COVID-19 Mental Health Support for Heart Patients

The purpose of our Aviva Community Fund Campaign is to support adult heart patients at increased risk from COVID-19.

Imagine a world where everything changes. Visiting your GP is potentially a very dangerous thing to do. Your six-monthly appointment has been cancelled without a new date being offered. That MRI scan will not happen anytime soon. Your pacemaker batteries are going flat, and the nurse you often contact is now uncontactable.

Indeed, your hospital, that clinic you rely on so much, has now become a COVID centre. You don’t want to get COVID. You’re not very good at getting ill.

You can help us make a difference by donating to this campaign.

Watch our Video Appeal presented by Roger Black

AT THE HEART OF IT

More about Congenital Hearts

Adults with congenital heart defects are normal people like everyone else. Their hearts just work a bit differently. Sometimes, in more severe cases, people with heart conditions can’t do things other people can do. Sometimes they can’t exercise or go for a walk like you can. This has a huge impact on their mental health. They can’t “just get on with it”. Some have anxiety, or multiple health conditions. Some are able to be very active. There really is no one size fits all for people who have been born with a heart condition.

We urgently need your help in order to support adult heart patients who are at increased risk from COVID-19 but also seeing their specific NHS clinics changed to COVID centres.

We want those in our community to feel that they are not just a number or be defined by their diagnosis. The Somerville Foundation are the only charity in the UK who supports Adults born with heart condition (ACHD). We also provide transition services to young people who are entering into adult congenital services. We want all patients to get the right medical attention they need. We want them to feel they are more than their medical condition. We want them to be heard.

Here to help - together we can get through this!

We know that the vital support we offer is needed now more than ever, and we hope that with your help we can remain sustainable and available to help more adults with ACHD now and in the years to come. Together, we can beat this!

Although our team is currently reduced, we are pulling out all the stops to provide as many avenues of support for our ACHD patients during this difficult time, providing:

  • A webinar with Professor Michael Gatzoulis, Professor of Cardiology, Congenital Heart Disease Royal Brompton/Harefield NHS Trust & Imperial College, London, UK; made possible with Rob Nicoll – Trustee The Somerville Foundation UK, Ms Rachel Adam-Smith, Yorkshire, UK (ACHD Patient of Brompton) and the team in Italy; Professor Massimo Chessa, Head ACHD Unit, Policlinico San Donato, Milan, Italy and Dr Paolo Ferrero, Consultant Paediatric and Adult Congenital Cardiology, Bergamo, Italy
  • ‘Ask a question’ to Fiona, our retired nurse specialist
  • A successful zoom session with Richard Bird as part of Mental Health awareness week
  • A Facebook Fundraiser, raising over £2000 enabling us to un-furlough a member of staff
  • The 2.6 Challenge raising vital funds to replace those normally achieved from the London Marathon
  • Moved office and re-organising layout so staff can social distance when they all return to work from the office, staggering start and leave times, providing hand sanitizer etc
  • Zoom calls with Professor Jane Somerville

There’s more to come:

  • A fundraising campaign to enable us to provide more webinars and information sessions
  • A follow-up zoom session with Dr Liza Morton, clinical Psychologist joining our Mental Health & Wellbeing Counsellor
  • Currently building a self-help toolkit
  • Virtual meet ups
  • A ‘buddying’ system, where people with CHD are happy to chat to other patients who have questions or are struggling with being in isolation

We continue to offer:

  • Services of our Mental Health & Wellbeing Counsellor
  • Confidential Helpline
  • Employment law specialist help
  • Life insurance
  • All our social media channels up-dated regularly with interesting and engaging posts
  • Website constantly up-dated with new resources added including Coronavirus guidance of our own, written by Dr Fiona Walker, our medical adviser as well as information from various specialist centres and the British Congenital Cardiac Association (BCCA) and links to nhs and gov.uk sites.

Thank you for your continued support and understanding at this difficult time. We continue our fundraising efforts via online channels and campaigns as well as applying for funding with limited resources. A huge thank you to Richard Bird for providing his services free of charge (for 3 months) and to the FaceBook moderators who have found themselves monitoring the group so much more during this time.

A massive thank you to all, our ACHD patients and supporters for bearing with us, supporting us with the various fundraising campaigns as well as our volunteers Sam and Katie. We can’t do what we do without you.

