Palliative care data gaps

6 items 2 sources

Lack of a specified palliative and end-of-life care data set, hindering integrated care boards from understanding population needs.

Palliative care data gaps has been flagged across 2 independent accountability sources:

3 inquiry recs 3 PFD reports

This issue has been identified by multiple independent accountability bodies, suggesting it is a recurring systemic concern.

Recommendation: I recommend that infections eligible for compensation should be classified in the following manner: a) there should be defined categories for each type of eligible infection, and the stages through which it progresses, and for each category defined degrees of …

Gov response: The Government recognises the different levels of suffering from different infections and degrees of severity. Therefore, compensation will be available for all of the categories of loss recommended by the Inquiry - these are referred …

Recommendation: Mortality recording of perinatal deaths is not sufficiently systematic, with failures to record properly at individual unit level and to account routinely for neonatal deaths of transferred babies by place of birth. This is of added significance when maternity units …

Gov response: 103. We accept this recommendation. We will explore the feasibility of publishing data about the safety and quality of maternity services at individual Trust level. 104. As recommended by the Morecambe Bay Report, MBRRACE-UK has …

Recommendation: Scottish Government should identify a national agency to undertake routine national monitoring of deaths related to CDI.

Gov response: Section 2.1 notes the report's call for better national monitoring of HAI-related mortality, particularly C. diff deaths (recommendations 70 and 71). While the response details national and local surveillance data collection for HAI policy and …

Concerns: The absence of a properly managed and funded national register for Tracheo-Oesophageal Fistula (TOF) cases likely hinders improved outcomes and survival rates.

Concerns: A chronic national shortage of Paediatric Pathologists causes significant delays in reports, hindering timely genetic testing for families and preventing future deaths. Greater use of molecular autopsy is needed.

Concerns: The absence of national guidance for monitoring patients with pleural plaques leads to inconsistent follow-up, risking delayed diagnosis and treatment.