I have only just answerd 3 questions and already wrote extra info and its making me ill.I really feel as if i wont be able to finish filling it all in without it making me very ill.Its so cruel they put us that are very ill through all this.I feel like telling them to stick their PIP.
Hi Jaydee i know that feeling and yes it is very cruel I did mine last year i didnât sleep for two days I saw my consultant he wrote a strong letter to PIP and they still came out. I must say the pip visitor was very nice took one look at me and said he shouldnât be here and towards the end wanted to finish downstairs with my husband he did say not to worry everything will be ok and it was in the end but not my health The PIP forms are far too long and degrading i hope you get through the form keep taking breaks be honest send in copies from consultants ect best wishes âŚ
hi jaydee it is YOUR benefit and YOU must fight for it. get help from Welfare Rights, CAB or other agencies. they actually KNOW about these forms. benefits and work cost ÂŁ20 to join but their guide is said to be excellent. it is important to make sure that you tick every box. the key words for each task are âsafely, repeatedly and in a timely mannerâ. even before ms hijacked me iâd have found it hard. the welfare rights advisor who helped me was excellent. my claim had to go to tribunal but the stress was making me ill so i phoned her and told her that i wanted to drop it. she said that we had both put too much work in on it and suggested a compromise where she would go to the tribunal as my representative. she did and we won! so get help with it at once. good luck
Hi Jaydee,
PIP form filling is so stressful, especially with a time limit.
Great advice from others , contact an agency who will help.
Put PIP into the SEARCH box, top right, youâll find lots of advice on here too.
I typed my answers so that I could add things in as I remembered them.
Evidence - photos, letters from specialists, but not appointment letters.
Hope you manage to get forms filled in OK.
Jen
Hi,
Search engine has gone a bit strange, If you search PIP it comes up with posts from 2012, go to last page and still 2012 posts. Admin may have to look into it. Sorry.
Hello Jaydee
The thing about benefit forms is to do them slooowwwlly. Take several days (without missing the deadline). Do no more than about an hour on the form each day. (If youâre typing it, then remember to save what you write. Keep looking back at the Activities and Descriptors: https://www.citizensadvice.org.uk/Global/Migrated_Documents/adviceguide/pip-9-table-of-activities-descriptors-and-points.pdf and make sure what your writing reflects what you experience. You need to be able to prove what you say with evidence from healthcare professional, carers, social care assessments, physiotherapists, OT, anyone else who can back up what you are saying.
Itâs good advice to join https://www.benefitsandwork.co.uk/ Yes, they charge about ÂŁ20 per year but honestly itâs worth it. Their guides really are excellent.
When you think youâve finished the form, take a day or two off, then read it through critically. Does it say what you want it to? Have you got evidence to support your statements? If not, and you can get more evidence, send the form off and get the evidence to send later.
On that note, when you have finished the form, photocopy every page and post it recorded delivery. Donât use their envelope.
Itâs a long drawn out process, but the better your claim is, the less likely you are to have to request mandatory reconsideration or appeal.
Obviously if you can get welfare benefits or the CAB to help, do, but remember itâs your claim and you need to be happy with what they say. If they donât write exactly what you want them to, get another form and start again (explain to the DWP that you didnât agree with the advisor - theyâll send you a replacement claim form).
Best of luck
Sue
the worse thing about it is that you have to tell it as it is on your worse days. i have been determined not to feel sorry for myself ever since diagnosis but the PIP form really left me depressed. do you reckon itâs deliberate - make them lose the will to live? well i havenât given up my will to live! Bah!!
Carole what makes it worse is my diagnosis was changed by a new neuro from SPMS to benign MS!! i challangd him over this as i am very ill and have lots of symptoms that dont sound benign to me.I have very bad balance and i can hardly stand for more than a few minutes i cant walk more than a few yards.I have cognitive issues that are bad too.So when i put everything down i feel like i am lying and so will the DWP if they contact this new neuro.I just feel like giving up and not applying at all.What chance do i have if the neuro tells them i am benign,they are going to belive him and not me.Im scared they will make out i am lying.I feel so angry with this new neuro but it will be his word against mine.I cant face all this.
