End of Life

Emotional Support

If you or someone you care for has a life limiting illness you may find it useful to talk to someone who is not connected to you or your family. There are different ways in which you can do this from talking to a counsellor or therapist to meeting with a support group. 

End of Life care and information available to you

  • Advanced Care Plan (ACP)
    Advance care planning is a process of discussion between you and those who provide care for you, for example your nurses, doctors, care home manager or family members. During this discussion you may choose to express some views, preferences and wishes about your future care. Advance Care Planning (ACP) is a key part of quality provision of end of life care.
  • Advanced Decision to Refuse Treatment (ADRT)
    You may want to take the opportunity to think about what living with a serious illness might mean to you, your partner or your relatives, particularly if you become unable to make decisions for yourself. You may wish to record what your preferences and wishes for future care and treatment might be or you may simply choose to do nothing at all. One way of making people aware of your wishes is by a process of advance care planning. The ADRT by definition has to be done by the patient. The wishes of the patient should be communicated with key health care professionals and of course the patient might want to discuss their wishes with their family/carer.
  • Care Homes with Nursing
    These homes provide the same help and assistance with personal care as those without nursing care. They also have professional registered nurses and experienced care assistants in constant attendance who can provide 24-hour nursing care services for more complex health needs as prescribed by physicians.
  • Continuing Care
    Continuing care is professional care that's given to meet the physical or mental health needs of adults with a disability, injury or illness over an extended period of time. NHS continuing health care means a package of care that is arranged and funded by the NHS and is free of charge to the person receiving the care. This is sometimes called fully funded NHS care.

    Contact details: NHS Funded Healthcare Team
    Address: Wellsbourne Clinic, Whitehawk Road, Brighton
    Telephone: 01273 570777
    Email: nhsfundedcare@bhcpct.nhs.uk
  • Do Not Attempt Resuscitation
    A do not resuscitate order or form that states cardiopulmonary resuscitation should not be attempted if a person suffers cardiac respiratory arrest.
  • End of life care
    A link to the NHS Choices website, with information on planning your future care, getting ready for your death, hospices and more.
  • Financial Assistance
    Attendance Allowance, Disability Living Allowance and Employment & Support Allowance can be claimed quickly under ‘special rules’ if you are terminally ill and are not already receiving one of these benefits.  A G.P or nurse can help with these forms and can even fill them in on behalf of a patient.
  • GSF Supportive Palliative Care Register
    Gold Standard Framework is a systematic common-sense approach to formalising best practice, so that quality end of life care becomes standard for every patient. It helps clinicians identify patients in the last years of life, assess their needs, symptoms and preferences and plan care on that basis, enabling patients to live and die where they choose.
  • Independent Mental Capacity Act (IMCA)
    The Mental Capacity Act (MCA) 2005 came into force in 2007 and introduces the new statutory role of the Independent Mental Capacity Advocate (IMCA) to support people who lack capacity to make certain decisions, in certain situations.
  • Information on equipment and adaptations
    If you have a disability, there are a number of ways the council can help you live more independently in your home - whether you own it, rent privately, or are a council or housing association tenant. These can include providing equipment to make daily tasks easier, or adapting your home to improve access or help you use bathing facilities. These adaptations may be funded or partially funded by the council, depending on your circumstances. If you have a district or community nurse they can advice on how to access specialist equipment.
    Please contact Access Point for more information.
  • Lasting Power of Attorney(LPA)
    An LPA is a legal document that you (the donor) make using a special form. It allows you to choose someone(the attorney) that you trust to make decisions on your behalf about things such as your property and financial affairs or health welfare at a time in the future when you no longer wish to make those decisions or you may lack the mental capacity to make those decisions yourself. An LPA can only be used after it is registered with the Office of the Public Guardian. If you are considering making an LPA it is advisable to seek independent legal advice from a solicitor. 

    Solicitors online can supply you with a list of solicitors in your area.
  • Organ Donation
    Organ donation is the gift of an organ to help someone who needs an organ transplant.  An organ transplant can dramatically improve or save someone’s life.
  • Pain Control
    Managing symptoms, including pain, is an important part of end of life care.
    Each person will have different symptoms depending on their condition and the kind of treatment they may be having. Symptoms might include nausea and vomiting,constipation,loss of appetite and pain. Your health professionals will work together with you and your doctor to manage your symptoms and help you feel as comfortable as possible.
  • Specialist Palliative Care Team
    This care team is based at the Royal Sussex County Hospital.
  • Sussex Cancer Network (SCN) NHS
    The SCN aims to ensure that high quality, patient focused cancer care services are provided on an equal basis to everyone across the region.
  • Writing a Will
    By making a will, you are simply ensuring your final wishes are legally recognised. Age Concern have a free legal clinic in will writing service

Faith and End of Life

  • Brighton and Hove Inter-Faith Contact Group
    If needing spiritual support in the community there are numerous places of worship and organisations who can offer support and guidance.
    Brighton and Hove Inter-Faith Contact Group exists as a resource for contact and dialogue between the many faith communities and traditions in the Brighton and Hove area. It is their aim to help build and maintain good relations and greater understanding between groups.
  • Faith and End of Life
    Spirituality and religion can be important to patients and families. These spiritual issues and concerns should be integrated into the overall care plan. While in hospital spiritual support can be sought by contacting the chaplaincy departments. A chaplain is on call 24 hours a day, 7 days a week. Members of the chaplaincy team are happy to talk to patients and their families, not only about specifically religious matters, but about any more general spiritual concerns

    Telephone: 01273 696955 ext 4122



Gender, age, relationships and End of Life

There may be different issues for different relationships during a life limiting illness. For example, people in same sex relationships may encounter issues around next of kin.
There are various organisations who can help you address issues around gender and age. Some local contacts are:

  • Age Concern
  • Brighton & Hove LGBT Switchboard
    Offers counselling services, legal advice, housing and information on local clubs as well as youth projects. It also provides a room finder service and volunteer vacancies and information about donating and fundraising for the Switchboard.
  • Relate
    Offers counselling for people around relationship issues.
  • Terrence Higgins Trust
    Offers emotional support and information on the phone.
  • Winston’s Wish
    Winston’s Wish is a leading childhood bereavement charity and the largest provider of services to bereaved children, young people and their families in the UK.

Useful books, leaflets and websites