‘What matters to me’ A human rights approach to end of life care Jude Scott, Practice Educator Facilitator Narrative: Welcome participants and thanks for attending Introduction to facilitator House-keeping: Fire Alarms & Procedures Toilets Breaks & Refreshments Lunch Smoke free environment Mobile phones to silent or vibrate You should have all received an email confirming your training place today, containing the agenda and a link to the Practitioners Guide and the pre-course questionnaire, which I hope you have completed. The pre and post course questionnaire is really important as it is one of the metrics for our evaluation and which will help us to demonstrate impact.

Background to training programme Sue Ryder worked with the British Institute of Human Rights to develop ‘End of Life Care and Human Rights: A practitioner’s guide’. Sue Ryder secured a grant from the Burdett Trust for Nursing to deliver a 3-year training programme to embed this approach into practice. Facilitator Narrative: Sue Ryder was invited by the British Institute of Human Rights to develop a Practitioners Guide for EoLC. Also worked with RCN, RCM and NHS Employers In February 2016, Sue Ryder and the British Institute of Human Rights delivered 2 training workshops to test out the Practitioners Guide, which was published in July 2016. Those workshops form the foundation for this course. We have developed 3 types of workshops: Half-day for non-registered workforce 1-day for Registered workforce 2-day for Train the Trainers Workshops are free and any organisation can host a local training event on the basis of a free venue and a minimum of 12 participants. Last updated 21st June 2017

Intended learning outcomes Initiate conversations in the workplace referring to human rights Act as an advocate for human rights in the delivery of high quality EoLC Recognise the benefits of using a human rights framework to help ethical decision making Use knowledge gained to deliver personalised care Facilitator Narrative: By the end of today we hope you will be able to: This is about taking human rights out of the law books and putting it into the heart of practice.

What does human rights have to offer EoLC? Provides a vital safety net by outlining a set of minimum standards, backed up by law. Places a duty on public authorities to protect and respect human rights in everything they do. Provides a foundation for all other health and social care legislation and policy. Facilitator Narrative: So whilst EoLC Strategy and Policy sets the direction and the expectations for good EoLC, The Human Rights Act sets the standards in law and places a duty on public authorities to uphold human rights in everything that they do. It forms the basis for all other health and social care legislation in Scotland

© The British Institute of Human Rights 2017 6 rights most relevant to EoLC Facilitator Narrative: So we’ve established that human rights are based on shared values under the acronym of FREDA and that they are universal to everyone, irrespective of status. More importantly they are about the relationship between those who are responsible for providing care on behalf of the state and individual citizen’s who need care services (so that’s patients and their families) There are 16 rights protected by the Human Rights Act. These are the 6 rights that are most relevant to EoLC. The rights are referred to in law as Articles. But before we look at each of these in more detail, let’s look at the history of human rights. © The British Institute of Human Rights 2017

How these fit together Adults with Incapacity (Scotland) Act 2000 Services Codes of Practice Adults with Incapacity (Scotland) Act 2000 Human Rights Act Facilitator Narrative: I hope this slide helps demonstrate the fit between the Human Rights Act, other health and social care laws in Scotland, professional codes of practice and the services you help deliver. It’s important to understand that the Government sets laws, but the Courts interpret them. So you can use the Court to challenge whether the laws need amending. If the Judge feels they cannot interpret the law they can make a declaration of incompatibility and Parliament decides how the law needs to change. V – 15 June 2017

Facilitator Narrative: This flowchart was developed by BIHR and is on your tables as a large laminate, to make it easier to read. It’s also in the hard copy of your Practitioners Guide – page 35. You can use this framework to help you to raise a human rights issue that you have identified and it outlines a clear escalation process. Frontline staff are very used to reacting to risk and using the power of human rights language enables you to challenge entrenched practice – it’s quietly empowering to staff. Rather than using the aggressive language of breach or violation, you can talk about the risk to human rights or about the risk of not respecting human rights – sounds less confrontational. Scottish Health Council is the equivalent to Healthwatch in England – Consumer Champion REMEMBER: concerns of serious harm or threats to life should be reported to the police and follow safeguarding protocols. V – 15 June 2017

Facilitator Narrative: This flowchart was developed by BIHR and is on your tables as a large laminate, to make it easier to read. It’s also in the hard copy of your Practitioners Guide – page 35. You can use this framework to help you to raise a human rights issue that you have identified and it outlines a clear escalation process. Frontline staff are very used to reacting to risk and using the power of human rights language enables you to challenge entrenched practice – it’s quietly empowering to staff. Rather than using the aggressive language of breach or violation, you can talk about the risk to human rights or about the risk of not respecting human rights – sounds less confrontational. Scottish Health Council is the equivalent to Healthwatch in England – Consumer Champion REMEMBER: concerns of serious harm or threats to life should be reported to the police and follow safeguarding protocols. V – 15 June 2017

Geographical Reach Facilitator Narrative: This diagram shows where we delivered training in the first 6 months up to the end of September 2017 V – 19.06.2018

Thank You!