Session Topics:

– National Strategy for Disabled People, the current Covid pandemic and the post-covid recovery
Long term commitment and ideas

Notes from our discussions with attendees.

“want to talk about two letters I have received this week from the DWP. The dreaded brown envelopes. The first one was to tell me I’ve had an increase in my PIP – £0.67. The second one was to tell me I’ve had an increase in my ESA – almost the same amount. So that’s my increase, that’s my income.  

I support people locally going through the PIP and ESA assessments because I have to. When I moved from lifetime DLA to PIP it took me days to fill out the form because it was so distressing having to write down all the things I can’t so, all the things I need help with, all the things that somebody else has to do for me because of the nature of my disability.  

My two main disabilities are life-limiting. But they know that, yet I did my assessment and they decided that I wasn’t quite as disabled as I used to be, and they reduced the amount I was receiving. I had to appeal, and then I had to go to tribunal, and they changed their minds three days before the tribunal and decided that I was right and they were wrong.  

And then in the following three years, they reassessed me every single year. My last assessment, PIP, it happened at home, and I ended up saying to my assessor “I don’t expect I’ll see you again, because your Minister has said people with lifelong conditions can do light touch assessment, and I’ll probably be dead in ten years” – I don’t care, will be, probably, but it doesn’t matter – “so don’t come and see me again”. And finally, I’ve been given an indefinite award.   

But the people I support, I have to support them because they don’t have the capacity to do it themselves. I support people with learning disabilities, I support really vulnerable people going through the PIP process and I’ve ended up in tribunal after tribunal because the DWP are – words fail me at describing them effectively. It’s as if the money’s coming out of their own pockets. When I used to work, I used to pay more in tax than I received in benefits and now that I can’t work the amount I receive is just about enough to manage.  

And the other thing I wanted to say is the complexity of the forms. They are far too difficult for people to fill in on their own without support. I’m an intelligent woman and I struggled. The people I support haven’t got a cat in hell’s chance and the way they are treated is just appalling.” 

I echo the above comments. I help disabled people as well, me and Vicky know each other fairly well in the context of the support that I’ve given to disabled people over the last decade. I set up a project regarding Universal Credit to try and educate people in how the system works so they would have a better understanding of how and what was required of them, so they could get it right first time.  

Incompetent is the word that we need to use for the DWP because they are utterly incompetent in administrating this benefit, punitive, and after a long time of unfortunately being disabled through an operation, they decided they were going to switch me over to PIP. Again I felt miserable, even though I’m very apt at filling in forms and everything else, they still decided to do a whole assessment. She came in, she made reference to my eyesight and I said to her straightaway, I said “I know what you’re doing, you’re coming in on the eyesight, purely on the basis that you can take my car off me. This is a temporary issue.” And because it had been repaired, and I was just waiting for the blood clear out of my eye so I could see again properly. And since then I’ve had my other eye done as well, so I’ve got my vision back. And it was a complete and utter nightmare.  

I applied to the MR, that was knocked out the ballpark straight away. Within a week I had a letter back saying this is the final decision. Thankfully, due to my disability campaigning and understanding of the process, I managed to put through my tribunal based on case law and stuff like that, I went through all the case law and I just sent it off to them. I even got Guy Opperman to reopen the MR because I felt it was done wrongly. And I’d had help to fill my form in obviously because I couldn’t see. And I won at tribunal.  

And then I find out, that because I won at tribunal the Minister’s now announced that people who won at tribunal are not going to get assessed…[recording unclear]…because they don’t have enough assessors. Well I’m sorry, but that isn’t my problem. It’s their problem. Those awards should be extended until they have got enough staff.  

The staff that they do have, they need retraining completely and it should be disability-led actually, because it’s the only way that these people will understand, because you’d think that you were robbing their purse, their individual purse. And I can’t get any social care because I’m not in a high enough category, you’ve got to be on urgent need, which is death or nearly dying, to get anything and I’m lucky enough now to have my son up there, but it’s really difficult for people.  