Now then enough of that. I was told by my neurologist that someone with one lesion can have more disability then someone with a lot of them. Its where the lesions are that counts.
why did you accept this diagnosis. How the hell can you go from SPMS to benign which i dont even believe there is such a beast to be honest.
quote.
People who have benign MS have the mildest form of the disease. They may experience symptoms, but their disabilities may not accumulate and an MRI may not show an increase in disease activity. However, symptoms can worsen over time.
though diagnosis and outlook for benign MS are unclear, there are a few things to keep in mind:
- Mild symptoms at the time of diagnosis donât necessarily indicate a benign course of the disease.
- Benign MS canât be identified at the time of initial diagnosis; it can take as long as 15 years to diagnose.
- The course of MS is unpredictable, and having benign MS doesnât mean that it canât progress into a more severe form of MS.
MS is a manageable disease. If youâre diagnosed with any form of it, you should weigh the pros and cons of different treatments, including disease-modifying medications, with your doctor.
https://www.healthline.com/health/multiple-sclerosis/benign#outlook
It doesnt mean you have an MS that will never get worse, it is just very slow to progress. I dont know how you got to SPMS as you must have been progressing from RRMS surely or have I got that wrong?
https://www.healthline.com/health/understanding-secondary-progressive-ms
sounds to me whoever diagnosed you SPMS must have seen a progression from your original MS. I think i would have gone for a second opinion when told I had benign MS. what was your EDSS score when you were diagnosed with SPMS?
Look just fill the form in the best way you can. I would ask for a second opinion. You can put that in your forms.
they cant have it both ways i dont think anyway. either you are SPMS or not.
BUT having benign does not mean you wont progress it just means it may be slower. BUT you are progressing so it must have skipped something.
like i said you need a second opinion. You need to fill the form in as you are. Its called personal independance payment as it is not DLA. they need to know how dependent you are on aids, and others, so if you are then tell them and put in proof.
If you go for a second opinion it will show up on your notes. Or you can put it on your forms.
Now deep breath and breathe. You know how you are? take this test it helps.
http://www.mybenefitsandwork.co.uk/pip/indexxx.php
https://www.turn2us.org.uk/Benefit-guides/Personal-Independence-Payment-Test/What-is-the-PIP-test They will help you. xxx
good luck but dont let them win before you even start. Like i said you must have been told SPMS for a reason, being told you have benign in a way for me would have been a relief as it would have meant I have MS but for now its taking a holiday but even holidays have to end, and if it is benign it will wake up again. shame you cant just enjoy the break without worrying about all this. xxxx
I did challenge this new neuro.I asked how the heck could it be possible that my diagnosis had gone from SPMS to benign!! I have had walking problems from my very first relapse many years ago.I never recoverd from that fully.I have too many symptoms for it to be benign and this so called MS specialist that took over from my old neuro never listens to me,every time i told him something he dismissed it and said no thats not MS,so i gave up going.I dont see any point going for a second opinion as he is supposed to be one of the best in this part of the country.I dont have a life i exsist from on day to another.I cant walk more than a few steps,i cant do any cooking,i cant stand long enough,i cant clean.My carer is my husband who has to do everything.I think if i was benign i would hardly need a carer would i.I also dont have the strength to fight this so called MS specailist.He wrote me a letter saying that this new classification of benign MS wont affect any benefits i get??? I think it will though.He also said just because hes changed it to benign doe not mean i wont have symptoms like i have.I just dont understand any of it at all.
Hi Jaydee
Crazy Chick is right, benign MS just doesnât make sense.
But it sounds like youâll get nowhere challenging this neuro. Arrogant so and so.
