To Live With Dying

A life-limiting illness (also referred to as a terminal illness) is a disease or condition that can’t be cured and is likely to cause death within a limited period of time. It can be difficult for doctors to predict how long someone will live for as it can depend on their diagnosis and any treatments they may be receiving. People with a life-limiting illness may live for days, weeks, months or sometimes years.

Everyone will have their own way of coping with the news that they have a life-limiting illness and there is no right or wrong way to feel or react. You might feel numb at first and unable to take in the news, and as time passes you may experience a range of emotions that can feel overwhelming. You may also feel isolated and alone, even if you have family and friends around you.

Whatever you feel, you do not have to go through it alone.

Healthcare professionals involved in your care will talk to you, and anyone else you would like to be involved.
Professionals involved in your care may ask about how you wish to be supported, what is important to you, where you might want to be cared for in the future and even types of care or treatment you might want to avoid.
Whichever services are providing your care, the aim is to work together with you and the people important to you to provide the right care, at the right time, in the right place. It is helpful to discuss your preferences and priorities for your future care with your family and to share these with your healthcare team.

Watch this short video to learn more about what end of life care is.

This short video will tell you more about how your GP will continue to support you.

Watch this short video to find out more about what would happen if you were admitted to hospital.

Please note, these video were created for people in north east Essex and refer to ‘My Care Choices’, ‘St Helena SinglePoint 24/7 advice line’ and ‘ESNEFT (Colchester and Ipswich Hospitals). In Suffolk, we use ‘My Care Wishes’ instead of ‘My Care Choices’ – read more here. St Elizabeth Hospice and St Nicholas Hospice Care also offer 24/7 support via their advice lines, read more here. Whilst the video about being admitted to hospital refers specifically to ESNEFT, West Suffolk Hospital will be similar, please speak to the nurse in charge for details.

The NHS website has information about your feelings, how best to cope when getting your diagnosis, who to talk to about your questions and worries for the future, and ideas on how best to live well with a life-limiting (terminal) illness:

• NHS.uk – Coping with a terminal illness

Marie Curie provides information about what a life-limiting (terminal) illness is, along with a booklet about support for you and those close to you which you can order or download from their website:

• mariecurie.org.uk – What does terminal illness mean?
• mariecurie.org.uk – Living with a terminal illness

Marie Curie Nurse, Fiona Morton has published a blog post about what she has learned through working in a hospice about how people can learn to cope with their diagnosis:

• mariecurie.org.uk – Helping people come to terms with a terminal diagnosis

Cancer UK has information for those with a terminal cancer diagnosis which may help with thinking through how you might feel, talking about your diagnosis and staying hopeful:

• cancerresearchuk.org – Finding out you are dying

Compassion in Dying is a national charity that supports people at the end of life to have what they consider to be a good death, by providing information and support on their rights and choices.

You can view, download or order a copy of their booklet which provides information to help you make treatment and care decisions that are right for you. It will help you think through what you want to know, and offers ideas for questions to ask so you get the information you need. It also shares experiences and advice from other people who have lived with terminal (life-limiting) illness:

• compassionindying.org.uk – What now? Questions to ask after a terminal diagnosis

Telling the people you love that you have a limited time to live can be one of the hardest things you’ll ever have to do, particularly when you are trying to cope with the news yourself.

The Sue Ryder website provides advice on who to tell, when might be a good time to do it, what to say, how to say it, and also how people may react:

• sueryder.org -Telling people about your diagnosis

Marie Curie provides ideas on how to leave behind memories for your loved ones on their website:

• mariecurie.org.uk – Leaving behind memories

Read a blog from Marie Curie to explore seven simple ways you might like to make memories when facing the loss of someone you love:

• mariecurie.org.uk – Seven ways to preserve the memories of a loved one

Cancer UK have ideas on leaving memories for the people you love and dealing with any unfinished business on their website:

• cancerresearch.org – Leaving behind important memories

Family and friends can offer great emotional and wellbeing support but there are times when it is it easier to relate to someone you don’t know, such as another person in a similar position as you, your local hospice or a support organisation’s helpline.

