The UK Government is...

Out of touch, out of their mind and might actually lead to some absolutely preventable deaths.

This is a really hard piece to write, because I have to admit, in public that I'm disabled enough to need help, and don't make enough to cover the money we lose to support my youngest. So, I'm admitting in public that even though I own a business, and I'm nominally 'self-employed' this year, we made less than $1000 profit.  That, ladies and gentlemen is less than $30 a week. £20 or so. I don’t make money from writing right now - that may change this year, but being honest, probably not. And even if I did, it’s a vast amount to make to replace everything I need, and relies on me being well enough to keep it up. And while I know you guys are patient, there is a bit of me that feels like it’s not fair.

Which is heartbreaking. And so, there's a few things I need to say about this.
One.  I know, as a family, we are fortunate.  My long term partner is in a good job - a very good job, and he covers most of the bills. In fact, all of the household bills are covered by him and he gives me a small 'allowance' every month to cover things I need to buy or replace in the household. I also get carer's allowance for my uni aged daughter, and my own PIP.
So, while I'm not one of the people targetted by the almost immediate changes that the government made to Universal credit, by upping the hours people need to work or they face sanctions, but I am watching with a bit of anxiety for the changes that affect PIP and carer's allowance. Mostly because I have conditions that have varying needs, and the proposals the government have suggested make no sense. They are cruel, don’t address the real problems that underly some of us, reductive to the people living with the issues, and if we’re honest, don’t even actually cover what is estimated to be the extra costs of one person in a household with a disability.
(See this research from Scope)

Personally, I don’t think the proposals make sense

Firstly. Being sent for talking therapies - do we really want to talk about how much harder it is, already, to get mental health support appointments? While I've not experienced that directly, I've seen friends and my own family struggle to recieve help, for 'talking therapies'.  It also assumes we don't already do that, for those already in therapy. It's almost as if the government went 'oh, the only way to fix anxiety is CBT, let's shunt *everyone* with anything that looks like anxiety into CBT.  Nothing else will do.
It also implies that one size fits all.  So the talking points all say 'tailored support'. I'm really wondering where they think that they'll find the resources to do this. There are backlogs for PIP processing. While my daughter and I are lucky and we've been supported, but I've also supported two friends through the process of appealing. And stats suggest that these appeals are often successful.  So, we've got a system that often needs appealed against if they don't make the right choices, for the judgement calls of each of the points we get - it's a value based judgement based on what you describe, but it's INCREDIBLY rigid.  You might have some really bad days where all you can really do is summon the willpower to order meds, and then have a bath or shower and that's you for the day.  For parents, especially single parents, that means you have to order out food. Yet, Mel Stride and Rishi Sunak are making out that we're leeching off the system to survive.  And yes, it's a luxury to be able to order that food, I get that, but...it's that or not eat at all. I didn’t have PIP when I was a single parent, and I know what used to happen was the kids ate, I didn’t. PIP may have made a difference there, but I was told I wasn’t eligible. I only became eligible during the pandemic, but my worst period of mental health was actually before then. The Pandemic was actually a time where I could be discharged. But discharged and still need a vast amount of support.

For me, my PIP goes to supplements, pays for my Ludosport training (exercise - it's the same cost as a gym membership) and any OTC things I need.  If I’m entirely honest, I also use my PIP to pay for sanitary products, that in my case, are actually adult diapers, because I have extremely heavy periods.
(that’s not a reason to get PIP btw, it’s just a reality of my life).There's just enough left that if I don't have enough willpower to cook, I can order out on my night to feed everyone. My daughter's carer allowance allows her boyfriend to get tickets to spend time with her and support her, pays for HER supplements, and will cover her taxis during the summer, which the uni otherwise pays for out of her disability allowance. 

There's also a fallacy in all of this. 

