Sue Ryder

http://www.sueryder.org/

 

How we help

We provide incredible hospice and neurological care for people facing a frightening, life-changing diagnosis. It’s not just expert medical care we provide. It’s the emotional support and practical things we take care of too. We do whatever we can to be a safety net for our patients and their loved ones.

Not only do we treat more conditions than any other UK charity in our hospices, neurological care centres and out in the community; we also campaign to improve the lives of people living with them. We see the person, not the condition, taking time to understand the small things that help that person live the fullest life they can. 

 
 

Place of Care

END OF LIFE: PLACE OF CARE

End of Life Care

What end of life care involves

 
End of life care is support for people who are in the last months or years of their life.

End of life care should help you to live as well as possible until you die, and to die with dignity. The people providing your care should ask you about your wishes and preferences, and take these into account as they work with you to plan your care. They should also support your family, carers or other people who are important to you.

You have the right to express your wishes about where you would like to receive care and where you want to die. You can receive end of life care at home or in care homeshospices or hospitals, depending on your needs and preference. 

People who are approaching the end of life are entitled to high-quality care, wherever they’re being cared for. Find out what to expect from end of life care.

Who provides end of life care?

Different health and social care professionals may be involved in your end of life care, depending on your needs. For example, hospital doctors and nurses, your GP, community nurses, hospice staff and counsellors may all be involved, as well as social care staff, chaplains (of all faiths or none), physiotherapists, occupational therapists or complementary therapists.

 

If you are being cared for at home or in a care home, your GP has overall responsibility for your care. Community nurses usually visit you at home, and family and friends may be closely involved in caring for you too. 

What is palliative care?

End of life care includes palliative care. If you have an illness that can’t be cured, palliative care makes you as comfortable as possible, by managing your pain and other distressing symptoms. It also involves psychological, social and spiritual support for you and your family or carers. This is called a holistic approach, because it deals with you as a "whole" person.

 

Palliative care isn’t just for the end of life. You may receive palliative care earlier in your illness while you are still receiving other therapies to treat your condition. 

Who provides palliative care?

Many healthcare professionals provide palliative care as part of their jobs. An example is the care you get from your GP or community nurses.

 

Some people need additional specialist palliative care. This may be provided by consultants trained in palliative medicine, specialist palliative care nurses or specialist occupational therapists or physiotherapists.

 

Palliative care teams are made up of different healthcare professionals and can co-ordinate the care of people with an incurable illness. As specialists, they also advise other professionals on palliative care.

 

Palliative care services may be provided by the NHS, your local council or a charity. 

When does end of life care begin?

End of life care should begin when you need it and may last a few days, or for months or years.

 

People in lots of different situations can benefit from end of life care. Some of them may be expected to die within the next few hours or days. Others receive end of life care over many months.

 

People are considered to be approaching the end of life when they are likely to die within the next 12 months, although this isn’t always possible to predict. This includes people whose death is imminent, as well as people who:

  • have an advanced incurable illness such as cancer, dementia or motor neurone disease
  • are generally frail and have co-existing conditions that mean they are expected to die within 12 months
  • have existing conditions if they are at risk of dying from a sudden crisis in their condition
  • have a life-threatening acute condition caused by a sudden catastrophic event, such as an accident or stroke

The National Institute for Health and Care Excellence (NICE) produced new guidance in December 2015 on the care of adults in the last two to three days of life. This guidance covers how to manage common symptoms, and dignity and respect for the dying person and their relatives and carers.

 

How do I find out about end of life care services in my area?

If you are approaching the end of life, or caring for someone who is, and you want to find out about the care and support available, your first step is to speak to your GP or to call the number your healthcare professionals have given you.

Part of their job is to help you understand which services are available locally. You can ask about all sorts of help – for instance, there may be particular night-time services they can tell you about.

You can also use the "Services near you" search on this page.

Find Me Help has a directory of services for people in the last years of life, their families, friends and carers, based on where you live.

You can search for a wide range of practical, financial and caring services – for example, getting help around the house, taking control of your finances or speaking to a counsellor.

Carers can search for different kinds of support, including medical help, respite cover, carers’ support groups and bereavement services. 

Planning ahead

In this end of life care guide, "end of life care" also covers legal issues to help you plan ahead for your future care. These include creating a lasting power of attorney, so that the person or people of your choice can make decisions about your care if you are no longer able to do so yourself.

 Source: http://www.nhs.uk/Planners/end-of-life-care/Pages/what-it-involves-and-when-it-starts.aspx

 

 

What to do when someone dies

Useful Links

Links to the main organisations working in end of life care, including palliative care associations, hospices, disease specific sites, social care organisations and government organisations and agencies.

We will be adding to this list and if you have any suggestions for links you feel we should include, please email neolcin@phe.gov.uk

The useful links are organised into the following categories:

Carers

Government and regulatory

Health-related sites

Hospices

International Palliative Care Associations

Older people

UK and Ireland palliative care associations

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Carers

Carers Federation

Carers Trust

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Government and regulatory

Care Quality Commission

Centre for Public Scrutiny

Centre for Workforce Intelligence

Care Inspectorate

Healthcare Improvement Scotland

Social Care Institute for Excellence

NHS Employers End of Life Care

NICE (National Institute for Health and Clinical Excellence)

