End of Life, Bereavement & Future Planning — UK Disability Guide
This guide is for disabled people, people with long-term illness, carers, families, older people, neurodivergent people, people with mental health conditions, and anyone planning ahead.
It covers future care planning, wills, powers of attorney, bereavement support, funeral help and financial support after death.
Future Care Planning
Future care planning means thinking about what care, treatment and support someone would want if they became seriously ill or could not speak for themselves.
This may include:
- Where someone wants to be cared for
- Who they want involved in decisions
- Medication and treatment preferences
- Personal care needs
- Communication needs
- Religious, cultural or spiritual wishes
- Emergency care wishes
- Who should care for pets or assistance animals
- What should happen if carers can no longer provide support
The NHS explains that advance care planning is about thinking and talking about wishes for care in the final months of life or when dying, especially in case someone cannot make decisions later.
Useful links:
- NHS end of life care: https://www.nhs.uk/tests-and-treatments/end-of-life-care/
- NHS planning ahead: https://www.nhs.uk/tests-and-treatments/end-of-life-care/planning-ahead/why-plan-ahead/
- Marie Curie planning ahead: https://www.mariecurie.org.uk/information/planning-ahead/advance-care-planning
End of Life Care
End of life care should support comfort, dignity, choice and quality of life.
It may involve:
- GP
- District nurses
- Hospice teams
- Hospital teams
- Palliative care specialists
- Social care
- Mental health support
- Carers and family
- Spiritual or faith support
End of life care can happen:
- At home
- In hospital
- In a hospice
- In a care home
- In supported living
NHS end of life care information explains what care involves, what to expect, and where care can happen.
Wills
A will explains what should happen to someone’s money, property, belongings and wishes after death.
A will can help with:
- Who inherits money or possessions
- Guardianship wishes for children
- Funeral wishes
- Gifts to family, friends or charities
- Reducing disputes
- Protecting vulnerable dependants
- Making wishes clear
Consider legal advice if:
- There are children
- There is property
- There are disabled dependants
- There are care costs
- There are family disputes
- Someone has complex finances
- Someone receives means-tested benefits
Useful links:
- GOV.UK wills and probate: https://www.gov.uk/browse/births-deaths-marriages/death
- Citizens Advice: https://www.citizensadvice.org.uk
- Law Society find a solicitor: https://solicitors.lawsociety.org.uk
Lasting Power of Attorney
A Lasting Power of Attorney, called an LPA, lets someone choose trusted people to make decisions if they lose mental capacity.
There are two main types:
- Health and welfare LPA
Covers care, medical treatment, daily routine and health decisions. - Property and financial affairs LPA
Covers money, bills, bank accounts, benefits, pensions and property.
GOV.UK includes services and information about Lasting Power of Attorney under births, deaths, marriages and care.
Useful links:
- Make a Lasting Power of Attorney: https://www.gov.uk/power-of-attorney
- Office of the Public Guardian: https://www.gov.uk/government/organisations/office-of-the-public-guardian
- Mental Capacity Act information: https://www.nhs.uk/conditions/social-care-and-support-guide/making-decisions-for-someone-else/
Bereavement Support
Grief affects people differently. Support may be needed after the death of a partner, child, parent, friend, carer, disabled person, patient or someone lost through suicide, illness, accident or trauma.
Support can include:
- Bereavement counselling
- Peer support
- Practical help after death
- Support for children
- Support after suicide
- Support after traumatic death
- Faith or community support
- GP or NHS mental health support
Cruse Bereavement Support provides a helpline and local support. Their helpline is 0808 808 1677.
Useful links:
- Cruse Bereavement Support: https://www.cruse.org.uk
- Marie Curie bereavement support: https://www.mariecurie.org.uk/help/support/bereaved-family-friends
- Child Bereavement UK: https://www.childbereavementuk.org
- Winston’s Wish: https://www.winstonswish.org
- Samaritans: https://www.samaritans.org
Funeral Support
Funerals can be expensive, and some people may qualify for help.
The GOV.UK Funeral Expenses Payment can help with funeral costs if the person arranging the funeral receives certain benefits or tax credits.
It may help with:
- Burial fees
- Cremation fees
- Travel to arrange or attend the funeral
- Death certificates or documents
- Some funeral director costs
Useful links:
- Funeral Expenses Payment: https://www.gov.uk/funeral-payments
- Tell Us Once service: https://www.gov.uk/after-a-death/organisations-you-need-to-contact-and-tell-us-once
- Register a death: https://www.gov.uk/register-a-death
- Arrange a funeral: https://www.gov.uk/after-a-death/arrange-the-funeral
Financial Support After Death
Financial support may be available after someone dies.
