My Dilemma.

dreamdaisy

I am fully aware that none of you can answer this but it's a chance for me to write out my thoughts and therefore - hopefully - clarify them. Some chance!

Since 2007 I have been in receipt of indefinite higher-rate mobility DLA, and very useful it has been. It's helped pay for my various bits of kit, massages and household assistance, all of which are now, sadly but not unexpectedly, more vital than ever. My new award letter came through last week (note to self, find it) together with the same warning about PIP as I received last year. Basically it stated that if things are worse I should contact them and apply for PIP, or if things are still the same I should wait for them to contact me.

This set me thinking. Things are far worse than they were when I first applied but still I manage albeit with much more help from aids and household assistance but not so much the massage (my therapist now cuts my hair, which is good for my morale: she's not trained but I ain't fussy).

My dilemma is this: if I wait for them to contact me and then state that things are worse will they wonder why I haven't been in touch before? If I apply now could the transition from DLA to PIP be somewhat easier - and should that matter? They state that I may not need to appear before a tribunal due to my current award but if I do I do, that doesn't worry me. I also wonder if I am over-thinking this which, believe you me, is not my usual habit. I have no doubt that the DWP has no idea who I am because I have no idea who 'they' are.

I have little experience of the benefits system, to be frank I was astonished that I was given the award in the first place. Of course things have become more stringent and rightly so: I receive this money thanks to the taxes paid by those who are in good health and working hard to keep roofs over their heads so I do not take this lightly.

Crikey, I think I'm clarified. I can feel some very negative paperwork coming on, there is nothing worse than detailing what you can no longer manage. To me it's the right way to proceed.

To paraphrase someone from long ago on Radio 4 'If you have been reading, thank you.'

DD

daffy2

Given the mess the whole system appears to be in I can't help feeling it's a case of 'damned if you do, damned if you don't'. Things are working at present but as you say 'they' may query why you haven't notified the worsening of your condition. Then again if you go proactive will the whole thing turn against you?
Added to which is your personal response to the situation you find yourself in, which is that things have got worse and life is more difficult, and that's not a nice thing to have to accept - however gung-ho one is usually.
Being the person of integrity that you are you don't regard such benefits as you currently receive as your god-given right and that is commendable, but remember you have Mr DD doing his bit to offset your unreasonable drain on the exchequer(!). The longer you keep your independence and he keeps his job the better for all in the grand scheme of things.

[Deleted User]

Hi DD
if your condition has deteriorated and you are needing more help have you thought about getting a personal budget? I know you have Mr DD but this is help for you when he is out and about. It is provided by your council so it does mean speaking to social services http://www.ageuk.org.uk/home-and-care/help-at-home/self-directed-support/making-care-personalised/
Moderator Sharon
Ops sorry DD :oops:

dreamdaisy

Thank you both for taking the time and trouble to read and reply. My gentle decline has been going on now for some years but one adjusts by making further changes and carries on, yes? Well, that's what I do but it tends to 'distance' me from what has actually happened, I think I can cope (and I can) but there's no doubt things are becoming more difficult. I am still able to manage my personal care and can still cook etc. although I have had to change how I do things which is neither here nor there. I do need help with the heavy cleaning work (even my cordless vacs are sometimes too much and I cannot properly clean the walk-in showers) but we're not living in a pig sty (even though I am not tidy!) My mobility, however, has been the greatest casualty and that has had the biggest impact on day-to-day life.

I will contact the DWP and ask for the forms, I shall also investigate the personal budget option too, I did not know about that and thank you, mysterious Moderator for the information - as a well known supermarket chain says 'Every little helps!' as does every little piece of information.


What someone didn't sing.

There may be trouble ahead,
But while there's moonlight, and music and de-dah-de-dah romance,
Let's face the music and do our best to dance. DD

bubbles

Hi DD,
When I read your post, I thought, I am in the same boat. I had a letter last week from the DWP, stating my indefinite awards, then going on to explain about the transfer to PIP and to inform of any changes, or if your condition is likely to last a long time or get worse, which, by natural progression, it most certainly is.
I have not spoken to them, but I have written to my Consultant, to see what he thinks (even though he is highly irritated by the whole jumping through hoops bit).
I agree, the benefits are indeed a blessing and being disabled is in no way a choice that I would make.
I will wait a while and see, from all the notes and reports they already have, surely they can see that things will not improve. Mind you, you don't know who reads them and what authority they hold in the grand scheme of things. XX Bubbles

