Fight4Orkambi @fight4orkambi
#mumonamission Gemma Daysh, Campaigner for access to medicines, In the fight until all with cf have the chance to live a life unlimited 💪💪💜💜 m.facebook.com/fight4orkambi/ Hampshire UK Joined June 2017-
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The best & most “accurate” TV piece I’ve seen re disappointing @NICEComms news of @VertexPharma #kaftrio drugs review for #CysticFibrosis patients Let’s hope @NHSuk can reach a deal that ensures access for ALL…🤔 @cftrust @BBCSurrey @BBCLondonNews @NHSEnglandNMD @DavidRamCFT
The best & most “accurate” TV piece I’ve seen re disappointing @NICEComms news of @VertexPharma #kaftrio drugs review for #CysticFibrosis patients Let’s hope @NHSuk can reach a deal that ensures access for ALL…🤔 @cftrust @BBCSurrey @BBCLondonNews @NHSEnglandNMD @DavidRamCFT
2. The concern is 4 babies & those born in the future. There’s a process 2 go through though & if at the end of this there’s a negative outcome we as a community r ready 2 make a noise we’ve done it b4 & will do it again! Pls for now respond to NICE appraisal document b4 24/11
Thnx to @LBC 4 yr phone in today, I was concerned 2 hear frm anxious parents who believe their children won’t be able to continue on @VertexPharma meds. Gayle frm @CfVoices was clear this is not the case. NO one will lose access & all on meds will progress thru pipeline @cftrust
@Cathliv @Elizabe46045399 @cftrust @DavidRamCFT @ChrisMRiches @M44GYG @Alidilly @fight4orkambi @Marion_Super @GreatStrides65 @janedaviescf @DailyExpressRB @Melden45 @MotherhoodvsCF @NHSEnglandNMD Surprised there is so much misinformation 🤷♀️ @cftrust @DavidRamCFT
@fight4orkambi @RedCollectiveUK @jeremycorbyn Your absolutely right @fight4orkambi …& @MattHancock was also instrumental in helping conclude our successful campaign too with @cftrust & @ChrisMRiches & the amazing @Daily_Express @jeremycorbyn & now the #LabourParty are jumping on the bandwagon Typical🙄 #cysticfibrosis
Tick tock @MHRAgovuk children in the UK’s lung health is depending on you!! Where is the UK’s announcement and why are we behind Europe??!! #cysticfibrosis #kaftrio #lifesavingdrugsnow
Tick tock @MHRAgovuk children in the UK’s lung health is depending on you!! Where is the UK’s announcement and why are we behind Europe??!! #cysticfibrosis #kaftrio #lifesavingdrugsnow
Hopefully we won’t be far behind! You would of hoped that @MHRAgovuk would have been in sync with EMA? We have #British kids still without access to #lifesavingdrugsnow they need their chance yesterday!!!! #cysticfibrosis #kaftrio @NHSEngland @cftrust @VertexPharma
Hopefully we won’t be far behind! You would of hoped that @MHRAgovuk would have been in sync with EMA? We have #British kids still without access to #lifesavingdrugsnow they need their chance yesterday!!!! #cysticfibrosis #kaftrio @NHSEngland @cftrust @VertexPharma
#Winchester High Street Market, find us there on Thursdays, Fridays & Saturdays for your #cookiefix 😃🍪👸🏻 #holidayseason #Hampshire #bakery #cookies #Christmas #supportsmallbusiness #supportlocal #festive #ShopSmallUK #Christmas2021 #NationalCookieDay vm.tiktok.com/ZM8WnD2vu/
Another fab weekend at #Winchester market, looking forward to doing it all again this week 🍪👸🏻 #holidayseason #Hampshire #bakery #cookies #Christmas #supportsmallbusiness #supportlocal #Portsmouth #southsea #ShopSmallUK #Christmas2021 #NationalCookieDay
Fab day at #Winchester today 😃 #cookies #bakery #PopUp #Hampshire
Struggling to find others who have had dealings with the fungus Rhizopus arrhizus Please DM if you have any experience and don’t mind sharing outcome/how you managed it… #cysticfibrosis #cfaware #cysticfibrosisawareness PFA
"It can't hurt to wear a mask..why would anybody complain about that?" Children with #cysticfibrosis face a lifelong health battle without our government neglecting their duty to protect them (& all children) during a global pandemic Mitigations in schools please #safeedforall
@nataliejsummers @LloydsPharmacy Have you also now spoken to @fight4orkambi ?
