Feel Good Friday

Scottish Parliament

Suzie would like to say thank you to the Scottish Heart Disease and Stroke Cross party Group for inviting her to attend their meeting last night. The aim of the meeting was to discuss the care pathway for children and adults with Congenital Heart Disease. There were two excellent presentations.

Liza Morton talked about her personal experience of living with a congenital condition and her need to raise the profile of care, she has orchestrated a petition to improve 24/7 access to expertise for Adults with Congenital Heart Disease.

Dr Hamish Walker Clinical Lead, Scottish Congenital Cardiac Network gave a very interesting talk on the building of the Scottish Network of Care and the results of a patient survey. Suzie has asked Dr Walker if he would send us his talk so that we can make it available to all of our members. The talk clearly sets out how important it is to listen to patients as their identified needs are not always the same as the professionals.

They both talked about adopting the adult standards of care as their bench mark to measure how the service is improving.

Suzie Says “ As the debate about networks of care continues in England it was very interesting to hear how Scotland, who reconfigured their surgical services a long time ago, have moved forward with joined up services very positively. Let’s hope that following the current review in England we are able to work to build the same regionally based network service”

Suzie had an opportunity to meet up with The Scottish Somerville Foundation team and the Scottish BHF team as well as meeting up with one of LHM’s own members who had attended to gain a greater understanding of the future service available for her child.

We will continue to work to gain a greater understanding of the Scottish network.

Feel Good Friday

Feel Good Friday

Anticoagulation

Many young people with half a working heart are prescribed an anticoagulant, a medicine that slows the bloods ability to clot, to help ensure that their blood moves smoothly around the body. The medication used can vary but it is very helpful if young people, parents, carers and teachers understand what being on anticoagulation means to everyday life. If you would like to know more about anticoagulation, you can download a copy from our information publications.
Remember that Little Hearts Matter members can ask for a hard copy for free and remember we are always available if you have questions, email us at info@lhm.org.uk or call on 01214558982. 

Feel Good Friday

Oli's Transplant Story in Pictures

Oli received his new heart in August 2013, and he's doing very well. Here you can see him being flown to hospital in a private jet, post surgery, and looking very mischievous a few weeks later. 

If you would like to find out more about the transplant process visit www.organdonation.nhs.uk or if you have any questions contact a member of the LHM team on 01214558982.