Life has suddenly become a lot scarier, however we want you to know that we are here for you. Whether you are feeling bored and are in need of something to do or you simply just need someone to talk to, please get in touch with our team, we would love to hear from you and help in any way we can. The quotes below are from other CHD patients about how they are currently feeling:
‘I cannot see Covid-19, I do not know who has it, or where I might get it, but I do know I would be very, very ill if I did.’
‘I had open heart surgery just before lock down and was sent home – I just do not know who to talk to’
‘I always look so well, people do not understand how ill I really am, and Covid19 is making it worse, because people thinking I’m faking it’
‘ I do not know whether my heart and lungs are strong enough to survive this illness and I am terrified’
‘I’m bored, stuck at home, feeling alone, I can’t see anyone I care about and don’t know what to do with my time.’
We want you to know that you are not alone, there will be others out there feeling exactly the same way.
What are we doing?
on the end of the phone if you have a question or want to chat
running virtual activities via Facebook Zoom and Instagram
sending out our ‘gift of hugs’
checking in with our CHD community to see how people are
Zoom catch-ups for young people in hospital across our region
offering support to family and friends who may be worried at this time
liaising with the BHI to support young people
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Providing a support and information service that reduces the isolation, fear and the lack of understanding experienced by families when a child is diagnosed with having half a working heart.
The Network brings together clinicians, managers, patient/family representatives and commissioners from across the region, who work together to support patients of all ages with a congenital heart condition, and their families/carers.
The Bristol Heart Institute (BHI) is the hub for the regional adult congenital heart service for the South West and South Wales. All invasive cardiology and cardiac surgery for congenital heart disease is undertaken here with some outpatient clinical care provided in partnership with district hospitals in the region.
There are over 250,000 adults who were born with a heart condition (CHD) living in the UK. The Somerville Foundation (previously GUCH Patients Association) exists to create a world where they receive excellent medical care, and lead happy, healthy lives.