"My benefits assessor didn't understand my condition, they just wanted to catch me out."

My name is Lisa* and I have a diagnosis of Myalgic Encephalomyelitis (M.E.), which is a neurological condition.

My principal symptoms are neuropathic pain, migraines, balance problems, tachycardia, joint pain, muscle weakness, concentration issues and fatigue (PEM). I am a wheelchair user now living alone with my golden retriever. Unfortunately, I’ve had considerable problems getting the support that I need from the benefits system. 

Getting assessed for ESA

My Employment and Support Allowance (ESA) assessment wasn't pleasant. I think they mean to make you uncomfortable.  

The assessor was fairly hostile, I think that they weren't looking at what it was that I needed help with, they were looking to catch me out. 

It doesn't take fatigue into any consideration. If I can lift something once, it doesn't mean that I can do it multiple times. It's really for the disabled person to be very much on the ball to say, 'Yes, I can do this once, but it doesn't mean that I can do this for eight hours a day'. 

A big thing about ME is Post-Exertion Malaise (PEM), so the more I do something, the more it drains my body. I can do something for a little while and then the battery will run out. I didn't feel like they had an understanding of that.   

It’s important to have an assessor who understands my condition

I don't feel that the assessor was particularly knowledgeable about my condition or sympathetic. That doesn’t feel right.

I feel that they just put anybody into the role and when you're introduced they say, 'I'm a healthcare worker'. Now that could be anybody, that could be a physio, could be an OT, could be a doctor, could be a nurse, and you really don't know who it is that you're talking to. 

“To have somebody who says, 'I understand what it is that you're going through' but also to understand that there are different degrees of any condition.”

There's a lot that isn't known about ME, so it would make a big difference to have an assessor with knowledge of the condition. To have somebody who says, 'I understand what it is that you're going through' but also to understand that there are different degrees of any condition.  

A devastating impact

The initial assessment was when my mum was alive, and I lived with my parents. It gave me just enough to live on and to contribute to my household.  

The problem began when my mother died. She was my principal carer and helped me with everything from nutrition to dressing to filling in DWP forms. My father decided to sell the house and move away. 

When things changed for me, the government really let me down. There's no advice out there for people who are relying on their parents and then suddenly lose their parents. It's been devastating.  

Throughout the pandemic, I felt like I couldn't get hold of anyone. I was really isolated. I was shielding. I felt more alone than ever. 

My appeal and what comes next

I am currently going through an appeal because I'm stuck between a cancelled Universal Credit application and legacy benefits, so I don't have enough to live on. This has been adjourned twice and it’s very hit or miss whether my appeal will be successful. 

I feel very confused by the entire process. I never regarded myself as a stupid person. Before my illness I was a teacher. But the benefits system is so confusing, you really don't know what applies to you. I feel that they're deliberately unclear about this as well. They want you to get as little as possible.  

I just want to try and get enough to get by. Enough to pay for care, food, basic bills, a roof over my head, basic human dignity.  

The only way I could remain independent was to get myself into debt.  

My power chair is experiencing difficulties. I've got problems with the motor, and I can't afford to fix it. If I can't get my power chair fixed. That's it, I'd just be stuck indoors. 

I can't afford food, so I'm relying on donations and the food bank. When winter comes again, there will be no money for heating.  

I'm really concerned I will struggle to support myself. As things stand, if the tribunal doesn't go my way, I will lose my home. And if that happens, I have nowhere else to go.   

Let’s call for a benefit system that works for disabled people, not against. Sign Scope’s petition for Disability Benefits Without the Fight.

*Name changed to protect privacy.