Today, (Thursday 13 July), a report by the Healthcare Safety Investigation Branch (HSIB) has highlighted numerous concerns about the delivery of palliative and end of life care across England.
Their investigation reveals that palliative and end of life care is ‘variable and inequitable’ across the NHS, and the report includes a series of safety recommendations and actions.
To understand the impact of inconsistent palliative care, the HSIB looked at the case of Dermot – a 77-year-old patient who was diagnosed with myxofibrosarcoma in March 2020, and received support from Sarcoma UK.
Commenting on the report, Dr Sorrel Bickley, Director of Research, Policy, and Support at Sarcoma UK, said: ‘This report sadly confirms the postcode lottery of care that many people experience when they require palliative and end of life care. We stand alongside Dermot’s family and share their serious concerns that he was unable to access the care and support he needed during a time of unrelenting difficulty and uncertainty.
‘Around 15 people are diagnosed with sarcoma every day, and families should expect to receive a high standard of care. No-one should feel alone and it’s vital that people and their families can also access psychological support.
‘Sarcoma UK has been advocating on behalf of Dermot’s family since his initial diagnosis, and we share their devastation that he spent his final weeks in these distressing circumstances. We support the HSIB’s recommendations and believe these learnings have the potential to help many people receiving palliative care to have better deaths.
‘Going forward, we hope that NHS England will work closely with healthcare professionals and organisations like ours to ensure that people with sarcoma can find dignity, comfort and proper care throughout their palliative care.’
We stand alongside Dermot’s family and share their serious concerns
Here, Dermot’s brother-in-law, Richard, 60, also shares the family’s insights into Dermot’s experiences and the changes that are needed to improve care for sarcoma patients:
‘My brother-in-law Dermot was a fit, healthy, and youthful 77-year-old. He enjoyed playing tennis and volunteering with adults with disabilities, but in March 2020, he was diagnosed with myxofibrosarcoma, a less common cancer of the soft tissues.
When Dermot got the diagnosis of this rare sarcoma, he faced the challenge with his characteristic courage and pragmatism. With the support of his family, including his wife of 52 years, Chris, and his sister, he did everything he could to get the care he needed. He looked forward to months, even years, of healthy life after recovery from surgery in May 2020. But sadly, this form of sarcoma was particularly aggressive. The cancer recurred and metastasised, and he died in November 2020.
We were shocked by how quickly the cancer spread and the difficulties palliative care services had in making a difference to his suffering. The family made a referral HSIB in order to achieve system learning because we wanted to make sure that others need not go through the same experience.
In the last nine months of his life, Dermot was in contact with over ten different services. In order to gain maximum system learning we obtained a copy of his medical notes, and this was revelatory in helping us understand what happened and why. It reminded us both of what happened over those difficult months and allowed us to better see how services had managed the case and their view of the situation.
We welcome HSIB’s national investigation and its findings, but we believe that more learning is needed around the management of sarcoma, particularly relating to the long delay in diagnosing the recurrence and metastatic spread of Dermot’s disease, despite what was known about it after surgery. Services also showed a lack of understanding of what was happening and why at the point of change in prognosis.
During Dermot’s illness, we were fortunate to come in to contact with Sarcoma UK. They confirmed that Dermot’s experiences were not uncommon with some types of sarcoma, and we were very grateful that they were interested in sharing our wider perspective on what services can learn about sarcoma care and the patient pathway beyond the palliative care focus of the HSIB report.
We’ve put together our own recommendations, which provide clear, simple and positive suggestions to improve the sarcoma patient pathway.
We would like to acknowledge that we understand the huge resource constraints on the NHS, but we believe these recommendations need to be urgently addressed to ensure continuity of care. We also note the increasing amount of learning about cancers like sarcoma, with new diagnosis and treatment options becoming available, and these in themselves have palliative care service implications.
But we also want to share insights, from a family perspective, about what services will need to address for those patients with particularly aggressive, unpredictable forms of the disease. It’s about cross-speciality and cross-service learning, where the insights of patients and families can form a valuable starting point and influence the conception, design, and coordination of services.
We hope our ideas for an improved sarcoma care pathway will be read, shared, and discussed. We believe these recommendations can be of value for primary and secondary healthcare services working with sarcoma patients including palliative services, as well as patients themselves and their families.’
If you would like to get in contact with the family, please contact Sarcoma UK via this email.