Kat Southwell (nee Lee) (@KatKinLee) header
Kat Southwell (nee Lee) (@KatKinLee) profile picture

Former IT & data geek, now @metupukorg Patient Advocate, trying to navigate living while dying #inflammatoryBreastCancer

Oxford, England
Joined December 2011
Photo by Kat Southwell (nee Lee) (@KatKinLee)Photo by Kat Southwell (nee Lee) (@KatKinLee)Photo by Kat Southwell (nee Lee) (@KatKinLee)Photo by Kat Southwell (nee Lee) (@KatKinLee)Photo by Kat Southwell (nee Lee) (@KatKinLee)Photo by Kat Southwell (nee Lee) (@KatKinLee)Photo by Kat Southwell (nee Lee) (@KatKinLee)Photo by Kat Southwell (nee Lee) (@KatKinLee)Photo by Kat Southwell (nee Lee) (@KatKinLee)Photo by Kat Southwell (nee Lee) (@KatKinLee)
From today, around 1,000 patients with advanced breast cancer will be able to get the life-changing drug Enhertu on the NHS. This follows changes we've made in how new treatments are assessed, so more people can benefit from them. More: nice.org.uk/news/articles/ni…
4
15
1
26
13,442
Kat Southwell (nee Lee) retweeted
Imp 📢 👇🏻 @METUPUKorg has worked tirelessly with @BreastCancerNow & @Make2ndsCount on this campaign for 2 years foll NICE initial rejection. We have lost many women who would have benefited 💔, but onwards we go to get implementation in NI & Wales. @RobbieButlerMLA @healthdpt
1
8
3
11
1,532
Kat Southwell (nee Lee) retweeted
It is with enormous sadness that Jo Taylor, an amazing wife and mum passed away peacefully, surrounded by her family at 8:18am on Monday 3rd of November. Please allow her family some privacy to grieve together. #IAmThe31 #BusyLivingWithMets #SecondaryBreastCancer #MetastaticBreastCancer #DarkerPink #DyingForACure
124
58
25
715
40,560
Kat Southwell (nee Lee) retweeted
On behalf of all the Trustees, volunteers and supporters of METUPUK, we would like to offer our heartfelt congratulations to our Founder, Jo Taylor, for being awarded the British Empire Medal in The King's New Year Honours List 2025. A much deserved recognition for years of work in improving outcomes and quality of life for patients with breast cancer. Jo was diagnosed with breast cancer in 2007 at the age of 38, months after giving birth to her second child. After diagnosis, Jo was shocked by the lack of information on reconstructive surgical options for patients with breast cancer. To address this gap, she created the website After Breast Cancer Diagnosis (ABCD). Jo later added information on diet and exercise and set up residential Exercise Retreats for patients with a diagnosis of primary or metastatic (secondary) breast cancer. When Jo was diagnosed with metastatic breast cancer (MBC) in 2014 she once again became aware of lack of information being provided to patients. Although 30% of patients develop MBC, sometimes years after primary breast cancer, women were not being informed about what to look out for. Jo designed a Red Flag Infographic aimed at patients with a history of primary breast cancer to show the signs and symptoms of MBC. These Infographics are now signposted throughout the NHS. In 2016, Jo founded METUPUK after connecting with patient advocates in the USA. At first it was a loose coalition of likeminded patients campaigning for improvements in outcomes. In 2021 METUPUK became a registered charity, the only UK charity solely dedicated to patient advocacy for MBC. The four main areas of focus are increasing awareness of the signs and symptoms of metastatic breast cancer, increasing access to innovative treatments, improving information and access to clinical trials and improvements in data collection. We are very lucky to have Jo as our Founder and Chair of Trustees. Thank you for all your hard work.