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Health-related

Association of Public Health Observatories

Alzheimer's Disease Society

British Heart Foundation

Cystic Fibrosis Trust

Macmillan Cancer Support

Marie Curie Cancer Care

Motor Neurone Disease Association 

Multiple Sclerosis Society 

National Aids Trust 

National Cancer Intelligence Network

NHS Improving Quality

Parkinson's UK

Scottish Motor Neurone Disease Association 

Terrence Higgins Trust

UK Association of Cancer Registries

UK Renal Registry

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Hospices

Hospice UK

Irish Hospice Foundation

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International palliative care associations

African Palliative Care Association

The Canadian Hospice Palliative Care Association

European Association for Palliative Care 

Hospice Friendly Hospitals

Hospice Palliative Care Association of South Africa

International Association for Hospice and Palliative Care 

National Hospice & Palliative Care Organisation USA

Palliative Care Australia

Palliative Info

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Older people

Age UK (formerly Age Concern and Help the Aged)

Older people profiles for England

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UK and Ireland palliative care associations

Association of Palliative Medicine of Great Britain and Ireland

National Council for Palliative Care 

Scottish Partnership for Palliative Care 

Sue Ryder Care

The National Care Forum

Together for short lives

Useful information

Advice and information

"How people die remains in the memory of those who live on."

– Dame Cicely Saunders (1918–2005)

http://www.endoflifecare-intelligence.org.uk/advice_and_information

 

If you are a patient, carer, or concerned about end of life care, there are a number of organisations that provide expert advice and information. You can find a useful list of these below within Advice for Individuals and Carers. 

There are also a number of organisations that provide information tailored to specific illnesses or specific support needs. These include:

Marie Curie Cancer Care

The National Council for Palliative Care  

Macmillan Cancer Support

Motor Neurone Disease Association 

St Christopher's Hospice

Care Quality Commission

Hospice UK

The Department for Work and Pensions website also has useful information about benefits.

This is only a sample of the websites that you might find useful. 

You may also like to contact your local Clinical Commissioning Group, GP or key worker in hospital to find information about services and support in your local area.

The National End of Life Care Intelligence Network was commissioned to support the implementation of the National End of Life Care Strategy (2008), which is aimed at improving end of life care for adults in England. The Network therefore does not currently have a remit to provide information on end of life care for children. However, this may change in the future. Together for short lives provides support for families and carers of children at the end of life.

For more information about the National End of Life Care Intelligence Network and the role of data and statistics in improving end of life care services in England, see About us.

Advice for Individuals and Carers

Age UK - as well as providing information and advice, Age UK also offers a range of practical aids to assist people at home. These range from stairlifts, through personal alarms to fitness DVDs.

British Association of Counsellors and Psychotherapists (BACP) - gives you access to a list of counsellors and psychotherapists who have met the standards for registration. All registrants are trained and are required to be in supervision and to undertake appropriate continued professional development. 

Carers Direct - provides information, advice and support for carers. Telephone 0300 123 1053. Open Monday - Friday from 9am to 8pm. Open Saturday and Sunday from 11am to 4pm. 

Carers Trust - works to improve support, services and recognition for anyone living with the challenges of caring. 

Carers UK –improves carers’ lives by providing information and advice about caring, campaigning for changes that make a real difference for carers and influencing policy through research based on carers' real life experiences. Advice line: 0808 808 7777.

Compassionate Communities - aims to help people develop the skills to address issues raised by end of life and other losses and be a helpful, empathic ear. 

Cruse Bereavement Care - UK's largest bereavement charity promotes the well-being of bereaved people and enables anyone bereaved by death to understand their grief and cope with their loss. As well providing free care to all bereaved people, the charity also offers information, support and training services to those who are looking after them. Helpline 0844 477 9400. 

Dying Matters - set up by the National Council for Palliative Care (NCPC), the coalition aims to promote awareness of dying, death and bereavement. Their website has a comprehensive support section. 

HealthTalkOnline - includes information on palliative care and is aimed at patients, carers and professionals. The site features interviews with patients and carers from a broad range backgrounds about their experiences of illness, treatment and being a carer. 

Macmillan Cancer Support - provides practical, medical and financial support to people whose lives are affected by cancer. National Cancer Line - 0808 808 00 00 (calls are free). Open Monday to Friday from 9am to 8pm. 

Marie Curie Cancer Care - provides free nursing care to cancer patients and those with other terminal illnesses in their own homes. 

NHS Choices - it is the country's biggest health website and gives all the information you need to make choices about your health. Information on NHS Choices is available in multiple languages. The translation tool can be found at the top of the webpage. 

NHS 111 – is a new service being introduced to make it easier to access local NHS healthcare services in England. Call 111 when you need medical help fast, but when it is not a 999 emergency. Available 24 hours a day, 365 days a year. Calls are free from a landline and mobile phone.

Rosie Crane Trust - the trust offers a confidential 24hr Listening Ear Helpline with trained, volunteer bereaved parents for other bereaved parents who need someone to talk to. It also offers monthly drop-in sessions, befriending service and subsidised counselling.

Samaritans - provides confidential non-judgemental emotional support, 24 hours a day for people who are experiencing feelings of distress or despair. Telephone 08457 90 90 90. Open 24 hours a day, 365 days a year.

The Money Advice Service - offers free and impatial money advice, set up by Government. Support available via their website or by calling 0800 138 7777. Calls are free and they are available Monday to Saturday 8am to 8pm. Sunday and Bank Holidays they are closed.

The Patient Advice and Liaison Service (PALS) - offers confidential advice, support and information on health-related matters. They provide a point of contact for patients, their families and their carers. 

Source: http://www.endoflifecare-intelligence.org.uk/advice_and_information