@fight4orkambi @LloydsPharmacy @cftrust @NHSEngland Still no joy? Come on @LloydsPharmacy this isn’t calpol it’s a lifesaving medication that isn’t meant to be stopped. This is a very stressful situation for those waiting for their medication.
Cystic Fibrosis Trust @cftrust
28K Followers 5K Following We're dedicated to uniting for a #lifeunlimited for those living with #cysticfibrosis. Our social & Helpline teams monitor our accounts between 9-5 weekdays.
Chris Riches @ChrisMRiches
1K Followers 792 Following @Daily_Express NW Correspondent, CF & PKU Campaigner, 2020 Society of Editors 🏆& 2020 Press Gazette Campaign Journalist of the Year 🏆. ❤️Spurs. Opinions own.
Strawfie Challenge @strawfie
3K Followers 5K Following A Selfie Campaign - Take a photo breathing through a straw, #strawfiechallenge Download campaign song: Breathe With Me by Betsa in aid of the CF Trust (UK)
Jillian McNulty @jilli09
4K Followers 3K Following Award Winning Cystic Fibrosis Campaigner. 2017 Longford Person Of The Year, Kidney Transplant Recipient 💚Spearheaded Ireland’s #Orkambi Campaign #mymiracle
Josh Llewellyn-Jones .. @JoshLJ24
4K Followers 794 Following Endurance Athlete & WR Holder with Cystic Fibrosis 🚀 Performance Coach 🔸 Lift Club Enquiries- [email protected] [email protected]
Jo Davidson @CFcarer
2K Followers 2K Following Thinking of the thousands who are still waiting for #Kaftrio etc...#NoOneLeftBehind. Tweet abt CF, Strictly & general stuff. Unison✊
Kimberly Toogood @KToogie
3K Followers 5K Following Artist; @sketchybreather Cystic Fibrosis, Double lung transplant recipient, in rejection. No press enquiries! Eric & Ava ❤️ Shielding & miss hugs!
Nick Talbot @CF_vs_Everest
2K Followers 946 Following CEO & Motivational Speaker with Cystic Fibrosis (CF) achieved world first climbing the 7 Summits and reaching the South Pole for CF.
David Turner @GreatStrides65
3K Followers 1K Following Past organiser of #GreatStrides65 team walk in @SurreyHillsAONB for @cftrust | Labradors | Insurance silk @4NewSquare | 📷
Catherine Meredith @873Meredith
2K Followers 5K Following Organ Donation. CF. CKD. NHS. Population. Environment. Animal Welfare. Plant based. Ban Intensive Farming, Fur, Foie Gras.
Vertex Save Us @VertexSaveUs
849 Followers 698 Following Global campaign for equitable access to all Vertex CFTR modulator drugs which can extend & save the lives of people with cystic fibrosis (CF) wherever they live
Tanya Koorts @TanyaKoorts
308 Followers 441 Following 🧡I am a CF warrior mom fighting for my son to breathe just one more day🧡 🙏All glory to God🙏
Nicola Johnson @JohnsonMNicola
968 Followers 1K Following Director of People & Culture in a Multi-Academy Trust. School Governor. Mum, Step-mum, and raising awareness of Cystic Fibrosis when possible. #NoOneLeftBehind
Just Treatment 💊 @JustTreatment
10K Followers 10K Following We campaign to put patients and the #NHS before profit. ✊ #FBNHS
Alex Stobbs @AlexStobbs
2K Followers 1K Following Pianist, Composer | Teacher @OasisSouthBank @TeachFirst | ex-@Kings_College @RCMLondon @choirofkingscam | Chairman @FaireIsTheXI | Cystic Fibrosis
Caroline Graham @CarolinePKU
439 Followers 696 Following Mum, Designer, Artist, NSPKU volunteer, 3 kids 2 with #PKU all views my own
Sir Paul KBE 🛡️�.. @p_a_u_l_2015
368 Followers 763 Following Science teacher. Sharing thoughts, dad-jokes & occasional controversy. Challenging misinformation & corruption. BTFC & THWFC (COYS). All views my own
Shane Howard Magill @TransManKnits
300 Followers 486 Following If it wasn't for my C.F. team I wouldn't be half the man I am today. I can't thank them enough for all their recent support.
