Back in 2012 The Somerville Foundation appointed me as their (voluntary) Campaign Manager in Scotland after seeing me present evidence to The Scottish Public Petitions Committee at the Scottish Parliament. I had submitted a petition to the Scottish Government to ask for Healthcare Standards and improved care provision for adults born with a heart condition following various critical challenges with my own adult care and after reaching out to others to find I was far from alone. Congenital Heart Disease (CHD) is the most common birth defect, affecting 1 in 125 babies. 90% will now survive into adulthood compared with just 20% in the 1940s. We can thank advances in modern medicine for this growing population. This is a heterogeneous group including people with a wide variety of different cardiac conditions of varying complexity. Currently, there is no cure for more complex CHD with treatment and lifelong monitoring required. For today’s adult survivors, treatment has often been experimental while their care provision has all to often not evolved in time to meet their needs and many patients are lost to follow-up. There is an estimated 16,500 such adults in Scotland, although worryingly around half are lost to the system. At least a further 135 patients each year make the transition from paediatric services in Glasgow (NHS National Waiting Times Centre, 2012).
When I reflected on our collective experiences, I kept coming back to the same question; Is it ethical to provide medical care to save a baby’s life, with palliative rather than curative treatment, if this care is not extended to the rest of that person’s life? I think not. When I presented the details of my own experiences to those delivering my care the message I heard back was that Scotland needed a patient voice, backed by The Somerville Foundation, to drive improvements in care and we needed Healthcare Standards to ensure this.
My work as Scottish Campaign Manager over the last five years has been a steep learning curve of trying to grasp how the system works. I could not have do so without mentoring from Michael Cumper, The Somerville Foundation’s Vice President who has answered countless emails asking him how to navigate the political system and benefiting from his experience of lobbying for improved care and developing standards in England, Wales and NI. In Scotland the health agenda is devolved. Therefore, we need our own voice to fight for improved care. The Scottish Government sets health priorities for NHS Boards. There are 14 regional NHS Boards which are responsible for their population's health and the delivery of frontline healthcare services. A further seven special NHS Boards and one public health body support the regional NHS Boards by providing a range of specialist and national services.
In Scotland the care of adults with CHD follows a ‘Shared Care’ model. This means that care is shared between a national specialist centre and local care providers. The National Specialist centre is called the Scottish Congenital Cardiac Service (SACCS) which sits at The Golden Jubilee National Hospital in Clydebank. It is run by a team of Specialist Congenital Cardiac Cardiologists, surgeons and nurses who offers highly specialist care, when required, to adults living in Scotland with CHD. This National Centre of excellence was commissioned by the National Service Division (NSD) one of the special health boards, in 2007.
First, we needed to raise the profile and needs of adults living with CHD in Scotland. From the outset it was apparent that we pretty much weren’t on the Scottish Government’s agenda. In Scotland, there are a few ways to get on the government’s agenda such as submitting a petition to the Public Petitions Committee at the Scottish Parliament, joining relevant Cross Party Groups and asking MSPs to submit parliamentary questions. I tried them all. Social media has been mostly a blessing, on occasion a curse. I was lucky that BBC Reporting Scotland, STV News and ‘Holyrood’ (the Scottish Parliament’s publication) reported on the petition. I wasn’t comfortable about being broadcast to the entire nation crying, particularly regarding my work (nobody wants to see their psychologist crying on the TV) but you need the right amount of top down pressure to be heard. Our project Scarred FOR Life also served as an important Public Health campaign raising the profile of ACHD with the public, media and ultimately those responsible for providing our healthcare.
Getting on the agenda is one thing. However, it is all too easy to slip back off. To stay on it you need to keep your seat at the table by turning up to meeting after meeting, year after year come wind, rain or snow. You have to keep on repeating the issues until you are boring yourself whilst not becoming frustrated by the ever changing faces, bureaucracy and politics. The obstacles came at me when least expected. Once I raised my head above the parapet I felt like a target for everyone’s frustrations. When problems that were there all along were highlighted it was all to easy to attribute them to our campaign work.
It has been a long journey with two steps forward and one back. We gained a win in 2013, when NSD commissioned a National Managed Clinical Network (the Scottish Congenital Cardiac Network - SCCN) to develop both National and Local Healthcare Standards. I sat on this Network as a patient representative for The Somerville Foundation and I was disappointed when it was decommissioned just two years later.
Following this, the remit of the SCCN was assumed by NSD who formed the replacement Scottish Congenital Cardiac Advisory Board which again I sit on as a patient representative for The Somerville Foundation. Finally, on the 31st of January, 2018 NSD issued specialist adult and paediatric standards for congenital cardiac services in Scotland. These National Standards, issued by NSD on their Scottish Congenital Cardiac Service website, set out a framework for the National service (SACCS). They state who should be seen where and for what aiming to eliminate occasional practice (e.g. cardiac surgeries should only be carried out at the national centre) and to improve care across many vital areas such as 24 hour assess to consultation with specialist cardiology, psychological support and improved communication with local care providers. These comprehensive standards aim to encompass the whole patient pathway. Issued by the commissioners of the service they reflect an important commitment from them to develop the service to meet them. This is a very important step for Scotland. For the time we have standards for our care.
As mentioned above, care of adults with CHD follows a ‘Shared Care’ model between national and local care providers. In Scotland, local care is managed by each of the 14 local health boards. Following public consultation in 2016 NSD transferred the remit of local standards to Health Improvement Scotland (HIS). HIS work to develop evidence-based standards for effective clinical practice, to drive and support the improvement of healthcare practice and to provide assurance about the quality and safety of healthcare through scrutiny and reporting on performance. Following publication of standards, HIS continue to work with NHS boards to support their implementation and, consequently, improvements to patient care. I am not sure what the timescale of this work is but we are on their work plan and this is very important.
You can view the National Healthcare Standards here.
National Service Division
Scottish Parliament PE01446: Scottish Standards for the Care of Adult Congenital Heart Patients
Scottish Congenital Cardiac Services
Scottish Adult Congenital Cardiac Service
Scarred FOR Life
Health Improvement Scotland (2013) Paediatric Cardiac Service Review Report, NHS Greater Glasgow and Clyde. NHS Scotland.
NHS National Waiting Times Centre. The Scottish Adult Congenital Cardiac Service - The future delivery of the service - a strategy document, 2012.
NHS Scotland. Scottish Congenital Cardiac Network, Annual Report, 2012.
Wray, J., Friglola, A. and Bull, C. Loss to specialist follow-up in congenital heart disease; out of sight, out of mind, Heart, 2012; 99(7):485-90
Momentous day for campaigner, Ella Rhodes Reports (2018) in The Psychologist, 31, p14.
Freeman, T. (2014) The Heart of The Issue: A strong patient voice making a difference (interview), Holyrood Magazine.
This article was originally published in The Somerville Foundations, GUCH News, April, 2018.