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Nick

DLA to PIP

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WobblyGreg

Thanks for that Nick

My surgery is notorious for being hopeless even with long term illness I have never been asked (or maybe once ) to see anyone and on one particularly  memorable  visit I was told "well your not as bad as some people" A very strange thing to say from Dr .

 

My neurologist wouldn't give me a diagnosis and said it was probable ! I virtually threatened to sue if he either didnt find out what I had or give me DX . We never quite got on after that lol

 

I saw my firms In surance Neuro few years back but they wanted me to pay for report, which I didn't as thought it's about me i should be given it.

 

My M&S nurse resigned when her husband was diagnosed with........MS and went to work in another field. 

 

So basically I've been on my own pretty much and left to own devices which I like and hoped it would continue.

 

I met my MP and quite like him as a person but he is Tory so not most sympathetic party for disabled but I will keep him informed although hasn't helped yet. Though he was away when my interview was scheduled .

 

I will be going to appeal but as I say it's still raw as only got result yesterday.

A month to reply and then appeal goes through how long that takes is anyone's guess.

Greg

 

 

 

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Tired
Marina

A quick Admin note to say I've merged Greg's old account with his new one.


Marina

(belated DX in June '05, SPMS)

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Gosport Nancy

So... I sent in my part two form on Saturday 25th  August and haven't heard anything yet.

 

Last time round I had a home visit for the face to face assessment.

 

I can knock off fatigue as an ongoing issue as I started on CBD treatment less than a month ago and the fatigue isn't something I wake up with now. I have been out weeding and rotavating the garden with no ill effects and haven't needed any afternoon naps.

 

I'm wondering if I will have much to report at the assessment as I don't have any medical reports for other symptoms.

 

Going with the flow is the way to go right now. 

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Nick

Well, always remember, looking after your well being should come first.  Weeding and rotavating  sounds like good exercise and small amounts of exercise will be beneficial to MS fatigue symptoms. I have never tried these various 'other' treatments and use Modafinil to reduce my own fatigue symptoms.  The biggest problem I have is with stress, which exacerbates my MS symptoms.  We are all different, the varying levels of disability dictating the amount of  care we need, something to bare in mind when applying for PIP.   Again, the biggest problem here is with the application of the assessment that relies on us providing the evidence, through a semi-automated computer program.................what could possibly go wrong!!

 

 


Just another Warrior...........

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Shirl

Oh Greg, I am so sorry to read this. You must be in utter shock and dismay. Having a Lifetime award removed is not only shocking but also cruel. Whatever it takes to turn yourself around and get your appeal moving - DO IT. Try to get physical and moral support from a charity such as Age UK (some branches are geared up to this although the savage cuts have diminished their effect, of course). Don't take No for an answer when you are ready to put your mind to fighting.

 

Also, Nick - Does it not say in the PIP2 booklet (mine has been filed until further notice) that any supporting evidence does not have to be new/recent? I am a hospital letter (not the appointment notices) hoarder. 

 

And it is all well and good me saying this - I have yet to receive my award letter. I am trying not to dread it as that changes nothing. It is a strange limbo experience in that this time last week I was getting myself through the assessment process. Now I am wondering if I have the biggest hurdle left to achieve. 

 

I really am very sorry you've had this blow.

 

Take care of yourself.



Shirley  "one day at a time" - it's all anyone can do"

 

This year, my husband is raising funds for MS Trust with a 
Pete's No Beard Or Hair Cuts 2019 (Colour in December) Challenge for MS Trust

Thank you all

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Nick

Shirl,

 

I don't think there is any restriction on the date of your evidence. What seems to be rather obscurely worded, or framed, is that they imply that they  will contact your Dr., etc, when what they appear to do (in most cases) is simply rely on what you provide.  This makes it extremely difficult in the case of long term conditions to be able to comply within the time limits imposed, once you start a claim.  Good advice then, to seek professional help.