Anthony Thompson @bigbaddoctor
2K Followers 5K Following 58, Hubby, Dad, Runner, Gamer,Cystic Fibrosis (pw), 🔺F508 & 2798+ 5G - A, Consultant in Palliative Medicine, Recent #clavicle 🚴 crash, ManU fan, ❤️NHS
Raelyn Aronson @AronsonRae96857
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Marisha Braukus @MariBrauku
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Isadora Tavenner @TavennIsador
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Sherie Dimino @DiminoDim
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Bill Ohman @BillOhman
1K Followers 5K Following Philanthropy is a tax right off!!! $BillOhman = Chime & CashApp https://t.co/1VmP4rjTYi = PayPal https://t.co/WJYC4yZ8my Thank you!!! Godspeed!!! ;)
Nough @Nough446658
265 Followers 5K Following
Ella @teautheaus46821
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Chris Perkins @tazperks
248 Followers 1K Following Father, darts/rugby player, music lover, drinker and employee. Green party member.
Liam Connaughton @Lemomomomomo
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PlayUpPompey @PlayUpPompey__
12K Followers 7K Following Independent #Pompey App & Website | Follow for daily Portsmouth videos, news, stats, opinions & photos | Inquiries 👉 DM us or [email protected] 💻📲
Nick Smith @ZanzibarSmith
148 Followers 148 Following please donate if able: https://t.co/vna1U9sR5x RAF, Sqn Ldr, Air Ops
marybruce @marybru16376118
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CFComfortFundBristol @cfcf_bristol
30 Followers 74 Following The new Official Twitter page for The Cystic Fibrosis Comfort Fund - Bristol, Supporting and raising awareness for people with Cystic Fibrosis 💜
CF Vests 4 Life @cfvests4life
300 Followers 2K Following We are a Nonprofit Organization that provides CF equipment to add more mornings to the lives of CF Warriors the world over which was established June 2020.
Maude Perrine -Writer.. @MaudePerrine
3K Followers 3K Following Author of 'Love you' & audiobook narrator 📚🎧 Cystic fibrosis & diabetes warrior 🫁💜 Spoonie🥄Married 💍 #cysticfibrosisawareness
Mark Tremblay @tremblay_mark
34 Followers 159 Following Director of Celebrate Recovery, follower of Jesus Christ. For when I am weak, then I am strong. 2 Corinthians 12:10
David Nannini @david_nannini
104 Followers 982 Following Interested in Medical Causes, especially Cystic Fibrosis.
heidi sammons @heidisammons
2K Followers 5K Following Proud mama & Salty Bitch with Cystic Fibrosis CU-alum 1992 LET’S GO BUFFS #65Roses
Faisal Al-Somali @FaisalAlSomali2
611 Followers 661 Following Pediatric Pulmonology & bronchoscopy consultant FRCPC , Love to teach , love my family & my friends
Fred swanborough @SwanboroughFred
64 Followers 301 Following
A. Roberts 📸 @hippylovephotos
280 Followers 454 Following 'Cuse🍊✖️est.2013 ✖️Published Photographer 📚 ✖️CF🫁
MECFA @mecfassoc
491 Followers 688 Following Working to help Middle East Cystic Fibrosis patients live longer healthier lives. Follow us to learn how we make a difference.
Sarah Kay @SarahKay1985
52 Followers 245 Following Cystic Fibrosis Advocate and Warrior. Speaking about wellbeing through breath work makes me happy 😊 Community minded yoga lover🧘🏼♀️💚💛💜
TheVaporDan @dan_vapor
4K Followers 5K Following 518/600 followers on Twitch! let’s #PaintItNeon and make everyday a party!
CF Warriors @CFwarriorsUK
836 Followers 414 Following CF Warriors is a charity focussed on promoting sport and exercise to help people with cystic fibrosis to be as fit and healthy as possible.
Megan Danielle @MeganDanielless
196 Followers 637 Following Slowly healing the brokenness inside of me
Adam Harley @AdamHar17551383
54 Followers 64 Following Work in Communications @CFTrust, working hard to make sure CF stories are told.
JH @blinkrocker88
214 Followers 231 Following Print professional. Space enthusiast and nature walk fan
Bravebob @Bravebob2014
1K Followers 2K Following Training to swim the Channel in August 2027, going to be an interesting journey with Barking Bob my stuffed dog. Love the sea. Its brilliant fun too.
