Ignoring my MH and triggers. I feel invisible.

DrMeredithGrey

I have recently had to report a change to Universal Credit about my sons DLA rate of care changing from middle rate to higher rate. This change was effected on 22nd February 2022. I didn't know at the time to report it as the information to do so isn't widely known or easily accessible. This meant I was being underpaid for my son by £280 every month. His needs are significant and he attends a specialist school as a result. I happened upon the information by pure chance last Sunday and immediately reported it the following morning. I have mental health issues that impact my ability to effectively communicate with people or organisations that hold any type of authority. This could be teachers, managers, government employees (such as UC and DWP). This places me in a vulnerable position when I have to do so as I'm unable to stand up for myself or vocalise that I'm uncomfortable or disagree. I have extreme fear of authority stemming from childhood trauma. I have been in therapy for the last 24 weeks.and still have 3 more.months of therapy left before starting another form of therapy called EDMR therapy afterwards, to try and manage this healthily. 

Even talking to UC on the phone results in me becoming physically sick, loss of bladder control and other anxiety symptoms such as crying and panic attacks. When I call them each time I declare my mental health and how it affects me so they are aware I may need breaks to be sick or compose myself with grounding techniques. 

I declare the same everytime on my journal entries too. After asking for help to report the change in DLA Rate to them I was asked to attend a further evidence appointment and bring in the DLA Award letter and one other document from a list they provided, which ended up being a copy of my discharge mum and baby letter from the hospital when my son was born 6 years ago. I told them I couldn't attend the appointment in person as it would put me at a disadvantage due to my mental health and having to be in a environment which would immediately make me vulnerable. I don't have any family to do this for me either besides one friend who ended up having to take the day off.work to do this on my behalf and attend the appointment to give them the documents. 

To only find out today that the UC agent on my journal declared the incorrect change. She put it under childcare costs and never changed the DLA Rate from middle to high care. That has now resulted in a different agent correcting this, however I am now being asked to attend ANOTHER further evidence appointment again and have stated I will not be paid UC for my children until this is received. I called the UC Helpline again today and the agent over the phone was horrified at the journal entries by staff to me, the incorrect changes which caused delays and the complete ignoring of my declaration of my mental health. It takes so long to even get a response from them in my journal. The phone agent couldn't understand why I was being treated so poorly. She has also tried to help by adding her own notes to my account expressing her experience with my mental health over the phone and that she heard me being sick and having a panic attack because of having to be on the phone with them again when it affects my mental health.

What can I do to escalate this and what are my rights here? I also have paperwork from my GP explaining my mental health and vulnerability. I feel unseen by the journal staff and feel they have directly caused me to have a trigger set off due to ignoring my mental health declaration and effectively creating a barrier for me to receive the funds towards my sons disability, through their ineptitude and ignorance. Please help. I feel a bit hopeless.

Spoonbill

Not a solution to the problem, but could you seek community mental health advocacy to support you through meetings etc? You could try asking Mind or Rethink to help you find local services (Pohwer, The Advocacy People (formerly SEAP)) and Voiceability are the big ones). Alternatively/also a carer's organisation nearby may be able to provide advocacy while understanding that side better?

Cher_Alumni

Hi @DrMeredithGrey

I'm sorry your post initially didn't receive many replies. How are you now getting on? Have their been any developments?

Your post really struck a chord with me and spoke to the difficulties disabled people face when accessing the reasonable adjustments they need. These barriers, on top of navigating a complicated benefits system, cause lots of needless emotional labour. I'm sorry you had to keep persevering against so many obstructions.

If you haven't escalated this already, you can follow the Complaints procedure guidance as set out by the government. 

Please let us know how you get on and wishing you and your family all the best. 

Spoonbill

@DrMeredithGrey ps in case useful also just read this, too