To be terrified about PIP?

[BobbyBiscuits]

I've tried to blank all this out for ages, but today it hit me when the government basically are saying I'm going to (they want me to) have my PIP cut off?
My main illnesses are severe depressive disorder, general anxiety disorder and severe anorexia. I've severe PTSD symptoms and also think I may have ADHD but have not been able to get diagnosed due to phobia of MH services since I got sectioned.
I now have physical symptoms also and severe osteperosis which I put on my last forms. But had no assessment for several years.
I'm praying this is BS from the Tories and they can't do it anyway as they'll be kicked out.
Or could labour still continue this assault against disabled people?
It would halve my already tiny income, other half is from ESA, and they could kick me off that too even though I can't do anything!?

What do people think?

I loved the latest “gem” - that instead of assessments, every claimant could trot off to their GP, to have a long and involved discussion about their needs etc.,🙄

The GP would then send a comprehensive report to the DWP.

They don’t seem to understand that GPs are saying they are overworked, and that’s it’s often nigh on impossible to get an appointment, even if you’re ill.

Pie in the sky.🙄

RE therapy, I was told by two NHS consultants I need trauma therapy and something called deep brain reorientation.

Only one clinic in the entire of my city offers this. That’s an area with around about 1 million people living there.

I was phoned on the day I was referred - in June 2022.

’Our first appointments are in December 2025. Do you know if you’ll be free on a Monday afternoon?’

As my support worker said to them, ‘she’ll either have to find another supplier, or she won’t be free because she’ll be six foot under.’

Therapy on the NHS for complex MH does not exist.

And adaptive clothing is not purely for amputees - can be for children in spica casts, people with a halo frame, people in wheelchairs, cancer patients (mastectomy bras), adults with dementia (who might try to take pads off at night), adults with autism (who can’t wear clothing with labels as have a meltdown), people who are at risk of ligatures, etc…

"The country will march for gay people, black people, people from Palestine, trans people but who will come and support disabled people? Probably nobody so it will just be up to us with the irony being that many of us can’t bloody march in the first place".

You do realize that all those groups of people that you have mentioned, will have disabled members as well@Blackcats7 . So It is not true what you have said there, and it sounds pretty divisive to me, which is not helpful.

Absolutely! A system which has to tailor itself to each individual's complex needs, then respond to them with certain vouchers, grants, even paying for leisure centres to run certain sessions for them. All constantly changing and evolving.

Or just give them the money and let them sort it out for themselves.

It's pretty clear which is the cheaper option!

"Where have disabled people said they take a taxi because they just prefer it"

Somebody said their daughter struggles with public transport, so needs a taxi. That is a case of somebody preferring a taxi, but not needing a taxi - i.e. they can take public transport, but it isn't their preferred option.

"eat takeaways because they keep burning their dinner"

That was exactly the justification for their pip that somebody on a previous thread used.

Your post really struck a chord with me. It’s completely understandable to feel terrified about PIP – it’s a big deal! But remember, you’re not alone in this. We’re all in the same boat, navigating these choppy waters together.

I just wanted to say, take a deep breath and remember your worth. Applying for PIP can feel like jumping through hoops, but don’t let it get you down. You’re stronger than you think, and you’ve got a whole community here cheering you on.

Speaking of which, I wanted to share something I stumbled upon recently: https://www.mentalhealth.com/disorder/histrionic-personality-disorder . It’s important to consider all aspects of mental health when discussing topics like PIP. Each individual’s experience is unique, and understanding different perspectives can broaden our empathy.

And why do they keep burning their dinner? It's probably not because they're a bad cook!

I imagine that applies to a tiny percentage of people. I imagine most are either capable of gardening, have somebody they live with who can do it (very rare for a single person in council accommodation to have a garden rather than living in a flat), or can pay for it themselves.

"adults with autism (who can’t wear clothing with labels as have a meltdown),"

Yeah, that's the kind of thing that I don't think the state should be dishing out money for. Cut out the labels with scissors. It takes seconds and costs nothing.

But as things stand and given the level of ignorance I have decided to actually quit as my son’s carer shortly. My replacement costs are between £1800 and £2000 per week to care for my adult son. I have no intention of grappling with him onto a bus thanks very much.