Mel Stride claimed PIP recipients received thousands a month. While that's possible if it's PIP and UC, I guess, I can assure you that my PIP payment was not and has never been that high, but I was given a backdated payment, which was over a thousand pounds.  Everyone that gets given PIP ends up in that position. Appeals mean that it could be more than that, as your pay is backdated to when you claimed. Which is, if you ask me, reasonable. And, though many people argue we should be given the interest earned too, that would imply we could save our PIP, and that plays right into the hands of people that think it isn’t required. It is.

I know of people that use their PIP to get a train rather than busses to work - someone that uses her PIP to go for massages for her back. I know of other people that use it to top up their wages, to what they might make at close to full time, because that's what their family needs.  Talking therapy and 'free' items, unless it's broadly things like 'fresh food' (so towards groceries) will make NO difference to people, and might, in fact, cause them more problems they’re currently solving on their own. The government said a while back they didn’t want to be a nanny state, they didn’t want to control our lives, but… other than making us targets, that’s what they now propose doing. Oh yes, we know you’re struggling, have this pointless thing for free.
There is no grant that would get me out of the house on my bad days. No voucher that could cure psychosis. None of the government proposals actually make sense to my conditions. And I’m an individual. And it’s the individuals that get hurt in ‘massive overhauls’. And there is no way to target this that the government shouldn’t consider providing for everyone. Like I said though, there is a disability price tag. And many people that are disabled live in poverty.

I'm not entirely sure if people understand why it's not one size fits all for treatment, but in my case, I spent a hellish couple of years dealing with my local mental health team, and basically, we got stuck in a very toxic dynamic, where the therapists assumed they knew me better than I know myself, they made judgement calls about the upset I was feeling and exposed to, and were not offering me support.  It ended with PALS (the patient liason service) getting involved, it being escalated to the local committee, and I was given the right to seek help from another psychiatrist, in another county.  Further for us to travel, but, I wasn't untreatable.
So, talking therapies - especially like the ill thought out DBT 'drop in, drop out' scheme that I landed in and lead to the critical point of 'this isn't good for me, this is making me worse' don't make things better, and while I absolutely agree that the NHS should be well funded, I do feel like if the government is looking to use PIP to fund the NHS shortfall, I'm even more worried.

Because, logically, if the talking therapies don't work, we're all going to need more help.  Where's that 'more help' coming from?  It's already notoriously difficult to get a placement in a home that looks after people who are in the position that need acute mental health support. The last ten years, minimum, have seen the government gut the NHS.  It was critically bad during the pandemic, and having been on the receiving end of the therapies I'm concerned they're talking about, I can tell you that they might help some people, but it shouldn't be mandatory. 

Ever.

You have to be in the right place, mentally to make the most of therapies.  That 'right place' isn't being down the money you have because you have a disability, and without the things you've designed to help yourself. Even if that's 'making up my wages cause I'm long term sick'. And the government has NO right to take that away IMO.

It's almost as if they want to do all they can to hurt the people that are in the least position to fight back. Which again, shows how utterly out of touch they are.

So. To be clear.

PIP is not 'money because I'm disabled'.  PIP is not 'a replacement for therapy cause there's none available in my region'.  PIP is not a payment to do anything other than possibly support disabled people, who have a lot of extra expenses (from that bus trip because it's too far to walk and we're late and low on spoons, to that drink out because we already finished our water and we're tired and thirsty and there's nowhere bar an artisan coffee shop open.  PIP doesn't change things dramatically enough for me to stop worrying about money. It doesn't change that I need to be careful, to budget. It is the reason many of my friends have access to Uni, to support at Uni. To a better chair to sit in at home (that was still saved for!), for their internet connection and their phone, because those are "luxuries".  It also doesn't change that there's no way to work this out if you live in a household with multiple disabled people.

