How honest to be ? ?

kayla99

How honest to be ? ?

Sorry that this is a long post, but please take the time to read and offer advice, and thank you in anticipation

My husband is waiting for a DLA Tribunal, after a total sham of an ATOS assessment!

There are no advisors in our area able to represent us, we can’t afford legal advice so I will be representing my husband.

My husband has irreversible damage to 2 discs in his back, which causes pain/numbness and muscle spasms in his back and legs, which is aggravated my walking. We have read NICE Guidelines and pushed for replacement discs but have been told by the Consultant that this is not feasible.

When my husband initially has his accident (fell from a height) he used most of his compensation to pay for a private operation, which was unsuccessful, he has since had further unsuccessful major surgery on the NHS (Fusion & Decompression).

He now has spinal epidurals every 4 months which slightly reduce the pain but do not alleviate it, his main regular medications are ( he does have other medications due to a past heart attack, but these are the main analgesics, I have included example conversions to show the equivalent amount of morphine);
- Transtec patches 35mg (equivalent of approx. 60mg oral morphine in 24 hours)
- Oxycodone 20mg bd (Oral Oxycodone 1.5 x stronger than Oral Morphine e.g.Oral Oxycodone 5 mg = Oral Morphine 7.5 mg)
- 5mg when required (Takes 4 a day)
- Pregabalin 300mg bd
- Amitriptyline 100mg at night
- Venlafaxine 150mg

What I am about to say I can say on here as we are anonymous, but this is how our lives are affected, and this is when I wonder how honest to be……… “Confusion and delusions are a noted side effect of opioids”, often at night my husband does hallucinate i.e.
- He will shout out, “believe the stars are coming to get him” and get very agitated, he will point to the stars and shout they are coming
- He also appears to suffer delusions; here is one recent example. . . . We were on holiday last week and my husband needed the toilet during the night. . He then managed to hobble onto the decking outside the caravan and tried to stack the chairs up whilst naked!! He said he needed to find the chain!!!!!!!!!!!!!!!!!!!!! (Like I said anonymous, I would be laughing if I was you!). He woke up in the morning in intense pain hardly able to move!
- I hide the car keys at night as previously I have found him trying to find the keys!
- He also falls, I have found him on the floor many a time unable to get back up

This to me says that he needs supervision, especially at night, but these are not things you want to sit there and tell other people. Every night I have to make sure he gets to bed, I’m 39 and he is 52! I am a mental health nurse, when I met my husband he was a DJ and a Sound and Light Engineer, his weekly wage was more than my monthly wage, do you think we want to claim benefits in comparison to what we had, but sadly we have no choice.

We do not have any sexual relationship anymore and have not had for 18 months+, it’s just not possible, and this also causes him depression. My husband doesn’t understand why I stay with him, he gets paranoid, which can lead to agitation especially if he is at home all day with nothing to do when I am at work, I stay with him because I love him, but it is not the life I would have chosen! Sadly I no longer go out socialising, if I do, it reinforces to my husband the things that he is not able to do, he can’t mobilize far, he can’t sit in a cinema as he can’t sit down for long and if he drinks alcohol his hallucinations intensify (yet alcoholics get DLA)!

It’s not all bad though, we have a fab GP. When we were away last week, we went to Disneyland Paris and thanks to our GP we were loaned a mobility scooter to take with us, without this we couldn’t have gone and our daughter loved it!

Where do we go from here ?

wouldbeqaulitymoneysaver

If you say to them what you said to us and get some serious Welfare Rights wellies on your side, and amass all the evidence you need you will get somewhere.
ALWAYS photocopy your forms, you cannot be too careful.
Get GP on side, any Support Workers or care Assistants on side.
I would personally become an member of Benefits and Work where they show you how to fill in the forms and you see what works on a form and what doesn't in a legal way.
Evidently holidays make you able to work!!!("!!!!!!!!!!!!!!!!!!!).
Best of luck.x

wouldbeqaulitymoneysaver

You need to know these things. The DWP is not necessarily to be trusted when it comes to Welfare Rights Advice because they are very agenda driven ie cuts, get people off benefits regardless of disability.
Independence is the way to go.
The more you know of your Rights the better. You cannot afford not to be too well informed.
Society Guardian shows you stories of what is REALLY going on in Disability, Benefits etc so you get the truth and not some spin on the Right Wing BBC. A few thoughts from moi.

GlasweJen

With DLA the best policy is always honesty. The decision maker doesn't know you, you're just as anonymous as they are so don't hold back on the truth.

As an aside, have you considered getting a scooter to use more often? You can often pick them up 2nd hand.

margaretclare

Can't add anything to the excellent advice you've already been given, but I just wanted to say how sorry I feel for you and your husband.

My DH had spinal fusion and decompression in May this year. Discs had prolapsed inwards and were pressing on his spinal cord. Pain was only one part of the problem, the main risk was of paralysis. The surgery that he had was successful in that the pain was greatly reduced, but never gone completely. It was a one-off though, his surgeon told him it can never be repeated. DH was just pleased to leave hospital on two legs and not in a wheelchair, although he'll never be very mobile again, not only the spine but the left knee (replaced 4 times inside 6 years) sees to that.

Your DH is taking a massive amount of morphine-like substances and, as a MHN you know the effects of these. Just write it all down clearly and simply, as you've done here. You don't need to exaggerate. The facts, as you've stated them, speak for themselves. I am so sorry.

zaksmum

Just be honest. With the problems faced by your poor husband, you certainly don't need to exaggerate or hide anything!

sunnyone

Have you spoken to your husbands pain specialist about his meds sides?

I take over three times more morphine per day without any of the sides your husband has, I did have sides with previous meds but we just changed them and the sides stopped.

Honesty is the best policy as others have already said, if you exagerate you will end up with nowt because they are not stupid and they can see through the lies, I have attended a tribunal similar to your husbands care case where we were claiming the claimant needed supervision due to bi polar type symptoms yet she didnt have bi polar and it was a very difficult task to persuade the three tribunal members that she needed full time supervision 24/9.

The tribunal was very diffrent from the published criteria, they would only consider the care she but you dont have to be recieving it "you must need the care but you dont have to be getting it", we told the truth and got an award. If I had been involved from the begining things would have been easier but she did the forms alone and the tribunal used the forms against her, they used the information given on the form to refute her arguments for high rate care/low mobility.

Go over the form and reaquaint yourself with what was written on them and use that alongside the regection letter to formulate your appeal, have you asked for evidence of his condition at the time of the claim to back up his case?

The evidence can come from anyone involved in his care, OT's, therapist's, physio's etc. can provide it and it will really help his case but they must be relevent to the thime he applied for DLA and not at the time of your appeal.