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We want to hear from you: please tell us about your experience of the online community.

Respond to the Government's Consultation on Benefit Reforms

Rosie_Scope

Modernising support for independent living: the health and disability green paper

On Friday 19th April the Prime Minister announced his intention to make changes to Personal Independence Payments (PIP). On Monday 29th April, Secretary of State for Work and Pensions, Mel Stride published a consultation setting out more details. The consultation will be open for 12 weeks.

If you'd like to read about the proposed changes in more detail, you can find more information on the Government website.

You can also read Scope's explanation of the proposals on our website. And there's still time to add your name to Scope's petition, 'Stop Demonising Us'.

How to respond

If you'd like to let the government know what you think about the proposed changes, there is a form to complete online . You can also respond by post or email. The consultation will be open until 22nd July 2024, so be sure to add your responses before then.

If you're struggling to cope with the proposals, please don't be afraid to reach out. Mind, Hub of Hope, Samaritans, and SHOUT offer a mix of resources and helplines should you need some support with how you're feeling.

It’s important to know that nothing is changing right now – these are just proposals. Nobody is at risk at the moment. The consultation will take a while to complete and it's unlikely that any changes will be imposed before this year's general election.

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Comments

AutumnBreeze

Just spent hours filling in the form with as much detailed info as I can. Hopefully it will go some way to improving the system for everybody that needs it.

- I'm not a professional just an individual who feels heavily let down by the current system -

luvpink

I completed the questionnaire.
I found it quite repetitive but it didn't take me too long to fill it out.
It isn't really user friendly and its patronising and degrading to disabled people.

Oaktons

Moving to a vouchers will take away peoples freedom to choose their care providers, will remove possibility of saving up for an electric wheelchair,
pay for taxis, medical costs or anything else they need. One off payment won’t permit buying new equipment as everything wears out. What about people who have to wash and dry constantly due to incontinence. Washing machines need replacing and repairing. People who can’t stand the cold will freeze in the winter without the money to pay for heating. It’s bad enough now.
Personally, I am scared to death. I live a lone and have no family. Everyone’s circumstances are different even how we feel pain with same conditions.

Rosie_Scope

Well done for getting through the form @luvpink and @AutumnBreeze. It's so important that as many of us as possible share our views and have our voices heard.

It's a really difficult time @Oaktons, I can totally understand why you're feeling scared about the future after all that's being proposed. Lots of others are feeling the same way, so you're not alone. I hope the community can be a place of support for you

happyfella

can we have a statement from Scope. A lot of people are worried, me included. Rishi seems to be pushing this through before he announces a general election. Not sure why he is picking on disabled people. But, what is the process.

I know he is doing a 12 week discussion on this. But does it have to go to a vote with all parties to pass this or can he do it on his own.

And what would be the time frame. Could he push this through before he is kicked out of number 10. Instead of all the news articles scaring people. i would like to know what Scope have to say, so people are more clearer as thousands of people are scared.

Rosie_Scope

Hi @happyfella, Scope have written an explanation of the proposals that you can read here . You might also like to read Scope's response that was written on the day these proposals were announced. I hope those are a little bit helpful, I know it's really worrying to read about it all.

Unfortunately, we don't know the timeframes so it's difficult to say exactly if or when any of the proposals will make it through. We will be keeping a very close eye on any further details and we'll keep everyone on the community informed as soon as we know more.

Scope have also written a Disability Manifesto and our campaigns team will be working hard to make sure disabled people's voices are heard in the coming general election whenever that may be.

happyfella

The sad thing is, lives are going to be lost and that is a fact, and people are going to be left homless, and people are going to go without food to survive if this goes through.

I knew a few people who rely on PIP to survive and get help with daily needs, and they have said they will be forced to sell their homes so they can live and be looked after.

This is desperate measures from a desperate man who wants to keep his number 10 job

Meg24

happyfella said:

The sad thing is, lives are going to be lost and that is a fact, and people are going to be left homless, and people are going to go without food to survive if this goes through.

I knew a few people who rely on PIP to survive and get help with daily needs, and they have said they will be forced to sell their homes so they can live and be looked after.

This is desperate measures from a desperate man who wants to keep his number 10 job

I'll be made homeless if the proposals to change either the WCA & PIP go ahead.

That's because the basic out of work UC rates are too low to live on even for a short time and are certainly at destitution levels if you are on them for years as many of us would be left facing.

I use my LCWRA element and my PIP to pay for things directly related to stabilising my MH, but I also use it for things like paying the bedroom tax, paying my council tax and rent contributions, buying home insurance, occasionally new clothes or shock horror, sometimes a hobby item. It means I can actually live and not just scrape an existence.

