If you are affected by a life limiting illness »
Everyone responds differently to having a life limiting illness, and every individual will need different information, support and advice. It may be helpful to talk through any questions you may have.
Finding support »
It is natural to feel sad or upset: you may, or may not, want to talk to your family and friends about how you feel. You might find it helpful to consider counselling, which you can arrange through your GP. Alternatively, you can call one of the local information and support services directly who will be able to help you through the difficult times.
Your family and friends will also be experiencing a range of feelings and may also need support.
If someone you know is affected by a life limiting illness or may have died »
People react in different ways following the loss of someone close. Feelings may include a sense of regret, fear, anger, denial, despair, relief, depression, guilt or numbness. However it feels, the grief is unique to each bereavement and grieving is something that will happen at its own pace. Your need for help and support may be met by your family and friends, or you may want to consider bereavement counselling, which you can arrange through your GP. Alternatively, you can call one of the local information and support services directly who will be able to help you through the difficult times.
Finding practical and financial help »
The Jobcentre Plus booklet ‘What to do after a death’ has practical advice including how to obtain a death certificate, register the death, arrange the funeral and more. It also has information about the financial and emotional support which is available. You can get a copy at your local Jobcentre Plus office, call 0800 882200 to request a copy by post or download one here.
You may be entitled to one-off payments such as bereavement payment or funeral payment, or allowances such as bereavement allowance or widowed parent’s allowance. Jobcentre Plus or the Direct.gov website can provide more information.
The Department of Work and Pensions provides a bereavement service to help with the pensions and benefits of the person who has died. Call 0845 6060265 for more information or use textphone number 0845 6062085.
The Royal British Legion can provide for the welfare needs of members of the services or to the ex service community and family members. This could include some financial support when in care home, respite care or help towards funeral expenses. To access charitable funding, the application would be based on the beneficiary having served for at least one week in one of the armed forces. Additionally, any charitable support would be means tested. For further details, contact the National Call Centre on 0808 802 8080 or consult the web pages at www.britishlegion.org.uk
Finding accessible information/easy read information regarding end of life care »
Preferred Priorities of Care (easy read version) available at Easy-Read-Preferred-Priorities-for-Care
Easy read leaflet “What is palliative care?” Also easy read resources around bereavement and end of life books/person centred plans related to death and dying available at: www.easyhealth.org.uk
Easy read leaflet “What is a Macmillan nurse?” available at: www.a2anetwork.co.uk/resources/leaflets-patient-information/
CHANGE and Macmillan Cancer Support have produced the following books in easy read format, each with an accompanying book designed for carers: Palliative Care, End of Life Care and Bereavement. Diagnosis and Treatment. Symptoms, Screening and Staying Healthy. These can be ordered from Macmillan Cancer Support’s website: www.macmillan.org.uk
Mencap “Living and dying with dignity” easy read version, available at www.mencap.org.uk/endoflifecare
“We are living well but dying matters” a DVD produced by CHANGE to encourage people with learning disabilities to express their thoughts and questions about death, dying and planning for the end of life. Available to order from: www.changepeople.co.uk or www.dyingmatters.org
Books Beyond Words. A series of picture books developed to make communication easier for people with learning disabilities and to enable discussion about difficult topics. Titles include “Am I going to die?” and “Getting on with cancer”. Available to roder from: www.rcpsych.ac.uk/publications/booksbeyondwords.aspx
The Child Funeral Charity »
The Child Funeral Charity (CFC) is a new charity that aims to help grieving parents struggling with funeral costs. Subject to trustee approval, it will make up to £700 per application available to grieving parents to help towards the cost of a funeral for their baby or child. www.childfuneralcharity.org.uk
What to expect when someone important to you is dying guide »
NCPC has published a new guide for people who are supporting a loved one who is dying.
‘What to expect when someone important to you is dying‘ aims to demystify the dying process so that people better understand the changes that can happen to their loved ones in the last days of life.
Shaped by people who have experienced the death of someone they were close to, and with support from NHS England, Marie Curie, Sue Ryder and Hospice UK, the guide is intended to make the last hours and days of someone’s life less distressing for all concerned, including friends, family members and carers.
As well as explaining the physical changes that someone may go through when they are dying and what can be done to make them more comfortable, the guide sets out the kind of care a dying person can expect to receive. It also details the support those close to the person who is dying should be able to rely on and where to turn to for help if there are concerns about the end of life care received.
The guide is a valuable resource for carers, families and friends of people who are dying.
You can download a digital version of the ‘What to expect when someone important to you is dying’ by CLICKING HERE.