My job is to keep him accessing the community and sometimes that might require an Uber.

As an example of how even using an over so fraught with difficulty - my son is highly anxious about his phone / bank account. His Pa tried to call an Uber on my son’s phone - there was a panic. My husband received a call to fetch them but the panic meant that my son had a £6 bill for an aborted Uber and my husband still had to fetch him. There was no way that my son would access a bus at night - he is convinced that he would get harmed.

Its off how we think nothing about the enormous cost of each day prisoner in this country but people have a go about Ubers for people with ASD - it’s huge ignorance because you can’t see the brain.

For the record my son could not swallow for 3 years from birth, had prolonged fits and low muscle tone - a vep assessment revealed grey matter damage. ASD is an actual real thing it’s just in the brain not in the limbs- although the body can be impacted by hypotonia. He learnt to touch his nose when he was 10 - he could not work out where it was beforehand as he had poor body space awareness etc.

So before commentating educate yourselves and don’t base it on films or tv etc. ASD is not some fanciful thing that need to be ‘educated’ out.

Let’s educate people with cerebral palsy to ise their limbs or people who are deaf to hear shall we?

There is a huge overlap with ASD / motor coordination and language etc Many people with ASD have bowel disorders - another reason for using a taxi at times ! Many have been on movicol since birth. perhaps my son could educate himself not to have constipation and block the toilet - that would be a joy!

Many have severe asthma attacks etc

In essence there is some form of brain malfunction. Hence the overlap with language impairment and motor.

So spend a day in a college for ASD better still volunteer and take a few bus journeys with people with ASD who are at life skills level.

Yes, their DD struggles with public transport not she prefers a taxi. 2 very different things.

I don't believe for a moment someone was given PIP purely because they aren't great at cooking (but could get better) vs. their disability meaning they struggle to make dinner. Even so you wouldn't get PIP solely because of that because you simply wouldn't have enough points.

Exactly! I will tell my daughter to stop being autistic and go out, do normal things. Maybe she can socialise and have a large group of friends like neuro typical adults instead of hiding in her room! Some of the crazy answers on Mumsnet is bloody ridiculous.

Need to use taxis as prohibited from driving

• I don't think anybody would object to somebody with severe physical or learning disabilities getting taxis when there's no viable public transport. People that simply prefer not to use public transport, not so much.

OK to make this simple for you - if you felt that every time you got into a bus you received an electric shock would you prefer to use an Uber!

The wiring of ASD is different. Oddly because the consultants did not know if my son had muscular dystrophy or cp etc we had a visual evoke potential test done by an NHS Neurologost. This shows the latency in the brain - signals are not conducted like normal. This manifests as ASD … we were also told he might have global delays but luckily he did not.

soemone with cerebral palsy prefers a taxi because getting into a bus is challenging.

soenone with ASD prefers an Uber because they feel like they are receiving electric shocks on the bus.

In no way was I criticising support for other groups with my comment. I was making the point that disabled people are not given the same support so bog off.

You don’t get it do you? It’s not just labels, it can be seams, zips, buttons, stitching. I’m trained to work in this field and have met many children and adults with a learning disability or autism or both who need to use adapted clothing.

You don’t get a life if you’re disabled any more, I guess. You’re owned by the state and by an angry mob who don’t realise they’re one disaster away from this existence. How dare you want a garden to sit in, go to the shop, to go for a swim or to access the correct therapy. How dare you choose fish and chips, or buy a toy for your child. How dare you wish to be warm at night. The audacity of thinking that the able bodied and minded should do what they can to help those less fortunate. How ludicrous. The able bodied will tell you what you need and they’ll run your life for you. What a country we have become. It’s the all the ‘disableds’ fault, and work, work, work, will make you feel better.

And if it doesn’t, you’ll be fucking dead, and what a relief that’ll be as it’s one less mouth to feed.

Fucking hell.

Stop the bus, I want off the world.

I think a lot of posters on here won't be happy until people with disabilities are all rounded up and shot (or sent to poor houses). How very dare they have a quality or life or aspirations.

Disability, including mental health issues, can happen to anyone at any time and some of you would do well to remember that.

I don't think anybody would object to somebody with severe physical or learning disabilities getting taxis when there's no viable public transport. People that simply prefer not to use public transport, not so much.