My MH is torturous to live with, I spend many days very depressed or anxious, unable to take my mind off things or relive trauma from my past. It already makes it a struggle to want to be alive, if these changes go ahead then I'll lose my home, my dogs and everything else that keeps me stable. What will I have to live for then?

onebigvoice

AutumnBreeze said:

Just spent hours filling in the form with as much detailed info as I can. Hopefully it will go some way to improving the system for everybody that needs it.

- I'm not a professional just an individual who feels heavily let down by the current system -

I feel for everyone that has to go through the system where the assessments are used to change the vbery fundimental rules of why we apply.
Why should I be reassessed for ACCESS TO BENEFITS by an OUTSOURCED COMPANY, (Maximus, Concentrix, Capita, ATOS.) to name some when they bl;aintentanlt do not follow the very rules that they are trying to enforce on us.
Recent assessment carried out by Capita, (3 weeks ago) came from a letter to state we have looked at your claim and reassessed it to make sure that you are still on the right levels of benefit and that if there have been any changes we can add themn to your claim.
Sounds O K.
1. The Claimant was assessed 14 weeks ago, from "Long Standing" degenerative conditioins, which over YEARS have now caused so many issues we are almost at a stand still on treatment.
Reviews of medication are now MONTHLY and blood tests TWO WEEKLY WHERE SCRIPT CHANGES ARE ON MONTHLY SUPPLY.
2. Capita letter: "I have decided to review your case?" (This is a decision maker) "and I have decided"
a) Can anyone explain how a decision maker can change a previous decision on a claim just completed my a senior Decision Manager?
b) Changed from ENHANCED RATE for both Care component and MOBILITY to Standard Rate Care and NO MOBILITY?
c) Based on the paperwork sent in by Capita, I D. registered Nurse that supplied her ID job title and picture, signed the report in front of me, then refused to give me a copy because the report was for the DWP who hired them to do a MEDICAL report, because of the number of MEDICAL issues?
OR, BECAUSE THERE WERE 8 PAGES OF MEDICAL ISSUES LISTED AND BACKED UP WITH THE APPROPRIATE LETTERS OF SUPPORT FROM EACH DOCTOR ON HEADED PAPER?
d) Charter states I can have a copy of the report. I have requested it from the previous one and did not receive it?
So how was this decision maker allowed to change anything without consulting me, who now all of a sudden is not down as an Appointee? I am now a point of contact? Yet they excepted more than 8 pages of PRIVATE MEDICAL INFORMATION ABOUT A CLAIMANT, BECAUSE I ALSO HAVE WRITTEN PERMISSION TO ACCESS THEIR MEDICAL HISTORY at the surgery.
How I made my decision says nothing and by the way the 14 months of sorting out the claim and the number of hospital appointments surrendered the Mobility part for a car, picked up 7 weeks ago? We are making arrangements to pick up the Mobility vehicle as you are no longer entitled to the MOBILITY ELEMENT.
SORRY guys, one other thing, where do you think they based the GREEN PAPER ON? Its another paper based on two things: The White paper presented to parliament every year, and two based on what is needed to change the system to make it work now based on the SOCIAL CARE ACT that has just been introduced?
If any one wants to read the Social Care Act and explain what part of the Green Paper applies to uis please feel free to contact me here or through SCOPE, as I have already written my response to the DWP and also with SCOPE, DO NOT WAIT for others to fight for you, now is the chance to mobalize our voice and get your self heard. Enough is enough, we are disabled and receive treatment for a reason and it is not down to Government to decide the haves and have nots, ACCOUNTABILITY, CONTACT YOUR LOCAL MP sign the petition, get every single person who is sick, long term sick, disabled, or anyone that has to provide Evidence on headed paper to support a claim for benefits.
SEE THE LINK AND GET PEOPLE TO SIGN, WE HAVE AN UNTAPPED RESOURCE TO GET BACK WHAT WE ARE ENTITLED TO, DON'T LET ANOTHER CHANCE GO BY.
You already have proved your disabled or need help otherwise you would not be here on this site.
They will change everything given the chance. as long as they show they gave you 12 weeks to reply they WILL GO AHEAD. BUT IF AN M P's are SENT 20,000, 50,000 or 100,000 e mails around the country then ACCOUNTABILITY AND THE SOCIAL CARE ACT WHICH BY THE WAY IS GOING BACK TO 2015 ASSESSMENTS, INCORRECTLY GIVEN OF ALL CLAIMANTS, SO WHERE WAS THAT REVIEW? iT WAS IN THE white paper given twice last year of the 2018 Social Security Act, where decision Makers with noi medical Knowlege or experience and not registered on an appropiate medical register changes a report written by a Doctor, Nurse, or Health Care Professional.
How did the government resolve that: THEY CHANGED THE WORDING TO And we used the Report written by the Health Profession, ( BUIT DON'T STIPULATE IT IS THEIRS) AND the medical information you supplied? Mine is already non headed paper and I haven't seen there report, and already know they do not have medical knowlege otherwise there would be no need "farm out" to them.
SORRY ITS SO LONG AND I KNOW SOME WILL SAY WE DON'T NEED ALL THIS, BUT YOU DO.

worried33

I have told my sister she will likely be housing me within a few years, but like many not involved in the system she is just like not much will happen and you will be fine.

