What do you want from Scope?

System

This discussion was created from comments split from: What do families want from Scope?.

onebigvoice

Hi everyone,

All the above, are all deserving points and should all be considered, but is this what we expect from the NHS and the government? What we all want and need is to understand is WHY we don't?

It's all because we all lack a voice or a person to present our cause, not to say why we should have this or that, but to say why are you not supplying the help needed by everyone, without having to fight, beg, plead to get help we are entitled to.

Since the pandemic the roles of people and what they should be doing had taken on a different meaning. Where is the "benefit" of being told you need home help for a child or parent after an operation when a Decision Maker can override the financial costs at an assessment by saying that they saw no such problems at the assessment?

All of a sudden you are having another assessment by a receptionist to say you will not get this or that as we have seen people worse off than you who don't get help, so I would not bother.

Make accountability the key issue. Make every assessment signed, by the assessor, show the supporting evidence. Make them understand that this report is written by them, and will be used by others, so that if the content of the report is challenged they need to respond with the details of how they made their decision within the report, and the supporting evidence used. We should not just state that we have used all the evidence available.

All this is in the Charters and Laws surrounding assessments and the decisions made by the DWP and PIP.

We all need to get back what we are entitle to, so my suggestion, is suprize inspections during an assessment, the time scales used to gain access to the system, the time scales taken to rectify the problems and the time scales to revisit those recomendations to the assessment comany and the DWP are really being carried out. Failure to carry out or rectify the issues will result in the contract being reviewed, large fines for both the company and the assessor/decision maker, both from the government, and on a personal level to those affected by that decision.

Sounds harsh? But this is what we are paying for every at every assessment completed by the NHS, yet we are all being called liars as to what we state in a PIP 2 Form. So how or why do we allow them to call the Doctors and Nurses of the NHS Liars when a sick certificate issued by a Doctor is not accepted as the truth from a patient as support.

BRING BACK ACCOUNTABILITY. This would never happen in the NHS as they already have access to your medical history as they write in it for ALL TO SEE. and use every time you attend.

orangeapple57

Absolutely "accountability" is key. As a granddaughter of a survivor of the a bomb tests I have seen decades of gaslighting and government misdirects. My mother with chrones would never have got to 12 years of being called a hypercondric and I wouldn't have been left abandoned with a ruptured ectopic breastfeeding when nill by mouth. I wouldn't have been told the pain was in my mind when my merina slipped nor would I have been past from pillar to post trying to resolve it! (Literally spent all day on the loop bus around Thanet!) I've seen the worst the NHS and government have to offer with all the safeguarding and support designed to prevent abuse absent and negligent. As a result I'm blamed for having a moral compass and not suing the NHS to deprive it further of what little resources it has left. I'm hoping that before Xmas I might just resolve the access dfg I waited 8 years for only for cowboys to concrete over my dpc then claim "nothing was wrong with the installation." I'm exhausted with getting the policy and laws implemented! I can't even access my polling station because I need to just get a postal vote instead! It's disgusting!

onebigvoice

There is a program on at the moment to contact your Local MP and let them know you are not happy.

Don't wait for someone else to respond. If everyone here did exactly that by simply saying the cost of disability costs more and should be looked at in line with the recent changes to the Social Care Act.

orangeapple57

Lovely idea I've been politically lobbying for nearly 12 years now and know if an MP is responsive it's a good idea to get them involved. Also your local councillor can be very helpful.

Community_Scope

Note from the online community team.

I have split this discussion off from the Family Service poll as I want the conversation to continue without taking away the focus on families in the other discussion.

egister

https://forum.scope.org.uk/discussion/comment/918679#Comment_918679

Very true point! People exposed to radiation (except for treatment and medical examinations) are invisible to the goverment. Scope I think I should pay attention to this. Radiation is a bomb for many generations to come.

Amaya_Ringo

I'm worried about the potential 'survey' about costs of disability. I have problems calculating financially and managing variables, so I don't even know if I will understand the questions, let alone answer them - and I worry autistic folk will be left out as a result. As the disabled group least likely to be employed and a group targeted by Stride et al in their benefit assault earlier this year, I have to spend a considerable amount of mental energy compartmentalising the stress and uncertainty to function and it's quite exhausting. I have moments when I am scared to spend any money, even on things I need, because of all the press surrounding PIP and expenditure. I know Scope are involved in a panel relating to this survey, so that's something that's important to me. I don't want us to continue being invisible in these discussions.

I go to work, so I'm one of the 22% of autistic people "doing things right" according to govt rhetoric; at the same time my job is constantly under threat from govt cuts, local transport cuts have severely restricted my independence, and the support in my area was shut down years ago due to costs. I would love to be spending some of my PIP money on mentoring support, but it no longer exists in my locale.

I want Scope to make sure the government treat autistic people fairly. A lot (not all) of people with physical disabilities are NT and thus their needs are easier explain to NT decision makers (whether or not the support is provided). Those of us who are ND and don't have a physical comorbidity that they can actually SEE are constantly vulnerable. I have lost so many opportunities from being told I don't need help, even when it's obvious that I do.

Echoing what was said above, too - I want the DWP held accountable, not just for all the people whose lives have been lost or destroyed, but for all of us who have been treated like criminals because of a system lacking in proper disability training. Until the organisation has been fully gutted out, reorganised and presented with some kind of system to monitor their behaviour, they should not have any additional powers. We know PIP has 0 fraud at present, so there's no justification for the conflated statements being made around benefit fraud and the 'need' to monitor accounts or 'check eligibility'. Aside checking we're not living abroad, such checks can tell the DWP nothing about PIP claimants. Many of us also spent months or years proving our eligibility via traumatic tribunals. It's like having an obsessive stalker, rather than a support system trying to equalise disabled quality of life.

I'm a positive person generally and make the most with the life I have, but I am well aware of the things that I have missed out on due to decisions beyond my control. I have strategies for the 50% of autism that's in my brain. The 50% of it held back by social convention is the bit I need Scope to be acting on :)

I've also had many conversations with my MP about disability rights, PIP, etc, over the last ten years or more, with mixed responses, including right before the election. I don't think my doing that would help much at this point :(