Shared decision-making in personalised care and support planning.

You are engaged with, listened to and heard as an equal partner in care decisions, this includes your family members too and is at the heart of all the interactions with health and care staff as you enter a palliative stage of your dementia. This includes referring to any advance care planning, advance directives and consulting with your registered lasting powers of attorneys for health and welfare.

For extra information, evidence and best practice please scroll down to the bottom of the page.

Regional offerings

Advance statement about your wishes

An advance statement is a written statement that sets down your preferences, wishes, beliefs and values regarding your future care.
The aim is to provide a guide to anyone who might have to make decisions in your best interest if you have lost the ability to make or communicate decisions.

What does it cover?

It can cover any aspect of your future health or social care. This could include:

how you want any religious or spiritual beliefs to be reflected in your care
where you would like to be cared for, for example at home or in a hospital, a nursing home, or a hospice
how you like to do things, for example if you prefer a shower instead of a bath, or like to sleep with the light on
practical issues, for example who will look after your dog if you become ill

You can make sure people know about your wishes by talking about them.
By writing your advance statement down, you can help to make things clear to your family, carers and anybody involved in your care.
You can write it with support from relatives, carers, or health and social care professionals.

Is an advance statement the same as an advance decision?

No. An advance decision (also known as a living will, or advance decision to refuse treatment) is a decision you can make now to refuse specific treatments in the future.
An advance decision is legally binding, as long as it meets certain criteria.
Read more about advance decisions to refuse treatment

Who makes an advance statement?

You write an advance statement yourself, as long as you have the mental capacity to make these statements.
Mental capacity is the ability to make decisions. Sometimes, people do not have mental capacity. This can be for a number of reasons, including illness.
Visit GOV.UK to find out about creating a lasting power of attorney, and the Mental Capacity Act.

Is an advance statement legally binding?

No, an advance statement is not legally binding, but anyone who's making decisions about your care must take it into account.

How does an advance statement help?

An advance statement lets everyone involved in your care know about your wishes, feelings and preferences if you're not able to tell them.

Does it need to be signed and witnessed?

You do not have to sign an advance statement, but your signature makes it clear that it is your wishes that have been written down.

Who should see it?

You have the final say in who sees it. Keep it somewhere safe, and tell people where it is, in case they need to find it in the future.
You can keep a copy in your medical notes.

Thinking about your wishes

Dying Matters has information on talking about dying. This includes ideas for starting the conversation, letting people know your wishes, and things to think about.

Find out more about planning ahead

Contact details for Advance Care Planning in each locality in Greater Manchester.
Weblink: https://dementia-united.org.uk/wp-content/uploads/sites/4/2021/01/Advance-Care-Planning-contact-details-in-each-GM-locality.pdf

Dementia Wellbeing Plan for Greater Manchester; Dementia United

The Greater Manchester dementia wellbeing plan promotes personalised planning conversations with people living with dementia and carers about their needs and wants. The plan ensures an improved standard of care planning for people living with dementia and also facilitates sharing across the system. It will be available as a standardised plan which can be accessed and shared digitally between practitioners; as well as being available from the website for people affected by dementia to be using when having person centred care plan reviews
Weblink: https://dementia-united.org.uk/dementia-wellbeing-plan/

End of Life Care in Greater Manchester for People With Dementia

A syllabus was agreed with input from health and care professionals and carers, using evidence based good practice literature. The syllabus is to ensure consistency across Greater Manchester but individual educators will deliver in a way suitable for their locality's way of working. This is supported by the Rules of Thumb guide and a leaflet to start the conversations about end of life 'Let's talk about death'.
Weblinks:
Rules of Thumb Guide: https://dementia-united.org.uk/wp-content/uploads/sites/4/2021/01/03-UCL-Rules-of-Thumb-Guide-v14.0_PRINT-version.pdf
Greater Manchester syllabus for training on end of life care of those with dementia: https://dementia-united.org.uk/wp-content/uploads/sites/4/2021/01/2021-01-25-GM-Syllabus-v1.0.pdf

Let's talk about death, shall we?

A new creative tool to support people with dementia: Polly Kaiser, consultant psychologist, has worked with award-winning illustrator, Tony Husband, and dementia trainer, Linda Green, to produce a cartoon booklet which helps people to prepare for the end of life.