Numptydumpty

Hmm DD, I admit I know very little of these things, but I won't let that stop me from giving my opinion.
As you already receive the higher rate mobility, you clearly won't get more, I know you wouldn't expect / want to. They really want people to let them know if things have improved (obviously)
As far as I can make out, PIP is harder to come by than DLA, why rock the boat? That's not to say I don't think you'd qualify, I'm sure you would, and my opinion doesn't count anyhow, unfortunately
I'd be tempted to sit it out, who knows when you'll be reassessed? Then just tell them how it is when the time comes. That's what I'm doing anyhow.
Hope all goes well,
Numpty

Slosh

I can't offer any words of wisdom but I feel for you having to make such a difficult decision.
Writing this listening to breakfast time and that the Government wants to make further changes to PIP as it's too easy to claim! Luckily there are a lot of back bench tories who disagree.
All I can suggest is making a list of the benefits /losses of each choice.
Good luck, I don't envy you or others in the same position.

dreamdaisy

Thank you everyone for your thoughts and input. Mr DD can't see why I'm willing to rock the boat, neither can a friend who has severe arthritis and has decided to wait it out until the DWP get in touch, her view is she doesn't have to do their work for them and she doesn't want the extra pressure (I can truly empathise with that). I too have heard about the proposed changes in the PIP system (honestly, the smug healthy have not one clue about real life, do they?) so that is another consideration.

I'm back dithering again. :roll: I can see the points for and against for applying or not. Oh bother. Time for a cuppa. DD

bubbles

Hi DD

I know how you feel, it is all very stressful. we can both sit it out and wait and see, don't worry, they won't forget us and leave us in peace, more like pieces.

There is so much going on with the changes to PIP, so many problems with the whole system. Even some of the Cons MP's are lobbying the Chancellor to scrap the 1.2 billion of extra savings on the benefit system. It is a while since I was jumping through hoops with the DLA and it took 4 years for them to realise that I was disabled ! I think, in the end, my Consultant rang them, he has never said, but he was fuming and said, leave it to me.

Anyway, my Auntie always said, don't worry about something that has not yet happened, build a bridge and cross the river when you need to.

Take care XXX Bubbles

dreamdaisy

So it's goodbye to IDS and hello to someone I've never heard of. In view of this I have decided to stay in my little boat and keep rowing as best I can. A mess at the top doesn't bode well for us mere disabled mortals far lower down.

Thank you, everyone, for giving me the chance to mull things over, I appreciate all the input I have received. I wish us all well. DD

tkachev

I'd wait for the PIP award. It has a different criteria to DLA and when they assess you they don't look at the previous DLA award so they won't know if you have got any worse.

Its another thing to worry about and you have enough to deal with so I would wait.

Elizabeth x

GraceB

For what it's worth, I too, would wait until you're called in. I've been told by friends that I should be requesting the care element but I'm frightened to "rock the boat" so haven't actioned this. I also now have a multitude of joints severely affected by the OA whereas when my indefinite high rate mobility DLA was awarded I "just" had the right knee chronically affected. (Oh happy days!).

It is worrying though, isn't it? I hope that having had the chance to seek the views of the Forum members, that may have settled your mind a little with this dilemma.

GraceB

Stigger

dreamdaisy wrote:

I am fully aware that none of you can answer this but it's a chance for me to write out my thoughts and therefore - hopefully - clarify them. Some chance!
DD

Hi,
Like you, I've recently had this letter. I was awarded Mobility component of DLA in the 1990's as my leg was never going to grow back. Since then I've had Osteoarthritis and joint replacement, and now I have Palindromic Rheumatism which is very painful and making life difficult.
I don't know what to do either. I've read so many horror stories about PIP and am terrified that if I contact them, I'll lose my car which I cannot live without. My husband does nearly everything for me, (I'm very lucky) but my Motability car is essential as I can't walk to the nearest bus stop. I also worry that if I don't tell them things have got worse, I'll be penalised. It is an awful situation.

dreamdaisy

Please accept my apologies, Stigger, for my delayed answer, I've only just spotted your reply. :oops:

If I recall correctly you have had an amputation, yes? I doubt very much that your car will be taken away but I still reckon it's best not to rock the boat. The new system is still not that clear in how or why it works for some and not others, there is no reason why it should fail you but one has to wonder . . . . I was given indefinite higher rate mobility so the fact that things have worsened won't change that award, I still don't require any personal care so can't claim on that. I think you will be best off to wait and see. DD