I need a Rant

I am so sorry to read your post - a very anxious and stressful time for sure.

We have been through the PIPS procedure for our disabled son, who was receiving DLA prior to that. I found it easier to complete than the DLA forms. One thing to keep in mind, which we did upon advice, was to think of your DH on his worst days when completing the form.

Although we haven't used them ourselves, my late MIL did and she found them very helpful indeed - AGE UK - here's a link

www.ageuk.org.uk/

They are extremely good about giving advice, and can help to complete forms (in our experience) so perhaps it might be worth getting in contact with them.

I can understand that you're feeling stressed - no wonder! But what can be done to alleviate it, even for a short time? Well, I have learned some 'mindfulness' techniques. I switch off, go for walk, sit in the garden, look out of the window etc and noticing what's around you - the green of the grass, following a raindrop down the window, listening to birds, listen to your own breathing, watching the season change. Even a few minutes is enough to rest the mind. It's important for you to have 'me time' - however short that may be. It takes a little practice, but once you get into the habit you may find that it helps to get you through.

I've recently found a magazine called 'Breathe' - fantastic! A sort of 'well being' magazine. You can get it in some supermarkets like TESCO, or you can buy online. Here's another link www.breathemagazine.co.uk/

It's good to rant - get it out! We don't mind. Take care sweetie. xx

So sorry to hear about your problems - I think anyone who has experienced form filling and assessments knows just how frustrating and distressing it can be. I know someone who had her DLA stopped simply because she got the appointment date mixed up - she is severely disabled ( cerebral palsy from birth) but has managed to remain independent all her life until now The way she has been treated is appalling as is the way all those who genuinely need the help! I really hope the suggestions from others above help you fight this injustice.

Its good to have a rant.Keeping it bottled up is not good for you health wise .
I live alone so at least I spare anyone else my ranting days
Its usually what comes in the post that starts me off.

This is
awful. There has been some good advice in other posts, so I hope you might find some positive support .
My very best wishes to you both.?

Please go to the Doctor, CAB and your MP Don`t keep quiet about it, or you will get nowhere. Make as much fuss as possible. Best of luck.

Hopehope I am so sorry for your position & yes a rant does help. I had been on DLA since 2011, was on Incapacity Benefit now ESA. I attended my Interview April 2016 (form submitted in February 2016). I was granted PIP for care (just scraped in on 8 points) to be reviewed again next year, I reach State Retirement in 2021. I found the whole process relatively painless & the bonus for me is that as no-one claims Carer's Allowance I also get an extra payment on my ESA.

I have been through the whole refusal of Benefit, refusal of Appeal & gone to Tribunal for Incapacity Benefit. The Atos Medical was a joke as person conducting it didn't address any of my Health issues.The Tribunal however although it was stressful was a different matter & I was awarded sufficient points for my claim to be accepted, I was also described as "a very honest witness".

My DiL has also recently had her PIP assessment & been granted care & mobility higher rate components, so yes PIP is being given.

Please accept some of the advice given & I wish you all the best

Hopehope Unbelievable! I congratulate you on not already having gone over the edge! The world seems to have gone mad. In my time I've done my fair share of filling in endless bits of paperwork, knowing full well that it would never be looked at, but it was a requirement of the job. I hope you made a note of the manager's name. I would be taking it further. Maybe your MP, especially if sitting on the government benches, would like to know what it is like for those people living with the results of their decisions. Nothing helpful to say other than I can fully understand why you're on the edge. Hugs.

Feel free to rant Hopehope My thoughts are with you and your husband. I hope it all gets sorted for you soon

Could you not invoke the help of your MP again? Just cut and paste your GN rant into a letter if you can't bear to go through it all once more.
Many years ago I worked for the DHSS, as was, and I know that whenever we received a letter from an MP in support of a constituent we all jumped into action.

It is a dreadful system. I have an illness sarcoid which nobody has heard of least of all the people who do the assessment so I have to go through loafs of paperwork and it got as far as a tribunal which we won but they never say you will have this money till your pension as I am only 60 and I don't get heating allowance or bus pass this money is needed. The stress sets off my illness which is worse so good luck I am thinking of you they forget our husbands go through it to

Oh, what a pain this is - I don't know of anyone who has ever got PIP and no-one wants to be disabled. I never got mobility DLA, but did get the care component, which I was refused on transfer to PIP (reassessment letter sent two weeks before my 68th birthday), I was lucky that I immediately claimed AA, which was a formality. DH, aged 59, severely disabled for about 20 years and more or less completely bedbound had to fight for his indefinite DLA which the Tribunal couldn't believe had been disallowed and confirmed instantly. We're expecting them to demand that he goes for PIP reassessment in about 10 years, just as he approaches pension age, which of course will be disallowed and we will have to jump through hoops yet again! DS, Aspergers, Chronic Depression, Asthmatic and having had major surgery on foot, which is never going to improve any further, although he can now walk a few yards with a lot a pain, recently had assessment interview (we had to attend an appointment which involved leaving home at 7.00 to go to a hospital about 15 miles away and having to walk a mile from the main entrance to find the disability centre! He spent the next 2 days in severe pain, unable to do anything and we had to prevent him taking a fatal dose of painkillers, feeling a total failure. We know that he will be turned down automatically, as this government has decided to refuse all PIP claims, and we will have no option but to fight on his behalf as well. As the healthiest member of the family, it all falls on my shoulders and I get so tired of it all. I do wish you both well, but would advise you if he is turned down, to apply for AA - at 65+ he won't get any mobility help, but should get £82 weekly, which is better than nothing.

pleased to read your rant very healthy well done
went thru a similar scene with/for my brother was successful
do fine indulgences

As well as going to CAB and AgeUK as others have suggested write to your MP, it's a ridiculous system and if people complain enough,you never know things might change. Good luck.

