Author Topic: Long Covid & Universal Credit  (Read 652 times)

JLR2

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Long Covid & Universal Credit
« on: 08 Apr 2021 08:24AM »
I'm wondering just how folk suffering long Covid will fare should they find themselves unable to work, will the effects of long Covid be recognised as a disability or will the DWP have their assessors deem it as a short term issue and not of such importance as to be accepted as a qualifying health problem for those suffering it to entitle them to disability benefits?   Will today's Atos like assessors be told behind closed doors not to consider the issues around long Covid as relevant to any assessment they carry out on behalf of the DWP?

Sunny Clouds

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Re: Long Covid & Universal Credit
« Reply #1 on: 08 Apr 2021 10:56AM »
It will depend, I think, on how many famous and influential people get it.  I'm not hopeful for people with it benefit-wise, though.

What follows relates to the enmeshing of health/disability issues relating to longhaulers and people with other conditions and how I have a bit of hope that if longhaulers are supported by society, it could hold hope for others, but if they're treated like others, they could get a very rough deal.

Last year I started watching a series of videos on Youtube by a 'longhauler'.  I don't remember his name.  He seems to have set up an online group for longhaulers.

I was very interested in things he was saying, such as an apparent link between getting long covid and pre-existing atopy (allergies, overactive immune system).  I've had postviral fatigue after other conditions when younger, and I had a history of allergies back to childhood. 

It was also interesting over time to see the links being forged with ME/CFS groups.  I began to hope that things might look up for many much-maligned ME sufferers.  Something I've related to them over for a number of years now is that the first time I was acknowledged to have postviral fatigue, described then in terms of having had a 'nasty lurgy', it was treated with sympathy, and the next time, a GP described it as 'yuppie flu' but was still sympathetic.  But when I was in the psychiatric system, it was dismissed as 'retarded depression'.   It's that sense that people with fatigue conditions get seen as malingerers or 'mental' as a way of dismissing them.

But now I'm looking at something else and feeling sad.  Bear with me as I say how it maps on to this in my mind.  It's the new NHS guidance about pain.  Basically, if they can't find a cause for your pain after about three months, it's now seen as being, to use the non-clinical term, all in your head, and the guidance is not to give painkillers.  Nope, give CBT or ACT or antidepressants.

Already some people, especially some women's groups are speaking out.  For some patients, this amounts to saying that if a doctor can't work out why you're in pain after a few months, he can give up trying to find out and stop the painkillers.  I feel angry about that, and I say that as someone who's had arthritis for 40 years but who gave up on painkillers in favour of certain mental techniques.  So my views on this aren't  that mental techniques can't be better than pills for some people, maybe most people for all I know, but that I don't believe that they're best for all. 

I also have a relative who's in hideous chronic pain and they've obviously given up trying to find out why.  My relative doesn't like being on painkillers but doesn't want CBT.  I empathise with that, because CBT is a nebulous treatment, vaguely defined, often implemented by people with limited knowledge of the conditions people have.  I actually trained in CBT as part of a postgrad course years ago and was decidedly unimpressed.  If it's improved since then, a lot of practitioners are stuck in the past with it.

So is this what they'll do with the covid longhaulers?

I'm also interested for personal reasons in theories relating to inflammation/post-infection problems and various psychiatric disorders - there's research going back years and ongoing linking both mood disorders and psychosis with inflammation and infection.  (The drug companies pushed the view that this was rubbish until they ran out of variations on antidepressants and started exploring re-purposing drugs they sell for other conditions...including inflammation.)  Hence my interest with mapping onto issues relating to atopy.

I had so many hopes, and now wonder whether there will be those in the NHS and government that will want to write off longhaulers wherever possible as just needing to take some antidepressants, have a few sessions of CBT, and make more effort, ignoring their post-exertional fatigue, which is deemed to be imaginary.

Who knows, though.  What sort of support our society does or doesn't offer people is often, I believe, as much chance as anything.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

JLR2

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Re: Long Covid & Universal Credit
« Reply #2 on: 08 Apr 2021 11:27AM »
Morning Sunny, I tend to be awfully quick into my conspiracy mode and my conspiracy on the idea of pain being all in the head is that were such a theory to get a foothold with the general public the politicians would use it as a route to government reductions in the costs of prescribed medicines, including pain killers. I saw my local GP (locum) about a pain in my thumbs mainly in my right thumb. She is arranging for the local hospital to contact me to arrange an x-ray of my thumbs and hands. Her initial thought is that I probably have developed arthritis in the joints. I don't know about it being in my head but this morning for example just doing the buttons up on my shirt saw me experiencing the pain I'm talking about in both thumbs. I suppose, being a bit flippant, some of those pushing their theories about pain being in the head might like to try the pain test whereby they hold their hand over a naked flame and tell us they feel no pain as it is only in their head.

