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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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I've been given an indefinite award for dla But it's changing to pip and the sods have decided to send out this doddery old dr who isn't a rheumatologist to once again assess me. I'm a wheelchair user with hoists etc but I'm wetting myself about this, I just hate all this. They treat you like a thief before you start. I'm shaking. Physically shaking, how rediculous is that. how to be a velvet bulldoser
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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The dr is coming to my house. Has anyone just had a random dr come and do this? What do they do? how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 8/30/2010 Posts: 507 Location: Gravesend
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Hi Jenni .... I can't answer that i am afraid , adn it may be a good thing that they are coming now rather than another time , just be yourself , say what is on your mind and above all remember that an adverse decision iis appealable. Best option is to have someone there . I am just off eligibility for DLA , i think , but by any standards after reading your issues i think there will not be an issue with your entitlemnt However , i am going through Incap Benefit to ESA and i am worried because i know what a hard slog it can be ... and i have been taken off Hydroxy due to eye dammage. A lot of MP's are getting a lot of queries from constituents at the moment with regard assesments for both DLA and ESA , just wondered if it might be an option to have your MP sit in on your medical. There is no requirement for him to say who he is or for you to say. You are allowed a friend(s). Mine is a Tory and he has so many issues from constituents that he wishes to find out first hand (err ok well he wants to see the process) You might have noticed that there has been a rise in opinion that perhaps this is all wrong with reard assesments , well the more MP's that are constituency biased rather than Parliament biased , the better ... after all wasn't that why you voted for them in any case? sorry to be of no real practical help , a medical is a requirement .. however you can stack the odds by doing the above :) Hugs Rich :) "The difference between 'involvement' and 'commitment' is like an eggs-and-ham breakfast: the chicken was 'involved' - the pig was 'committed'."
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Jenny, I'm so sorry you have to deal with this added stress. I would certainly be feeling the same, especially as you say he is not versed in rheumatology. However I'm sure Rich is correct that this will all pass without event. You are in a wheelchair and need hoisting for goodness sake. I feel really angry on your behalf. The GPs should really have some input here, or the consultants. In cases of severe disability like yours there should be a box for the GP to check to say that there is no question of you being able to work. OK, fine, for the less severe cases a home visit might be justified but in your case NO! What a bloomin waste of tax payers money to pay this guy to assess you when the outcome is so obvious. Please try not to worry. I know it's easy to say. Definitely have someone there with you. It will help you to feel less nervous and will keep this guy on his tees a bit if he needs it. I'm really hoping that this happens quickly so you don't have too much stress. Naomi, xxxxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Naomi, thank you for your kind support and taking the time to post. It's not right, i think, to treat people like they're stealing when they are in fact sick. I'm anxious about this and you're right- I'm sure it will be a tick box exercise but its just horrid facing it. In honesty I've got a course on the day that I've got to cancel. It's about chronic pain management but I daren't say that I'm meant to be out...How rediculous I'm not brave enough to postpone the assessment! These things make me tremble. Horrid to put people through this. Thanks again I really appreciate the kind posts how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
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Catching up with posts. Jenni, how awful for you to experience a home visit by someone that doesn't understand rheumatology in depth. Wished I can be there and grill him on his knowledge........cheeky people. Please don't worry  , I like Rich suggestion of having an MP - see from their eyes the tape and tripe that goes on. Good luck. Jane Xxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 312
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Dear Jenni, Please try not to worry too much. I am wishing you a really good outcome for your assessment. Lots of positive thoughts, Fiona 
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 242
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Hi Jenni
Anyone with a severe disability should not have to go through this awful stress....
Jenni you will be fine, you have a genuine, disabling, progressive disease that causes you chronic pain, just give plenty of detail how the illness affects you physically ad mentally and what level of care you need on a daily basis. If you are using hoists and a wheelchair you should have no problem receiving the higher levels of PIP.
Take care
Love
Rebecca
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Oh Jenni don't worry about this. They obviously recognise the fact that your condition is serious and that's why someone is coming to visit you. You said he is an old man, well he will have lots of experience and common sense. I really do think that this is a tick box exercise beings that everyone now has to be seen.
There really should like Noami said something in place for a GP or consultant to put their views before an individual is assessed. After all they know the patient far better that any assessor would. This will then stop needles appointments like yours and save lots of money that then could be put too much better use. But, the powers that be (who we assume are highly educated) obviously have not got the sense to realise this like us folk have.
Love Paula x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Oh Jenni don't worry about this. They obviously recognise the fact that your condition is serious and that's why someone is coming to visit you. You said he is an old man, well he will have lots of experience and common sense. I really do think that this is a tick box exercise beings that everyone now has to be seen.
There really should like Noami said something in place for a GP or consultant to put their views before an individual is assessed. After all they know the patient far better that any assessor would. This will then stop needles appointments like yours and save lots of money that then could be put too much better use. But, the powers that be (who we assume are highly educated) obviously have not got the sense to realise this like us folk have.