It's so awful that you have had to go through such an awful time and with seeing your DH going through it as well.
I would suggest that you go to your local CAB to see if they can give you some advice as to what can be done and to confirm that in fact any payments will be backdated.
I really do hope that this gets sorted. In the meantime I think that you should go to the Doctors to discuss how YOU are feeling. Also get Social Services involved just so that you can get some help and maybe respite from all the stress.
Take care

Hi hope hope
I am so sorry to hear of your situation. Wish I could help. Thinking of you and your DH. Hope it all gets sorted soon. Take care. Su66 x

My mum went through something similar and was very stressed out by it, as was I. What that manager said to you, I think, is pretty much what happens. On the days that my mum attended her appointments, the assessor told her that she'd have noting to worry about, as he could see that she was very poorly.

Good luck to you and hope you are ok this morning.

I am truly sorry to hear of the struggles that you endure and the pain of trying to comply with a Government organisation. I am totally against the outsourcing of services - Government departments use commercial businesses to operate their systems. It doesn't work. A business contract is a black & white affair with no room for shades of grey. By that I mean that in order for these businesses to comply with the contract and the service level agreement they cannot deviate. Ridiculous situation. Outsourcing business to business works - however it doesn't work where common sense and human compassion come into play. The employees have to stick to a rigid formal format. Frankly the Government Executives that set out the system - do not know what is involved and then hand the dysfunctional system to an external party that has even less of a clue! It ruins peoples lives

Please talk to Age UK or CAB if you haven't already get someone to help you. It is a disgusting system and the government ought to be ashamed of itself...........but isn't of course.

There are free advocacy services out there and you will get treated better if the powers that be are faced with an advocate who can be your witness and who knows the ropes.

I despair of the way people are bing treated.

Bureaucracy can be a nightmare, so my sympathies to you in this situation Hope hope it is all sorted out to your satisfaction.?

So sorry to hear of all the pressure you and your husband are being put through Hopehope.

It is disgraceful that people already experiencing the anxiety and distress of coping with a serious illness are being subjected to this.

Hopehope noticing what time you wrote your post and just wanting to add sympathy and support though that probably doesn't help much. I've heard similar stories to yours first hand and read of more. It is despicable how your husband and yourself are being treated. Kafkaesque some would say, a crazy bureaucratic system designed to be incomprehensible, intended to cover up the real agenda which is to attack and take resources from those most in need. The people who administrate the system ought to be ashamed of themselves but of course 'they're just doing their job'.

I remember a friend's daughter who had been forced onto a job seeking course related to JSA speaking about a man within 3 months of drawing his pension still being expected to complete the course that required him to complete cvs and apply for unlikely jobs miles away from his home. The course was going to finish after his pension date!!

The only practical suggestion I can make is to try and award yourself some time that gives you a break, even if tiny. When I was under a lot of stress some years ago I decided that I was going to give myself a once a month massage. You may not be able to afford that but I did it on the basis that I wasn't getting anything else, I didn't smoke or go clothes shopping, it was time for me and it was really helpful. If you like that sort of thing, there are sometimes free or reduced price options if you look around. Or whatever floats your boat and I know it's easier imagined than done.

This will pass but it's horrible going through it. Glad you found somewhere to vent. Good luck. ?

Marydoll I absolutely agree with your feelings at seeing the facts of your illness in black and white. We all know inside when something is incurable, but my way of dealing with it is to cross bridges when we come to them. Seeing it written out including the phrase "for which the only cure would be a second transplant and for which Mr Broon would not be eligible" brought it home with a bang.
I swear the stress of that period put DH back in hospital. I hope CAB can help or AGEUK.

Why oh why do things have to "go by the book"?
Is there no room for a bit of commonsense? And also efficiency. How can things take 10 months to be sorted? The implication is that millions are applying for assessment. If this is true the country is in far more trouble than I at least realised.
About 4 years ago a man we knew had cancer and after surgery the fist sized hole in his back would not heal. He had a pump sucking out "gunk" fitted. He was asked to attend an assessmemt to declare him fit to work as his cancer was in remission.
He had to have the wound and pump attended to at least weekly. Who would have given him a job in those circumstances?

I am sorry to hear how awful things are for you. I personally was in a similar position. However, my consultant was very supportive and wrote a very long letter to support all the paperwork, when she saw how badly this stress was affecting my conditions. This helped enormously. I have to say, that after the letter was sent, I found that I was treated very well.
Though , I did find reading the contents very upsetting, when I read the words, " progressive" and "prognosis poor", as I hadn't accepted how very unwell I was. Do these pen pushers not realise how the added stress acerbates people's health problems and those of their carers?
It is shocking, what has happened to you.
Take care and I hope things get better for you soon.
It is OK to "rant" here. I wish I had had somewhere to get things off my chest. It is a very personal situation, and I didn't want anyone to know my business. Pity I wasn't on Gransnet then.

Hopehope this is all so stressful for you on top of your husband's illness. Ten months is far too long to wait for assessment, so much can change in that time. There has been some advice on here which I hope will help you.
It's good to let off steam and I sympathize with you