Epilepsy Advocate. 29 years experience of living w seizures. Epilepsy Awareness professional. PPI for #ExeterNurse MSci Course. Views my own.
Joined November 2010
- Tweets 2,352
- Following 569
- Followers 963
- Likes 2,362
182 Photos and videos
Jan 21
There are moments at work that genuinely stop you in your tracks.
I’m incredibly proud to say I recently delivered awareness training for @ChelseaFC - first @premierleague club to be epilepsy aware - trailblazers!
#EpilepsyAwareness #Epilepsy
chelseafc.com/en/news/articl…
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26 Sep 2025
The @epilepsyaction @DoodleDay auction is now live! From a portrait of Sir David Attenborough to cute pics of animals, an Ab Fab Doodle from Joanna Lumley, and cartoons by RW Alley (Paddington) and Staz Johnson (Marvel), there’s something for everyone!
ebay.us/m/uxf5u3
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Simon Privett retweeted
30 Jul 2025
We’re thrilled to launch a limited-edition merch range, designed with Olivia Colman herself, to celebrate #NationalDoodleDay based on her doodle. Preorder your merch today: brnw.ch/21wUv1N And stay tuned… there’s so much more to come!
#OliviaColman #DoodleDay2025
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8 Jul 2025
It’s been too long. Successive Governments have failed to act on the findings of the report, leaving affected families without the redress they need. It’s time for @wesstreeting to step up and deliver for those affected by Foetal Valproate Syndrome.
8 Jul 2025
5 years since the Cumberlege Report.
No redress. No justice.
Becci, Susan & Anna have a message for the government.
Watch now: youtu.be/iPS5gxmPLbw
Write to @wesstreeting and demand action.
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Simon Privett retweeted
26 Jun 2025
Our 'If I Told You' campaign shows epilepsy is more than seizures for many like Isabella it affects love, friendships, and daily life in ways many don’t see.
Our new video explores this, watch now: youtu.be/DMoYoH9Civs?feature…
Read Isabella's story here: getsurrey.co.uk/news/health/…
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Simon Privett retweeted
26 Jun 2025
🚨 Urgent PIP Update! 🚨
Thanks to YOU, we’ve reached 40% of MPs with our #DontTakeThePIP form! 🙌
But the vote’s next week – we need one final push:
✅ Fill in the form if you haven’t
✅ Ask your MP to vote NO
Let’s protect PIP – together
epilepsy.org.uk/DontTakeTheP…
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Simon Privett retweeted
28 Jun 2025
We stand with our ambassador Paula McGowan as she and Tom mark a major milestone in their campaign for safer, more personalised care. Find out more with our resource for people with epilepsy and learning disabilities: epilepsy.org.uk/professional…
bbc.co.uk/news/articles/cd97…
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Simon Privett retweeted
24 Jun 2025
Thank you to Helen Maguire MP for raising awareness of epilepsy in Parliament. Your voice helps bring much-needed attention to the challenges faced by those living with epilepsy, and we’re grateful for your support. #DontTakeThePIP
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Simon Privett retweeted
18 Jun 2025
What would your boss do if you told them you have epilepsy?
👔 Workplaces must be safe for everyone—with or without epilepsy.
👉 Watch, share, and challenge stigma where you see it.
#EpilepsyAtWork #ChangeTheNarrative #EpilepsyAwareness
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17 Jun 2025
If you follow me, you know I have epilepsy. But what if someone else you know has epilepsy but hasn’t felt confident enough to share it? How would you react?
#Epilepsy #EpilepsyAwareness #ChangeTheNarrative #EndTheStigma
16 Jun 2025
If I told you I have epilepsy… how would you react?
💜 Watch, reflect, and help normalise the conversation.
👉 Please share this video and help us change the narrative.
#EpilepsyAwareness #ChangeTheNarrative #EndTheStigma
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7 Jun 2025
Delighted to see @neuronostics shortlisted for a SPARKies People’s Choice Award.
Use the link below to vote and make sure epilepsy tech is recognised!
share.hsforms.com/1HDhtDrXyT…
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Simon Privett retweeted
22 May 2025
📢 It’s National Epilepsy Week — and we’ve got a message for the government: please, don’t take the PIP.
📮 We’ve delivered a letter to the Chancellor asking her to rethink these plans.
📢 Now we need your voice too. Go to epilepsy.org.uk/DontTakeTheP… and find out how to get involved
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Simon Privett retweeted
22 May 2025
A big thank you to @AndyMacNaeMP for raising the impact changes to PIP could have on people with epilepsy this #NationalEpilepsyWeek.
We are calling on MPs to oppose these changes #Don'tTakethePIP
brnw.ch/21wSQ7p
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17 Apr 2025
Living with uncontrolled epilepsy in the midlands area? @SMQB_UoB at Birmingham are looking for volunteers for a really interesting study into the effects of stress hormone cortisol on seizures. Email I.marinelli@bham.ac.uk for more info or to volunteer!
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17 Apr 2025
For any of my network in or around Bath who might be interested.
17 Apr 2025
Epilepsy Action and researchers from the University of Bath would like to speak to people with epilepsy and their carers about new developments in neurostimulation. If you'd like to find out more, or take part in an online focus group, please visit:
mcrbkba1yzj.typeform.com/to/…
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Simon Privett retweeted
14 Mar 2025
Sir Kier Starmer has called the benefits system "unsustainable" ahead of the upcoming Spring Budget.
Changes are expected to the welfare system which is being criticised for pushing disabled people, including those with epilepsy, into poverty.
Read more:
epilepsy.org.uk/news/starmer…
ALT Keir Starmer, British Prime Minister
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7 Nov 2024
I’ve signed. If you’re affected by epilepsy in any way, I would encourage you to do so too. If you aren’t affected by epilepsy, but care about the effects on those valproate has harmed, sign. If you don’t care, well, that’s on you.
7 Nov 2024
Please sign this petition calling on @DHSCgovuk to provide support for the families of those harmed by #valproate.
With MPs and Lords including @CatSmithMP & @JuliaCumberlege we have written to @wesstreeting calling for a redress scheme for those harmed.
change.org/p/ensure-a-secure…
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Simon Privett retweeted
24 Oct 2024
Dear Chancellor @RachelReevesMP, we’ve joined with @turn2us_org and over 60 organisations, urging you to use language that supports, rather than stigmatises, when discussing social security in your #Budget2024
Let's build a new narrative
Our letter: turn2us.org.uk/New-Narrative
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17 Oct 2024
For those in my network who may be interested in contributing to research in Exeter. If you’re over 18, have been living with epilepsy for over ten years, and would be willing to take part in an interview via Teams, Anika (@study25924) wants to hear from you!
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Simon Privett retweeted
10 Oct 2024
Got 60 secs to support 630,000 people?
Creativity has the power to make a difference. We’re calling on all creative minds. Your entry must be viewed by the judges in 60 secs or less, showing why you think YOU have what it takes to create change for @epilepsyaction
Link in bio
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