It's absolutely true - benefits aren't a lifestyle choice - they shouldn't be something that someone sticks on, and avoids work. But the majority of people that I know, which claim that support, aren't interested in staying on them for the rest of their lives. They feel ashamed and upset that they need to even claim.  They fought to get their PIP (for example, I NOW have PIP.  I was refused several years ago, but nothing has really changed.  I didn't appeal, I regret that now.  I didn't think I would ever get PIP but one of the last things my outgoing mental health nurse did was put in the paperwork to get me that support, so I could potentially get support with my bus pass, and learn independence again. And because David and I pointed out that £80 then was far too much to spend on supplements.  I now spend that on the stuff they recommend I take for migraines. My other supplement bill doubled, so we've had to make changes to it. And most of it means I have really expensive urine, but, I also went through a hellish year of basically having a condition that matched pernicious anaemia, just not actually the underlying cause.  A year of not having B12 or iron levels that were remotely correct. So, I supplemented various things to support my body, my skin, my hair. I honestly believe that having done that is why I’m recovering now, why, as long as I don’t have shingles, all I have is a red patch up my cheek where I have shingles rather than scarring. Why my hair hasn’t needed to be cut short, which would break my heart. Because for many of us, PIP might be the only money of our own we have coming in. And it might give us a little dignity, which feeds into our mental health, which means we *are* more willing to try on our good days. Because, on my good days, I can go order coffee away from my partner. Look in the shops I’m interested in. I sleep better, I exercise and clean and I manage the things I hear and see better. Those good days are few and far between, but having the opportunity to work through it all has been vital for me. That’s not even talking about the fact that I now have a permanent headache. No one should live with a migraine permanently. I do. How would you work around that.

The answer is ‘as best you can’. My writing this took three days. I used to get this done in a morning. What employer would give me three days instead of half a day to write an article?

How do you design support for someone that needs to take vitamins and supplements, meds and gets very picky about her food?  There's no one off cost for me. There's no talking therapy that will make my pain better.  I have therapy resistant issues that I don't feel ready to deal with.  I don't like dealing with the things I see and hear. 
I'm just one voice in a clamour

They don’t see us

The government doesn't treat us as individuals. We are a faceless mass that doesn't deserve individualised care, and there's no way their budget will *ever* make the ideas they've suggested anywhere near to 'right'. If they can't achieve a correct level of allowance onto PIP, if they can't support therapy for us without removing our PIP, if they can't stop treating us like money siphons and accept that we're not the cause of the trouble in the UK, then nothing will change.
I've often commented to my partner that the local MP's and the MP that runs our district don't seem to see us as people.  Locally, I know that the people that represent us on the council like to talk big, but rarely get anything changed. We have been dumped with a cycle path that no one wants, for example. 26 miles to link the areas from Cheltenham to I believe Stroud. All feedback offered seems to have been ignored. And, the money could have been better spent on potholes, or a summer club for kids, or anything other than a bike path that seems to barely be used and is causing havoc on the main road at the top of our estate.
Our MP for the region only ever pops his head up to go on a jolly or to promote gambling - he's got an almost unhealthy obsession with Race week, here in Cheltenham, and in fact, possibly created a super spreader event by insisting it was not cancelled during the pandemic.  He gets a LOT of money and claims a lot of money back.

Which leads me to my final point.  PIP and carer's allowance sometimes pays for people to come in and help us.  Not me, but I know another friend who has a cleaner come in and it's paid for by her PIP. At no point should she lose that, it keeps her autoimmune and allergies at bay.  But the government sees that as different than claiming money for their family to work as staff (Laurence Robertson, we see you), to pay for second houses in London when the rest of us have to make do with commuting, to pay their bills, to subsidise their places of work for good food. That’s on top of a starting salary of over £91k.
At no point have they looked at their own budgets and said 'you know, yes, ok, there's a bit of a money pit over there for people on benefits, but, we've got a robust system - it's not as if people walk in and walk out with PIP, UC and that's it, we never see them again. So, why don't we look at what we could cut back on?'