Watch this short video to learn more about other support available to you, your relatives and carers

Please note, this video was created for people in north east Essex and refers to services available in north east Essex. For services available in your local area, please read more below.

St Nicholas Hospice Care can offer practical help, companionship, spiritual and pastoral care, as well as psychological services to support those faced with dying, caring and grief in West Suffolk and Thetford.

Learn more about and how to access these services:

• stnicholashospice.org.uk

St Helena Hospice provides specialist palliative and end of life care to local people facing incurable illness in north east Essex, supporting them, their families, friends and carers:

• www.sthelena.org.uk
• Watch this short video to learn more about how St Helena can support you  

At ESNEFT our End of Life volunteers are called ‘Butterfly Volunteers’ and the service was set up in partnership with the Anne Robson Trust at both Colchester and Ipswich Hospitals. Butterfly Volunteers provide company and support to hospital patients in the last days and hours of their lives. All Butterfly Volunteers are trained to undertake this role and have specific knowledge of the hospital they are volunteering in.

• Butterfly Volunteers

St Elizabeth Hospice provides emotional wellbeing and spiritual care to help patients and families in Ipswich, East Suffolk and Great Yarmouth and Waveney with the emotional aspects of facing life with an illness. The 565 Service provides emotional support for children, young people and families living with a family member with progressive illness:

• stelizabethhospice.org.uk – Emotional and spiritual support

Marie Curie’s support line provides both practical and clinical information along with emotional support if you’re living with or caring for someone who has a life-limiting (terminal) illness. Marie Curie also has an online community which provides a space for you to share thoughts, feelings and experiences with others in a similar position, as well as information on living with an terminal illness and how to keep comfortable, healthy and happy.

• mariecurie.org.uk – Marie Curie Support Line Tel: 0800 090 2309
• community.mariecurie.org.uk – Marie Curie Online Community
• Easy Read guidance on how to keep comfortable, healthy and happy

Macmillan’s support line offers confidential support to people living with cancer and their loved ones. If you are worried about money, work or treatment, or you just want to speak about whatever matters to you, they will listen, offer guidance and help you find the right information and support in your area, including support groups. Macmillan also have an online community where people living with or who are affected by cancer can chat about the issues affecting them:

• macmillan.org.uk – Macmillan Support Line Tel: 0808 808 0000

NHS 111 option 2 is a helpline for people of all ages who need urgent mental health support. The helpline is available all day, every day. If you are experiencing something that makes you feel unsafe, distressed or worried about your mental health, dial 111 and select the mental health option (option 2).

The Faith and Spirituality Network (Suffolk) is a small unincorporated charity set up to bridge the gap between those who describe themselves as religious and may belong to a faith community, and those who see themselves as having a spiritual dimension to their lives, whether or not they adhere to a particular religious tradition:

• fsns.org.uk

Age Well East provide a range of services to support people during emotionally challenging times – including for those facing the end of their life including end of life companionship; practical help, information and support; and bereavement support.

• agewelleast.org.uk – emotional support

GP Care Advisors. In north east Essex, your GP Care Advisor can offer help to access social care, welfare benefits and self-help support to help maintain independence at home.
To receive support from a GP care advisor, referrals can be made through your GP surgery, just ask to have an appointment with the GP care advisor and they will call you to discuss your needs or arrange an appointment if required.

• gpprimarychoice.co.uk – about GP care advisors

Social prescribers work within the north east Essex community and have connections with lots of organisations and services which they can signpost you to, to assist you with your physical, mental and emotional health and wellbeing.
The aim of social prescribing is to empower you to take control of your own health and wellbeing. They will discuss your needs with you or your loved one, and can then signpost you to support resources for issues such as benefit checks, counselling, shopping, medication collection and befriending services.
To access your local social prescribing team either contact your registered GP or member of your medical team and ask for a referral for social prescribing, or visit your registered practice website and click Wellbeing Centre for details of how to make a self-referral.