The tories current plans look likely to reduce true PIP claimants down to a small fraction of what it currently is, with not all of them getting cash support. The requirement to need a formal diagnosis seems a clear case of discrimination which I expect charities to take to court.

The plans remain in place to completely abolish sickness benefits with most of the media and public been fooled by it under the umbrella of abolishing the WCA. These only affect UC but ESA migrations now at top of the queue for UC.

I do expect existing pip awards to survive so if a review is due soon its probably better to be reviewed sooner than later, and it wouldnt surprise me if pip reviews have been deliberately slowed down as a backlog now means more reviews can happen under a new system, I should have already been reviewed sometime last year as my original end date was 2024. Instead it got extended to 2025, and I havent heard anything from the DWP. Wouldnt surprise me if I get reviewed under the new system.

I also think these plans were drawn up at least a couple of years back, we have been drip fed them, started with the disability white paper, and then piecemeal after that date, but all of the plans fit with each other like a jigsaw. One big give away is the disability white paper showed projected spending by the DWP on sickness and disability benefits, and it projected a 80 percent plus fall in spending, which made no sense at the time. As the announced plans wouldnt have had that kind of impact so the only logical conclusion I could draw was that there was more to come which turned out to be true.

The price paid of course for not taking urgent action on the white paper was that many people were saying dont worry its almost a decade away, but of course these plans are now being accelerated and that window has vanished. It is clear at this point the two prime targets identified by this extreme right government is immigration and working age benefits, throwing cash around like confetti for pensioners and tax cuts, whilst claiming somehow the country cannot afford to look after the vulnerable.

Dee78

😀Hello all

Now that elections have been called for July 4th, does this mean we are safe for from these very worrying proposals for PIP reforms? Is there still a need to fill in the consultation? I am concerned that consultations can be designed/ phrased push you into creating answers that fulfil their wanted outcomes.

Is this the case with this PIP consultation? Has anyone done it yet? ( me not)

For example, asking whether certain diagnosed conditions are a good way of assessing PIP. I would answer yes, as a doctor's letter of certain known condition and known severe impact should be enough, and they also shouldn't have to be reassessed. BUT this should an extra 'tool.' There should still be the opportunity of assessing people on how their condition impacts them in their lives, as many have undiagnosed conditions that impact greatly, or indeed conditions that may not make the 'approved' list, but have a huge impact.

I don't know how the consultation is set out, but I would worry that in the above example they'd push you into a binary answer, as perhaps they only want to give PIP to people with certain conditions, thereby 'pruning out' lots of people.

It took me 16 years to get a EDS diagnosis due to poor NHS provision and lack of knowledge of my condition . I am not alone, there are many can't get diagnosed for a whole range of illnesses. My concern is I would not get PIP under new proposed rules. 😒

Amaya_Ringo

I would still fill it in, even if it is ultimately looked at by different people.

It is long, but the questions provide open text boxes in which you can write nuanced answers. If the question seems to be leading you towards a particular end goal, it doesn't mean you need to follow that. You can input your actual experience and opinions.

Assuming the election means the consultation doesn't matter is actually riskier, since we have no idea what will happen with the results whoever wins the election.

Dee78

Thank you for your wisdom, Amaya around the PIP consultation survey, it's given me the confidence to fill it in.

Glad it's mainly open ended.

But so hoping that whichever political party is in service that as disabled people our PIP is secure and our rights strengthened

apple85

update on the consultation:

https://www.disabilitynewsservice.com/progress-continues-on-key-parts-of-conservative-disability-benefit-reforms-despite-election/

coopernffc

So stressed and upset they are trying this. First they took away all the support we received with tax credits and replaced it with messily UC and now vouchers! To pay my food shop? Gas and electric? Taxis? And they're saying we will be offered more care and support and treatment with our conditions! We hardly get any as it is! Just left alone on a scrap heap. Where are they going to magic theses services? Being disabled has caused my mental health to fall off a cliff and I've been begging for mental health support for 3years, 3 referrals ALL refused! But the gov are trying to pass the buck to the LA, can you imagine a catalogue with a voucher for a counselling session that doesn't exist! The might as well just put us in gas chambers! Suicides are just gonna increase as well as death from poverty.

