Adult Congenital Heart Disease (ACHD) is a lifelong chronic heart condition.
Many of the adult survivors have undergone multiple surgeries, interventions, treatments, and investigations throughout their lives, spending long periods of time in hospital. The impact of this is huge and lasting for both patients and their families.
Being an inpatient or having to make multiple trips to a hospital, either as a patient or a visitor can have a considerable bearing on an individual’s emotional and psychological well-being.
During a hospital stay, patients’ physical well-being is assessed robustly and treated whereas their emotional health and well-being is often overlooked or considered a secondary priority. The clinical team is rarely able to directly influence patients’ experience of actually being in hospital or visiting a hospital. We have no influence over the physical facilities available, for example the patients’ day room, relatives’ space, provision of clean clothes and toiletries. Nor do we have access to distraction resources such as TV, iPad, arts, relaxation, hairdressing, and we are unable to provide additional emotional and psychological support. Access to all these ‘extra’ aspects of care and facilities is more important than ever in the context of the COVID pandemic and the vast restrictions on patient visiting.
Many patients are following stringent social distancing guidelines due to their cardiac condition and therefore have suffered greatly from the effects of isolation, loneliness, anxiety and depression. Many patients are terrified of coming into hospital for urgent care due to the threat of the virus. The emotional health and well-being of very many more patients is at risk. We therefore welcome the support of the Daring to Dream charity to work with us and help provide the necessary support.
Daring to Dream has already had a phenomenal impact within our cardiology directorate with the makeover and refurbishment of the Relatives’ and Quiet Rooms. As well as physical improvements, Daring to Dream has also provided many months of live music therapy to our in-patients, has provided the basis of a “loan-library” with a stock of portable DVD players and BP monitors for loan to just-in-need patients, who can then be supported with coaching phone conversations by the nursing teams. Also being trialled in ward B1 are good quality headphones as part of a project being developed by Daring to Dream.
Without doubt we all, especially our patients and their relatives, need emotional support. Virtual personal mindfulness workshops, yoga sessions, virtual musical concerts and some ‘luxurious products’ could also make a huge difference in the life of a patient on a ward. The provision of items such as these are also within the sights of the charity.
Individuals can do their own fundraisers and use the Just Giving link to do so: https://www.justgiving.com/daringtodream
Sarah Finch and Bethan Shiers, Specialist Nurses within the Adult Congenital Heart Disease (ACHD) team in the Cardiothoracic Directorate at University Hospital of Wales