRI department said no need they can seethe blood vessels on an MRI .
My point is why is so little knowledge within hospitals regarding g Lupus . So sad to think that a whole bunch of nurses think lupus only effects your skin ..
That is appalling! Pity you didn’t have some of Lupus UK’s literature to leave with them.😉 You should maybe tell them about Lupus UK so they can find out more if they are interested. You’ll have to educate them Willow! 😆 Do you feel up to putting up a post? I’m sure our friends on the forum would love to hear this and to wish you well. If you aren’t up to it let me know and I could do it for you. Just say.
I booked a table at our hospital in December 2019 to put up a display of Lupus UK items and literature and sat at the table a few hours each day for the 4 days I’d booked it. It was amazing how much interest I had and how little people knew about it. But for medical staff/nurses to be so ignorant about Lupus is very sad indeed.
Anyway Willow, you concentrate on getting yourself better.
If there is anything I can do for you let me know.
Hi Willow. How are you feeling today? Just thought I’d give you a chuckle telling you about somebody telling me about an early yoga class she thought I’d enjoy. I said I can’t do very early classes because of my Lupus. She replied, ‘Is Lupus your dog?’ But at least she wasn’t a nurse. 😆 Hoping you are feeling better today. Hugs 🤗😘xx
Thank goodness it wasn’t a stroke after all.🙏🏻 I am so pleased for you. But did they say what it was? I put up another post today with a photo that made us smile on our way to the doctor’s recently. I mentioned what had happened to you and there has been a few nice responses. I hope you make a full recovery very soon. Take it easy Willow and look after yourself.
I have now Vestibular Migraine to add to the rest . Apparently it’s the same symptoms has. Strokes . 4 days in hospital . Bumming heck . Yes my next cat I ever get , may well be named Lupus , might has well has not many medical professional know much about it .
Yes I’ve been worried has I had an attack a few weeks ago that took me to A /E again , last visit was a fob off and said I have balance i issues already , it’s very debilitating and quite scary this vestibular migraines I’m experiencing . I must say Barnet hospital was most Thera in there investigations and even found further problems 😟..
they have wrote to my doctor , funny thing is letters never get past the secretary’s at my practice . It’s quite disputing the mistakes my practice makes and under investigates ,
I’ve no idea what a vestibular migraine is but is sounds awful. 😫 I must google it to find out. Glad you are home now anyway and good that the hospital was thorough even if ignorant about Lupus. Sorry your GP practice isn’t all it could be. My hubby was a pharmaceutical rep in his young days and receptionists were known as ‘fu.. - offskie girls’ in the trade 😆 because you could never get past them to the doctor! 😖Yes, it is good the weather has turned cooler and I hope you can relax now and enjoy a peaceful Sunday. 🙏🏻 You could dream about your new moggy that you’ll name Lupus. 😁 Take care Willow. 🤗😘xx
Don’t forget to look at my new post ‘Moving lock, stock and Farmer Farrell’ because a few folk have left you good wishes on there. 👍🏻👍🏻 I hope you are having a good day today Willow. 🙏🏻 It is sunny and overcast at times here so quite pleasant.
So Sorry to hear this . I personally here in the Sates and the State of New Hampshire which is a very conservative state have to go thru the written application then have to go thru a in person appointment with people that know nothing mind you of my Antiphospholipid syndrome BUT i know what it's like . I have my very close friend Maureen that Is registered as my Advocate and she can at any time step up and take control of my issues and complications . I hope you get this done with Hubby it is needed and you should have it .Mine by phone is so difficult because my file is massive with all my doc's so i know it can be so hard and with your issue with phones G Thoughts are with you my friend and lets hope for nothing but the best for you two ---- Big Big Big Hugs -- you know me and Hugs ---- Ha !!!!!! BBN
Hi J, lovely to hear from you and thanks for your understanding, support and good wishes. 🥰 Oh yes I know you and hugs J 😂 but just now I really appreciate them and can’t get too many. 👍🏻👍🏻 Loads of BIG hugs back to you J. 🤗🤗🤗🤗 x
Just thinking of what you are going through makes me so angry. I do not even begin to understand why anyone who has these positions are so uncaring. I have gone through some similar experiences many years ago and still can't think about it without feeling sick to my stomach. After a long struggle, it turned out all right, but being treated like they don't believe you is absolutely one of the most devastating things I have ever been through. I so hope you get a kind and knowledgeable person who will truly listen and have your best interest at heart. I will keep you in my thoughts.
Thank you for your understanding and sharing your own awful experience with me Pumpkin. Yes, it is the being treated as a liar/drama queen/ or whatever else that is so hurtful and upsetting. I’m sorry you went through it too and I know what you mean by feeling sick to the stomach as that’s exactly how I feel with anxiety. But hubby has reassured me he’ll intervene if I get too upset so that has made me feel better along with all the advice and good wishes folk here have given. Thank you too for your kind wishes and for keeping me in your thoughts. I really appreciate it.Enjoy the rest of your weekend. Hugs 🤗😘xxx
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