Blog post from Sally Callow, MD of Stripy Lightbulb CIC.
This was an article that was originally posted on my LinkedIN page in 2018, when Stripy Lightbulb CIC first launched. I re-posted it earlier this week as it struck me that nothing has changed. I apologise to the people living with Myalgic Encephalomyelitis who contacted me to say they were unable to read the article as they no longer had an active LinkedIN account. I doubt this would occur to most non-disabled or non-chronically sick people, there is often no desire to keep LinkedIN accounts live; notifications of job opportunities and industry news are constant reminders of the career and network lost to ill health.
Here is the original article from 2018 –
This is a business-related post but I’ll get to that by going around the houses first!
Yesterday, I got the results of my PIP assessment that I had 6 weeks ago. The DWP have said I am ZERO on their disability scale.
I have had M.E/C.F.S for 12 years and have never claimed disability financial support or a blue parking badge (I simply don’t drive when my M.E/C.F.S has flared or get someone to drive me). My disability causes me to only be able to work 20 hrs per week and I have to be cared for by my parents during ‘bad’ hours, evenings or days.
I hold monthly support groups for Portsmouth M.E/C.F.S patients in a local disability centre. The supportive staff there encouraged me to apply for PIP as I am ‘entitled to it’ as a disabled person. I’ve seen so many negative stories about PIP online that I didn’t have high hopes of a positive result but I went through the process anyway. If nothing else, it allows me to empathise with other ME sufferers who have gone through the same miserable process.
On the day, the assessor assured me that he knew what M.E/C.F.S was and that he knew it was a fluctuating illness. He also said he knew that just attending the appointment would ‘wipe me out’. Great! Someone who knows what they are dealing with.
However.
My assessment report states that (a few snippets) –
- I have NO diagnosed cognitive impairments (wrong! An element of M.E/C.F.S is brain inflammation: memory loss, concentration issues, word finding abilities are a few of my cognitive impairments), I struggled for words during the assessment and kept losing concentration and asked for questions to be re-explained).
- I have the normal rate, volume, amount and content of speech (wrong! Slurred speech, croaky voice, lack of ability to communicate are regular issues for me). I was slurring my speech during the assessment and my voice was a bit croaky-as if I had a sore throat).
I find it absolutely ludicrous that despite being a global M.E/C.F.S advocate for over 4 years, highlighting my DAILY struggles with the condition, the DWP have summed me up in one 45 minute assessment as having zero disablement.
One particularly annoying segment of the report said that the postgraduate degree I successfully achieved 12 YEARS AGO is proof that I do not struggle with reading. During the assessment, the assessor agreed that it was a ‘heartbreaking waste’ of my talents that I can’t even concentrate enough to read page-long magazine articles now. I read in small chunks of text when I am working.
This article – Almost impossible to get a fair PIP assessment highlights the disabled community’s fight at the moment.
In business terms, this is why I will be training businesses on the true nature of M.E./C.F.S. with Stripy Lightbulb CIC so they can support their staff adequately and keep them in employment for as long as possible. Within the M.E./C.F.S. community, there are a lot of very talented people who have had to leave paid employment due to inflexible working patterns and a lack of understanding in the workplace.
Businesses will save money by not having to go through a lengthy recruitment process and having to train new staff. I know so many M.E./C.F.S. patients who would love to still be working but simply can’t fit in with established working patterns. They are now forced to go through the dreadful PIP process and many, and I mean many, are unsuccessful with their claims.
75% of M.E/C.F.S patients have ‘mild’ to ‘moderate’ severity. I need to stress, there are a large number of patients in this category of severity who would simply be unable to work. However, people who have the same severity as me need to stay in employment, even if it is only part-time hours, because the alternative is PIP and a fight to be believed by the DWP.