DLA to PIP

19 May 2007, 7:27 pm

Hi Nick

I think it was 'make sure we respond within 4 weeks' at DWP last week. I've now absorbed the fact of going through that challenging process for an effective 'no change' result. I was on Higher rate DLA for care and mobility; I'm now awarded (teeth-grinding terminology) Enhanced rate for the daily needs and mobility elements of PIP.

This is hopefully encouraging for all still waiting. For you, @Nick, I urge you to ask for a mandatory reconsideration, and then appeal this decision if necessary. Please don't accept losing your mobility status. You may not require a Motability car but you DO have to finance running, and eventually replacing, the current car you had adapted. Come the distant day when you no longer drive, you will need the resources to access public and community transport.

Needing an adapted car is an indication you have not had justice - I know it isn't a specific descriptor - so please take another deep breath and begin again.

This DLA- PIP process is completely flawed, logistically and morally. I'm in correspondence with my MP. Nothing will change until we hold up our hands and use plain English to explain how humiliating, time-consuming and unnecessary this application, for something we already have, is.

I have a 10-year award so in the months leading up to the 'soft-touch' contact, I will download the current form of 2027 and make notes. I will continue to keep records. I have annual visits to my urologist as I now have an Ileal Conduit stoma and we've moved into Extra Care. I am dependent on my wheelchairs and my time slots with the 24/7 care staff, and Pete is my lifeline.

That said, I am a happy person most days. It took one stupid piece of beaurocratic interference to destabilise me. MS People has thrown me many a life belt through the years. I am so pleased to be back home.

21 Apr 2011, 10:42 am

Many thanks Shirley for your reply.

I am considering things at the moment. I think we all agree on the total disgrace of this system, and how it ever got through parliament! Not only is it unworkable and unfair, it is also proving to be much more expensive than the previous system.

I was awarded 10 points on the mobility side and that is (under these rules) about right. I use both a scooter and a wheelchair, yet at the same time do keep walking using two sticks. That is what I need to do, I will not allow the DWP to interfere with my struggles to keep mobile, by forcing me into permanent use of the wheelchair. That is what it feels like! That might seem a bit crazy but that is how it is.

The problem, as I see it, is that there would be a danger in a 'reconsideration' that the outcome would not improve my position. Also as the award is for two years I should then get a chance to have a more accurate outcome. One of the most annoying aspects is this business of having a short period of award. As my wife Kay said, 'Do they think you are going to get better?' It just shows that the decision makers are not really doing their jobs adequately.

8 Sep 2018, 6:49 am

That is great news Shirl.

Not quite sure of diffference between higher rate DLA and Enhanced rate PIP is but then the whole PIP Thing is a mystery.

I went to see local centre for integrated living people based at multi denomination church here and it was easier less stressful having some o e else fill form out for mandatory appeal.

The benefit adviser was very sympathetic and like everyone there has been through process herself.

I m gearing up for refusal as I kind of want the next stage of appeal and have decided to not bother with MP for now as it's only been his secretary so far who has (sort of) taken an interest.

Totally different to MP ten years ago when I got 3 replies from house of commons !

I have nothing so losing everything as is threatened if I lose doesn't worry me.

The losing car is really stupid as I will get back on scheme at some point.

For me it was handy when I got puncture etc someone else fixed it ( I couldn't nowadays).

My argument now is how an assessor can overrule two doctors and a private occupational Physician one of whom was an ATOS Dr who the DWP still use ?

My dilemma will be if I win this mandatory appeal and it is lower than previous DLA 🤔but I'll cross that bridge if it happens.

Thanks for keeping us informed and giving us all bit of hope .

WobblyGreg

19 May 2007, 7:27 pm

1 hour ago, Nick said:

Many thanks Shirley for your reply.

I am considering things at the moment. I think we all agree on the total disgrace of this system, and how it ever got through parliament! Not only is it unworkable and unfair, it is also proving to be much more expensive than the previous system.

I was awarded 10 points on the mobility side and that is (under these rules) about right. I use both a scooter and a wheelchair, yet at the same time do keep walking using two sticks. That is what I need to do, I will not allow the DWP to interfere with my struggles to keep mobile, by forcing me into permanent use of the wheelchair. That is what it feels like! That might seem a bit crazy but that is how it is.

The problem, as I see it, is that there would be a danger in a 'reconsideration' that the outcome would not improve my position. Also as the award is for two years I should then get a chance to have a more accurate outcome. One of the most annoying aspects is this business of having a short period of award. As my wife Kay said, 'Do they think you are going to get better?' It just shows that the decision makers are not really doing their jobs adequately.

Kay is right and they are wrong. However, are you actually safe walking? Plus, is your walkling truly feasible over the 20 metres descriptor? It would be a travesty of 'justice' if you were to fall and really hurt yourself. I really don't want to nag you or challenge your own sense of Truth. Please forgive me if that is so.

