Background and development of the Proactive Identification Guidance (PIG) and use in National Policy - June 2022 GSF PIG Updated Keri Thomas
Development of this original PIG guidance paper - early use from 2004.
This guidance was originally commissioned from the GSF Team by the BMA in 2004 to support GPs with inclusion of appropriate patients on their QOF Palliative Care Registers i.e., those considered to be in the final 12 months of life. It is regularly revised following extensive consultation with specialist clinical and disease groups, palliative care specialists and GPs in the Royal College of General Practitioners.
Particular thanks for the 2022 edition goes to Dr Max Watson, Consultant in Palliative Care and ECHO Lead at Hospice UK for his brilliant updates based on recent academic evidence as well as years of clinical experience and particular expertise in advice regarding Covid (which we kept to a brief summary on the front page).
Since publication, this Guidance has been widely used by clinicians in many sectors in the UK and abroad. See use in UK and internationally on https://www.gsfinternational.org.uk/pig-tool, with some examples of evidence of its use across the world by others in https://www.gsfinternational.org.uk/_files/ugd/3f4876_5ed0115939a246d4b1f4bb42058b9165.pdf
This is one of several tools available from The GSF Centre for End of Life Care and further details on best use, IT support and further developments can be obtained from The GSF Centre. https://www.goldstandardsframework.org.uk or https://www.goldstandardsframework.org.uk/PIG
For the 2022 Revision and Further Reading:
For the revision 2021-2, we are grateful to the PIG revision 2021 Expert Advisory Group who contributed to this guidance, including responses from:
- British Geriatric Society, End of Life Care Special Interest Group – Helen Milbourn, Consultant Geriatrician - www.bgs.org.uk/topics/end-of-life-care
- British Heart Foundation, Natasha Feiner, Policy Officer (Health and Care) and Sonya Babu-Narayan, Associate Medical Director – www.bhf.org.uk/
- British Liver Trust, Dr Hazel Woodland, Hepatologist (specific interest in specialist care) – www.britishlivertrust/
- British Thoracic Society, Sally Welham, Deputy Chief Executive - www.brit-thoracic.org.uk
- Dementia UK, Sarah Russell, Professional and Practice Development Facilitator and Sharron Tolman, Consultant Admiral Nurse, also Co-chairs Hospice Admiral Nurses Community of Practice, Karen Harrison Denning, Head of Research and Publications - www.dementiauk.org
- Derby and Derbyshire CCG, Pauline Love, GP Advisor, EoL Clinical Lead
- Anthony Cunliffe, GP - www.macmillan.org.uk/
- Motor Neurone Disease Association, Jennifer Bedford, Head of Partnerships, Education and Information - www.mndassociation.org/support-and-information/information-resources/
- Parkinson’s Society;
- Professor Richard Walker, Consultant Physician, North Tyneside General Hospital and Excellence Network Clinical Lead for Medicine
- Fiona Lindop, Specialised Physiotherapist, Derby and the Excellence Network Clinical Lead for therapies
- Patsy Cotton, Advanced Nurse Practitioner, Movement Disorders/Parkinson’s, PUK Excellence Network
- The Brain Charity, Nanette Mellor, Chief Executive Officer - www.thebraincharity.org.uk
Other References include
- Covid https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(20)30193-0/fulltext.
- Frailty EFI https://www.england.nhs.uk/ourwork/clinical-policy/older-people/frailty/efi/
- Dementia - Dementia UK and see NICE Dementia Guidance 2018 https://www.nice.org.uk/guidance/ng97
- Stroke- https://www.bgs.org.uk/sites/default/files/content/resources/files/2018-06-05/national_guidelines_2016.pdf
Early identification is now mainstreamed in national UK policy
Early identification, and use of PIG, has also been integrated in national policy within the UK i.e., through NICE (National Institute for Health and Care Excellence) Guidance in End of life care recommendation in Statement 1, the NHS 2019 Long Term Plan, the development of Primary Care Registers and EPaCCS and other key local and national strategic plans.
NICE Quality Standards for End of Life care published 2011 revised and updated Sept 2021 https://www.nice.org.uk/guidance/qs13
Quality Statement 1 Identification
“Adults who are likely to be approaching the end of their life are identified using a systematic approach.” [2011, updated 2021]
Rationale - Using a systematic approach enables healthcare professionals to identify adults who are likely to be approaching the end of their life in a timely manner. Once recognised as approaching the end of their life, people can have their needs assessed and managed, and their carers and the people important to them can also be offered support. Timely recognition gives people the opportunity to make informed decisions about their care, make plans for their future and establish their preferences for how and where they would like to be cared for and die.
Quality measures - The following measures can be used to assess the quality of care or service provision specified in the statement. They are examples of how the statement can be measured and can be adapted and used flexibly. No routinely collected national data for these measures has been identified, therefore some examples of potential data sources have been suggested.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local protocols on identification of adults approaching the end of their life, including the use of tools such as the Gold Standards Framework Proactive Identification Guidance, the AMBER care bundle or the Supportive and Palliative Care Indicators Tool.
Outcome - The proportion of adults who have died with progressive life-limiting conditions who were on the palliative care register or had evidence of end of life care planning.
Numerator - the number in the denominator who were on the palliative care register or had evidence of end of life care planning.
Denominator - the number of adults who have died with progressive life-limiting conditions.
Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from patient records and palliative care registers. Quality Outcomes Framework indicator PC001 requires the contractor to establish and maintain a register of all patients in need of palliative care or support irrespective of age.
NICE Guidance in End of Life care Service Delivery 2019 https://www.nice.org.uk/guidance/ng142/resources/end-of-life-care-for-adults-service-delivery-pdf-66141776457925
1.1 Identifying adults who may be approaching the end of their life, their carers and other people important to them.
1.1.1 People managing and delivering services should develop systems to identify adults who are likely to be approaching the end of their life (for example, using tools such as the Gold Standards Framework, the Amber Care Bundle or the Supportive and Palliative Care Indicators Tool [SPICT]). This will enable health and social care practitioners to start discussions about advance care planning, provide the care needed, and to support people's preferences for where they would like to be cared for and die.
1.1.2 Health and social care practitioners should identify carers and other people important to adults who are likely to be approaching the end of their life.
In addition, early identification of patients in the last year of life is a key part of the NHS England Long Term Plan 2019
Sect 1.42. “With patients, families, local authorities and our voluntary sector partners at both a national and local level, including specialist hospices, the NHS will personalise care, to improve end of life care. By rolling out training to help staff identify and support relevant patients, we will introduce proactive and personalised care planning for everyone identified as being in their last year of life. A consequence of better quality care will be a reduction in avoidable emergency admissions and more people being able to die in a place they have chosen.”
How GSF can help you improve EOLC and implement the Long Term Plan
The LTP and QOF strongly mirrors what we at GSF have been teaching thousands of teams, with the 3 pillars of:-
• Identify - increasing early identification for more proactive care and better planning
• Assess - offering ACP discussions to all for more person-centred care in line with preferences
• Plan - for systematic consistent coordinated care, enabling more living well with fewer hospital admissions and dying at home
Therefore, GSF helps you attain these goals in practice on the ground. GSF accredited frontrunning teams in primary care, care homes, hospitals, etc., demonstrate what is possible to encourage others.