Roby Turpin @MyRobo555
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Lina @Lina45545396
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Hüseyin @kartalakrep81
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Monaghan Medical @MonaghanMedical
537 Followers 2K Following
Lungwaytogo @lungwaytogo
44 Followers 167 Following I spend very little time on here. But I'm gradually trying to raise awareness of cystic fibrosis.
Beating The Odds @ChrisMacleodBTO
217 Followers 450 Following “Beating The Odds” is Chris MacLeod’s inspirational book with 11 lessons to help you overcome a health crisis and lead a more resilient life.
Korinna Messaris @KorinnaMessaris
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lee bamptonl @leebampton
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Judy Schloss @JudySchloss
807 Followers 3K Following Respiratory Therapist- mom of three crazies- dog lover -hobby farmer - crafter. Opinions are my own! #RespiratoryTwitter
Cystic Fibrosis Trust @cftrust
28K Followers 5K Following We're dedicated to uniting for a #lifeunlimited for those living with #cysticfibrosis. Our social & Helpline teams monitor our accounts between 9-5 weekdays.
Chris Riches @ChrisMRiches
1K Followers 792 Following @Daily_Express NW Correspondent, CF & PKU Campaigner, 2020 Society of Editors 🏆& 2020 Press Gazette Campaign Journalist of the Year 🏆. ❤️Spurs. Opinions own.
Strawfie Challenge @strawfie
3K Followers 5K Following A Selfie Campaign - Take a photo breathing through a straw, #strawfiechallenge Download campaign song: Breathe With Me by Betsa in aid of the CF Trust (UK)
Jillian McNulty @jilli09
4K Followers 3K Following Award Winning Cystic Fibrosis Campaigner. 2017 Longford Person Of The Year, Kidney Transplant Recipient 💚Spearheaded Ireland’s #Orkambi Campaign #mymiracle
Josh Llewellyn-Jones .. @JoshLJ24
4K Followers 794 Following Endurance Athlete & WR Holder with Cystic Fibrosis 🚀 Performance Coach 🔸 Lift Club Enquiries- [email protected] [email protected]
Jo Davidson @CFcarer
2K Followers 2K Following Thinking of the thousands who are still waiting for #Kaftrio etc...#NoOneLeftBehind. Tweet abt CF, Strictly & general stuff. Unison✊
Normal Life @NormalLife7
2K Followers 300 Following Content creator with Cystic Fibrosis and a bit of moaning on the side.
Nick Talbot @CF_vs_Everest
2K Followers 946 Following CEO & Motivational Speaker with Cystic Fibrosis (CF) achieved world first climbing the 7 Summits and reaching the South Pole for CF.
David Turner @GreatStrides65
3K Followers 1K Following Past organiser of #GreatStrides65 team walk in @SurreyHillsAONB for @cftrust | Labradors | Insurance silk @4NewSquare | 📷
Cystic Fibrosis Found.. @CF_Foundation
31K Followers 3K Following Recognized globally, the CF Foundation has led the way in the fight against cystic fibrosis, fueling extraordinary medical and scientific progress.
Catherine Meredith @873Meredith
2K Followers 5K Following Organ Donation. CF. CKD. NHS. Population. Environment. Animal Welfare. Plant based. Ban Intensive Farming, Fur, Foie Gras.
Vertex Save Us @VertexSaveUs
849 Followers 698 Following Global campaign for equitable access to all Vertex CFTR modulator drugs which can extend & save the lives of people with cystic fibrosis (CF) wherever they live
Nicola Johnson @JohnsonMNicola
968 Followers 1K Following Director of People & Culture in a Multi-Academy Trust. School Governor. Mum, Step-mum, and raising awareness of Cystic Fibrosis when possible. #NoOneLeftBehind
Just Treatment 💊 @JustTreatment
10K Followers 10K Following We campaign to put patients and the #NHS before profit. ✊ #FBNHS
Jess Meredith🐾 @jessicameredi16
3K Followers 4K Following Organ Donation | Sister of a liver transplant recipient | We won the campaign for CF meds! | Save our NHS | Animal rights | Adopt don't shop | Civil Engineer
Sir Paul KBE 🛡️�.. @p_a_u_l_2015
368 Followers 763 Following Science teacher. Sharing thoughts, dad-jokes & occasional controversy. Challenging misinformation & corruption. BTFC & THWFC (COYS). All views my own
CF News Today @CFNewsToday
5K Followers 2K Following We exist to bring you science, research and clinical news about Cystic Fibrosis. We are a free digital publication dedicated to the patient community.