Read our services announcement here.

Help Us Make A Difference

Now, more than ever, our community needs us. With many adults shielding as they are at high or extremely high risk, they are completely cut off from their support systems and usual avenues of receiving help. Often, anxiety is at the forefront of someone with a heart condition. Being part of a community of like minded individuals like our private facebook group, they can find the peer support and social interaction they need. Right now, our online communities and mental health counselling are essential to adults with congenital hearts to keep them positive, as healthy as they can be and to not feel alone. We had also initiated three other social groups aimed at young people and parents as well as loved ones of those who have ACHD that have been suspended due to a lack of resources and staff capacity due to COVID19. There is a huge need for these groups to proceed in order to provide the support and network those in these communities need.

We support the ACHD community in so many ways, read more here. Our  biggest objective for all our patients is to empower them to advocate for themselves.

About Us

The Somerville Foundation are the only UK charity dedicated to supporting adults born with a heart condition (ACHD). There are over 250,000 adults who were born with a heart condition living in the UK. The Somerville Foundation further provides support for young people transitioning into adult heart services. The charity exists to create a world where they receive excellent medical care, and lead happy, healthy lives.

WHAT IS A CONGENITAL HEART DEFECT? 

Congenital heart defect (CHD) describes a heart condition or defect that developed in the womb. The term “congenital” means the condition is present from birth.

OTHER LINKS

  • Read our 2019 interview with Roger Black
  • Youtube Channel
  • Vlogs COVID & Mental health Playlist
  • Listen to what a normal resting heart sounds like

FOLLOW US ON SOCIAL MEDIA

Facebook | Linkedin | Twitter | Instagram

CHECK IT OUT

A short film by Paul Mulgrew and Jarlath Houston

OUR PRESIDENT

Jane Somerville’s appeal to the ACHD Community

SCARRED FOR LIFE GALLERY

Scarred FOR Life is a special photo exhibition sharing the problems and heartache that accompany living with a heart condition, both mental and physical.

These scars are real. They are battle scars. They bear witness to the greatest battle any of us will ever face, the fight for life itself.”

Click an image to scroll through the gallery. Read more about the people involved in this campaign.

OTHER PEOPLE IN OUR COMMUNITY

We have so many wonderful people in our community that volunteer their time, expertise and share their stories. Click an image to scroll through the gallery.

WORD ON THE STREET

Chicane Internet Partnership

Chicane Internet offers business-class communication services to organisations throughout the UK. We are incredibly grateful to have their support, especially during the global pandemic and to be chosen as their charity of the year.

“I am supporting The Somerville Foundation as our Charity of the Year as it is a cause that is close to my heart. In 2018 I was fitted with a pacemaker after living with an undiagnosed heart condition for many years[…]  – Robert Kemp

Read the interview here.

Lauren Jackson

“I just wanted to express my thanks to the Somerville Foundation for providing upto Covid19 information and advice for ACHD patients like myself. The team made me feel reassured and supported, allowing me to continue my work within the NHS and help others.”

Havercroft Construction Fundraiser

“We were looking for a charity that was based locally to this project, and that we felt addressed real, current needs to local
people. The Somerville Foundation we felt were just that, their team’s proactive approach and enthusiastic contribution and communication with us throughout this project has allowed us to contribute in way that we hope will be of real benefit.”

Wendy Knowles

“Being a part of the Somerville Foundation community helps me in not feeling so isolated living with my complex heart condition. The one thing the Somerville Foundation does, that is simple, yet imperative is to bring all of us with similar congenital heart conditions together, so indeed we do not feel alone. In doing so precious, lifetime friendships are formed; providing a sense of camaraderie, comfort and reassurance throughout ones life journey. Always remembering the beautiful friends we have also so sadly lost, but remain a lasting memory in our own beating hearts.”

Natasha

“It is amazing what can be achieved when we are believed and our needs are met without question. I first contacted The Somerville Foundation when my heart health deteriorated. Since then, they have supported me in my wellbeing, provided educational resources, an online community and I even helped set up The Somerville Foundation London Meetup group for others with congenital heart disease. Chronic illness can feel lonely, but the right communities have shown me that although
we all have different stories, our feelings are universal and everyone’s experience is valid.”

Read Natasha’s Story on page 13 of GUCH News.

