As November draws to a close it seems appropriate to write about a very important All-Party Parliamentary Group report which was published this month: ‘No One’s Listening: An Inquiry into the Avoidable Deaths and Failures of Care for Sickle Cell Patients in Secondary Care’.
All-Party Parliamentary Groups are groups of members of both houses with a common interest (and often great expertise) in particular issues. The All Party Parliamentary Group on Sickle Cell and Thalassaemia (‘SCTAPPG’) was formed in 2008 so has a long history of keeping sickle cell and thalassaemia on the political agenda.
Sickle Cell disease is caused by a gene which affects the way that red blood cells develop: symptoms can include severe pain (as a result of what is known as a sickle cell crisis, when blood vessels to parts of the body become blocked), increased risk of serious infection and anaemia.
This particular report was triggered by a Coroner’s comments following an inquest into the death of Evan Nathan Smith at the age of 21 in North Middlesex Hospital as a result of late recognition and treatment of a sickle-cell crisis. It was reported in the press that he was so desperate that he called 999 from his hospital bed to ask for the oxygen he knew he required.
The report itself is too lengthy and too important to summarise fully in this forum but two particular points in the APPG Chair’s Foreword are noteworthy.
Firstly, the report reveals “a pattern of many years of sub-standard care, stigmatisation and lack of prioritisation which have resulted in sickle cell patients losing trust in the healthcare system that is there to help them, feeling scared to access hospitals, expecting poor treatment from some of those who are supposed to care for them and fearing that it is only a matter of time until they encounter serious care failings”.
Secondly, there is the question of race. Sickle cell is a condition that predominantly affects black people. This is important because this APPG report is just the latest in a series of reports which raise concerns about inequalities in health care related to race.
We can only hope that the government react positively to the ongoing efforts to improve care for patients with sickle cell and thalassaemia, so that lessons can be learnt and improvements made. This APPG report makes many recommendations but a commitment to implement change is urgently required.