Except, you know?  That seems too much like them losing the things they consider essential.  There would be uproar if we, as a people did that to them (if we had the power to).  Maybe that's the perspective they need to take, rather than force people to work more hours or face sanctions, even though unemployment is up.  Or take away the support we use to survive and manage, and have a bit of normality in our lives, because it might cost us more. I'm sure if they looked at their own wages, their second houses, their expenses, their subsidised food and bar in that light, they might get a glimmer of how we feel. It’s not the same, by a long shot, but they might actually think ‘I don’t like this feeling’. If they understand that, maybe, they might empathise with others.

If MP's want to really make a difference to the budget, if they really want to do something that isn't going to hurt others in the longer term, of course, get more schemes set up to support people into finding work, if that's what they're ready for.  Absolutely find a commonality that they can leverage for cheaper, and that's a thing we can get for a reduction in our PIP (and it has to be something we all need, so good luck). Absolutely revise the system, because it's broken and inhumane and these changes are ticking it over into barbaric.  But that revision isn’t the payments being changed to one off grants, or vouchers, or removing support. Augment it, offer support around it, and see if people recover that way, yes. Don’t force them to be recovered.
And maybe, just maybe, get the expenses, the subsidies they get and everything else, under control.  Because if they really think austerity is the answer, they take the same things away as we lose.

I hate to think how many people will be driven to hurt themselves over this. I am really upset about it already, and we're not even on the consultation, but there *was* no consultation for changing the UC rules, and they are already hurting people and causing panic.  But at no point did Rishi or Mel say 'we acknowledge this is hard, we're revising our subsidised canteen' (just as an example). No, because they don't want people to focus on them.  They want scapegoats. 
People on PIP, UC, claiming carer's allowance - they aren't scroungers.  Not the majority of them.  Yes, people will abuse the system, but, most of us are quietly trying to survive in an increasingly uncomfortable world.

Because know what my PIP will likely be used for from now till sometime in October?
Running our air conditioning.  I don't regulate my temperature well, and I live in a place that's up around 40 degrees the last time we had a serious summer heatwave (last year) and electricity and gas costs around £350 to connect to it for the year. That's the daily standing charge. Like I said, we're lucky, but that's a 12th of our current budget for gas and electricity.  Our gas only runs our heating now, everything else is electric.  We have two air conditioners (and if I get my own office, three), which I need to be able to sleep.  I also need my audiobooks, my Kindle, my internet.  All are 'luxuries'.  Without them, though, I would probably not survive. And I’m lucky, remember? I live with a man that can care for me, and we don’t need a second income, so we can put those costs into a pot for the extras we need. I can get Co-Q10, riboflavin (B2) and Omega 3,6,9 to see if that helps with my migraines. I can get biotin, so I don’t lose my hair and fall into depression. I can pay for LudoSport, so I can exercise in a way I enjoy. I can order food for the days it’s been rough. When I’m crying because the things I hear tell me everything is poisonous in the house, or when I can’t see properly.

So, if one of you lovely MPs that consider us stupid, vapid and money grabbing read this, my name is Kai.  I have CPTSD, anxiety, I'm on the spectrum, I have various injuries from various things through the years. I get cysts on my ovaries, and I have both a psychosis and Status Migrainosus.  I'm not a faceless person.  I would probably be a face in the crowd on the street, but I have my dignity and I'm speaking up for the others without the spoons to process and respond. 

Cut your own benefits before cutting ours, please. Scare yourself before destroying the lives of others. Look at what YOU can do without hurting people. Because you will hurt people. You have no right to do that and it’s not what we elected you for. Stop scapegoating, start accepting responsibility, and please, take a good, long look at your expenses. It won’t fix the budget shortfall, but it might give you a parity of what we’re facing, even if the reasons are different, the upset and discomfort isn’t the same, but you might understand just a little better. I know it’s foreign to many of you in power, but ask your constituents if that’s what they actually want. And if not, WHAT they actually want. We nominated you to make our lives better and govern the country, not act in your own self-interest.