With regard to your PIP claim, so long as you have evidence from elsewhere, thereâs no need to include any letters from this neurologist which could sound like you have a milder form of MS. You have to put the name of your neurologist on the form, but the chances that heâll be written to as part of the assessment are miniscule.
Basically, the medical assessment is done by the outside contractor (eg Capita) using your claim form, the evidence you supply and usually, a personal assessment. It is quite unusual for them to write to your medical professionals for evidence, they use what you have provided. Once the medical assessment is complete, a report is sent to the DWP for one of their officers to action your claim. The decision about your claim is made by the DWP but using the assessment completed by the contract company.
So if you have enough evidence then donât worry about the redesignation of your MS as benign. Write on the form that you have Multiple Sclerosis, diagnosed on whatever date. Leave it at that. The medical assessment is not based on your diagnosis,but on your physical and mental capabilities. The person who looks at your claim is not likely to be an expert on MS, so the differing variants will not be relevant. But the ue of the word âbenignâ as you can imagine, is likely to influence the individual without even having an understanding of the different types.
So rely on letters from your MS nurse, your physiotherapist, occupational therapist (if you have them), social care assessment, carers, other doctors and/or nurses (I see a urologist and a colorectal surgeon plus a rehabilitation specialist doctor). If you have letters from a variety of other sources, the lack of a letter from your neurologist wonât be noticed.
Sue
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Hi Sue.That is just what i am going to do.I will send letters of proof that i already have from the MS nurse and a social workers assessment and just hope they donât contact him.I feel so angry with him and i wrote a very detailed letter to him asking WHY my MS had been changed to benign after all this time i always came away from appointments feeling as though he never believed a word i said so im not going again.
Itâs just what you didnât need, while youâre sweating over the poxy form, to have to worry about your neurologist re-designating your MS. Donât worry, they wonât write to him.
Sue
jaydee,
have you got access to friends or family who can articulate on your behalf and challenge your neuro to give you written explanation for his opinion. You donât need to waste your valuable energy but this should not go unchallenged.
Good luck
Mick
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Today I received my wad of paperwork.
1 a two sided note
2 a 12 page booklet to help me fill in the forms.
3 a 40 page application form. Luckily only 15 questions!
4 the opportunity to scramble around for supporting evidence .
Just as well I have boundless energy, full cognitive faculties and do not ever suffer from stress or brain fog ???
(my sarcasm and cynical nature function pretty well)
Each of the questions requires handwritten answers.
I am left handed, and sadly MS has focussed on the left side of my body. I can now address an envelope with the skill and dexterity of a 4 year old child. However I can type with 2 fingers of my right hand, do you reckon they will let me submit typed responses?
I am not complaining and I recognise that there are people who would give their dominant arm to be as lucky / healthy / supported as I am, but I am not looking forward to this.
Mick
Mick
Yes you can submit typed answers. Make sure every page has your name and NI number on it, and if possible number the pages as in âPage 2 of 7â, etc.
Head up every section with the question you are answering, at the beginning explain the reason why you are typing your answers and on each section of the form write (or get a grown up to write) âplease see attachedâ. Ie spell things out to them. Itâs worth reiterating youâre left handed and canât use that hand/side several times over.
And youâre not supposed to enjoy the process. Itâs misery all the way, until you get the decision and itâs in your favour.
Sue
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Thanks Sssue, your wisdom, experience and ability to share are very much appreciated.
M
Mick i wrote to the so called MS specialist a very stern letter asking him how the heck can SPMS be now, benign MS but as i expected hes not going to change his mind.He thinks hes god like a lot of them do.I just wish my neuro had not retired he knew a lot more about MS than this so callled specialist.I told my GP i refuse to see him.
jaydee,
I hope that your GP will get you a referral to another neurologist, even if you have to travel further, it will be worth it to have the support of a professional whom you respect and who respects you.
all the best
Mick
sue wrote âget a grown up to writeâ
and Mick didnât even notice!
you are both amazing!
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