Leg pains in CHD: a distressing symptom of a wider problem

Anecdotal reports suggest that children and young adults with CHD frequently experience pain in their legs. The purpose of this pilot study, performed by Little Hearts Matter patient organisation, was to assess the burden of leg pains in this group and begin to investigate associated factors and consequences for daily living. To read the full report please click on the link above.

25th Anniversary Membership Survey – Creating a Better Future.

In its 25th Anniversary year Little Hearts Matter sought to review how the needs of its membership may have changed over the past 25 years and where their greatest challenges are moving forward. The following paper explores the results of the survey and sets out the actions that the charity will take moving forward. Click Here to access the survey

Research priorities in single-ventricle heart conditions: a United Kingdom national study

The object was to bring together stakeholders in the United Kingdom to establish national priorities for research in single-ventricle heart conditions. In partnership with Little Hearts Matter, the group in Birmingham brought together patients, their parents, healthcare professionals, researchers and charities from across the UK. Their findings have been published in the journal Cardiology in the Young and can be viewed by clicking on the link above.

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    There are still some free places available for our family event at the Discovery Museum in Newcastle on Wednesday 19th February (for young people aged 8+ and parents)

    Workshops will cover current trends we see every day with our members and create a safe place to talk, share experiences if you would like to and learn more about managing day to day life with half a working heart. Children under 8 are welcome but need to stay with their parents in their workshop.

    After our workshops we will have lunch and a chance to experience and walk around the museum together with Suzie and Lexie or with your family.

    Click the link to below to book 👇

    www.lhm.org.uk/news-and-events/events/
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    3 hours ago  ·  

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    Bristol Royal Hospital for ChildrenThis week's question: "What happens when my child starts asking me questions about my illness?"The South Wales and South West Congenital Heart Disease Network (SWSW CHD) have been asking our cardiac families how they can help them feel more supported. So to help, we have launched the #myquestion campaign in partnership with Wallace & Gromit's Grand Appeal. We will be featuring these questions and signposting to information and ideas to help you find an answer which works for your own situation.

    This week we are asking:

    𝗪𝗵𝗮𝘁 𝗵𝗮𝗽𝗽𝗲𝗻𝘀 𝘄𝗵𝗲𝗻 𝗺𝘆 𝗰𝗵𝗶𝗹𝗱 𝘀𝘁𝗮𝗿𝘁𝘀 𝗮𝘀𝗸𝗶𝗻𝗴 𝗺𝗲 𝗾𝘂𝗲𝘀𝘁𝗶𝗼𝗻𝘀 𝗮𝗯𝗼𝘂𝘁 𝗺𝘆 𝗶𝗹𝗹𝗻𝗲𝘀𝘀?

    It is natural to think about how you talk to your child about your own cardiac condition. Your approach will depend on a range of factors which will be individual to your own circumstance – what does your child already know, how old are they, what are their own health experiences that might help or hinder their understanding.

    Our toolkit can help you with top tips and ideas about where to start and things to think about. You can also talk to your specialist nurse and psychology team who and help you think about what to say.

    Take a look at the toolkit and find out more on the SWSW CHD website
    👉 bit.ly/33IxSX1

    #myquestion #CHDNetwork #CHDToolkit
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    5 hours ago  ·  

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