I’ve had people threatening to commit suicide. I’ve got one lady, actually who’s in Vicky’s neck of the woods, who can’t get any access to any form of welfare help. She’s exhausted all my resources to point her in the right direction, and it’s really draining. And then when you get the condescending remarks from Ministers in the House of Commons and in the House of Lords where we’re seen as scroungers and have been portrayed as…well, the label is ‘criminals’ really because we’re out to defraud the system and that just couldn’t be further from the truth. We’ve got to start learning to recognise that unfortunately in life, it can come up and bite you on the bottom.  

I’ve got a condition which can’t even be cured and they still insist on reassessing me every three years. As Vicky’s said, you know, it costs them more to send a letter out to tell you you’ve got £0.37 than it does for the £0.86 stamp. And then there’s the issue of letters going missing or don’t arrive and people’s benefits are cut off, and the system is just not fit for purpose. Everybody accepts that there has to be an assessment process, but it should be based on clinical need, not on what the Government’s pot of money is saying that we need. It’s like me telling someone else who to do their job. I wouldn’t even dream of it, because they’re the experts in their field at that time. And they’re telling me how to live my life as a disabled person, or limiting that capacity to live that life.  

As for the pandemic, actually it’s been a breath of fresh air for me. Zoom has been ace, because I’ve been able to be actively more engaged and attend more things because I don’t have to drive half way across the North East to attend. And I’ve still not had my covid jabs, so I’ve been shielding since March. I haven’t been outside the house. Getting shopping was a nightmare, because as we’re all aware, people went out in a mad panic as if World War III were coming and just stripped the shelves of everything. Unfortunately I think the biggest problem we’ve got is individualism. It’s all about the self and “what I can get for me” and sod everybody else. It’s that kind of attitude that we need to challenge.  

I don’t know where we go with it because frankly the WCA is a flawed system anyway. It was based on bogus…the assessment process was based on behavioural stuff which has been already academically classed as bogus, it doesn’t work. The i-act programme – for people with mental health – it doesn’t fit everybody. If you’ve got mild depression it might support you and help you, by looking at things a little differently to be able to help you manage your daily life. It’s not going to help somebody with schizophrenia or borderline personality. And unfortunately, the deaths in mental health are just alarming. That’s why they won’t print any more, because I have asked. I sent in an FoI but it’s been denied. That has been purely because they don’t want the truth to get out, because the general public would have a real change of mind if those numbers come out.  

But secondly, it is now biting those, unfortunately, that have never come across the benefits system ever before, pre-pandemic. And hopefully when furlough ends, and I don’t want anybody to think that I’m down on the workers because I’m not, maybe that will be the trigger that will change some of the attitudes towards people who are claimants, because for so long, they’re the very same people who have voted for the welfare cuts, who are now finding themselves on the opposite side of the table. And of course you’ve got job losses and everything else that has been caused by the pandemic.  

I could go on all day, but I won’t occupy any more time because there are other people who might want to speak, but the fact of the matter is we really do need to address it and I have sent you four questions, Vicky, which I would like you to answer. The rape clause – whoever thought that up? What a vile, horrible policy. People are really struggling, and the food banks, my own food bank – which I helped set up with a…[recording unclear]…is struggling to get food in, enough to feed the people that need it, and it’s all become normalised, for want of a better word, and that shouldn’t be the case. It should be an absolute abhorrent process, because nobody in this country should be without a roof, without food in their belly, and they need enough money to live on.  

And unfortunately prices have gone up. I’ve found my personal costs during the pandemic, because I had to rely on other people to help me, and obviously in some cases I’ve had to pay for it, that leaves me short again, and I’m just about managing as it is. And 16 months to wait for a tribunal. Vicky, it nearly broke me. Seriously, even though I was determined I wasn’t going to rollover, I hadn’t got enough money, and if it wasn’t for friends helping me out I would’ve lost my home.” 

I’ll try and keep it as concise as I can, but the asks for us really are around building accessibility into policy-making right from the start. I appreciate with the pandemic a lot of things changed very quickly but we feel…[recording unclear]…was around supermarket shopping and obviously in lockdown people had to rely on online deliveries. During the first lockdown, people couldn’t get access to those delivery slots and that meant it was a lot of work for people to be able to access food. At one point we were getting a hundred people a day saying they couldn’t access food shopping essentially…[recording unclear].  