Website: https://www.penninecare.nhs.uk/application/files/2415/8151/4384/Dementia_end_of_life_leaflet.pdf

Manchester Macmillan Supportive and Palliative Care Community Service

Palliative care is care given to people with chronic, often life-limiting illness. Our focus is on improving quality of life. We have a city wide service that provides seamless care. The service is delivered by MLCO staff in partnership with Macmillan Cancer Support.

Who is the service for?

Our service is usually for people whose illness means they are thought to be in the last year of life. However, we also provide care for people with longer life-limiting illness. We also provide support to families and carers. This is a really important part of supporting patients.

What does the service provide?

The service works from three hubs across Manchester so our teams work in their local neighbourhoods. The hubs are located in North, Central and South Manchester.

The teams provide support for adults facing life-limiting illness who are registered with a Manchester GP. The most common example is cancer, but our teams support patients with other conditions. We visit patients in their own home or care home. We also provide telephone support and advice when required.

The teams recognise that emotional, family, financial and spiritual concerns may be just as important to you as physical problems. We can:

Provide treatment and advice to help manage any symptoms
Offer practical advice and support to do the things that are important to you
Support families and carers
Signpost to other services including financial advice
Support you to make choices and plan for your future.

Website: https://www.manchesterlco.org/services/citywide-adult-community-services/manchester-macmillan-supportive-and-palliative-care-service/

Manchester Macmillan Supportive and Palliative Care Service Adult Referral Form: Macmillan Referral Form July final version

Understanding the Law Around Dementia: a Guide for Carers and Partners of People Living with Dementia

This presentation is covering:

Mental Capacity

Advance Decisions to Refuse Treatment (ADRT)

Life Sustaining Treatment

Making a Will

Disclaimer: This document was prepared by students, is based upon the law as it stands as of 25th October 2022 and may be subject to change; it is intended as a guide to practice and does not amount to legal advice. It is not a substitute for legal advice upon the facts of any specific case. No liability is accepted for any adverse consequences of reliance upon it.

ESRC Presentations

National offerings

Advance Care Planning

Advance care planning for people with dementia guidance from NHS England
Weblink: https://www.england.nhs.uk/wp-content/uploads/2018/04/my-future-wishes-advance-care-planning-for-people-with-dementia.pdf

Lasting Power of Attorney

A lasting power of attorney (LPA) is a legal document that lets you (the ‘donor’) appoint one or more people (known as ‘attorneys’) to help you make decisions or to make decisions on your behalf. It gives you more control over what happens to you if you have an accident or an illness and cannot make your own decision (you lack mental capacity).
Telephone: Office of Public Guardian Telephone: 0300 456 0300
Email: customerservices@publicguardian.gsi.gov.uk
Weblink: https://www.gov.uk/power-of-attorney

Mental Capacity Act

Social Care Institute for Excellence - introduction and training resources on the Mental Capacity Act. Along with links to two booklets explaining what mental capacity act means to the person themselves and family members as supplementary resources.
Weblinks:
https://www.scie.org.uk/mca/introduction
https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/365631/making_decisions-opg601.pdf

NHS Continuing Health Care

NHS continuing healthcare is for adults. Children and young people may receive a "continuing care package" if they have needs arising from disability, accident or illness that cannot be met by existing universal or specialist services alone.
The process involved in NHS continuing healthcare assessments can be complex. An organisation called Beacon gives free independent advice on NHS continuing healthcare.
Telephone: Beacon free helpline 0345 548 0300
Weblink: https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/nhs-continuing-healthcare/

NHS England Dementia

Dementia is a key priority for both NHS England and the Government. NHS England's work includes:

Developing an access and waiting time standard for dementia, so people with dementia have equal access to diagnosis as for other conditions; setting the national average for an initial assessment
Achieving and maintaining the dementia diagnosis rate. NHS England agreed a national ambition for diagnosis rates that two thirds of the estimated number of people with dementia in England should have a diagnosis with appropriate post-diagnostic support
Post diagnostic care and support; as there has been substantial progress on diagnosis, NHS England will focus on improving post-diagnostic support