We could just mentally torture them instead - why not. Let them endure absolute horror - push them into an ASD shut down and let’s lock em all up in a mental asylum ( as they were called)

Only problem there is that those places in high needs mental hospitals are really really costly.

Do you think a few Ubers might be cheaper

My son bangs his head on wall when stressed with too much stimulation - he might ‘prefer’ a taxi!

How charming you are. No I will not bog off, when you are talking plain rot, and untruths.

We had this a few years ago when DLA was changed to PIP. All they seemed to do was cause a load more paperwork for useless assssors when the actual awards still stayed the same (anecdotally).

It seems to be scaremongering, surely they can't change financial payments for vouchers. I reckon this stuff is 'leaked' so people panic and then whatever changes are introduced don't seem so bad in comparison.

Actually the reality for physically disabled people is losing their tenancy if they are unable to keep their garden to an accepted standard.
It is part of many, but especially SH and council, tenancy regulations, and one the physically disabled are often reported over.
I doubt people are talking about having regular 'lovely gardening services' keeping pretty gardens for them.
More like a twice annual cut back of tree growth, bushes, self seeding laburnums, and ground clearance of brambles ect, removal of garden waste, maintenance of fences etc, that's deemed property neglect if not done, including for quadriplegic tenants and similar.
The rules take no account of tenants abilities as ANYTHING and EVERYTHING that a disabled person can't do or needs, has to be paid out of that same payment. Hence people need to be able to skimp and reuse catheter tubing or bags beyond their expiry dates, or go without heating when necessary, (just like the non disabled do too) to use the funds to cover something else.

Exactly.

I’ve worked with people who’ve been in asylums. They cram their food so fast they choke. Why? Because in the asylum, if they didn’t eat fast, they didn’t eat.

There are still thousands alive who up until the 90s/2000 or so lived en masse in state hospitals. I’ve met people who have never left hospital, and never will. Colleague worked on a ward for ‘long and lifelong stay’. Mainly elderly people from institutions.

Watch Silent Minority, History of the Madhouse, Winterbourne, Whorlton Hall… there’s a reason we fight so hard to keep people at home. Institutional care rarely works if ever. In a bizarre turn of fate, we have Thatcher to thank for care in the community. And now it’s her party that are tearing that policy apart.

Benefit and Works have a comprehensive list of the points you need to receive PIP. It is not, and never has been, a case of just not fancying doing something.

https://www.benefitsandwork.co.uk/personal-independence-payment-pip/pip-points-system

How many single disabled people live in a house plus garden courtesy of the council? Not many I’m willing to bet.

Society can’t mitigate every last thing for everyone. Some people seem to genuinley believe it should. Sometimes there is no answer, or you have to find one yourself.

We all know it can happen to anyone because probably the majority of people have some kind of condition.

The issue is the rising numbers and inaffordability. Does this projection look okay to you?

I so wish my son was not disabled I so do. I am sad that eh will cost you so much money.

When he was a baby for a while I wanted to push him and myself in front of a bus and let my husband and daughter have a good life. I will never forget that day. Luckily someone from my daughters nursery saw me sobbing and took me in and gave me sweet tea. It was an awful moment in my life - I felt like we would be the drain and stop my daughter having a good life. I felt we were worthless.

To hear people talking about people with ASD preferring a bus makes me think of 1930 Germany. I can’t bear to think what would happen to my son when I die the way that things are going and just the comments on this thread.

They want all people with ASD to stay in and not cost any more money. … don’t they realise that’s what ASD people want but even the state knows they have to ‘access community’ or it causes more cost as the care needs soar:

it’s a twist on reality.

I take my son swimming and it’s so stressful - he prefers a quiet lane. That means he tolerates more a quiet lane as he experiences actual pain when lightly touched.

When little at school kids would subtly touch him to cause him distress. He was traumatised.

I have been so tired of it all lately - so tired. I hate being a carer - I feel so heart broken almost daily. My son breaks my heart to see him try so hard. He has a place at university but we have postponed it for him to do life skills and he tries so hard and works so hard. But sadly no matter what even just catching a bus can terrify him. Last week we watched 3 good buses go by and I had to get my husband to take us home from swimming - I didn’t chose to stand there in the rain.