I guess other issues are around just general accessibility of information, so obviously the shielding communications didn’t always go out in a way that could be read by people with sight loss. If local authorities had had registers of people in their local area they could have potentially…[recording unclear]. What I’m trying to get at is it’s about that kind of sense-checking at the outset before the policy is made, so things can be built in as a part of that process. Things like the covid home testing kits. So only now has the requirement to have an email address been removed, only now can you get a virtual assistant to read the barcode, again if that had been brought in a little bit earlier that could have meant somebody with sight loss could have accessed home testing much earlier. So I think it’s around that sort of sense-checking with disabled people for any often completely unintended consequences. 

We know that lots of authorities have been given extra funding to incorporate things like pop up cycleways, pavement widening, to build in that social distancing requirement which we completely understand, but alongside that what we are noticing is that often those schemes are brought in and the equality impact assessment process isn’t followed, or not properly, not robustly enough. I think if/when (hopefully) Labour are in government, then I think making sure that whole EqIA process is actually followed to the letter and there is that robust consultation with disabled people, I think that would be really, really helpful.  

And I guess probably the last thing is around the introduction of the trial of electric scooters, and again we understand the rational behind that to try and get people out of their cars and to bring in that more active mode of travel. The unintended consequence of that is that now there’s lots of pavement riding because the GPS can’t stop that happening and they’re often being just left on pavements, causing obstructions. We are working with e-scooter operators within the trial to bring in things around making parking mandatory, for example, and making sure that only people with a driving licence can use these vehicles, but we’re still noticing that these are causing significant problems. So whilst we’re happy to work with the industry and to share our guidance and try and make these as accessible as possible, realistically for disabled people, in particular those who have any kind of mobility difficulties, these scooters could potentially cause quite a big problem, so I think that needs to be looked at. We’ve spoken to RNIB sister organisations in countries such as Norway, Sweden, Denmark that are much further down the line with this than we are, and they’ve all said these are causing serious problems for people in terms of mobility.  

So those are some of the harms, but our overarching ask is about building that accessibility into policy-making and actually sense-checking things at the outset and then a lot of the things that have happened prior to and since covid…[recording unclear]. In terms of Access to Work, whilst Access to Work is absolutely brilliant, from an accessibility point of view, because everything is still very much paper-based and has to be done by hard copy, again for somebody who is blind or partially sighted it’s so tricky and it seems to be unnecessarily difficult and challenging and it makes you spend a lot more time filling in forms and sending things off to get counter-signed. If it was all done online, if it was an online portal, that would just make life so much easier because it is a brilliant scheme and it does enable far more people to have secure employment, which is what we all want.” 

“I want to raise some silent issues around the pandemic in a population of disabled people who I think get ignored in all this, people with learning disabilities and autistic people. What we’ve seen from covid is people with learning disabilities are six times more likely to die than the rest of the population and the services where people are living, such as residential homes, supported living, they haven’t had access to PPE and testing. And then it took the massive campaign by Jo Wiley, when her sister was ill after she couldn’t get the vaccine, to get them moved to Group 6. So I think that’s been a big issue. 

And then 2000 people with learning difficulties and autism are detained under the Mental Health Act still within hospital. Although they’ve got processes such as care and treatment reviews, to review care, it’s been a bit of a smokescreen for local authorities and CCGS to not fund people’s care, just to say they can’t do anything because of covid. So there are people stuck in these institutions and there’s plenty of evidence of private provision just basically warehousing people to make money, but people stuck in NHS provision as well with no exit routes. We can go on about the underfunding of authorities, but I think it’s been a bit of an excuse to keep people locked away and services not doing what they’re commissioned to do. That’s two of te big issues I’ve come across in my nursing role.  

