Daring to Dream’s mission is to support the emotional health and wellbeing of adults living with physical illness in Wales.
Why does this matter? It matters because we experience illness (and the impact of its treatments and interventions) physically and emotionally.
The clinical teams provide us with great medical expertise and care, but in order to live as well as possible with the impact of physical illness and its treatments, then we need to also acknowledge our emotional responses to it.
Our emotional health and wellbeing is our ability to be emotionally self-aware, being able to acknowledge and describe our feelings related to being ill (maybe we feel hurt, angry, scared, upset and so on) and then being able to express those emotions appropriately and talk about them with family, friends, medical support.
Approximately 1.2 million adults in Wales are living with physical illness and they each need to deal with not only the illness but also come to terms emotionally with what is happening to them physically; so this is a huge under-served and under-represented agenda.
As the charity grows, develops, and puts down roots, we are finding there are certain themes of emotional health needs that are emerging. One of those themes is, without doubt, the particular emotional health and wellbeing needs of young adults living with chronic conditions.
Often having been born with conditions that need ongoing treatment or hospital stays, they still want to gain independence, go clubbing with friends, go to university, build a career, have families ……… and yet they must also continue to deal with the impact of the health condition they have and all its treatments.
One of our young supporters, Amy Penn, totally understood this. She was passionate about raising the need to support young adult cardiac patients and to raise funds to provide individual gifts, services, and activities to support such young patients who are treated by the cardiology teams in University Hospital of Wales.
Amy was determined to have her celebratory ‘Daring to Dream Ball & Auction’ and fundraiser, which should have happened in April 2020. Sadly the pandemic intervened; the event was repeatedly rescheduled and then even more sadly, Amy passed away in June 2021, a few weeks before her 22nd birthday.
Working closely with Amy’s family, Daring to Dream took forward the Ball and fundraiser, which took place early in September 2022.
Our joint aim was to celebrate Amy and her life, to have a happy and joyous and healing evening and to raise funds which the charity will use to support young adult cardiac patients as per Amy’s wishes.
Dr Dirk Wilson, Paediatric Consultant Cardiologist at University Hospital of Wales, was one of the many who had cared for Amy over her life, who joined us on the night: “Through my work as a paediatric cardiologist, it was a privilege to help to look after Amy for many years. Amy’s Ball, supporting the Daring to Dream charity, was a joyous event.
It was wonderful to meet with so many whose lives she touched. Amy leaves a legacy of love and hope for all young people with serious health problems. We all miss her terribly.”
Hayley’s family so much appreciated the really important and positive celebration of Amy and the start of her legacy. Scott Penn said: ‘What a wonderful evening! It was an honour to host the ball on Amy’s behalf and we are forever grateful to ‘Daring to Dream’ for enabling the event. It was truly humbling to see Amy’s vision and inspiration be rewarded with such love and generosity.’
Daring to Dream’s plans include provision of: live music, dog therapy drop-in clinics, on-call / on-demand hairdressing, provision of youth worker support to assist young congenital heart disease (CHD) patients in their transition from paediatric to adult care, regular one to one youth worker online check-ins with individual young CHD patients, creative and expressive writing online workshops as well as a scheme to provide ‘treats’.
The charity intends to pilot and learn from all these activities and services. Subject to funding, it will expand its services into other clinical specialities.
The Adult Congenital Heart Disease (ACHD) nursing team, many of whom joined us to celebrate Amy’s life at the Ball, have been inspired to add to the fundraising with their own team event, increasing the funds and support that Daring to Dream will soon begin to provide.
One of the team, Sarah Finch, said “On a daily basis we meet and care for the most amazing, courageous, and inspiring people. Not only each of the individual patients but also their families and friends.
We meet patients from the age of 16 upwards and care for them throughout their lives. Consequently, we are privileged to get to know our patients incredibly well.
For young cardiac patients in particular, hospital stays can be very challenging, not just physically but emotionally. Following their move from paediatric to adult care, it is often the first time they are staying in hospital alone; they are missing out on ‘normal’ life (school/university/work/going out clubbing), they feel very different to their peers. On top of that they are also coming to terms emotionally with their own morbidity and possible mortality. This is a huge amount to deal with emotionally, let alone physically.
Emotional health and well-being plays a huge role in how our patients respond to treatment, and how they interact with the environment.
The funds raised will help provide additional support for our young cardiac patients whilst they are in hospital – an invaluable and important resource for us to tap into and will allow us to provide those little extras, that make such a difference to individuals when they are at their most vulnerable.
Importantly, the funds and support also build upon and continue the legacy of those very special and inspirational young cardiac patients who are sadly no longer with us, even as they continue to shape and influence the way we care for others.
The ACHD team adding to the fundraising with their team challenge of covering 600 miles during the month of October! You can still support them and Daring to Dream via: https://www.justgiving.com/fundraising/achd-nurses