#JoininJune4CDH is an awareness campaign set up in 2010 to educate on Congenital Diaphragmatic Hernia (CDH) and to encourage funding for Research. Each year we choose a different theme or topic to focus on. This year’s theme is individualised care; why it matters and how it can help with transition of care. The basis of any care plan should be evidence. As far as possible the plan should be standardised, to serve as a bench mark for care and outcomes, BUT as we know with CDH there is no clear phenotype or guaranteed set of co morbidities and so standardising care becomes challenging. Therefore, it is important to look at whole person care and that involves a tailored approach. This plan is commonly referred to as an individualised care plan (ICP). With many years of experience is supporting families, it is our opinion that a robust ICP is a key factor in transitioning children to adult services. It gives both the patient and carer a clear ‘map’ of a person’s health, social and personal needs. This can give a patient a sense of autonomy and ability to cope when issues arise later in life. #cdhawareness

We had a fantastic day at our CDH Community Conference in Belfast yesterday, with a great turnout of families! Medical professionals from the RVI and Queen’s University Belfast ran focus groups to obtain patient and family perspectives and gave them the opportunity to engage in research. It is such a positive action to bring families together for peer support and friendship and to be able to showcase the amazing work of CDH UK 🩷🩵 Our next CCC will be announce later this year to take place in 2025. More pictures to follow from the day tomorrow 🥰 #CDH #cdhcommunityconference #cdhuk #cdhpatientjourney #cdhawareness #support

Today is the start of CDH Awareness Month! This is an opportunity to collectively draw attention to Congenital Diaphragmatic Hernia and to highlight its impact on patients and their families. It is also a chance to help improve outcomes. This year’s theme is ‘Family Impact’ and we released our new short information film ‘The CDH Patient Journey’ for you to share earlier this year(see below). We are also releasing our new information booklet ‘CDH and Feeding’ today! Head to our website is this link to see what you can join in this month to help raise #cdhawareness 👇🏿 cdhuk.org.uk/join-in-june-4-… youtu.be/tsVtDPclH8s?si=8QhW… #cdh #joininjune4cdh #awareness

We are extremely excited by this research that we supported and of the potential it has to change diagnostic techniques and methods to improve prognosis and outcomes for patients and their families. It is vital that organisations like ours are involved because of the ethical and prognostic factors that new and innovative research can pose and so we are extremely proud to be involved. #cdh #research #cdhuk #MakingADifference #Donate #patientvoice

Over the weekend details were released of the case of Lucy Letby the neonatal nurse found guilty of horrendous crimes and today she was sentenced to life imprisonment. We would firstly like to pass on our condolences to all of the families who suffered under her care. We want to reassure families who this may have impacted, particularly if you are in NICU at the moment or are expecting a baby due to go into NICU. Our neonatal services in the UK are amazing and we fully support the wonderful neonatal nursing staff who work so hard to save and treat babies up and down the UK. However we understand how this heartbreaking news may have impacted our families and the staff who care for them. We are here to support you all and we will work with professional bodies to help support any recommendations made as a result of this, to maintain patient confidence and support our wonderful neonatal services. #cdh #nicu #neonatal #news #pressrelease #LucyLetby #neonatalnurse

We had a fantastic day yesterday at our CDH Community Conference at Alton Towers! It was so lovely bringing more families together for support and friendship and we raised lots of awareness throughout the park with our teach shirts and CDH symbol tattoos! We also had a visit from Duggee and our Chairperson Bev got rather excited about this (photo to follow!). If you would like to share your photos of the day with us then please send them to our inbox. We can’t wait for next year’s CCC! Don’t forget that tomorrow is #CDH #awareness day so wear your #colours4cdh think pink, do blue how you show CDH colours is up to you! 🩷🩵 #joininjune4cdh