Other organisations and sectors are crucial to helping NHS England deliver improvements to services for those with dementia and their carers. NHS England are working in collaboration with: Alzheimer’s Society, Public Health England, Department of Health, ADASS, Care UK, clinical commissioning groups, GP practices, Royal College of General Practitioners, Royal College of Psychiatrists, amongst other stakeholders to develop NHS England’s five year transformation plan for people with dementia.
NHS England have developed a Dementia Well Pathway which outlines standards across all aspects of the Pathway from prevention, diagnosing, supporting, living and dying well.
Weblinks:
The NHS England dementia-well-pathway can be accessed here: https://www.england.nhs.uk/mentalhealth/wp-content/uploads/sites/29/2016/03/dementia-well-pathway.pdf
You can access the NHS England dementia programme of work here: https://www.england.nhs.uk/mental-health/dementia/

NICE Dementia Guidance

This guideline brings together all the research and evidence which covers assessment, diagnosis, treatment and support. It is for people at risk of developing dementia, people who are referred for assessment, people living with dementia as well as being for family and friends and health and social care staff and commissioners. It aims to improve care by making recommendations on standards people should expect to receive from their assessment, care and support as well as on training.
Weblinks:
We have provided links to the NICE guideline for dementia and a further link is provided to guidance on how to delay or prevent the onset of dementia.
National Institute for Health and Clinical Excellence (NICE) NG16 (2015) Dementia, disability and frailty in later life – mid-life approaches to delay or prevent onset: https://www.nice.org.uk/guidance/ng16
National Institute for Health and Clinical Excellence (NICE) (2019) Dementia: assessment, management and support for people living with dementia and their carers: https://www.nice.org.uk/guidance/ng97

Personalised Care in the NHS

Personalised care is based on ‘what matters’ to people and their individual strengths and need.
Weblinks:
https://www.england.nhs.uk/personalisedcare/
https://www.england.nhs.uk/wp-content/uploads/2019/02/comprehensive-model-of-personalised-care.pdf

Marie Curie

Marie Curie provides an overnight service for all palliative patients with a life limiting illness including Dementia.

The criteria for referral is below

Patient is 18 years and over
GP agrees that the patient can be safely cared for at home

Overnight care comprises of a senior health care assistant caring for the patient in their own home overnight , this may also be a nursing /residential home (10pm till 7am) Please see links to the Marie Curie page and also publications to support patients ,carers and families.

Website: Nursing services (mariecurie.org.uk)

Website: Browse all Marie Curie publications

ReSPECT for healthcare professionals

ReSPECT stands for Recommended Summary Plan for Emergency Care and Treatment. The ReSPECT process creates a summary of personalised recommendations for a person’s clinical care in a future emergency in which they do not have capacity to make or express choices. Such emergencies may include death or cardiac arrest, but are not limited to those events. The process is intended to respect both patient preferences and clinical judgement. The agreed realistic clinical recommendations that are recorded include a recommendation on whether or not CPR should be attempted if the person’s heart and breathing stop.

Website: https://www.resus.org.uk/respect/respect-healthcare-professionals

Universal Principles for Advance Care Planning (ACP)

The Universal Principles for Advance Care Planning has been jointly published by a coalition of the partners listed above, in response to the Care Quality Commission report ‘Protect, Connect, Respect – decisions about living and dying well’ (2021).

universal-principles-for-advance-care-planning

Evidence

NHS England, Personalised Care Group 2019: Systematic evidence reviews shows that shared decision making supports people to understand benefits and harms. Noted that personalisation tended to reduce uptake of high risk, high cost interventions by up to 20%, with evidence that people’s overall well-being, satisfaction and experience improves through good personalised care and support planning

NICE, Shared Decision Making Collaborative, A consensus statement: "Shared Decision Making is ‘a process in which clinicians and patients work together to select tests, treatments, management or support packages, based on clinical evidence and the patient’s informed preferences. It involves the provision of evidence-based information about options, outcomes and uncertainties, together with decision support counselling and a system for recording and implementing patients’ informed preferences. 'Shared decision making between healthcare professionals and patients improves decision quality and patient satisfaction and, in some cases, results in more cost-effective care. Embedding shared decision making in practice is a key factor in realising the new models of care in the Five Year Forward View."