Petition Closed

Change the point system in Benefit Calculations for Invisible Diseases

This petition had 2,187 supporters


People with disabilities are now faced with a point system when applying for benefits.

This point system is currently only working for people who are visibly disabled. People with a disability which is not visible to the eye are turned away now and will have no means to pay for rent, food, etc.

Take IBD for example. Inflammatory Bowel Disease. People with Crohn’s Disease and Ulcerative Colitis. My partner has Ulcerative Colitis, so this is something that is very close to my heart.

Most of the time people with these diseases are lying in bed at home in pain. But because you can’t see the illness or disease, the person who is supposed to assess you will tell you you are able to walk 30 steps. Or you are able to start new tasks. They won’t see that you’re spending most of the day (and night) on the toilet. They don’t see the pain you are in. They will only tick some boxes on a sheet that is made for them to use, made by someone who has no idea how to assess someone with a disease like this properly. These assessments are done by people who have no compassion. They only see boxes and if you can or can’t do something. 

There is a physical and mental questionnaire, which the assessor will fill in after seeing you for about an hour. An hour in which they will decide how you live your life and how they think you can survive in life. An hour in which they decide about your life and if you should get some money. Which is not even a lot of money. The limited capability for work allowance is currently £126.11 per month, and the limited capability for work & work related activity allowance is £318.76 per month for 2017/18.

On this Work Capability Assessment you will find the following in Physical Functions:

Moving Around; Standing and Sitting; Reaching; Picking things up and moving them; Using your hands; Speaking, writing and typing; Hearing, or understanding, messages; Getting around safely; Control of you bladder, bowels or stoma; Staying conscious while awake.

And the following in Mental, Cognitive and Intellectual Functions: 

Learning how to do tasks; Being aware of danger; Starting a task and finishing it to the end; Coping with changes; Coping with getting about on your own; Dealing with other people; Behaviour with other people.

You have to score at least 15 points to be able to receive some benefits.

Basically, because you have a disease that you can’t see, you shouldn’t be able to walk around. Or move around on public transport, write or type a letter, pick up a remote control, crossing the street, talk to other people, sit on a chair for 30 minutes, etc. What does this have to do with bowel disease, or any other invisible disease?

A big problem with a disability like this, is that it is so unpredictable. Of course you want to work! But you don’t know how you feel from one day to the next. You can’t hold down a job, because one day you are in bed with severe pains and cramps, and the other day you feel alright. Most employers won’t offer jobs to people with IBD, because of the unpredictability.

When you go to a work assessment appointment and you have a bowel disease, you are already anxious from the moment you get the letter in for your appointment.

‘How will I feel on the day?’, ‘Will I need to pop myself full with medication, so I don’t feel the urge to go to the toilet on the way?’, ‘What if I need to use the toilet on the way there?’, ‘What is the quickest route?’, ‘What are they going to ask me?’

All these questions you ask yourself, but the assessor doesn’t know any of this. They see a reasonable healthy person in front of them who managed to get to the appointment. They don’t know what it took out of you to make it there. They see someone who can walk and talk. They don’t see someone who has been anxious this whole time to meet someone they don’t know, who will make a decision about their life!

A study has found that the DWP’s ‘Fit to work’ tests cause permanent damage to mental health. The research, conducted by academics at Edinburgh’s Heriot-Watt and Napier universities, found that the Work Capability Assessment experience “for many, caused a deterioration in people’s mental health which individuals did not recover from”. It also established, through dozens of in-depth interviews of people who had been through the tests, that “in the worst cases, the WCA experience led to thoughts of suicide”. Mental health charities said the interviews’ contents “reflect what we hear from people every day”.

I would like to ask you to sign this petition to have this points system changed and actually listen to people. Look at the paperwork they bring with them and all the medication they need to take everyday to be able to function. For them to be treated with respect and compassion, not as another number on the list of the day.

Remember, not all disabilities are visible!

Thank you for reading and signing this.

Kind regards,

Cynthia Veenstra



Today: Cynthia is counting on you

Cynthia Veenstra needs your help with “Change the point system in Benefit Calculations for Disabilities”. Join Cynthia and 2,186 supporters today.