What will be the next thing we'll be hearing announced as government policy?   Instructions to GPs, Dr's and nurses to tell those they see about pain issues that all they need do is 'man up' or not to be a silly wee boy/girl?  Will we be hearing, 'look nursy  has kissed it better now off you go and don't come back complaining of a headache unless you're bringing your head in a separate bag'? 

I expect that once we have began to see the pandemic being cleared and folk begin returning to their work places many will quickly revert to accepting government/DWP propaganda that those claiming disability benefits are scroungers costing those working more and more in tax on their earnings. As soon as many begin to see a return to some likeness of normality they will all too easily return to old habits and open to believing just whatever the government tells them and will continue to do this until they themselves are the ones suffering serious health issues. Same auld story I guess.

Sunny Clouds

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Re: Long Covid & Universal Credit
« Reply #3 on: 08 Apr 2021 01:38PM »
I just typed and deleted reams.

I think that if anyone wants to get help with mental or physical distress, dysfunction etc. it helps to be from the right social background, have the right connections, and have the right label.

Oh, and it helps to have a fashionable & well-recognised condition. 

Well, until you come up against the sort of 'nana that asked a benefits claimant when she'd caught her Down's syndrome.  Oh dear.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

JLR2

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Re: Long Covid & Universal Credit
« Reply #4 on: 08 Apr 2021 03:46PM »
Sunny, you reminded me of a wee bit in the Detectives TV series, Jasper Carrot and Robert Powell, they were investigating a murder at a hotel and questioning all the guests staying there. Turning to the honeymooning Mr Smith they asked, "And where were you?"  to which he replies, "making love with my wife"  only to be asked by Powell's character, "Any witnesses?"

Monic1511

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Re: Long Covid & Universal Credit
« Reply #5 on: 08 Apr 2021 07:20PM »
Hi
Anyone with long covid symptoms who is on universal credit will face the same hurdles as those with ME or CFS.  First thing will be they’ll need to get a sickline, then upload it to their journal, then get their claimant commitment changed. They’re then sent a UCESA50 to complete. After their assessment if they pass they’re put in the limited capability for work or limited capability for work related activity groups. Until they’re put in a group they’ll be expected to continue to job search as DWP doesn’t lift that commitment until the medical agreeing you’re unfair for work.

Knowing the amount of ESA folk with CFS/ME who were told they’re fit for work I’d say folk with long covid are in for a hell of a shock, I expect lots of “but I paid my taxes for 20+ years and that’s all you say I’m due”

The thing is with fluctuating conditions DWP expect you to work as you are not unwell all the time - oh really

Sunny Clouds

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Re: Long Covid & Universal Credit
« Reply #6 on: 08 Apr 2021 07:56PM »
It's horrible.

I'm just glad I'm on ESA for now, albeit only contributions-based, plus PIP.  (I've got some savings now thanks to Dad.)

But something that fried my brain over time in relation to benefits claims is that the system just isn't geared up to the notion that your symptoms can vary without your getting better.

So if I vary my meds and less mean more mental problems and more mean more physical problems, computer says 'eek'.

It's what means that people like me (and over the years I've found i'm not alone) reach the point of giving up even doing bits of voluntary work, terrified the DWP will respond with 'change of circumstances, reassess'.  Some would say I'm overreacting and others just sigh wearily and sympathetically.  To me that says a lot about how inflexible the system is.

What would frighten me most about getting hospitalised covid is something we don't seem to see discussed - empty house.  Would it be burgled, flooded or whatever?  And what about paperwork I couldn't see to?  What if my insurance came up for renewal whilst I was plugged into a machine, or whatever? 

What about people off sick after coming home who've come home to all sorts of problems, or even to no home if their landlord has chucked them out?  I remember someone I was friends with, now dead, who, before I met him, had been in a psychiatric unit and whilst he was there his social worker got him to sign a form sent by his housing association, which authorised them to get rid of all his stuff.  All his personal possessions chucked in a skip.  I don't know what the situation is now, but you used to be able to apply for housing benefit even if you were in hospital if it wasn't that you'd gone to hospital to live/die as opposed to treatment and discharge, but no one told him that or helped him to apply.

