Despite the DoH developing standards for the care of Adult Congenital Heart Patients in 2006, and many ACHD patients reaching adulthood a generation ago, Scottish patients still do not have national standards for their care.
Without Standards there are no guidelines for the care of ACHD patients. This presents risks particularly regarding the care of ACHD patients by non-specialist cardiologists.
Further, this means there are no standards to guide the care of ACHD patients for GPs, when they present to A&E or other to health professionals.
This also means that consistency and equity of care cannot be standardised.
Without standards how can gaps in services and between the current level of care and that required be measured and monitored?
How can patients ensure that they are recieving the care to which they are entitled without standards? How can they inform themselves, and local care providers, about their care?
Without standards many patients are left feeling uncertain about their care and unsafe.
A growing number of CHD patients are leaving paediatric care each year and will also need to be supported as adults.
A lack of adequate resources and standards leave clinicians "fire fighting" rather than being able to provide adequate or preventative care. This is not an efficient use of NHS resources. The NHS is left to pay for its "mistakes". Further, this economic burden is even greater if loss of earnings and sick pay are taken into account.
Is it ethical to provide world class care to save a baby's life, with palliative rather than preventative treatment, if this care is not extended to the rest of that person's life?