NICE -The End of Life Care (Service Delivery) Guideline for adults in the last year of life. NICE’s aim is to improve outcomes for people who use the NHS and other public health and social care services. We do this by: producing evidence-based guidance and advice for health, public health and social care practitioners developing quality standards and performance metrics for those providing and commissioning health, public health and social care services and providing a range of information services for commissioners, practitioners and managers across health and social care.

Equalities The guideline has looked at inequalities relating to access to services for people with dementia, cognitive impairment or learning disabilities, and people who are homeless. It has taken into account the specific needs of young carers and frail, elderly carers looking after people at the end of life Approximately 7% of young carers are caring in EOL circumstances Many young carers will be deeply affected by EOL circumstances but there is a lack of support for them Focus has been around the bereavement stage rather than support from the diagnosis stage; early identification is key and a ‘whole family’ approach is important Young carers want an honest, open dialogue that is aware of cultural sensitivities.

Key Facts & the changing demographic 0.8% of the population are classified as being in EOL circumstances Approximately 470,000 people die in England every year and projections suggest this number will rise by 17% between 2012 and 2030. Approximately 171,000 people receive specialist palliative care. This is mostly delivered in the last 3–6 months of life, although, specialist palliative care sometimes starts earlier in the course of a progressive life- limiting disease For people aged 50 and over, long-term diseases and conditions are the leading causes of death. Currently, 15 million people in England live with one or more long-term condition. There is a significant number of older people with dementia. The model needs to change to accommodate this

Who the guideline is for NHS England has asked NICE to develop a service delivery guideline on the delivery of services for the dying adult in the last year of life. This guideline will also be used to update the NICE quality standard for end of life care. Who the guideline is for Generalist healthcare professionals in primary and secondary care. Specialist healthcare professionals in primary and secondary care. Commissioners of end of life care services. Providers of end of life care services. Other practitioners delivering end of life care services. People using end of life services, their families and carers, and the public. It may also be relevant for: Organisations in the charitable sector delivering end of life care services. Providers of social care as part of end of life care services.

What the guideline is about Groups that are covered Adults (aged 18 or over) with progressive life-limiting conditions thought to be entering the last year of life. Health and social care professionals delivering end of life care services to NHS patients. Carers and/or those important to people accessing end of life care services. Groups that will not be covered People not expected to die within the next 12 months. When agencies work together to support my family it makes me feel like /i can get help when I need it

We have looked at evidence on the areas listed below when developing the guideline, but it has not been possible to make recommendations on all the area. Service models that provide support for carers or those important to people accessing end of life services Interface with carers in advanced care planning

We have taken economic aspects into account when making recommendations. We have developed an economic plan that states for each review question (or key area in the scope) whether economic considerations are relevant, and if so whether this is an area that should be prioritised for economic modelling and analysis. What are the best service models to provide support for the carers or those important to the people accessing end of life services? I swear as a young carer I spend half my time having to fight for/complain about things services should do right the first time

Main Outcomes that have been considered when searching for and assessing the evidence are: Patient-reported outcomes. Views and satisfaction of those receiving end of life care; and of those important to them. Health-related quality of life. Preferred and actual place of care. Preferred and actual place of death. Staff satisfaction among providers of end of life care services. Resource use and costs, including length of hospital stay, number of hospital visits and use of community-based services Young Carers Rights! One area we have looked at in detail has been advanced care planning.

25th January 2018 (Publish Draft for consultation) Time Line Thursday 1st September 2016 Wednesday 12th October 2016 Wednesday 23rd November 2016 Tuesday 10th January 2017 Thursday 23rd February 2017 Friday 31st March 2017 Monday 8th May 2017 Thursday 28th September 2017 25th January 2018 (Publish Draft for consultation) 18th July 2018 (Publication of Final Guidelines)

Debbie Hustings Ron Critcher NHS Partnership Manager for Carers Guildford & Waverley, Surrey Downs & East Surrey CCGs Email: debbie.hustings@nhs.net Ron Critcher Policy and Development Officer (Carers) Surrey County Council Email: ron.critcher@surreycc.gov.uk This Photo by Unknown Author is licensed under CC BY-SA