Russell Fleming, Content Manager, ME Association.
Cwtch a small Pembrokeshire-based charity has developed a novel and effective way for healthy people to experience what it feels like to ‘walk in the shoes' of someone who is chronically ill.
They wanted to develop something that would be more effective than just talking with people about invisible illnesses and came up with this symptom-suit. It's still being developed, but Stephen Crabb MP recently tested the suit and you can see how he got on in the video below.
I spoke with Beth Job last week – Beth is one of the charity's founders and has M.E. – as I was particularly interested in this idea. The MS Society several years ago had attempted something similar and created several videos showing ways in which healthy people might experience the symptoms of multiple sclerosis.
I think the symptom suit is excellent. It can't replicate every symptom or the extreme severity of symptoms that we might experience, but it is proving effective. And when people take it off, the relief they feel makes them empathise even more with someone who has a life affected by a chronic condition.
Cwtch are holding a campaign, ‘Walk in my shoes‘ and are using the suit as part of their efforts to raise awareness of invisible conditions. They have members who suffer from a variety of conditions – from M.E. to MS to Cancer – each of whom has contributed to the suit's design.
The following article appeared recently in the Western Telegraph and provides more background. All of us here at the ME Association would like to wish CWTCH the very best of luck with their campaign.
Stephen Crabb wore a symptom suit to experience life with chronic illness
BACK pain, poor eyesight, itching, balance issues, leg stiffness: just some of the lifelong symptoms a Pembrokeshire MP had a glimpse of when he visited chronic illness support charity Cwtch.
Stephen Crabb MP’s visit to Cwtch’s base at Cashfields Community Centre, Haverfordwest on Friday, October 12, saw him wearing the charity’s symptom suit.
Donning a welly on one foot and a high heel on the other simulated balance issues for Mr Crabb, while wearing weights around his shoulders gave him the impression of what it is like to live with neck pain, and thick glasses simulated blurred vision.
“I don’t know who first thought of the symptom suit but believe me it’s a very effective way of giving people some insight into the pain and discomfort those with chronic conditions suffer every day,” said Mr Crabb.
“I must have felt a dozen different pains and uncomfortable sensations, but unlike those sufferers I was able to take the suit off. Many people can’t get any escape from the chronic conditions.”
The MP became the first volunteer for the charity’s Walk in My Shoes campaign after agreeing to wear the symptom suit when he visited its stall at the county show in August.
Cwtch members also questioned Mr Crabb about the government’s record on Personal Independence Payments and criticised the assessment system for making a PIP claim.
Beth Job, one of Cwtch’s founders, read out a statement from a member about how they felt degraded by the treatment they received from claims officers and doctors during the process.
Other members shared issues they had, including how assessments do not take into account that people with chronic illnesses can have good days where they are able to work with ease, and bad days where it is a challenge to get out of bed.
Mr Crabb acknowledged the assessment system was not perfect, and said work needed to be done to make sure so many claimants could receive PIP without having to go to a tribunal appeal.
The MP thanked Cwtch members for the practical points they raised about PIP and praised the charity’s work.
“Cwtch is a great example of a small but growing Pembrokeshire charity that’s doing innovative things to support its members,” he said.
Cwtch has regular meetings at the Cashfields Community Centre and hosts a support chatroom which anyone with chronic illnesses can join on Facebook.