Stroke Survivors Tattler: Would a Jet Pack Enable You to Live Better? Our Next Tweetchat June 16th at 5pm BST!

Saturday, May 30, 2015

Would a Jet Pack Enable You to Live Better?
Our Next Tweetchat June 16th at 5pm BST!

May 20, 2015

Since November last year, I’ve been working closely with the charity Devices 4 Dignity to conceptualise, plan and deliver a unique patient-led event to better understand patients unmet needs, who are living with long term conditions and it got me thinking. Why don’t we have a #strokerecovery tweetchat on how we can better help recovering stroke survivors, live more independently, in their day-to-day lives? Let’s remove ‘dis’ in disability and see if we can help stroke survivors, their families, therapists, researchers or companies come up with ideas to enable people more.

When I think of basic living activities that we do everyday like bathing, washing, dressing and going to the toilet. There are also instrumental activities such as preparing meals, housecleaning and managing finances. Finally, there are meaningful personal and leisure activities like mindfulness, socialisation, or walking the dog either on foot of with an affordable, suitable mobility scooter!

Over the years, I have delivered a few speeches on assistive technology I think of some of the things we have been told over the years, which you too may have come across.

‘I wish my panic alarm was waterproof and it looked less medical’
or
‘I wish I could remove my underwear with one hand when I go to the loo.’
or
‘I wish I could switch off all my lights and switches with one go.’
or
‘My catheter is so fiddly to fit’
or
‘What would help me improve my speaking voice?’
or
‘My bathroom looks like a hospital WC!’
or
‘I struggle to open my medicine packets.’
or
‘I feel so invisible in my wheelchair.’
or
‘I am so low. How to I help myself meet other stroke survivors who understand.’
or
‘I am physically struggling with my toddlers, can anything help me?’
or

‘I’d like to clean my house myself.’ (Not something that remotely bothered Kate Allatt by the way!)
or
‘I can’t cope with the household bills.’
or
‘How can I take control of my physical recovery? Is there some sort of exercise plan for me I can follow so I can walk again on my own?’

These are just some comments we’ve come across in people pursuit of trying to take control, enablement back in their own lives. Why, for example, do we not have an ‘Amazon-type’ shopping service which allows patients to input their unmet need and it throws up a series of approved companies/products that could help. Also, why do we not make some of the assistive technology more affordable with more finance and leasing options ? For example, we buy sofas on higher purchase and most people rent, as opposed to owning, cars now?

We are absolutely delighted to welcome two new hosts to our tweetchat – @Sas_Freeman, stroke survivor, mentor and speaker; and @jo_Howe psychological researcher into chronic stroke rehabilitation at the University of Birmingham.