Advice and information

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

– Dame Cicely Saunders (1918–2005)

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:

Care Quality Commission

Hospice UK

Macmillan Cancer Support

Marie Curie

Motor Neurone Disease Association 

Parkinson's UK

St Christopher's Hospice

The National Council for Palliative Care  

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 - will provide help if you or someone you’re close to has a terminal illness..  For more information visit Marie Curie  or call their free confidential Support Line on 0800 090 2309.  

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. 

 

 

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