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Surveys

The APM is dedicated to perfecting the services offered by palliative care providers across the UK and Ireland. That’s why we conduct extensive research and services to ensure the best support is being given.

FAMCARE  Service Evaluation

The duration of our service evaluation runs from 1st August to 30th September, covering deaths during the period of 1st June to 30th August.

The study consists of consecutive bereaved ‘main’ carers of patients referred to the service for end-of-life care.

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

The FAMCARE 2 tool will be completed on a single occasion by the primary carer 4 to 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. Both the tool itself and the cover letter should be sent independently of other correspondence from the service, such as routine bereavement correspondence.

Professor Aoun has permitted the FAMCARE 2 tool to be used for the survey and has also confirmed that the tool can be used for bereaved relatives.

The APM Secretariat will analyse all data, and feedback will be given to the individual services. Services will receive their data and also comparable anonymous data from other services.

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

Register for FAMCARE!

If you would like to register for the next FAMCARE audit, please email the Secretariat.
The service evaluation is being overseen by Dr. Despoina-Elvira Karakitsiou (Lead). All service evaluation and registrations queries should be directed to Compleat Secretariat.

Find out more about FAMCARE with the FAMCARE Overview

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FAMCARE and GDPR

The EU General Data Protection Regulations (GDPR) came into force on 25th May 2018 and are applicable as law in the UK. It replaced the Directive that is the basis for the U.K. Data Protection Act (DPA) 1998. The basic premise of the DPA remains, with the GDPR serving as an enhancement.

The APM processes a lot of sensitive information about both patients and staff. We are responsible for ensuring that this information is protected at all times and shared appropriately. This includes the processing of Data for the FAMCARE service evaluation in which organisations contact Next of Kin (NOK) 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 is dedicated to ensuring your service is covered concerning GDPR and will issue a GDPR privacy notice and all other registration documents.

It is a legal requirement to inform NOK/Carers at the time of collection 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, giving the opportunity to opt-out if they wish.

You may also wish to review your organisation’s 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 data subject’s knowledge.

Find out more about our GDPR Legitimate Interest Test

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