Simon Privett

Epilepsy Advocate. 29 years experience of living w seizures. Epilepsy Awareness professional. PPI for #ExeterNurse MSci Course. Views my own.

[Simon Privett @SimonPrivett]

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

https://t.co/VqHlIZ3KH9

[Simon Privett @SimonPrivett]

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!

https://t.co/Vz2UDXS18o

[Epilepsy Action @epilepsyaction]

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: https://t.co/rHTJA1Irqj And stay tuned… there’s so much more to come!
#OliviaColman #DoodleDay2025

[Simon Privett @SimonPrivett]

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.

[Epilepsy Action @epilepsyaction]

5 years since the Cumberlege Report.

No redress. No justice.

Becci, Susan & Anna have a message for the government.

Watch now: https://t.co/6urRxrHd7o

Write to @wesstreeting and demand action.

[Epilepsy Action @epilepsyaction]

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: https://t.co/dIIdPVkrJv

Read Isabella's story here: https://t.co/Ykju2zVDWG

[Epilepsy Action @epilepsyaction]

🚨 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
https://t.co/QjbjMR0pt9

[Epilepsy Action @epilepsyaction]

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: https://t.co/yaNO7mJdzx

https://t.co/aERw7nFMRw

[Epilepsy Action @epilepsyaction]

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

[Epilepsy Action @epilepsyaction]

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

[Simon Privett @SimonPrivett]

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

[Epilepsy Action @epilepsyaction]

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

[Simon Privett @SimonPrivett]

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!

https://t.co/9Z4WCWZaTb

[Epilepsy Action @epilepsyaction]

📢 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 https://t.co/yOthW5rZmX and find out how to get involved

[Epilepsy Action @epilepsyaction]

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

https://t.co/QhDtYvlunf

[Simon Privett @SimonPrivett]

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 [email protected] for more info or to volunteer!

[Simon Privett @SimonPrivett]

For any of my network in or around Bath who might be interested.

[Epilepsy Action @epilepsyaction]

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:

https://t.co/10KX15cH3D

[Epilepsy Action @epilepsyaction]

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:
https://t.co/dJshh7LHEx

[Simon Privett @SimonPrivett]

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.

[Epilepsy Action @epilepsyaction]

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.
https://t.co/iNAuzkfPmw

[Epilepsy Action @epilepsyaction]

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: https://t.co/o7HmtCveNK

[Simon Privett @SimonPrivett]

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!

[The Creative Shootout @TheCreativeSO]

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

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