And then local authorities generally using the covid act, coronavirus laws to not do Care Act assessments, so there are lots of disabled people who are just effectively stuck at home if they’re lucky enough to be able to afford care. They’re relying on the good will of family, friends, extended community services. There’s a lot of people just stuck at home, isolated. My wife’s a Labour councillor and the amount of casework she’s dealt with around people who can’t access Care Act assessments, who they’re having to do food bank deliveries for, people who are all very consistent with the stories we’ve heard from other speakers so far. Benefits sanctioned for no good reason, it’s just horrendous what I’ve heard and witnessed in the last year. Just for the Government to stand up and say “all’s great” and hide behind the vaccine rollout, which the NHS has delivered, along with other community services beyond the farce that is test and trace.” 

“I’d like to see doctors, my GP, do my assessment. My GP knows me, he knows my health, the practice has known me since I was 10. They know my conditions and the impact they have on my life. They are best placed to assess me, yet currently their views are almost ignored, as are my consultant’s views, and I am assessed by somebody who’s a healthcare professional. Could be anything. I asked one of my assessors, “What do you know about this condition, that condition.” “Oh, nothing.” Yet they were deemed appropriate to assess me. One of my conditions she’d never heard of, and the other one she said “oh yeah, I worked on a mental health ward for a little while.” I don’t have a mental health condition, I have a neurological condition that affects me physically.  

It’s a nonsense having paid people outside the NHS carrying out assessments because the quality of their assessments doesn’t matter, whereas using NHS staff who know the people being assessed makes much more sense. It would be a much more accurate assessment and it would be much quicker and less costly than what we’re currently paying ATOS, Maximus and Capita.” 

“I don’t know, because sometimes I have to educate my consultants on my condition because it’s a rare condition and only happens to one per cent of the population. So it’s not always the right thing, but we’ve got to get out of this mindset that these people who currently assess us, while they were medical professionals at some point in their careers, it is not a medical assessment, it’s a disability analysis to see what you can do. That is why we really need to change the narrative, because the times I have to say to people it’s not a medical it’s an analysis of what you can do. They say “yeah it is, because the nurse told me”.  

I mean the person who discussed my heart condition was a learning disabilities nurse. She had no inkling regarding my condition. I caught her googling it. I said to her, “I’ve got any amount of educational material here for you”, and sometimes they say “oh well your arteries are blocked so we won’t do anything”, and that’s from a consultant.  

So it’s not always the best, but I think the training we need to be looking at closely is the fact that we need to understand what this assessment is about first and foremost. And these people who are doing it, you can’t imagine how happy I was to find out they’re short of assessors because they’re all flocking back to the NHS, it’s not always possible. It’s a really difficult nut to crack.” 

“It’s so frustrating with these assessments, the amount of times I speak to people and the overarching message is that life-limiting conditions that severely affect people aren’t taken into consideration. All they see is what they see on the day. The system doesn’t work. It would cost less to have medical professionals who know you involved in that process.  

I have MS and I was penalised for being able to work. Because I can work, it doesn’t mean I shouldn’t qualify for benefits. I can barely walk. The whole system isn’t working in its current format and it does need a huge overhaul. I did a Mandatory Reconsideration and had to go to a tribunal and the amount of people that I speak to who are also in similar situations, not just people with MS but people with other conditions, it’s always the same. They’re always turned down for Mandatory Reconsideration. They go to tribunal and it’s given at tribunal. The cost of having to repeatedly look at the paperwork and have court hearings is just ridiculous. If somebody who was aware of the condition from a medical perspective and assessed that person, and they knew that person, not specifically your GP or your consultant but a combination of both of them, it would absolutely make a difference. I think it is desperately in need of being revamped and I feel very strongly on that.” 

I was invited to DWP headquarters to take part in an exercise where they asked disabled people to tell them about the extra costs of living. So for example, I can’t use tin openers. In only have one functioning hand and I have to buy those tins with a ring pull. They cost more. That’s just one little thing. I’ve had to buy adaptations, I’ve got a mobility scooter. They said “tell us about it, tell us what costs more” and I don’t know what happened with that. There were several sessions and they paid my transport costs from Manchester down to London, there were people from all over the country who had come. I came with a PA because I’m not safe travelling independently and they paid for that PA. The trip down to London and back wipes me out for the rest of the week because of the physical cost as well and the mental cost of being there. My PA, who happens to be my husband, had to do everything for at least three days because I was completely incapable of doing stuff. So they did the research several years ago and nothing’s happened to it, nothing’s changed. 

