Campaigning in Scotland
We are working with service providers and relevant stakeholders to improve health care provision. On our behalf, Dr Liza Morton sits on NHS Scotland’s Scottish Congenital Cardiac Advisory Board & their working group for developing standards.
In Scotland we have campaigned for:
- Healthcare standards for those in Scotland born with a heart condition (GUCH/ACHD patients), written by experts, based on a national service, approved by the Scottish NHS, to ensure safe, sustainable, consistent and equitable care.
- For every GUCH in Scotland to be seen at least once by a Specialist Adult Congenital Cardiologist and receive a written care plan.
- Full funded Scottish Adult Congenital Cardiac Service (SACCS) based on the standards for the future estimated numbers of patients.
- Round the clock access (24 hour) to advice from a Specialist Adult Congenital Cardiologist for GUCHs attending Accident & Emergency.
- To ensure the national standards include a dedicated electrophysiology service, pacing clinics and access to appropriate levels of psychological support.
- Development of a network to include local outreach centres as spokes from the specialist centre hub.
- A comprehensive service for patients who are planning a family and for patients who are pregnant.
- A way to reach the estimated 50% of patients who have been lost to follow up (no longer being supported or managed through specialist health services in Scotland) and bring them into specialist care.
- An understanding by GPs of the correct referral ‘pathway’ to ensure patients receive specialist care.
- We are fortunate enough to have the support of Dr Liza Morton who is acting as our Campaign Manager in Scotland. Liza has been tirelessly working on our behalf to raise awareness of Congenital Heart Disease and The Somerville Foundation, through many means, including but not limited to:
- Submitted a petition to The Scottish Parliament & presenting to the Public Petitions Committee
- Attending & presenting to the Heart Disease and Stroke Cross Party Group at the Scottish Parliament
- Sitting on the steering group developing a Patient Panel at the Scottish Adult Congenital Cardiac Service
- Working in partnership with other patient organisations including Bravehearts
- Improving awareness about living with a heart condition from birth, in Scotland
- Sitting on the working group of The Scottish Congenital Cardiac Network (SCCN) tasked with developing Scottish Standards for the care of adults born with a heart condition
View more information here:
Read the Holyrood article ‘The heart of the issue’ featuring Liza Morton
Fundraising – Find out more in issue 74 of GUCH News
Liza’s brother and colleagues from the Falkirk Round Table raised an incredible £9,000 for us. See our Fundraisers section for more details.
Regular updates can be found in GUCH News. See Dr Liza Morton’s articles in issues 72 & 74.
Liza has written several guest blogs, for The Pad – A Quick Word & Living with a Pacemaker
In Scotland we now have a ‘National Managed Clinical Network’ known as the Scottish Congenital Cardiac Network (SCCN). The network aims to bring together service users and those responsible for care provision to improve congenital cardiac care in Scotland. If you would be interested in joining the network email email@example.com. You won’t be required to do anything, unless you want to, and will be kept up to date about the work they are doing. For more information about the network visit their website (www.sccn.org.uk).
You are welcome to attend local events run by SCCN.