Discrimination
There are some cases when being treated unfairly because of certain characteristics is illegal under the Equality Act 2010. This kind of unfair treatment is called discrimination.1 The Equality Act 2010 says you cannot be treated differently or unfairly because of:2s4 EA 2010 •age;
•disability (which can include mental health problems);
•gender reassignment;
•marriage and civil partnership;
•pregnancy and maternity;
•race;
•religion or belief;
•sex;
•sexual orientation.
Discrimination can be unintentional, but it is still illegal. The discrimination could be a one-off action from one person, or the result of a rule or policy. Discrimination includes not putting reasonable adjustments in place when they are needed.
The Equality and Human Rights Commission has more information on disability discrimination and how to challenge it.
Alex, Jo, Benni and Caroline’s experiences
Alex, Jo, Benni and Caroline told us about their experiences of applying for benefits. Their experiences show how different the benefit system can be for individuals with mental health problems depending on the kinds of prejudice they face in the process.
Alex has severe anxiety and obsessive compulsive disorder (OCD), which can be triggered by situations where she feels embarrassed or judged. Alex told us this makes it difficult for her to speak to people over the phone or in person.
‘I overhear people in public slating people who claim benefits because of mental health issues, saying they’re making it up because they are lazy and saying “we’ve all got problems but we work”. It makes you feel incredibly insignificant not being understood.’
For Alex, this stigma was not just from members of the public. She also saw it reflected in the people managing her benefits when she applied for universal credit (UC).
‘I got the impression when talking to professionals about my claim that they didn’t believe me. They wanted more evidence and asked me a lot of personal questions. It’s very nerve wracking for someone who has an anxiety disorder.’
Jo gets UC and personal independence payment (PIP) and had very different experiences with each service based on how much they understood her mental health needs.
‘Universal Credit were amazing with my application. I spoke to multiple different people and they were all really understanding and helped me apply. The work capability section took a long time, but I was awarded it based on the application and contact with my GP. It was great not having to have an interview as that would have set off my anxiety.’
Jo felt that the people handling her UC claim were ’more compassionate about mental health struggles’ than she experienced when applying for PIP.
‘Honestly, applying for PIP for mental health was horrible and very stressful… they don’t understand how much mental health impacts physically as well as mentally. PIP is a very long process. .’
Jo had to appeal her PIP decision as many things the assessor wrote were incorrect or they had misunderstood Jo’s answers.
Benni is also on UC and found her experience was different in different parts of the country.
‘I had support with setting up universal credit as it’s quite complicated. I’ve found universal credit where I applied in the Midlands to be really understanding – they haven’t yet put me through a formal assessment as they judged my capability to work based on the form and information about my PIP. Even before they officially judged my capabilities, they just asked me to do more of the same simple tasks that I was already doing, such as attending groups. I found that universal credit teams where I applied further North did not want to help with anything that was not immediately in their remit.’
Caroline had a very positive experience applying for both UC and PIP. Caroline told us she knows she is fortunate that this was her experience. Caroline’s experience shows how simple the benefits process can be when you have support and when the people within the system understand mental health.
‘I had an assessment for universal credit which said I didn’t have to work if I didn’t want to due to my mental health and physical health. With PIP, I just sent in all the paperwork and they spoke with my CPN [community psychiatric nurse] and I didn’t need a further assessment. It was accepted at enhanced rate for both daily living and mobility.’
Hayley’s experience
Hayley has been on benefits for 15 years and we have used some of her quotes in other parts of this Handbook. She first applied when her mental health problems made it too difficult for her to work. She was experiencing agoraphobia, which meant she could not leave her home. She was also experiencing symptoms of obsessive compulsive disorder (OCD) that meant she spent up to 20 hours a day in ‘checking rituals’.
‘At my worst I was going through OCD checking rituals for safety behaviours 20 hours a day. I was checking gas safety and door locks. I would check physical lumps on my body and think it was cancer. I had health anxiety and severe depression.
I had intrusive thoughts all the time. I would wave at a neighbour and say “hi”, but in my mind I became convinced I had stuck my fingers up at them and told them to f-off. So a simple wave at a neighbour and I could come in and sit for four hours and think it over. I’d sit for four hours thinking “I’m sure I waved, I’m sure I waved”.’
As she was not working, Hayley needed financial support. She researched what benefits she was entitled to online. One of the benefits she applied for was personal independence payment (PIP). Hayley found the process of applying difficult from the very beginning. She felt that the questions on the application applied more to physical health conditions, and had difficulty explaining her experiences. For example, for the question around being able to prepare food, Hayley said:
‘Well, can I go to the kitchen now and prepare some food? Yes. Do I spend three weeks after worried that I have killed someone with food poisoning? Yes I do.’
Her first PIP application was turned down. She appealed the decision and went to tribunal.
‘When I went for the tribunal my husband said he would come with me, but I said I want to go in on my own. Because I need people to throw away their preconceived ideas of what mental health looks like. I deliberately went in on my own and they must have thought “she is here on her own but she is saying she needs benefits?”. But, you know, they needed to throw away their preconceived ideas of me. Some things that are really difficult I can do really well, and some things that are really easy I can’t do at all. So whatever you’re thinking about mental health, just put it to one side.’
After stating her case, Hayley was awarded PIP. Four years after this, Hayley had an unexpected heart attack. As a result, she must take medication long term. Even though her heart attack was serious, Hayley says her mental health problems have always been worse than her heart problem. However, Hayley says she began to notice that now she had a physical health problem, the benefit system and the healthcare system began to treat her differently.
‘I went to the doctors with my mental health and he kind of didn’t get it. And then when I went to him after the heart attack he was completely different. I said to him “my mental health is worse than my heart attack. You didn’t get that. But because I’ve had the heart attack you get it”. I can see that difference.’
When it was time for her PIP to be reviewed, Hayley noticed this difference in the assessment as well.
‘I say to them “please forget that I have had a heart attack. It is my mental health that I am here for” but every time I get awarded PIP I am sure it is because of my heart attack. It feels hopeless. All of a sudden they see medication and they see this, that and the other. I get misrepresented by the heart attack.’
Hayley has also been impacted by the stress of the benefits system. She has had to appeal her PIP decision twice and has been for about 12 assessments for both her PIP and employment and support allowance (ESA). Each time she gets a form, it takes Hayley up to 12 hours to complete it. Each time she goes for a review, she assumes she will have to fight the case again in appeal.
‘As soon as the letter comes through the door I feel sick. Throughout the whole process I feel sick and as if I won’t be believed.’
Hayley has been informed that she may be eligible for other benefits, such as universal credit. However, she cannot manage the idea of having to go through another application process and handle another system.
‘I said to just leave me alone. Don’t stir up the hornet’s nest. Just leave me as I am. I am possibly eligible for a higher rate or a different type that comes with more benefits, but I’m just like ”just leave me alone”. It’s at that stage.’
Hayley is managing on her PIP and ESA currently. Her husband also gets carer’s allowance as he supports her. She has recently had therapy that has made a huge difference to her mental health, but she still needs support. Despite her struggles with the benefits system, she is an advocate for people applying for what they are entitled to.
‘Don’t give up. You deserve to be believed. Do whatever you can. You deserve to be believed.’