I had a phone call a few minutes ago from one of the people I support because he’s not had his letter yet to tell him about his pay rise. And he’s a guy with learning disabilities and he panics over the slightest thing. He’s convinced they’re spying on him, he’s convinced somebody follows him and watches him to try and trip him up and show he’s more capable than he is. There’s nothing I can do to reduce that fear because he’s utterly convinced.” 

“I forgot to mention before about education. I know there’s been a discussion about it in the media, particularly for children with special educational needs, I think a lot of that support that would have been in place, particularly one-to-one support and face-to-face, hasn’t happened. We need to make sure that children with special educational needs are not left behind, because there is a risk of that I think.” 

Picking up on the point regarding the DWP and the ‘basket’, about disability needs and the cost of those needs. For a long time that has been way out of sync and it’s used as a bare minimum. That is literally, you can go round the supermarket and get these things that are considered to be a need. I saw something recently where somebody had put leggings as a necessity, but they’d taken out something that actually was a necessity. It was just ludicrous because I think some of the people who are invited to the panels just don’t live in the real world, in the sense of most people would say a telly, the internet a phone – those things are important.  

Yet there are millions of people out there who can’t even afford that basic internet connection. How are they supposed to survive when they can’t even connect to the internet to fill the forms in to claim? Then they’ve got to travel across town, and obviously at the moment we can’t do that, particularly where I live, it’s so rural you’ve got to go halfway across the North East to get any support. Then that support level is really limited to appeals processes because there isn’t enough support in Northumberland alone, to warrant the need from people. I think that basket really has to be looked at in terms of not just having enough money to feed yourself, but the things in the food basket, things like the internet. Everybody needs a TV these days. I could slap people when they say “well they’ve all go big flatscreen TVs”.  

Those are the simple things. Like S says, she needs a mobility scooter. Some people, like myself, have a mobility car, but that can be taken away just like that. Like a scooter, if you have it through the mobility scheme, if you lose your benefit it’s gone and you’re housebound, you’re cut off from the world outside. So there are all those things.  

And I’ll take up M’s point about street furniture as well. When you’re partially sighted, as I am, it’s a nightmare. Sometimes you don’t even see it until it’s too late. It’s about that basket really, it really needs looking into, what we see as really important and where those views come from. They tend to come from the big charities like Scope, they send volunteers in, but these things are engineered to give them the desired result. I would like a survey – I don’t know whether you can do it – I would like a survey put out asking disabled people what they really need. What do they think are the basics for living, and see what results come back and compare it to the basket. I think that would be a really useful exercise.” 

This is something I don’t know if anyone else has experienced. It wasn’t actually me, it was my daughter. We’ve both got a genetic disorder, a muscle wasting disease. Before she went away, she got disability benefits. When she came back, she had to prove she was disabled again, when they had all the records. That was after two years. It took over a year and half to establish she still had the same disability. It was absolutely crazy, she had to go to court and prove that she was British and it was the DWP. I don’t know if anyone else has had that sort of thing.” 

“People have spoken to us quite a bit about this sort of thing, like Access to Work and having fill everything in every time they get a new job. What are people’s views on a ‘passport’ or document that says here are my details.” 

Because of my disability, we built a proforma which lists what’s wrong with you ,when you were diagnosed, what the condition is, what the side effects are, what medication you’re on, what side effects the medication causes, who you’ve seen and so forth. Every time you have to go to the Jobcentre you could take the form with you. Every time you see the doctor you update it, so it stops all the faff of having to go through the details every time. You can just present the detail, they can sit and read it and put it in your file. Last time I saw my diabetic consultant at the hospital there were 14 of these documents sitting in there. It’s a profile, but at least it stops them from wanting you to fill vast forms in.  