 

 I am fully prepared for the next step, but will be using an organisation call D.I.A.L. ,should it be necessary.  In some ways I probably should have used them from the start, but felt I wanted to be able to do things myself.  I hate the 'label' named disability, and have always strived to do most things in life myself.  This is what can be so damaging when having to prove you have a disability.  I suppose the DWP would deny that this is what happens, as it would not be in accordance with the equality act, yet that is what it feels like!  Looking at the other side of the coin, parliment makes the rules that we must abide with. Sorting out how you measure some peoples capabilities through this method was always going to prove impossible, hence the current mess we are in.  So far the government has saved nothing with this policy and while it is good to see fraud exposed, this was never a big issue when it came to disability benefits.   I feel confident that I have the backing of all my health care professionals, who I know are going to back me, should it be required.

 

So folks try not to get worked up about the injustice side of things.  Instead use that energy to understand the rules of the game.  Play the best game you can and go with the flow, let others fight your upstream battles for you. 

 

Nick 

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Just another Warrior...........

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WobblyGreg

Hmm easier said than done . 

I also don't like to think I'm weak and like to think I'm pretty clued up and in fact have won cases against one of biggest companies in the world.

 

In this case I was dealing with a woman who knew nothing of my condition did not ask or had to hand any previous information just asked a lot of routine questions I knew how to answer through experience of such people. 

 

She kept saying I don't want to know what you can't do but what you can again not what is in Dwp book of what to expect .what she also  ignored me walking wrong way on way out or fact my car was more than 200metrtes away and I had to stop twice on way back. She'd said in her report I seemed to walk okay. 

 

I used crutch throughout interview and table and chair to stand despite her saying I seemed to sit up and down okay.

 

I showed her my leg as I was in shorts she even knew I had anthrophy  she even said so .I showed bruises where I fall.

 

Basically she ignored what I said and over emphasised what I'd said. 

It is all very well saying I should have done that and this but when you are there on the spot and obviously not Stephen Hawkin it's very hard to say one is COMPLETELY useless when it's obvious one is not.

 

I'd told her I can't cook or shower or bath without anyone thrre as I fall a fact that must be obvious to anyone who sees i have a leg like a twig and one that is like Schweneggers (spl).

 

My mistake was not walking out straight away when she said she was not a doctor or even a nurse I'd mistakingly thought as law was changing to allow ppl with long term conditions to not have to re-apply this would be routine and simple change over from DLA to PIP

 

My right hand is actually fusing together and is different colour to the other as the right side of my body is most effected by MS .

 

She could actually see that made no comment in report 

When you hear people say they are just doing their job tell them from me they are not they are there to take your benefits away pure and simple.

 

If I ever heard of anyone who was going to do harm or target anyone from DWP there is no way id interfear or report them id just do what DWP do and shut my ears !

 

 

 

 

 

 

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Gosport Nancy

Hi Greg.

 

My experience of the face to face interview was similar to yours.

 

I put in for a mandatory reconsideration but was turned down then too. I was then sent the full report which included that I walked at  a normal speed and with a normal gait (2 things I haven't achieved in more than 20 years). The report said that I reported memory issues but as I had not been to a memory clinic I had no evidence of this. 

 

The assessor asked about painkillers and I told her that I took complementary medicine for pain but only once I took Gabapentin for back pain and the side effects were so horrible I hadn't taken any since.The report says that I told the assessor I took Gabapentin every time I had a headache.

 

I told the assessor that I couldn't shower as my blood pressure drops when I raise my arms for more than a few seconds and I pass out. We have a wet room with a shower (no bath) but the report said that I could manage a shower with a bath board.

 

The assessor was an Army medic and appeared not to know how to assess much at all.

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Nick

Greg,

 

I've great sympathy with how you feel and know and understand the frustration. My point was simply that it is very damaging to allow your cognitive energy to be burnt up wasting time on such feelings.  Very hard not too, I know, but there is an old saying that life is all suffering, expressed these days as, 'Life's a bitch and then you die'    Things are, as they are, you won't change the present situation anytime soon, so buckle up and start getting all that information you need, if you have been turned down there is nothing to stop you applying agin once you have what you need ready.

 

Nick 


Just another Warrior...........

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WobblyGreg

As today is Sunday and i ha ent had chance to contact anyone im stuck looking up all old paperwork . No joy as yet .went to ladies game today carry on as normal.