As for all this online application stuff, it freaks me, and I'm reasonably computer literate and reasonably intelligent.  Thank heavens I don't have to do it yet for my (contributions-based) ESA and my PIP.  But with brain fog?!

I think disability unity will be more important than ever after this.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Monic1511

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Re: Long Covid & Universal Credit
« Reply #7 on: 08 Apr 2021 08:17PM »
If you have housing benefit and are in hospital it can run for 6 months, applying while in hospital now means universal credit unless you currently get SDP and pip.

If you are in hospital and not capable then a person would need to convince the dwp that you did complete the UC claim and with jobcentres reopening in England on Monday then the claimant has to attend an identification meeting or the claim is closed.

UC is a mess and not fir for those with disabilities but that’s not news to us, it will be a terrible shock to anyone new to the benefit system along with their illnesses 
:f_wah:

Sunny Clouds

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Re: Long Covid & Universal Credit
« Reply #8 on: 08 Apr 2021 09:03PM »
I'm so glad I don't need UC.  Nasty, nasty, nasty benefit.  Aargh, how did they con us into adopting the term 'benefit', making social security payments seem like a perk, a gift, something extra to be grateful for?

I hate the way society's been conned into thinking the way to get people into work is to leave them with little or no money for food, stationery, printer ink, internet connection, telephone, laundry, travel costs...i.e. all the necessities to apply for a job, attend an interview for it, and stay alive until they get it.  How many hours can you put into jobhunting whilst you're spending the afternoon queuing at the foodbank? 

A few years back, I advised at a CAB for a while, then I advised online on a benefits site for a while.  I struggled then, but would be too heartbroken now.

I'm just thinking about what was done to Remploy.  You have people that want to work but can't manage what I'll call ordinary or mainstream work, so you set up factories where they can do what they can.  Then you close them and turn them into what are effectively employment agencies of some sort to try to get those people that can't do ordinary work into ordinary work.  Genius.  Not.  Surely the 'subsidy' of the work they did was cheaper than dole?  Surely it was cheaper than society picking up the pieces if they fall apart?

I think the way we'll survive, if we do, long term will be to return to what was there before the modern welfare state, revolving round a mixture of mutual support and philanthropy.  I want rights not charity but that's not how it's seen by the greedy, selfish, nasty wotsits that are so good at gaining power.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Fiz

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Re: Long Covid & Universal Credit
« Reply #9 on: 09 Apr 2021 08:37AM »
I have recently come to terms with the fact that I am unlikely to work again. It's 10 years until I reach retirement age and I hope that I don't have to go through the stress of battles with the DWP in the meantime. No one wants me off benefits and working more than I do myself but my body is sick and not working well and with mental health difficulties too I am not reliable enough. I can't even get downstairs many days so there's a fat chance of getting to work. Stress makes me unwell too as my body doesn't make cortisol the hormone that helps the body deal with stress and knowing that a DWP battle would make me unwell physically is frightening. It doesn't mean that I won't get involved with campaigning and with voluntary projects when and if I am able. I do feel for people with long Covid and the battles for benefits they may face. I suspect that media would rustle up public support though if struggles were made public because the public may view people with long Covid as victims of circumstance and not work shy scroungers like people with disabilities are.

JLR2

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Re: Long Covid & Universal Credit
« Reply #10 on: 09 Apr 2021 09:47AM »
Morning Fiz, I know what you going through so far as being reassessed goes. I have some four years before state pension entitlement kicks in. I fully expect the government to use the benefits system as a route to saving money, well they will need billions for their increased nuclear arsenal. If we thought we saw spurious reasons being given for previous denials of disability benefits to claimants before we are going to be in for a shock when the DWP get into gear after Covid19 is out of the way as they tighten qualifying criteria for entitlement to benefits. Given the in our face level of lying we have seen from this government, lies such as Johnson telling live (on camera)  there will be no sea border between NI and the UK, I doubt this government will be concerned about what is said of it as it introduces new and utterly tests to decide disability entitlements.

Test such as the challenge test, this is where claimants are tested in groups together with 4/5 claimants lined up at one end of a room and made to cross the room with the one first to cross being denied their claim or with in a similar group test the assessor has claimants arranged in a circle and compelled to justify their claim by explaining just why they should get disability benefits as against why someone else in the group shouldn't. All claimants in these groups being told at the outset that only the most deserving, the most disabled will be "awarded" benefits. In other words this government and its version of the DWP would be more than content to see claimants fighting like rats in a sack for the pitiful level of benefits available. I suppose it could be argued governments have being doing something of a similar nature for years where the budgets of various government ministries are concerned, having them fight to secure from the Chancellor as much funding for their department as they can.