CF Adventurers @CfAdventurers
2K Followers 3K Following CF Adventurers, https://t.co/0WCB7sg5Xf, is a place for people with cystic fibrosis to meet online, support each other, chat, and have fun.
ICVI @TheCVInstitute
382 Followers 683 Following The ICVI funds a cancer immunotherapy research team at St George’s University of London headed up by Professor Angus Dalgleish
James Cleverly🇬�.. @JamesCleverly
240K Followers 8K Following Home Secretary of the United Kingdom. MP for Braintree.
Elon Musk @elonmusk
181.7M Followers 585 Following
CF Warriors @CFwarriorsUK
836 Followers 414 Following CF Warriors is a charity focussed on promoting sport and exercise to help people with cystic fibrosis to be as fit and healthy as possible.
The Cookie Queen™ @cookiequeenuk
48 Followers 224 Following NYC style Cookies, packed full of yummy treats, Freshly baked to order 👩🏻🍳 Insta 📸 @thecookiequeenuk #cookies #yummy 🍪👸🏻
CF Get Loud @CFgetloud
512 Followers 332 Following A resource for patients and their networks to GET LOUD for access to medications in Canada for cystic fibrosis patients. Speak up to help save Canadians with CF
Trikafta for Kiwis @trikafta4kiwis
121 Followers 213 Following New Zealander's with Cystic Fibrosis fighting for life changing medications #trikaftaforkiwis @trikaftaforkiwis on Instagram @trikaftaforkiwis on Facebook
Thorpe Park Official @THORPEPARK
122K Followers 453 Following The official X account of the most thrilling theme park in the UK, Thorpe Park! #ThorpePark
Stephen Mulhern @StephenMulhern
699K Followers 210 Following TV Presenter • Magician • Star of Stage & Screen • For all links and corporate/private event bookings, click below ⬇️
GB News @GBNEWS
626K Followers 61 Following LIVE now: Sky 512, Virgin 604, Freeview 236, Freesat 216, YouView 236, Samsung 4326, Sky Glass 509, DAB+ Radio, GB News App, YouTube, Online.
The Reclaim Party @thereclaimparty
112K Followers 550 Following The official account of The Reclaim Party. Leader @lozzafox VOTE 🦊 2nd May for the London-wide Assembly
Laurence Fox @LozzaFox
491K Followers 2K Following Live strong and free. Leader of @TheReclaimParty @BadLawTeam @media_reclaim Media enquiries: [email protected] https://t.co/8aGt5akAhj
Park Lane Stables @ParkLaneStables
7K Followers 2K Following A tiny stables in London with a huge heart, a refuge for happy horses and people, and a thriving Riding for the Disabled Centre. #horseride #carriagedrive
Portchester Fire St @Portchester28
4K Followers 1K Following The official twitter channel of @HantsIOW_fire Portchester Fire Station aims to update on calls attended, promote fire safety and to interact with the community
Asda @asda
513K Followers 1K Following Welcome to the official Asda Twitter page. Our customer service team are always happy to help at @AsdaServiceTeam.
Co-op @coopuk
184K Followers 1K Following A better way of doing business Need help from our customer care team? Send us a DM. Find your local https://t.co/FH4ywulXgn Social policy https://t.co/u9ECkLRNpt
Morrisons @Morrisons
347K Followers 25K Following More gifs, puns & hashtags, all in 240 characters 💚 #MoreReasons
Hampshire Hospitals @HHFTnhs
8K Followers 828 Following Andover War Memorial, Basingstoke & North Hampshire & Royal Hampshire County Hospitals.
Aldi Stores UK @AldiUK
685K Followers 3K Following The official Aldi UK Twitter page. This week our Social Media Team are available Monday to Saturday 8am-8pm and Sunday 10am-4pm.
British Gas Help @BritishGasHelp
63K Followers 16K Following Need some help? Try our Help & Support pages at https://t.co/KqkS4uoPtA… or send us your question.
