Patient: Adam Stevens
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Adam's Story

Name: Adam Stevens Age: 39 Age when diagnosed: 2 weeks (originally suspected ToF) Condition: Transposition of the great arteries. How has having a heart condition impacted on your mental health? It’s given a schema of life that…
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Emily's Story

Name: Emily Sterling Age: 24 Age when diagnosed: 6 weeks old Condition: Bicuspid aortic valve, mixed aortic valve disease (aortic stenosis and regurgitation) In February 2015 (just after my 20th birthday) I had open heart surgery…
Somerville Foundation Appeal
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Susan's Story

Name: Susan Manley nee Millard Age: 66 Age when diagnosed: Before 1 year old Condition: Three holes in the heart and faulty Tricuspid valve How has having a heart condition impacted on your mental health? We were the experimental…
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Roderick's Story

Name: Roderick Skinner Age: 77 Age when diagnosed: 44 Condition: Triple bypass and replacement of defective (congenital)  aortic valve with a mechanical heart valve. How has having a heart condition impacted on your mental health? The…
Somerville Foundation
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Izzy's Story

Read an Extract from Izzy's original post... My Open Heart. I started to walk faster, legs shaking, and sheer panic overtook my entire body. As fast as my shaking legs could take me, I stumbled down the escalator of Oxford Circus station, attempting…
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Annual Conference 2019 Liverpool

Hearts & Minds: Supporting the mental health of congenital heart patients We very much hope that you will be able to join us for our Annual Conference which this year will be held in Liverpool. Our focus for this conference is on mental…

Press Refresh - Mindful Relaxation

Mindful relaxation: using our imagination to soothe ourselves and de-stress. 14th March 2019 - ECHO Office, Canterbury House, 1 Royal Street, London SE1 7LL https://www.eventbrite.co.uk/e/press-refresh-tickets-56039133557 Places must…

Compassion it

Cultivating self compassion. Compassion is the concern for pain and suffering, whether our own or someone else’s and, most importantly, the desire to relieve it. Compassion can be given to yourself or others. Generally we are very good at…

Heart Month

Setting Challenges as Motivation There are many things my heart is beating for – friends, sports, travelling, horses… The list goes on, but what I have come to realise since my last open heart surgery is that the most important thing is…

GUCH News Issue 92

GUCH News is now available to download. GUCH News Issue 92 - National Heart Month Edition 2019
Dr Morton ACHD
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Campaigning in Scotland

We are working with service providers and relevant stakeholders to improve health care provision. On our behalf, as our voluntary Scottish Campaign Manager, Dr Liza Morton sits on NHS Scotland’s Scottish Congenital Cardiac Advisory Board &…
happy-hearts

Counselling Support for Children and Young People

Here are some options you can explore to find  counselling and psychological support near you. Youth Counselling Services: Based in your local area, sometimes run by the local authority or by a charity. These vary across the country and…
Anne Crump

Ways into Relaxation

Anxiety is part of life and a feeling we all experience. A little anxiety can help us perform well at tasks and can bring about a heightened alertness that can be useful in situations where we might need to take care of ourselves. Too much anxiety…

GUCH News Issue 91

Guch News is now available to download. GUCH_Issue-91
Anne Crump

So What is Mindfulness?

Mindfulness is a mind-body approach that has become popular to help people manage anxiety, stress, recurrent depression, pain and long term medical conditions. Mindfulness has its origins in Buddhist and Eastern Traditions drawing on meditation…
NIGHTRIDER

GLASGOW Nightrider 2019

NIGHTRIDER™ GLASGOW 2019 Date: 22/23 June 2019 Distance: 50km or 100km REGISTER NOW  After the success of the inaugural Glasgow Nightrider in May 2018, the iconic charity bike ride is returning to Scotland in 2019. You can be a part…

LONDON Nightrider 2019

Last chance to join our team NIGHTRIDER™ LONDON 2019 Date: 8 / 9 June 2019 Distance: 50km or 100km Nightrider is celebrating its 10th anniversary in London 2019, and you can be a part of this special cycle challenge! Taking place throughout…
Surgeon looking at digital heart on a screen

Data leads the way

The Newcastle Freeman Hospital department of Paediatric and Adult Congenital cardiology serves a UK region of just under 3 million people (5% of the total UK population). All congenital abnormalities are recorded on the region’s NORCAS (Northern…
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How to Access Counselling and Psychological Services

How to find counselling & support services. Reasons for thinking about this might be because you would like space to talk over concerns or feelings related to having congenital heart disease or because of other life issues. This is a…

My life on Warfarin

I have been taking the drug warfarin since I was just six months old. I'm now 23, and when I tell people I take warfarin, they are sometimes confused and shocked. Why would a seemingly healthy 23 year old woman be on a drug commonly associated…
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Getting older with CHD - Part 2

"acquiring" other conditions This is the second of two articles Written by Dr Leisa Freeman, Consultant GUCH Cardiologist, and Toni Hardiman, Specialist GUCH Nurse GUCH Clinic Norfolk & Norwich University NHS Hospital.  These articles…
Surgeon looking at digital heart on a screen

Clinical Research for Congenital Cardiology

From a patient perspective, the concept of being involved in clinical research may be daunting, disconcerting, and unsettling but, equally, it can be rewarding to have the opportunity to increase the knowledge of how best to manage their condition.…
MRI Scan
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You need an MRI scan of your heart

Written collaboratively by Jonathan Upton, adult congenital heart patient and Helena Francis, Adult Congenital Heart Clinical Nurse Specialist at University Hospital Southampton NHS Foundation Trust Perhaps these words are familiar to you.…
Echocardiology Screen

What is an Echo

Written by Jo Quirk, Cardiac Nurse Specialist at Leeds General Infirmary A transthoracic echocardiogram (commonly known as an echo) is a scan of the heart using a machine, a probe and gel. The probe is placed on the chest wall and ultrasound…

Managing Your Heart Condition

Since the first diagnosis of congenital heart disease, medical care and treatment have advanced, and many patients are living longer and healthier lives into adulthood and old age. All adults living with a heart defect should talk with a…

NHS England proposals for congenital heart defects services consultation

Now closed, NHS England proposals for congenital heart disease services consultation In February 2017, NHS England as the public body responsible for commissioning specialised congenital heart services, launched a consultation to ensure excellent…

Ensuring the Best Standards of Care

Adult Standards Advisory Group This is writing a set of standards for the NHS in England which more clearly defines the care which should be provided for adults with congenital heart disease. It has representatives of all the national medical…