Historically, there has been a considerable inequity of access to palliative care in Wales with most specialist palliative care prioritised to those with malignancy.
Alongside cancer, leading causes of death in the UK include conditions such as heart and circulatory disease, and lung disease with the prevalence of liver disease also rising rapidly.
In the last one-to-two years of life, conditions such as heart failure, respiratory failure, kidney failure and liver failure have a similar symptom burden to metastatic cancer with equal levels of distress which palliative care input could help.
However, throughout the UK patients dying from causes other than cancer are disadvantaged with only 20% ever receiving Specialist Palliative Care.
As a result, many patients who suffer from these conditions will die in hospital when they would prefer to focus on quality of life and comfort rather than having unnecessary hospitalisation and medical intervention. 80% of people would choose to be at home for end of life and this can be more often achieved if admission is avoided in the months leading up to death, yet these patients frequently spend weeks in hospital in the last year of life.
Over the last six years, a clinical team in Cardiff and Vale University Health Board led by Dr Clea Atkinson, a palliative care consultant, have developed a new Supportive Care service to better deliver palliative care input to patients dying from advanced heart failure.
By focusing on patient-centred care and working together in a highly integrated way with the referring team, clarifying what matters to patients most and managing the patients’ care together, this approach has overcome many of the previous referral barriers, improved quality of life, lessened time spent in hospital away from loved ones, reduced in-hospital deaths and helped many more patients to die at home.
The Heart Failure Supportive Care Model was established at Cardiff and Vale University Health Board in 2016. This model of care was designed to better address patient needs and with 85% of service users reporting they would recommend the service to someone else in the same position as themselves.
Patients also felt care was delivered with compassion and improved coordination of care, commenting, “The doctors and nurses of this service are of much more importance to me as a patient than could ever be expressed. To know they are there is like having a reliable, knowledgeable and loving friend. This help is making my remaining days of life easier and less daunting than it otherwise would have been” and “The team have been very supportive and the improvement in my quality of life has been tremendous. Although there is no cure, the improvement in how I feel is marvellous.”
Once the model was established in Cardiff, Clea and her team attended the first ever Spread and Scale Academy in 2019. The team recognised that this approach to palliative care has great potential for scalability since highly integrated co-speciality cross-boundary working is a reconfiguration of service approach rather than a need to embed a completely new skill base.
One of the key lessons from the Spread and Scale Academy is how to identify the most essential, non-negotiable elements of the intervention or solution you are trying to spread, and the elements which could be adapted by those looking to implement it depending on their context. To teach this, the academy uses the metaphor of a turkey sandwich; the idea being that the only components technically necessary to make one are turkey and bread, anything else that you would add to it represents the adaptations solutions undergo to make them palatable and appropriate for others.
Since their attendance at the Academy, the team identified some essential service elements such as earlier referral, co-speciality working, re-empowerment of patients to work in partnership, Specialist Palliative Care skills and a compassion-based approach.
The service has won high profile awards, including an NHS Wales Award and a MediWales Award in 2022. The team have also presented at key national Palliative Care, Heart Failure and international Integrated Care conferences, and published work in the BMJ Supportive and Palliative Care July 2022 showing that they are leading the way in this new approach to palliative care provision in non-malignant disease.
In July 2022, Clea’s team were successful in securing £400,000 to further expand the Supportive Care Service for advanced heart failure patients and also adopt a similar integrated co-speciality approach for patients with advanced liver, advanced renal and advanced respiratory conditions. Their published BMJ Supportive and Palliative Care articles conclude that a co-speciality cross-boundary method of care delivery successfully provides the benefits of palliative care to patients with heart failure in a value-based manner, while meeting the priorities of care that matter to patients most.
The model for heart failure patients has been piloted in four other Health Boards in Wales, including Cwm Taf Morgannwg UHB, Betsi Cadwaladr UHB and Hywel Dda UHB, with extremely successful outcomes. The groups involved in these pilots are also forming a new network which supports adopters. Internally, in Cardiff and Vale UHB, Clea and her team are spreading the supportive model of care for heart failure to a number of other specialities and pilots of the supportive care model will begin soon for patients under their care.
Clea was also a member of the first cohort of the Climb, the other leadership programme offered by the Dragon’s Heart Institute alongside the Spread and Scale Academy.
Reflecting on her experience of the last few years and how the programmes offered by the Dragon’s Heart Institute have had an impact on her work, she said, “My involvement in the Spread and Scale Academy and subsequently Climb have made me realise a few things. Firstly, I am not alone and am not the only one who is brave enough to want to champion change. However, I should believe in myself as a leader, which is not something I would have considered myself prior to these programmes. In fact, during my career up to this point, I had often felt criticised and ostracised for pushing for change.
“The Spread and Scale Academy helped me to open my eyes wide and embrace the biggest ideas and vision that I could imagine because I could make it happen. Following this, Climb finally showed me once and for all that I was not alone; there was a group of people similar to me with ideas and vision for a better way forward and united together we could support each other and share hope for the future of our NHS.”
To learn more about Spread and Scale , visit the Academy’s webpage.