Roderick Skinner

“The Foundation is a constant source of advice and information. Being a part of it gives ready access to those with similar conditions and allows for a practical exchange of experience.”

Read Roderick’s Story.

Izzy - BBC4 Appeal

Somerville Foundation

“To be involved in the campaign has been a dream since my heart operation to help others and help raise awareness of mental health and the silent struggle that we go through. To find out how common it is, well I wish I’d have known sooner I would have saved a fortune having someone tell me I’m not crazy and this is totally normal and also it’s totally ok.”

Read Izzys Story.

More About Congenital Heart Defects

What is CHD?

What is CHD? Congenital heart defect (CHD) describes a heart condition or defect that developed in the womb. The term “congenital” means the condition is present from birth. The Somerville Foundation is the UK’s only charity that supports Adult Congenital Heart Patients (ACHD).
CHD is one of the most common types of congenital disability, affecting up to eight in every 1,000 babies. Today, there are over 250,000 adults who were born with such a condition living in the UK. And there are now more adults than children living with the condition.
These patients all have different experiences, struggles and achievements. We provide Adult Congenital Heart Support in a number of ways such mental health and well being, assistance in applying for grants, providing relevant information and access to resources and hosting events.
And, with many distinct types of CHD, we aim to ensure they all receive the medical care, support and advice they need to lead happy, healthy lives.

But we can’t do it alone. In order to ensure they enjoy access to every opportunity, are free from discrimination, and are fully supported throughout their lives, we need your help.

What causes congenital heart defects?

In most cases, there is no apparent cause of congenital heart defects. We just don’t know why a heart hasn’t developed normally. However, some things do increase the risk of CHD. These include:

  • Down’s syndrome
  • Infections (of the mother) during pregnancy (e.g. rubella)
  • Where the mother has taken certain medications while pregnant (e.g. anticoagulants or antiepileptics)
  • Where the mother has experienced diabetes during pregnancy
  • Inherited chromosome/gene defects
  • The mother smoking or drinking alcohol during pregnancy

CHD is sometimes picked up during an ultrasound scan before a baby is born. However, in many cases CHD is not diagnosed until after the baby is born. Some conditions may not be discovered until the child becomes an adult.

What are the types of CHD?

There are many different types of CHD. Sometimes it is possible to suffer from more than one defect.

List of Conditions

  • Aortic stenosis. A narrowing of the aortic valve opening.
    Atrial septal defect. A hole in the wall that separates the top two chambers of the heart.
  • Large ventricular septal defect. A hole in the wall that separates the heart’s lower chambers.
  • Coarctation of the aorta. Where the main large artery is narrower than normal.
  • Common arterial trunk. Where part of the heart failed to divide properly.
  • Complete and partial atrioventricular septal defect. A hole between the atria and between the ventricles.
  • Double inlet ventricle. Where both atriums feed into the left ventricle.
  • Hypoplastic left heart. Where the left lower pumping chamber (ventricle) does not develop properly.
  • Patent ductus arteriosus. Where a particular vessel does not close and remains open after birth.
  • Pulmonary atresia with intact ventricular septum. Where the valve which allows blood to flow from the heart to the lungs is completely blocked, and the main pumping chamber on the right side has often not developed normally.
  • Pulmonary stenosis. Where the valve which controls the flow of blood out of the heart into the lungs is narrower than normal.
  • Supraventricular tachycardia. A condition where your heart suddenly beats much faster than usual due to improper electrical activity in the upper part of the heart.
  • Tetralogy of Fallot. A condition with four different heart problems. A hole in the wall between the heart’s main pumping chambers, an overly narrow valve between the heart and lungs, a right heart chamber with walls that are too thick and a mispositioned major blood vessel.
  • Transposition of the great arteries. Where the pulmonary and aortic valves and the arteries they’re connected to have swapped positions.
  • Tricuspid atresia. A complete absence of the tricuspid valve.

Treating Congenital Heart Defects

Treating Congenital Heart Defects

Treatment for CHD depends on the type and severity of the condition. For minor problems, treatment may never be needed, while others may require medication or heart surgery; often throughout adulthood. Just 60 years ago, the majority of babies born with a congenital heart defect did not survive to see their first birthday.

Today, eight out of ten survive to adulthood -.The BHF

But there is much more that can be done. Help us make a difference.