The forms for DLA and PIP are more like as book, you’ve got to somehow negotiate your way through it because the one thing that they have done is they will repeat pages. They’ll reword the question that you’ve already filled in and put it somewhere else so you’ve filled it in once, then you’ll go forward a few pages and find it’s been rewritten. If your answer is different to the first one, they’ll turn round and say “oh well you don’t need this.” It’s the same with the ESA documents, all of them. This is the way they’re doing it now. The DWP are now saying if you need aids to cook or help with it, you don’t need the aid. Why can’t you just have the help. This is something people are going to have to watch very carefully for over the next few months. People are going to lose their benefit.  

They transferred me from DLA to PIP, told me I would stay the same. I had a mobility car for 16 years because I needed it, all of a sudden it changed, no longer. I don’t know if anyone’s mentioned mandatory letters [Mandatory Reconsideration] and tribunals, but you’ve got to watch carefully. I complained, asked for a mandatory letter to be sent out. The same letter was sent out within 12 days, with the same spelling mistakes, when it should have taken 6-12 weeks. They argued and said it had been reviewed. It went to tribunal and in the end I had to knock the tribunal on the head because it was doing me more damage than anything else. But the judge did say if I wanted to go back, to get in touch, but I never bothered. I get by. 

I know there’s no term people will universally agree on, but last year the TUC launched a reasonable adjustments passport for people in work, so if people moved jobs that went with them. That did get a lot of support. I think it helped reduced some of the barriers for getting into employment.” 

We also use the passport at work and it is useful, especially if you’re moving departments or you get a change in manager. Those details about your health and the reasonable adjustments that you have are already written down, in theory.  

In the outside world, it could work in the benefits system. It could be a document that gets passed to your consultant, your GP, to other medical professionals if you are going to go for benefits. But for some people, they would end up being rather thick documents because of complex needs. I know my health issue, it affects so many different parts of my body, I’ve got so many different consultants that I see, so it could prolong the process. However, it could also clarify a few points without me having to pull people in to sit in tribunals or go through Mandatory Reconsideration. So it could work in theory.  

The same could be said for a passport while you’re out shopping during covid times. Again, this is part of the thing that people don’t realise about us who are disabled. I may look OK, but in reality I can’t walk very far and I have speech problems. It might be that I can walk into a shop on my own, but by the time I’ve walked round I can’t get out on my own, so I need my partner with me. Having some kind of passport with your health details on could be handy because there are a lot of shops out there that have stopped more than one person from coming in. Quite often I’m refused access with another person. I think it’s worth considering.” 

I’m dead against this. There used to be the registered disabled scheme, where following the Second World War employers had to employ 3 per cent of their work force as registered disabled. When I was 18, my employer pulled me in and asked if I was registered disabled. I said no, they said they needed me to register so they could tick me off as a disabled person working there. It was a tick box exercise for them. I don’t want to have to prove that I’m disabled to anybody and it also feels like the start of an identity card. I don’t need or want that, it’s an invasion of my civil liberties and I’m absolutely fundamentally opposed to it.” 

When I was in work, reasonable adjustments were a given. My employers asked me, after offering the job, what reasonable adjustments they could make. I’ve only ever worked in a local authority and the NHS, so it may well be different in the private sector, but I’ve always been asked and apart from one thing, I had every single reasonable adjustment met. So yes, I’m dead against it.” 

“I’m with S on this one. It will lead straight to an identity card and further restrictions that I would say to anybody please let’s not go there. We fought the Government over ID cards – if you remember, IDS wanted to bring in ID cards and have your benefits paid on them, limiting where you can shop etc – and I’m sorry but I’m fundamentally against this.  

Taking up P’s point, there are forms where you can list your stuff anyway. I would suggest people do diaries about how their disability affects them, and I’m all for making Access to Work easier. I think it should be a far quicker process. But I take in a form to every appointment I have, and I also include it in my benefit forms. But we really need to stop and think about the dangerous road we could be treading with a passport.  

There are any amount of cards out there, like the RADAR scheme, the incontinence scheme, which is a couple of quid, and I’ve never met anyone that’s resisted that (although I do know others who have been told no you can’t use our loo). But when we start going down the road of passports, we are really on dodgy ground, because the Tories will pounce on it like a spider on a fly and introduce them. I’m definitely fundamentally against it.” 

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