FAMCARE Service Evaluation

FAMCARE

Service Evaluation of Bereaved Relatives' Satisfaction with End-of-Life Care

FAMCARE Service Evaluation

Duration of service evaluation
1 August to 30 September (covers deaths during the period 1 June to 30 August)

Subjects
Consecutive bereaved “main” carers of patients referred to the service for end-of-life care.

Services
a) Hospital (Hospital Support Teams) – HS
b) Specialist Palliative Care (Inpatient Unit) – IU
c) Community (Home Care Teams) – HC

Method
The FAMCARE 2 tool will be completed on a single occasion by the main carer 4-8 weeks after the patient’s death. The FAMCARE 2 tool will be sent with a generic covering letter and a return Freepost envelope addressed to the APM. The FAMCARE 2 tool/generic covering letter should be sent independent of other correspondence from the service (eg routine bereavement correspondence). [Professor Aoun has given permission for us to use the FAMCARE 2 tool for the purposes of the survey; he has also confirmed that the tool can be used in bereaved relatives (although the working has been amended from present tense to past tense).]

Data analysis
The data will be analysed by the APM Secretariat, and feedback given to the individual services. Services will receive their own data, and also comparable (anonymous) data from other services.

Audit Cost
The Project Lead is responsible for the cost of the audit which is £125 per service per year, to be paid at registration.

Registration for FAMCARE 2023 is now open! To register, please email Compleat Secretariat.

The service evaluation is being overseen by Dr Despoina-Elvira Karakitsiou (Lead); all queries about the service evaluation and registrations should be directed to Compleat Secretariat

FAMCARE and GDPR

The EU General Data Protection Regulations (GDPR) came into force on 25 May 2018 and will be directly applicable as law in the UK. It will replace the Directive that is the basis for the UK Data Protection Act (DPA) 1998. The basic premise of the DPA will remain; the GDPR will be an enhancement of the DPA.

The APM processes a lot of sensitive information about both patients and staff. We have a responsibility to ensure that this information is protected at all times and shared in an appropriate manner. This includes the processing of Data for the FAMCARE service evaluation in which organisations contact Next of Kin or Carers.

The legal basis for organisations to contact NOK/carers under GDPR is “direct care”, dealt with under: Article 6(1)(e) of GDPR; ‘…for the performance of a task carried out in the public interest or in the exercise of official authority..’, using the Article 9 condition for direct care or administrative purpose 9(2)(h)”…medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems…’

The APM ensure that your service is covered in regards to GDPR, and we will issue a GDPR privacy notice along with all other registration documents.

It is a legal requirement to inform NOK/carers at the time of collection they are told what their information will be used for. The best way to do this under the new GDPR law is to display or provide “fair processing notices” that gives the opportunity to opt out if they wish. You may wish to review your organisations’ fair processing notices to ensure compliance with the new legislation for this and other national audits. They could also be advised in a privacy statement/notice/policy as an alternative. It is a fundamental principle of data protection that personal information collected for one purpose is not used for another without the knowledge of the data subject.

Further information can be found online regards to GDPR during COVID-19 by clicking here.

Please click here for our GDPR Legitimate Interest Test.

FAMCARE Overview