The only UK charity with dedicated support for people affected by a single ventricle heart condition ❤️🧩 #chdawareness #hiddendisabilities #organdonation
Birmingham, UK
Joined May 2010
- Tweets8.1K
- Following1.3K
- Followers3.7K
- Likes1.6K
Little Hearts Matter retweeted
📣 Still time to vote for 'Every Moment Counts' in @SmileyCFA.
This short animation was co-produced with parents of children with single ventricle heart conditions - sharing their real stories. Vote before the 29th January and support @LHM_UK🔗 buff.ly/3VpbWhs
Little Hearts Matter retweeted
Earlier this year we worked with the wonderful @LHM_UK to share the stories of parents of children with a single ventricle heart condition 💙
We're delighted that it's nominated for a @SmileyCFA - but we need your help!
Vote for 'Every Moment Counts' 🔗 buff.ly/3VpbWhs
We need your vote!
Our film is nominee in this year’s Smiley Charity Film Awards. Every vote counts. It’s easy to view the film to see our amazing and important work and then give us your vote. It’s completely free and takes moments.
smileycharityfilmawards.com/…
#charityfilmawards
Little Hearts Matter retweeted
🌟 Little Hearts Matter @LHM_UK is now PIF TICK re-certified
This means their health information continues to be:
- Evidence-based
- Up-to-date
- Easy to use and understand
Get PIF TICK certified: pifonline.org.uk/pif-tick/ho…
#HealthInformation #PIFTick
A huge thank you to our amazing speakers. We have covered so much ground on a wide range of topics. The day ended with a powerful message of hope from Colbie-Kate urging everyone to be open and work together. We have set the scene for the future.
A discussion about the Fontan Clinic was led by Dr Paul Clift where he discusses concerns surrounding the different outcomes for single ventricle patients who undergo through the Fontan pathway, how Fontan clinics should be run and what will help the patients in longer term.
Dr Jo Wray spoke about the importance of ICHPs and ECHPs for patients to make sure school days are some of the best days for young people with single ventricle conditions. To know more information about our medical conference, please look at our link lhm.org.uk/information-on-th…
The voice of young adults is at the centre of our medical symposium today.
Thank you to Dillon, 20 yrs , Andrew, 29 yrs and Colbie-Kate, 22 yrs for sharing the impact of living with half a functioning heart and how it affects their life.
#lhm #medicalconference
Little Hearts Matter retweeted
Lack of consistency of transition experience highlighted by young people ⬇️ - having dedicated transition nurses in paediatric CHD services is crucial @CongenitalCNA
Suzie Hutchinson speaking about the barriers that exist when accessing vital benefits and how, when awarded, they enable young people to live to their full potential. Suzie shared tips with medical professionals on how they can support with applications.
Hospital transitions from paediatric to adult hospitals can be challenging for teens. Lexie Katsaitis shares insights from young members about their experiences and urges medical professionals to think about ‘teen’ services and how they can work effectively for our young people.
Hajar Habibi, lead clinical nurse specialist for the Adult Congenital Heart Disease (ACHD) service at Royal Brompton Hospital will be addressing sexual health and pregnancy is a topic some of our members have asked about pertaining to their single ventricle heart condition.
Dr Puckey, paediatric clinical psychologist says ‘mental health is one of the most important issues facing young adults and children and their families with single ventricle hearts’. It's a number one priority for LHM too.
Inspiring opening to our medical symposium today from Jara Weinkauf, 37yrs, who is living with half a functioning heart. Jara shared her everyday life as adult with a single ventricle heart and how she’s spearheading change through her research studies.
lhm.org.uk/jaras-story/
Today 100 doctors, nurses, psychologists, dieticians and associated medical teams from every congenital cardiac network in the UK and Ireland are meeting together to begin to understand the change needed to improve the pathway for their half a heart patients. #MedTwitter #LHM
LHM celebrates World Heart Day! We are delighted to be drawing congenital cardiac teams together at our Beyond the Fontan Medical Symposium tomorrow. Our aim of the symposium is to explore lifestyle challenges that people face as they live their life with half a working heart.
Suzie and Lexie are enjoying their little tour of the UK to gather the voices and meet up with some of our youth and young adult members for some very exciting projects coming up.
Last week they're in Bedford with Andrew and this week they're in Scotland with Colbie-Kate.
Little Hearts Matter retweeted
@mediaco_op proud to work with Claire & Tom & other families to co-create @LMH_UK #animation
LHM Family Claire, Tom and Florence who were involved in our 30th Anniversary awareness film have been flying the flag for single ventricle heart disease and LHM by sharing their half a heart journey with @BBCNews and @bbcmtd radio.
bit.ly/3VYG2HN
bit.ly/3zxgytR
LHM Family Claire, Tom and Florence who were involved in our 30th Anniversary awareness film have been flying the flag for single ventricle heart disease and LHM by sharing their half a heart journey with @BBCNews and @bbcmtd radio.
bit.ly/3VYG2HN
bit.ly/3zxgytR
One of our amazing parent members involved our 30th Anniversary awareness film Kim was at BBC Lancashire yesterday.
Click here to listen to the interview where she covers her experience of sharing her story
bbc.co.uk/programmes/p0j1yr7…
#shareyourstory #awareness #halfaheart