I was honest to say I can walk with my zimmer and/or walking stick indoors. a few metres at a time and not always able. It is the combination of my knackered power supply and severely latent visual to brain responses that make walking outdoors impossible. A while back, at our previous home, a physiotherapist, working with me post-operatively, took me out over two steps and down the path. She very soon discovered how dangerous this was. I only agreed to try because I was being 'good'. Sometimes fitting into the constraints of a system seems the right thing to do but is not necessarily the right thing for you, surely?

I respect your decision, Nick, but I feel sad you are not getting the help you had before this process. A flawed system is therefore winning. And it is highly unlikely you will be healed in two years time. That is the other part of your award that is faulty... unless the assessor indicated you had more disability than you were claiming for?

There will come a time when this thread will close - for sheer length. I hope it will be pinned because PIP is the biggest benefit hurdle those of us with MS face. I believe there are rumblings of discontent in the House but we need Brexit out of the way and then we can make ourselves heard.

Just give yourself time to think, as you say, Nick. Be kind to yourself meanwhile.

16 Jul 2004, 10:20 pm

38 minutes ago, Shirl said:

I hope it will be pinned

It's currently better than pinned, as it was added to Spotlight a while ago. This means it currently also shows at the bottom of the forum index page in the Spotlight scroller and it's also currently linked to at the bottom of notification emails :flowerface:

Edited 1 Oct 2018, 11:54 am by Marina
Added "also" in 2nd sentence

19 May 2007, 7:27 pm

Thanks Marina - it is all so different and better!

21 Apr 2011, 10:42 am

Thanks again Shirley,

One reason for going 'public' with my PIP 'Voyage' was to try and help other people who may be struggling more than me to understand the system.

That also helps me and I am very thankful for your response.

One of the problems in all this is the fact that our capabilities are all different. I am very limited in my walking ability and had actually shown the assessor some cuts and bruises I had sustained from a fall a couple of weeks previously to my assessment. You can call me stubborn but I continue to take risks, in order to maintain walking ability. I also do group exercises specifically aimed at maintaining muscle strength. A while ago I was involved in a long term study of SPMS with specific regard to using the drug Natalizumab to improve walking ability. My EDSS level at that time was measured at 6. This would put me at the 10 level I achieved at the PIP assessment.

Having said all that it is clear to both Kay and I that my main requirement for 'support' is in regard to mobility, rather than in daily living. I changed over from a motorbility car three years ago, in all truth because I felt I was not getting good value for money. This was lucky because now I am quite happy owning my own car which is modified and I don't have to worry about it being taken back. The support money I am now getting is roughly the same as before (slightly more in fact) and I will still be able to retain my blue badge (That is independent to some extent from the PIP system)

Moving on, I have now got my assertors report back from the DWP and that makes for interesting reading. What I would stress to others is to make sure you get all the supporting evidence you can beforehand. It is clear that in my case nobody at the DWP contacted any of my specialists, I would also suspect that the documents I did submit were probably not read. Rather they are simply noted and my wording in the PIP form was simply 'tested' for inconsistency.

As the DWP says itself, the assessment is not a medical. The whole process therefore puts the onus of understanding what is being asked on the applicant. Another very good reason perhaps for using an indecent specialist to help you filling in the forms. Even that is reliant on the expertise of the assisting person.

8 Sep 2018, 6:49 am

A couple of little updates or rather things i have heard whilst waiting for my appeal result pt1

I had a meeting with my MS nurse after benefit adviser and have appointment with Neuro in November to get another Chec k up as I think I am probably not RRMS more secondary also the anthrophy has gotten worse.

Nurse said as I'd been off radar for ten years it was best if they saw me once a year just for this very reason (another expense the PIP/Dwp Nazis have cost NHS).

ALSO I was told that a nurse had sat in on a PIP assessment to help a brain damaged patient and was told how surprised they were that the assessor asked same questions over and over when the Nurse pointed this out the assessor stopped , but the Nurse said this was to catch inconsistencies in answers in other words to trick you ! This is as nurse said is not how you are trained as a nurse and found it hard to believe a former nurse can behave that way .

I also spoke to my car dealer who has said I'm not by any means his first Motobility return I get impression they are pretty pissed off as well.

I have sorted another car out which when I get the lump sum for returning motobility car will more than pay for , I like the monthly payments rather than forking cash out for car i have to mot and service etc.

In fact I might not join motobility scheme again as I don't trust government to not change the rules again.

All in all I feel very betrayed by this government and am glad I never voted for them and never will .

I'll post update when I get result of mandatory first appeal 😎

21 Apr 2011, 10:42 am

Good to hear you are back on the MS Radar.

When I had a motorbility car I found the dealers were pretty useless. Finding the local company that these people tend to use to modify the cars, may be a better way of getting decent information about suitable modifications. In my area I now use just such a company who have the knowledge and expertise to advise properly.

Nick

8 Sep 2018, 6:49 am