Dying Matters Awareness Week 2024
This year, Dying Matters awareness week (6th-12th May), run by Hospice UK, encourages us to have honest conversations about death and dying by focusing on the theme ‘The Way We Talk About Dying Matters.’
Honest, timely conversations about death and dying between families, carers and health professionals, ensure you or loved ones receive the right end of life care and support.
What is Palliative and End of Life Care?
End of life care is a form of palliative care you receive when you’re close to the end of life. It should support you to live as well as possible until you die, and to die with dignity.
Services should respect your wishes, take these into account as they work with you to plan your care, and support your family, carers or other people who are important to you.
If your illness cannot be cured, palliative care makes you as comfortable as possible by managing your pain and other distressing symptoms. This is called a holistic approach, because it deals with you as a “whole” person, not just your illness or symptoms.
How can you plan for care at the end of life?
Planning ahead can help you receive the care you want by ensuring your family and health professionals know your wishes.
If you have a terminal illness or you’re approaching the end of your life, it can be a good idea to record your views, preferences, and priorities about your future care.
For a conversation around end-of-life care preferences for you or a loved one, talk to your GP or other health professionals involved in your care.
NHS England has further information for people planning their end-of-life care.
Healthwatch England has advice when planning for care at the end of life, including making an advance care plan.
How are End of Life Care services provided in East Sussex?
You can receive end of life care at home, in a care or nursing home, in hospital or in a hospice.
Hospital based teams provide support to people with palliative care needs within acute hospitals and in the outpatient clinic setting.
Hospice care provides residential care for suitable patients, as well as outreach or Hospice at Home services for those who prefer to remain at home or residential care setting.
A community-based palliative and end of life care (PEoLC) team supports patients who have palliative and end of life care needs that remain at home or in the community.
Local social services may offer support to people who are living at home, including arranging help with personal care (e.g. getting washed and dressed), the delivery of meals and other practical issues like dealing with benefits.
How can you access Hospice care?
Hospice care can be provided at any stage of a person’s condition once treatment is no longer an option, not just at the end of their lives. It can include symptom management, and social, practical, emotional and spiritual support.
Your GP, hospital doctor or other Healthcare Professional can refer you for hospice care. A district nurse may also refer you to a community palliative care nurse or Hospice at Home service.
There are four hospices that provide services to East Sussex residents, and each has a catchment area, so which one you can access depends on where you live (see below).
- St Peter & St James Hospice catchment area: Lewes, Uckfield & areas of Wealden
- St Wilfrid’s Hospice catchment area: Eastbourne, Seaford & areas of Wealden
- St Michael’s Hospice catchment area: Hastings & Rother
- Martlets Hospice catchment area: Brighton & Hove and The Havens
How can I access Bereavement Support?
There are lots of ways to get support for bereavement, including:
- Speaking to your GP to discuss what kind of treatment or support might help you
- Accessing bereavement support services provided by local hospices, which often offer support to the wider community, as well as relatives of those who have accessed their services.
- Seeing if there’s support available through your employer or place of study, if you’re working or studying.
- Visiting your local community centre or library. They may have information about local bereavement support.
- Seeking support through your place of worship, if you have one.
- Finding support online. This could be online support groups or bereavement communities. Or through connecting with people with similar experiences on social media. The Good Grief Trust is run by the bereaved for the bereaved. to help all those affected by grief in the UK and provides a virtual hand of friendship and ongoing support to help people move forward with their lives.
The National Mental Health charity, Mind, has self-care guidance to help with grief and a list of bereavement support organisations. They also have an information and signposting service you can contact via:
Telephone: 0300 123 3393 (Monday – Friday, 9am-6pm)
Email: info@mind.org.uk
The Hub of hope provides a database of mental health services on their website and Cruse Bereavement Care can provide support and information to anyone experiencing grief.
If you are registered with an East Sussex GP and are experiencing stress, anxiety or low mood, you can self-refer to Health in Mind, an NHS talking therapies service, which can provide options for therapy or counselling, that is free and available to adults over the age of 18 in East Sussex.
You can also use the East Sussex Community Information Service database to find local bereavement support services.
Do you need to speak to someone now?
For urgent support, the following helplines are available 24 hours a day:
- Samaritans (for anyone at anytime for any reason) Tel: 116 123
- Childline (support for 18yrs and under and their relatives) Tel: 0800 1111
- The Silver Line (support for the over 50’s) Tel: 0800 470 8090
- Sussex Mental Health Crisis Line Tel: 0800 0309 500 or text the word SUSSEX to 85258 for a confidential text based conversation with a trained volunteer. Alternatively call 111 and select the Mental Health option.
If your situation is a health emergency, and you do not think you can keep yourself or someone else safe, please call 999 or go to A&E.
