A good person to know and hang out with. Patient expert #CDH , research author, advocator of charity, Yoga Teacher. Loves family, travel and Yoga. Opinions mine
#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
@mbrrace By learning from these women's deaths we will improve care and prevent deaths in the future, which is the positive action to take away from the day. Thank you to all the volunteer midwives, doctors and nurses who have assessed women's care, lay summary writers and @mbrrace staff
We were honoured to have Mr. Haitham Dagash, paediatric surgeon
@LeicChildHosp give an excellent talk on CDH, ECMO and all the consideration for care, surgery and outcomes.Thank you!!
A few of the 30 that attended f2f and virtually from across the UK @CDHUK_CHARITY@NNAUK1
@CDHUK_CHARITY Thank you to Queens University Belfast and @EastwoodPatrice and colleagues from RVI for a special CDH Community Conference! We made lots of new friends and learned new things about patient expectations and priorities #cdh#ccc#qub#cdhuk
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 👇🏿
https://t.co/C6VMRQ5wTy
https://t.co/GSqvB36qyR
#cdh #joininjune4cdh #awareness
April has been a busy month! @ernica_ern annual meeting presenting on Patient priorities in research and perspectives in signposting and #CDH2024 symposium plus the launch of @CDHUK_CHARITY new information short film 😀 #cdh#ideaalliance
Every winter we see our services at breaking point due to illnesses caused by viruses such as RSV. An RSV vaccination programme could be transformative.
We need your help to persuade the UK Government to make this a reality.
Sign our open letter today! https://t.co/jLHs6L2NS5
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
@StephenHearns1@easyJet First thing I was taught in nursing training. Can still remember how to do it, but can never remember which is systolic and which is diastolic!