Portsmouth Hospitals .. @PorthospCharity
2K Followers 345 Following We are the charity partner of @phu_nhs and we work to enhance patient care and support staff wellbeing across Portsmouth Hospitals 🏥 #ProudtobePHU No. 1047986
Canadian Cystic Fibro.. @CFAdvocacynow
1K Followers 1K Following Access to CF medication is a moral, ethical & medical imperative. With your help, we're going to make it a legal requirement. Please join our fight. #CFcantwait
Big Stir Records @StirBig
3K Followers 4K Following Los Angeles based record label releasing the finest music from across the global pop rock and indie pop scene.
Fareham Borough Counc.. @FarehamBC
6K Followers 355 Following Opening hours: Mon to Fri, 08:45 - 17:15. Please be aware that we will only respond to messages on this page during these times.
Love Southsea @LoveSouthseaUK
18K Followers 2K Following Events, PR, & blogging, online clothing & art range. Contact for marketing and collabs: [email protected] Shop ~ Blog 🔻
Chris MacLeod @macleodscanada
6K Followers 6K Following Lawyer, entrepreneur, advocate. Founding partner at @CambridgeLLP. Founder of @cfadvocacynow. Author of Beating The Odds @chrismacleodBTO
Metropolitan Police @metpoliceuk
1.4M Followers 789 Following London's Metropolitan Police Service. Please do not report crime here. Call 101, tweet @MetCC or visit our website. In an emergency always call 999
Clarence House @ClarenceHouse
1.1M Followers 341 Following This account is no longer being updated. Please follow The @RoyalFamily for updates on His Majesty King Charles III and Her Majesty The Queen Consort.
The Royal Family @RoyalFamily
5.7M Followers 463 Following The latest news and updates on the work of The King, The Queen and The Royal Family.
Professor Dame Angela.. @uksciencechief
183K Followers 651 Following Tweets from the UK Government Chief Scientific Adviser and the Government Office for Science. Most tweets by officials.
Professor Chris Whitt.. @CMO_England
368K Followers 283 Following England's Chief Medical Officer. Annual reports and talks on health https://t.co/uIE9U4HVtO
NHS Nightingale Londo.. @NightingaleLDN
39K Followers 66 Following NHS Nightingale Hospital London - standing ready to support the NHS whole London COVID-19 response
Waitrose & Partners @waitrose
343K Followers 5K Following Follow us for all the latest news, recipes and offers from Waitrose & Partners. We're available on Twitter whenever our shops are open.
M&S @marksandspencer
643K Followers 3K Following Welcome to the official M&S Twitter page. Follow us here for news on our newest food, latest fashion and home inspiration. We’re here daily, 8am-10pm.
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593K Followers 49K Following Welcome to the official Sainsbury’s Twitter page. We’re here daily helping to bring good food to your feed and to answer any of your questions.
Solent NHS Trust @SolentNHSTrust
9K Followers 2K Following Award winning Trust. Ambitious provider of community and mental health services on the South Coast. Account monitored Mon-Fri, 9-5.
Southampton Children'.. @SotonChildHosp
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University Hospital S.. @UHSFT
19K Followers 2K Following University Hospital Southampton NHS Foundation Trust includes Southampton General, Princess Anne Hospital and Southampton Children's Hospital. #WeAreUHS
BBC Question Time @bbcquestiontime
578K Followers 756 Following The BBC's flagship political debate programme 📺 Thursdays from 8pm on @bbciplayer or on @BBCOne after the 10 o'clock news 🔈 on @bbcsounds #bbcqt
Rishi Sunak @RishiSunak
2.3M Followers 275 Following Prime Minister of the United Kingdom 🇬🇧 @Conservatives leader. MP for Richmond (Yorks).
Adrian Moore @AdrianMoore58
454 Followers 383 Following Adversity is the trial of principle. Without it, a man hardly knows whether he is honest or not. Always seeking an adventure!