Love Paula x
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Rank: Advanced Member  Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hi Jenni - I've just caught up with your thread and my heart goes out to you. You're always so strong mentally and have an amazing attitude to your disability - it feels so wrong to put you through extra stress. Good luck and I echo the others - try not to worry - you are perfectly entitled to support and you have no need to feel guilty. As I said on Fiona's post - try and see it from the other angle that at least you are being seen as a real person face-to-face, and they have obviously already recorded that you are in wheelchair - hence the home visit. Hopefully it will be a formality. It is probably as much about seeing how you have had to adapt your home and daily life to cope with your disability more than the illness itself. Make sure you show off the hoist - that in itself illustrates how expensive and time consuming a disability can be - getting out of bed is something that most people take for granted and never even think about! I really, really like Rich's idea of inviting your MP to come along and see first hand what these new changes put people through. There is nothing like seeing things for real to get a good understanding and our MPs need to see life as we live it, if they are truly going to represent our views. Perhaps if s/he cannot make the date of the assessment, that could provide good reason to put it off to a more convenient date (ie one that doesn't clash with your course - which sounds fascinating by the way!) I've started a course one day a week in counselling - just an intro at this stage - it's fascinating! I would never have seen myself as a counsellor in the past - far too pushy and loud - but having RA has made me step back as a person and be more reflective. I'm much better at listening (although I probably still talk too much - hahha!!) - this forum is a good example of how powerful and effective it can be simply to share one's feelings and know that somebody is really listening to you. All best wishes Jenni - love and hugs - Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Good morning all I just wanted to update you that actually the assessor came and it did go well Our mp is currently unavailable (local election- Chris huhne mr speedy and all that!) But his office have kindly offered to write in support if there is a problem But The dr came He's able to see me in the hoist and into my chair. We've had a new sling delivered and thought it was a good thing to give it a go and so he can see things like my challenges in rolling over He's gone through my prescription list And I got the last discharge from hospital letter out too (Well, Richard did but you get the idea) The dr explained he's going to explain my complex immune disorder and resulting disablity in words the civil servant ticking boxes can understand My dad came and took little miss pickles off to school I was worried the dr would look at My hands and toes and because of splints they are quite straight as ra affected hands look There's drift and a few knuckles look like the 10 horned beast of the apolocolpse But I can tap my iPad And I can hobble about 6-8 steps with my rolator I was nervous but the dr explained he's as sure as he can be that the indefinite award should continue Tbh, the 'customer' (do you wince at that term or is it just me?) with lifetime/indefinite award people in the last 10 yrs faced much higher thresholds apparently But the dr says when you get to this level it's clear Dr also realised automatically that I'd struggle to inject myself with insulin and the tablet packs Are needing help He was good at realising the diabetes is likely to be to do with steroids so that was impressive I got into such a tizzy If I loose my car- I'd be stuffed! It's got a super doopa tail lift and is great with the six way seat But we won't know officially for a while But think the dr bit went as well as it could have :) how to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 2/14/2011 Posts: 301 Location: South Hampshire
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So pleased that bit went well. That is such a relief. I guess its now wait and see.
I'm still waiting to hear about incapacity benefit.... I sent all the forms back on time but haven't heard anything yet!
lot of love
Anne xxx
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Rank: Advanced Member  Groups: Registered
Joined: 1/29/2010 Posts: 264
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Sounds like it went really well and that the Dr had some understanding and he must be certain if he hinted to you that its going to be okay , they don't usually give naything away unless they are certain. However the whole thing is crazy and causes such anxiety. So glad you feel a little better about it. Best wishes
Sheila
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Rank: Advanced Member Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Jenny, that's reassuring for others who have to go through this. xxx
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Rank: Advanced Member Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hi Jenni - wow what a relief! I know you were so worried about this but it's gone better than expected - you can relax now. As Sheila said, I'm sure the Dr wouldn't have hinted at anything unless he was certain, so put it behind you and take time to be extra kind to yourself so that you can get over the stress. I am so glad that you look after your hands and use splints Is little Miss pickles on half term now - let's hope the weather is kind and you can get out and about in your souper dooper car! Much love and hugs - Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member  Groups: Registered
Joined: 12/6/2009 Posts: 177
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Hi Jenni I'm so glad it turned out okay for you. These people don't realise how stressful these assessments are. I'm in a similar position. After receiving DLA for over 3 years with high rate for mobility and middles for care. I have been told i don't qualify for anything now!! I have appealed and just received all the papers and now awaiting date for the tribunal. My car is being collected tomorrow as i had it with the mobility scheme so now i can't get to the doctors or anywhere, i will be housebound.  I can only walk 5/6 metres and go in the wheelchair a lot. My daughter is my carer and now she isn't getting any money from the allowance she can't afford the petrol to come over to help me so i will also be dirty and have to rely on snacks in the daytime. I think the DWP think we are all liers and i don't understand how they can say we don't need help when we have letters from the rheumatology clinic and a long list of drugs (i have 14). My doctor actually said that they should take one look at my prescription and know i need help as i wouldn't take all these drugs for fun! I also have depression and SVT (a fast heart beat) I'm so glad things have worked out for you Jenni as you have so many problems. Love Shirley
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Rank: Advanced Member Groups: Registered
Joined: 1/29/2010 Posts: 264
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Shirley, your predicament is just so terrrible, couldn't they at least leave you with the allowance and car until after the apeal has gone through, I'm sure you'll get it back and they should also be made to pay compensation for making your life so very impossible. I really really hope your apeal is upheld.
Best wishes
Sheila
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Rank: Advanced Member Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hi Shirley - so sorry to hear about the car and all the other stuff. Good luck with the appeal Best wishes - Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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