Fiz

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Re: Long Covid & Universal Credit
« Reply #11 on: 09 Apr 2021 05:41PM »
I watched Kate Garroway, Finding Derek on ITV player today and it moved me to tears. They interviewed a nurse who had mild Covid but now has long Covid and is unable to work. She's lucky benefits wise should she need to claim them as her heart has been affected and she has an external pace maker and she needs oxygen so has evidence. Many others equally debillitated but without organ failure will be the ones battling for financial survival as well as physical. Kate seems absolutely lovely and Derek has a long journey ahead of him and I hope that he settles in well at home. 

I'm feeling quite vulnerable 8-9 weeks after my first vaccination as they have discovered immunity lowers after the first vaccine and rises significantly after the second and I am feeling so weak at the moment that I wouldn't win a fight with a fly let alone Covid.

KizzyKazaer

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Re: Long Covid & Universal Credit
« Reply #12 on: 09 Apr 2021 09:30PM »
Quote
I suspect that media would rustle up public support though if struggles were made public because the public may view people with long Covid as victims of circumstance and not work shy scroungers like people with disabilities are.
I think you're probably right there, Covid survivors seem to have a different sort of 'status' - probably because the damn coronavirus has been dominating all our lives for over a year now :f_erm:



How the already broken Universal Credit system will cope with the extra claims, I do not know...

ditchdwellers

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Re: Long Covid & Universal Credit
« Reply #13 on: 11 Apr 2021 01:40PM »
I have been so saddened to read the reports regarding prescribing pain killers to chronic pain patients with an unknown source of pain. As someone with Ehlers Danlos Syndrome who remembers their first full dislocation at the age of about seven years old, it took until I was 32 to get a diagnosis. In my childhood I was labelled as clumsy and attention seeking with a low pain threshold. It used to result in me getting told off by my parents, because they had been told by the doctors that there was nothing wrong with me. 

When I was in my mid 20s I was found by a friend collapsed on the floor of the cottage I was renting. She called the ambulance and I spent a fortnight in hospital seeing various doctors but nobody came up with any answers. I eventually discharged myself and the neurologist who was in charge of my care, insisted I could only go if I agreed to see a psychologist as there was nothing physically wrong with me! He then proceeded to write that the cause of my admission had been 'hysterical breakdown' . Of course, I later learned that my body, physically couldn't continue with the pace I was putting it through. I had been trying to do things beyond my physical capabilities however I didn't know any better at the time and just thought I was being a pathetic weakling. A hangover from my childhood and pushing through the excruciating pain. I should have stopped before the point of collapse but I've always been a stubborn old cow!

The first session with the psychologist was fascinating. He told me that the only issue I may have was slight stress, but he said he was basing that on the fact that I was female, was a high achiever, worked in academia, and my age, rather than anything I said! He said there probably wasn't any need for further sessions but would be happy to continue with some stress busting ideas. I went for two further sessions and have implemented the techniques over a number of years and found them useful. Still no diagnosis though. 

A diagnosis didn't happen until I needed some extra money and I used to clean a local Drs surgery after closing. It was a solo practice and the doctor was very old school and lovely. I used to cycle there from, a few miles from home, and in the summer I wore shorts. One evening, the doctor saw me getting into an awkward position dusting under his couch, which I did every evening. I explained that I couldn't kneel down as my kneecap's would dislocate, and he just said 'you realise that's not normal, don't you?' I was gobsmacked! Next thing I know he's asked me to stand up, is appalled by the swelling in my left knee, and asks me to register as one of his patients so he can start treating me. He referred me to the right people as soon as he could and it was only then that I got a diagnosis. 

What frightens me about the NICE guidelines, is that this lovely doctor saw past the 'hysterical ' discharge diagnosis and treated my symptoms as he found them. Most importantly he listened to me. And as my experience shows,the path to diagnosis is often lengthy and complex, particularly for those with rare or unusual conditions. 

Sorry this turned into such a word splurge. It just sort of came out that way!

Fiz

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Re: Long Covid & Universal Credit
« Reply #14 on: 12 Apr 2021 02:27AM »
It always saddens me when Psych labels are the go to for many physical or traumatic events. And having been given the labels they follow you even if they've been found to be incorrect.