TUI Group @TUIGroup
45K Followers 605 Following Corporate and sustainability news from the world's #1 tourism group. For customer service, please contact national accounts. NEW: https://t.co/wuGu0T2WkUThis is incredible #Kaftrio
A sensitive MRI tool was able to show signs of reversible bronchiectasis in more than one in three CF patients on Kaftrio, a study finds: buff.ly/3QGtiTG #cysticfibrosisawareness #cfawareness #cysticfibrosiswarrior #curecf #chronicillness
It’s like we’re in a time warp. Media outlets everywhere talking about #cysticfibrosis generics & it’s like we don’t even have drugs like #kaftrio now But we do, don’t we🤷♀️ @cftrust @DavidRamCFT or is there something to see here 👀 @ChrisMRiches Should we be worried @M44GYG
We’ve been told not to worry about @NICEComms @NHSuk latest statements on #kaftrio @VertexPharma review, but @cftrust, why are there so many slightly inaccurate articles radio interviews tv segments, all using a story to scare us We were told this was just a process @cftrust🤷♀️
The best & most “accurate” TV piece I’ve seen re disappointing @NICEComms news of @VertexPharma #kaftrio drugs review for #CysticFibrosis patients Let’s hope @NHSuk can reach a deal that ensures access for ALL…🤔 @cftrust @BBCSurrey @BBCLondonNews @NHSEnglandNMD @DavidRamCFT
The CF Community is getting loud! 💙💚 youtu.be/nXmPpA17C54?fe…
2. The concern is 4 babies & those born in the future. There’s a process 2 go through though & if at the end of this there’s a negative outcome we as a community r ready 2 make a noise we’ve done it b4 & will do it again! Pls for now respond to NICE appraisal document b4 24/11
Thnx to @LBC 4 yr phone in today, I was concerned 2 hear frm anxious parents who believe their children won’t be able to continue on @VertexPharma meds. Gayle frm @CfVoices was clear this is not the case. NO one will lose access & all on meds will progress thru pipeline @cftrust
@Cathliv @Elizabe46045399 @cftrust @DavidRamCFT @ChrisMRiches @M44GYG @Alidilly @fight4orkambi @Marion_Super @GreatStrides65 @janedaviescf @DailyExpressRB @Melden45 @MotherhoodvsCF @NHSEnglandNMD Surprised there is so much misinformation 🤷♀️ @cftrust @DavidRamCFT
@fight4orkambi @RedCollectiveUK @jeremycorbyn Your absolutely right @fight4orkambi …& @MattHancock was also instrumental in helping conclude our successful campaign too with @cftrust & @ChrisMRiches & the amazing @Daily_Express @jeremycorbyn & now the #LabourParty are jumping on the bandwagon Typical🙄 #cysticfibrosis
@MartinBarrow If the search was not carried out in accordance to protocol, the Police and CPS must look whether there is evidence to charge with child sexual abuse.
@MartinBarrow This is terrible. In all my years of working in secondary schools, I have never come across anything like this. Safeguarding left the building! As one who works in a Hackney school I'd be interested know which school did this is.
@MartinBarrow So the Met Police apologise. Well how F*cking good of them. A child traumatised for goodness knows how long if not forever. The whole structure of the Met & it’s officers needs fumigating . No emotions just a mealy mouthed apology. What a nightmare for that poor child
@MartinBarrow @JoolzDenby I am appalled by this. There is no way in hell this girl should have been searched like that - and for cannabis??!! (Even if there had been any). It’s bordering on an assault in my view (ex police civilian) and I’m almost speechless with horror.Poor girl.What were they thinking ?
@MPSHackney @MartinBarrow Your officers committed a crime against this child. She deserves justice and compensation.
@MPSHackney @MartinBarrow Retraining? Every Safeguarding rule was broken. Every rule of decency and fairness was broken. No retraining will make any difference. This was pretty basic stuff and the school and police failed this child and her peers miserably.
@MPSHackney @MartinBarrow I don't get how a woman officer can even think this would be acceptable? A 15yr old menstruating and being asked to bend over without a pad, and then to disallow a clean pad or bathroom? I don't see a teenager getting over that. It takes years to get used to bleeding confidently
@Forky1200 @MPSHackney @MartinBarrow Absolutely, this is sexual assault of a minor. Nothing less.
@Thermonuked @kelechnekoff @MPSHackney @MartinBarrow Not just the officers, the teachers should be held accountable
@kelechnekoff @MPSHackney @MartinBarrow its actually sexual assault of a minor, all the officers involved need to be put on a list
@MPSHackney @MartinBarrow It was sexual assault and when the IOPC complete their corrupt report I hope the family take legal action.
@MPSHackney @MartinBarrow Please don't tell me these officers are still holding their positions when they have already abused this school girl! Your statement is very calm considering the details that have been released. I'm sickened to think such people hold positions of power and abuse it in this way 😡
@joslyoung @LucyGoBag @MartinBarrow Why would a headteacher even allow this to happen? The pupil was in an exam and under supervision. "Smelling of cannabis" can't possibly warrant such an approach. There is something rotten across Met to enable this.
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