The Children’s Heart Association has an active Facebook group with members throughout the North West. If you’d like see more about what’s happening on the group in the North West, head over to heartchild.info/facebook and join the group.
Please don’t feel left out if you’re not in the North West, we also have a Facebook group for our friends throughout the UK at heartchild.info/ukfriends, and if you’re not a member of Facebook and would like more information on the discussions below, please do get in touch.
Here’s what’s been happening recently…
Paul Willgoss wrote on Children's Heart Association's wall: Hi all, The agenda and directions to the meeting on Saturday about the Adult Services are (if the tech has worked) attached. Also if you can't make it there is a livestream for the sessions apart from the at table discussions (which would be difficult to do as a broadcast) that will be found here: http://www.cmft.nhs.uk/livestream (1 comment)
Ashley Sykes posted a video on Children's Heart Association's wall: I thought share this with you 💙 xx (3 likes)
Anne Flear wrote on Children's Heart Association's wall: THIS IS REALLY IMPORTANT!! WE HAVE NO ONE who can do surgery or interventions for congenital teens/adults in the North West. There is little chance of an outpatient appointment at the moment. Our cardiologists are off sick or moving, some nurses are off sick or leaving. THIS IS HOW SERIOUS the situation has become. ACHD Patients will have to travel to Leeds, Newcastle or further for treatment for even routine stuff. Patient reps are hoping to meet with Manchester Royal on Thursday around 5ish t… (11 likes, 20 comments)
Anne Flear wrote on Children's Heart Association's wall: If you can't attend Saturday's meeting with MRI and NHS England please post your questions below. (5 likes, 5 comments)
Clare Williams posted a video on Children's Heart Association's wall: Please delete if not allowed!! Sending healing to all those who are ill ,having ops etc healing and positive energy surround you now!! (3 likes)
Last call for our Sunday Lunch next week. Need to give numbers by Tuesday. Please book through Ticket Source. (1 like, 3 comments)
If you would like your CHD child to receive future surgery in NEWCASTLE or LEEDS when they get older instead of LIVERPOOL or MANCHESTER then do nothing. If you think this is outrageous please fill in the NHS questionnaire to say that a NW service is essential and that a decision needs to be made ASAP so a new surgeon and cardiologists can be recruited from across the world to rebuild our wonderful team. https://www.engage.england.nhs.uk/consultation/chd/ We would like to have a world class se… (5 likes, 5 comments)
Julie Anne Kendall posted a link to Children's Heart Association's wall: ❤️❤️THIS IS ABOUT YOU ! ❤️❤️THIS AFFECTS YOU ! ❤️❤️THIS IS FOR YOU ! If you have read Anne Flear's previous post or have received a patient letter from your hospital ……. ❤️❤️For you to be able to have YOUR say about YOUR care, you MUST ACT NOW and complete the questionnaire on the link below – (8 likes, 4 comments)
Anne Flear wrote on Children's Heart Association's wall: There is space for about 200 people at the meeting about the adult CHD service on Saturday 1st July. You can ask questions about the plans that are in place for patients across the north west to be cared for temporarily at Leeds or Newcastle. Please be there to show this matters to YOU. This is NOT just a "Manchester" problem. Free parking on Grafton St. (4 likes)
Linda Griffiths posted a link to Children's Heart Association's wall: Directions to the Nowgen Centre. Free parking is available (1 like)
Linda Griffiths wrote on Children's Heart Association's wall: A meeting will be held on 01/07/17 at 11am (refreshment will be available from 10:30) in the Nowgen Centre in the grounds of MRI. This meeting will be with NHS England, Commissioners and Management teams. This is an opportunity to come and ask questions about how the changes to the adult congenital heart service may affect you and your family. Free parking will be available. please see attached poster for details. (2 likes, 2 comments)
Anne Flear created an event for Children's Heart Association.
Don't forget to join us for our AGM on Sunday 2nd July at the Hilton Hotel Manchester Airport. It's a short meeting with a lovely roast dinner to follow. (5 likes, 2 comments)
Anne Flear wrote on Children's Heart Association's wall: EDITED : CHANGE OF VENUE For those of you concerned about the provision for CHD adults in the North West we are having another meeting to plan our next steps. We have received a reply from each of the hospital trusts involved in the care after the letter we put together last time, and now need to plan our response. Meeting at 7pm this Thursday 22nd at the Swinging bridge pub near the Trafford centre for something to eat, or join us later if that suits you better. You're welcome even if you hav… (11 likes, 2 comments)
Linda Griffiths posted a link to Children's Heart Association's wall: On Wednesday 26th July Meet@TeenHeart are taking over Escapologic in Nottingham. You’ll make new friends as you work in teams to see if you can crack the codes and unravel riddles to escape the room in fastest time. You’ll then be able to have your say about the future of M@TH in our group workshop. The event is FREE to attend and they will cover all reasonable travel costs. Spaces are limited and preference will be given to those who have not previously attended a M@TH event. Register yo… (1 like)
David Casey wrote on Children's Heart Association's wall. (17 likes, 3 comments)
Paul Willgoss posted a link to Children's Heart Association's wall: Hi, For those interested in the care for us adults in the NW, please read this http://www.cmft.nhs.uk/media/1809080/achd%20patient%20faq%20160617.pdf If you have any concerns please ring the number in the file… (3 likes, 2 comments)
Rita Kutt wrote on Children's Heart Association's wall: Hello there. For anyone who may have missed this. Hoping the information may be as helpful to some families as it has been to my family for my grandson who has complex needs.. You may wish to check that I am genuine. If so, please just Google Rita Kutt. I am attempting to reach parents/carers of children with special needs, to raise awareness of the outcome of my campaign and to hopefully make life a little bit easier for lots of families. I'm not sure if it's appropriate for many members on her… (1 like)
David Casey wrote on Children's Heart Association's wall: PGL (12 likes, 1 comment)
Anne Flear posted a link to Children's Heart Association's wall: Our Adult CHD team are just amazing. Can you help them raise money in support of another member of the team – Jane. (5 likes)