16
17
7
121
28,147
Kat Southwell (nee Lee) retweeted
✨ Which COSD data items are important for the NAoMe? We've compiled a list of "Key Data Items" which highlights COSD data items to make sure are being completed for all patients with metastatic #breastcancer. Access here: bit.ly/3tOU9Wk @useMYdata @NHSEngland
1
1
150
Kat Southwell (nee Lee) retweeted
Winner of Celebrity #Mastermind is @TerryChristian! 🏆 Fantastic that he beat all the other celebrities & very kindly supports #METUPUK as his chosen charity & thankful of his ongoing support Congratulations Terry! You're always our winner! @CliveMyrieBBC @mastermindquiz
11
16
152
7,242
Kat Southwell (nee Lee) retweeted
We're run by volunteers, most living with #metastaticbreastcancer & we rely on efforts & collaboration of individuals like you. We're behind some monumental changes over the UK. Exciting developments are happening. Will you be a part of it in Wales? ---> join-us@metupuk.org.uk
1
11
1
10
3,460
Kat Southwell (nee Lee) retweeted
Pain can be a major barrier to everyday activities in women w/ breast cancer dx. New study by BRiC investigates pain experience for better pain management strategies 👇🙏Please participate and RT @abcdiagnosis #breastcancer @METUPUKorg #metastaticbreastcancer #PainManagement
3
25
1
41
6,498
Kat Southwell (nee Lee) retweeted
In case you were on a different planet and missed the big news, we have now had 11 days in a row setting new all-time modern global temperature records, peaking at 17.233°C on July 6, quite possibly the hottest 11 days globally in the last 100,000+ years. washingtonpost.com/weather/2…
100
1,148
88
2,321
329,248
The clinical trials dashboard is a game-changer, leaving us in awe and moved to tears. Thanks @KatKinLee 🙏 #MBCManc @METUPUKorg #BritishAsian #BritAsian #SouthAsian #CancerUK #SecondaryBreastCancer
Replying to @METUPUKorg
Our advocate @KatKinLee talks about her experience trying to access clinical trials for metastatic inflammatory breast cancer and how this inspired her to produce our clinical trial dashboard #MBCManc
1
8
9
968
Did somebody say ‘task force’ on SBC 🙌 what an utterly amazing day, we are all emotional on what has been achieved & what we now need to do, humbled to be here today thanks to @abcdiagnosis total legend! @GM_Cancer @AndyBurnhamGM @METUPUKorg @Goldricck @Debbie_abrahams
1
7
2
29
3,235
Kat Southwell (nee Lee) retweeted
So pleased to hear @AndyBurnhamGM pay heatfelt tributes to @abcdiagnosis and @KatKinLee for their drive, commitment and exceptional hard work to make this patient-led metastatic breast cancer conference such a success👏🏻👏🏻👏🏻👏🏻.
2
5
11
545
Kat Southwell (nee Lee) retweeted
“The global cancer statistics in 2020 shows breast cancer has overridden lung cancer and become the most commonly diagnosed cancer worldwide, with 2.3 million new cases in 11.7% of all cancer types reported.” What the fuck. ijbs.com/v18p2609.htm
15
22
1
86
13,417
Kat Southwell (nee Lee) retweeted
"As long as you are breathing, there is more right with you than there is wrong....." As part of week 2 mental health week for Metastatic May we are going to talk about it a bit more, we wanted to give you a little something that can help. We know that a… instagr.am/p/CsAwqfFO-l-/
4
7
520
Kat Southwell (nee Lee) retweeted
Laura our #METUPUK advocate has written a blog about mental health and metastatic breast cancer and the challenges that she has had over 15 years living with an incurable disease and how it's affected her #mentalhealth buff.ly/3pjfnZS #MetastaticMay #DarkerPink
4
11
2
24
4,020
Kat Southwell (nee Lee) retweeted
We want you to know that we have been planning a whole month of content for you - exploring what it's like to live with metastatic breast cancer... Stay tuned for more info, because we have some brilliant content heading your way! #MetastaticMay #metas… instagr.am/p/CrgWw3zMRc2/
4
9
488
Kat Southwell (nee Lee) retweeted
I had the privilege of meeting Jo @TheSun #WhoCaresWins- what a heroic person, who is doing amazing work. Please give her and the work is she doing a follow @abcdiagnosis
Heroic and brave - emotions are high. Thank you for everything you’re doing. The National Lottery Local Health Hero Award goes to… #WhoCaresWins
4
7
11
Kat Southwell (nee Lee) retweeted
Ano tragic death of a #metastaticBreastCancer friend @philippahether an amazing young woman, advocate,campaigner #TrodelveyNow was her campaign supported by @METUPUKorg & as @KatKinLee says it was her idea & others followed m.facebook.com/story.php?sto… 84
4
4
3
18