 

I am going to going to ring CAB in morning and Occupation physians I used before who helped greatly when I was first refused way back on diagnosis sadly occupational Dr has retired but going to try same firm my  Neuro is last resort .

 

With school runs I'll be limited with time but hope to get some appointments sorted.

I have month to get sorted but will take advice from CAB or DIAL if they have office near MK.

 

Remember Anger is an energy as Johnny Rotten would say , I'm not sort to mellow out and be calm not in make up I'm afraid. 

 

 

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WobblyGreg

And due to my hoarding nature I have managed to find three letters from house of commons from a former MK MP but more importantly the Occupation Phycian report from time I got my unlimited lifetime award for DLA. IT WILL as MS progresses knock the stupid lying assessors report into the bin with hopefully her job. 👍

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WobblyGreg

I have got in touch with rehab centre im still on record a d my MS NURSE will be calling me later interestingly she has been busy with yep PIP applications and PIP refusals .

 

 The local CAB CENTRE is now only doing walk in  clinics starting on Tuesday 's so no help today .

 

There is help at local church I'd been to before lady at rehab said good for doing forms .

 

No local DIAL  office and other links here are mainly for Northampton and Bedfordshire , I shall exhaust local area contacts first.

 

I really just need a current medical report  and advice on appeal and getting form I don't trust myself now or dwp.

 

So leaving it to experts I'm going to lose car that's a given Nazis  have made their decision.

 

Just seems so stupid as car goes back I then get another one in few months .

I'm who PIP is designed for they gave it me once on Dr report I have got report now and ms is worse it's ridiculous .

 

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Nick

Looks like you are getting somewhere.   The best online advice I know of is the Benefit&Works website 

 

WWW.BENEFITSANDWORK.CO.UK

Get the benefits you\'re entitled to: help with employment and support allowance (ESA), personal independence payment ( PIP), disability living allowance ( DLA). Claims, medicals, appeals.

 

Well worth signing up too. However it may be better to keep looking for a good local support group, so that you get direct help. 

 You should be concentrating on the process rather than blaming individuals who are involved in the actual assessment.  The reality is that the mobility part of the assessment has been tightened up.  If you fall outside of that, then clearly you won't get the higher rate.  Where the problem lies is how that can be determined in variable condition cases, such as MS.  A diagnosis of MS is by legal definition classed as a disability. What it does not do, is automatically entitle you to specific benefits.  These are determined (like it or not), by the current PIP system. 

 

This is the harsh reality and to ensure you get what you are entitled too it will often be the case that all your energy needs to be spent on going through the whole process of application and reconsideration.  Something I'm concentrating on right now.  Having completed the process, it may well then be time to launch a campaign to change the legislation, but not until you have completed the process. 

 

I went through all this 10 years ago with ESA, did the medical, was awarded the necessary points only to then discover that I was not eligible for any ESA, under the current system. A bitter and difficult blow, that seriously impacted on my MS! No way can I afford now to waste precious energy on condemning the system or the people involved.  Stick to the plan, go with the flow and give it your best shot, and accept the final outcome. Life's to short to spend it on blessed PIP

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Just another Warrior...........

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Nick

Yesterday saw the arrival of a brown envelope, This I thought is it! BUT no, Interestingly it was a letter from the DWP, simply stating that they now had all the information required to be able to make a decision on PIP.  Looking at my notes, I see that I first contacted the DWP back on the 21st June. So it's basically taken 3 Months and 3 different organisations (DWP, Independent Assessment Services, and Acenti) to get a small amount of information from me.  As far as I am aware, they have not contacted any of my medical support team!   It's a mad world, Will I get the final decision next week? 

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Just another Warrior...........

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Sluggish
Shirl

Oh dear Nick. Have you been receiving DWP/ PIP text messages/updates? They are quite irritating. You must have thought your time had come at last. But no, the mystery of the DLA- PIP "changeover/invitation/application" process meanders on. I'm still waiting too!



Shirley  "one day at a time" - it's all anyone can do"

 

This year, my husband is raising funds for MS Trust with a 
Pete's No Beard Or Hair Cuts 2019 (Colour in December) Challenge for MS Trust

Thank you all

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Nick

No, I don't think I gave them my mobile No.  That sounds really awful,  The whole process is incredibly flawed, I shall try and keep calm and let it happen.