Pamela1509debbie

https://forum.scope.org.uk/discussion/comment/866872#Comment_866872

I only got diagnosed with EDS 18 months ago after being pushed from pillar to post FOR YEARS even the different professionals I've seen have contradicted each other or don't fully understand exactly what you live with, ie: some of us suffer greatly with gastro/bladder/eye/ear problems linked to our EDS, the list goes on and all hugely affects me mentally, my own Doctor has even said I'VE taught HER things about EDS that SHE didn't know. The fear of losing my benefits now and having all this undermined or 'reassesssed' by someone who doesn't have the tiniest of clues what it's like to live with this condition is petrifying!. I am also Autisitc and A LOT of proofs don't understand that either so I don't see how Vouchers can remotely help me, as for 'CBT type therapy', I'll always be Autistic (even that took 6 years to get a Diagnosis) and 6 weeks of 'talking therapy' isn't going to suddenly make me UNautistic and stop the way my brain works is it, I just don't understand it's all SO scary, I haven't relaxed for a SINGLE day since all this was announced, all ai think about is how I wouldn't want to go on if I lost my PIP or ESA

Amaya_Ringo

It is a feeling that no matter what the issue, there is always a fight to get from A to B, when other people, who do not have those challenges, comment that we're not trying hard enough.

Cantilip

Just a grim after-thought

Catalogue/ shop scheme: in this kind of scheme, there would be an approved list from which disabled people could choose items at reduced or no cost. This would likely work better for equipment and aids rather than for services.

https://www.gov.uk/government/consultations/modernising-support-for-independent-living-the-health-and-disability-green-paper/modernising-support-for-independent-living-the-health-and-disability-green-paper

Now Google 'Michelle Mone'. I should fight tooth and nail a catalogue in which what was I was allowed was presented to me, because I should not trust the government to be offering me safe equipment. Fell off the back of a lorry, guv.

I should assume of course any 'freebie' was likely to be inferior. That doesn't necessarily make it unsafe. It just means I don't want it. For a time I had a rollator from the NHS. It was bigger, heavier, clunkier than the ones I can buy.

My mind wanders on. With money, you can buy your own equipment and it is incontrovertibly yours. Would these items at reduced or no cost also become one's property. If so, presumably I could sell a bigger, heavier, clunkier rollator to someone somewhat larger than I?

Meg24

A one size fits all approach doesn't work for anything physical, people are all shapes and sizes with varying needs and need aids for varying uses and situations, there's a reason the disability equipment industry is so profitable, because that much choice is needed and valued.

The same goes for mental health needs. Personally I have been having therapy for over 20 years, it's the healthcare that suits me and keeps me stable, much like someone with diabetes requires insulin. I have that at present on the NHS but won't have it forever so will need to pay for it privately at some point, but I have a very specialist form of therapy targetted to my particular psychodynamic, personality and trauma history. You can't just give me vouchers for CBT.

The other thing that keeps me stable mentally are my dogs. The act as my carers, they give my day structure,.make sure I get out of bed in the daytime, get outside to get exercise and further than that, they quiet my voices, calm my mood. I cannot replace them with carers because I cannot tolerate people in any way, I don't have friends, I will not use my daughter, she has her own life and issues with her own MH. My dogs are my world, they give me something to love and give love in return. I need cash for dog food, for vet care, for treats and toys - I give them things and deprive myself, because I love them more and they deserve it, and that's my choice. I pay for free running sessions in private dog fields when I can't face being around people, there gonna be a voucher for that??!!

If I cannot afford my dogs or my car without which I'd be housebound then I have literally nothing left to live for. I cannot live with myself by myself stuck in the house 24/7 with nothing but my own intrusive thoughts. That would finish me off very fast indeed.

Tumilty

i'm wondering how they think this is a vote winner.. Surely people who work & don't need benefits would think this heartless to prey on the vulnerable. Surely they should concentrate on the many who can work but choose not too and sit at home drinking & doing drugs like a lot on my estate..

When they say 'sick note' culture, i get ESA & PIP & have only filled in the forms & a mandatory reconsideration & have been awarded what i have got as i don't think Dr's write letters anymore they just get contacted if needed & i'm unsure if they even have over the years .. Does this still count as my health issues have been long term? In taking it out of the GP's hands shows that the government don't trust what they say… A friend went to an ATOS assessment a while ago & she was in pieces just by being there & lost her award whereas not with her GP. Please let me know if i have to start my own thread with my questions or ok here.. Thanks