Ending Life’s Taboo offers rapid access to counselling to adults up to 45 years old who are life shortened (whatever the illness). The charity may also support family/carer members when appropriate. The service is open to those living in East Suffolk and North East Foundation Trust areas (CO and IP postal codes). Counselling can be accessed at Colchester Hospital, Cancer Wellbeing Centre and Ipswich Hospital, John Le Vay Centre. Counselling is also available as inpatients, home visits, by telephone and on-line; sessions and regularity of appointments are totally client led.

The counselling service is for people with a terminal illness as well as their family members who are experiencing anticipatory grief.

Referrals may be made by self-referral, healthcare professionals (primary, secondary and hospices), by charities unable to offer rapid access to counselling to those meeting our criteria (18 to 45 years old / have a life shortening illness/ receiving palliative care/life expectancy 2 years or less).

The service is generally on a one-to-one basis however Ending Life’s Taboo also offers peer support groups – face to face and online. Counselling is available at the Colchester Hospital and Ipswich Hospital. Sessions are available as an inpatient, outpatient, on-line, by telephone or at home. Family/carers can also be supported by ELT.

Phone: 07710628913
Email: endinglifestaboo@outlook.com

Visit the website

If you’re looking for a local care home for you or a loved one, below are some websites which can help you.

On the Care Quality Commission (CQC) website you can read their leaflet about what to expect from a good care home, as well as read CQC inspection reports and find and compare care homes.

Visit the CQC website for advice on what you can expect from a good care home. Plus read reports and find and compare care homes.

Compassionate Communities describes a range of tools and resources aimed at strengthening the level of support available to local people at the end of their life, and their families.

Compassionate Companions in Suffolk

This initiative aims to support people to live their lives fully before they die, providing companions for people and families affected by life-limiting illness, and starting conversations about end of life.

A number of volunteers are trained as Compassionate Companions to offer a listening ear, practical support and non-medical advice to anyone with a life-limiting illness in east Suffolk.

For more information visit the Compassionate Companions website:

• compassionate-communities.co.uk

St Nicholas Hospice Care – Building compassionate communities through Hospice Neighbours and Community Connectors

Hospice Neighbours is a community-based and volunteer-led project that provides practical support and valued companionship to people and their families with long-term and life-threatening illnesses. It helps between 120 and 150 people at any given time.

How can Hospice Neighbours help?

St Nicholas Hospice Care understands that when you are living with dying the world doesn’t stop so our Hospice Neighbours may be able to help by:

• Visiting for a cup of tea, offering companionship and a listening ear
• Providing practical support
• Helping to stay connected to your friends, family and the community
• Directing you to important support services which may help

For more information please call 01284 719638 (monitored answerphone) Monday-Friday or email Hospice.Neighbours@stnh.org.uk.

Community Connector Team work collaboratively within the West Suffolk and Thetford area.

Linking internally within the Hospice and externally with local partners in both the statutory and voluntary sectors they aim to co-create compassionate communities through an Asset Based Community Development. You can contact them directly by emailing community.connectors@stnh.org.uk or calling 01284 719638.

Compassionate Communities in north east Essex

St Helena Hospice is part of a network of local organisations and community champions in the Colchester and Tendring districts that has supported a range of activities and initiatives, with the aim of improving end of life care for everyone in North East Essex.

The North East Essex (NEE) Compassionate Community network is helping to:

• Start a conversation about end of life.
• Improve accessibility to end of life care.
• Develop end of life knowledge, skills, and support networks.

If you or a loved one is facing incurable illness or bereavement and you’re looking for other services and groups in your local community that can support you or them, The Essex Map is a useful resource to use.

Learn more about Compassionate Communities in north east Essex including events, workshops and training offered such as Compassionate Conversations awareness training, Compassionate Walks, Compassionate Workplace training, Demystifying end of life care events, Hospice meet and greets and more at www.sthelena.org.uk/compassionatecommunities