 

Nick

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Just another Warrior...........

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Sluggish
Shirl
On 14/09/2018 at 12:25, Nick said:

No, I don't think I gave them my mobile No.  That sounds really awful,  The whole process is incredibly flawed, I shall try and keep calm and let it happen.

 

Nick

Hi Nick

I guess we're still waiting? The only way I'm coping is by believing I'm losing everything DLA awarded for life 22 years ago. Fear the worst & hope for the best. Trouble is, I'm not a good liar so I don't even believe myself.

Kee-eep hoping...

 



Shirley  "one day at a time" - it's all anyone can do"

 

This year, my husband is raising funds for MS Trust with a 
Pete's No Beard Or Hair Cuts 2019 (Colour in December) Challenge for MS Trust

Thank you all

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derby42

Hello Nick, I've recently been through this and although it was horrid having an adviser to my home it all went well. Like you, I was told my DLA was for life but I suppose there's many of us in this situation. I'm sure you'll be fine x


derby x

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Nick

 An update on my PIP Claim.  I got the dreaded letter this morning, I was shaking by the time I got the envelope open!  The whole PIP process has taken  3 months.  I've been awarded the higher rate for daily help and the standard rate for mobility.   My own assessment would have been the other way around, but bearing in mind the strict criteria for the PIP Mobility and the fact that I fit the 20-50 Mt distance, I feel satisfied that this has been worked out pretty accuratly.   I also note that my award is until 2020!   Does this mean I have to go through all this every two years!!! I have no idea, but perhaps the system will be changed by then.   

 

I just rang the DWP and asked for a copy of the Assessors Report, this is good advice, as any documentation may be useful in future. Remember keep everything!!

 

I'm now no longer eligable for a Motability Car. A private car on the 'standard rate' now has to pay 50% Road Tax as opposed to 0% on 'enhanced rate'.  

 

A couple of years ago I brought my own car and had it modified as I feel that the Motability scheme was never that good a deal.  However it must be very difficult for a lot of people having to lose their car suddenly due to these changes.  

 

Nick


Just another Warrior...........

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derby42

Well, I'm pleased it's all over for you Nick, for 2 years anyway but as you said, this whole carry on must be devastating for many others. 2 years isn't long is it? I have to fill in another lengthy form for my capability to work assessment for universal credit. The G.p I saw last time was disgusted that I'd been made to go. It's not likely that I've improved eh? There's something seriously wrong with this system. 


derby x

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Gosport Nancy

I'm chuffed that it is all sorted for you now. Nick.

 

I most likely have several months to get my PIP organised. I sent my form in on the 25th September and have heard nothing back so far. 

 

It's not just people who drive that have to re-organise their lives without the full amount of money. I have been housebound since my DLA stopped last year  as the mobility part paid for taxis to get me to the supermarket and to GP and hospital appointments. I have lost count of the appointments I have had to cancel.

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Nick

Thanks for the posts Guys and nice to see Derby posting!!   I think you have to split the emotion from the facts and learn how to get your problems across  by understanding the limitations of the current  (bad) system.  The most important thing seems to be collecting written evidence yourself and not relying on the DWP to ask those questions.  Always always keep records and ask your health professionals for written statements about your condition. 

 

Nick


Just another Warrior...........

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derby42

Thanks Nick, nice to be back, it's much easier for me now, had to keep asking Scully for help to get back in before so I gave up! 

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derby x

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Tired
Marina

I’m so pleased for you, too, Nick! Your nerves must’ve been all over the place, at least you can relax a bit now.


I’m peed-off, though, that you didn’t get what you should have been “awarded” (as if it were a prize!) and that you’ve lost your Motability (for what it was worth to you). As for the 2-year period, that sounds punitive. The system is so unfair and just stinks.


All that said, I’m sure people really appreciate your advice on how to go about handling the claim :thanx:


And, yes, nice to see you back, Derby! :wave:

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Marina

(belated DX in June '05, SPMS)

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