Bereavement Support Payment
Bereavement Support Payment may be available if a partner has died. GOV.UK explains how it works, eligibility, what people may get and how to claim.
Marie Curie also notes that claims can be made online through GOV.UK or by phone through the Bereavement Service helpline.
Useful links:
- Bereavement Support Payment: https://www.gov.uk/bereavement-support-payment
- Apply online: https://apply-for-bereavement-support-payment.dwp.gov.uk/apply
Bereavement Service helpline:
- Telephone: 0800 151 2012
- Welsh language: 0800 731 0453
- Textphone: 0800 731 0464
- Relay UK: 18001 then 0800 151 2012
Benefits, Pensions and Money After Death
After someone dies, there may be changes to:
- Universal Credit
- Pension Credit
- State Pension
- Carer’s Allowance
- PIP
- Attendance Allowance
- Housing Benefit
- Council Tax Support
- Child Benefit
- Tax credits
- Child maintenance
- Bank accounts
- Debts
- Rent or mortgage payments
Useful links:
- What to do after someone dies: https://www.gov.uk/after-a-death
- Tell Us Once: https://www.gov.uk/after-a-death/organisations-you-need-to-contact-and-tell-us-once
- Benefits after a death: https://www.gov.uk/browse/benefits/bereavement
- MoneyHelper: https://www.moneyhelper.org.uk
- Citizens Advice: https://www.citizensadvice.org.uk
Planning for Disabled Dependants
Future planning is very important if someone supports a disabled adult, child or vulnerable person.
Consider:
- Who will provide care if a parent or carer dies
- Benefits and appointeeship
- Trusts or legal advice
- Housing needs
- Care plans
- Social care assessments
- Emergency contacts
- Deputyship or power of attorney
- Education, health and care plans for children
- Safeguarding support
- Advocacy
Useful links:
- Find your local council: https://www.gov.uk/find-local-council
- NHS social care support: https://www.nhs.uk/social-care-and-support/
- Mencap: https://www.mencap.org.uk
- Carers UK: https://www.carersuk.org
- Scope: https://www.scope.org.uk
Mental Capacity, Deputyship and Best Interests
If someone cannot make certain decisions and has no valid LPA, others may need to apply to the Court of Protection.
This may involve:
- Deputyship for finances
- Best interests decisions
- Mental capacity assessments
- Safeguarding concerns
- Care and treatment decisions
Useful links:
- Court of Protection: https://www.gov.uk/courts-tribunals/court-of-protection
- Become a deputy: https://www.gov.uk/become-deputy
- Mental capacity guidance: https://www.nhs.uk/conditions/social-care-and-support-guide/making-decisions-for-someone-else/
Documents to Keep Safe
Keep a folder with:
- Will
- Lasting Power of Attorney documents
- Advance care plan
- ReSPECT form if used
- Medication list
- NHS number
- Care plan
- Funeral wishes
- Insurance policies
- Pension details
- Bank details
- Benefits letters
- Housing documents
- Emergency contacts
- Password guidance or digital account instructions
- Pet or assistance animal care instructions
Tell a trusted person where the folder is kept.
Support for Carers and Family
Carers may need practical and emotional support before and after a death.
Support may include:
- Carer’s assessment
- Respite care
- Emergency care plan
- Bereavement support
- Benefits advice
- Counselling
- Local carers groups
Useful links:
- Carers UK: https://www.carersuk.org
- Carers Trust: https://carers.org
- NHS carers support: https://www.nhs.uk/social-care-and-support/support-and-benefits-for-carers/
- Citizens Advice: https://www.citizensadvice.org.uk
Carers UK helpline:
- 0808 808 7777
Complaints About End of Life Care
If care has gone wrong, families can complain.
You may complain about:
- Poor communication
- Failure to involve family or carers
- Missed pain relief
- Unsafe discharge
- Lack of reasonable adjustments
- Poor hospital care
- Poor care home care
- Lack of dignity
- Delays in support
Useful links:
- NHS complaints: https://www.nhs.uk/using-the-nhs/about-the-nhs/how-to-complain-to-the-nhs/
- PALS: https://www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/
- Parliamentary and Health Service Ombudsman: https://www.ombudsman.org.uk
- Local Government and Social Care Ombudsman: https://www.lgo.org.uk
- Care Quality Commission: https://www.cqc.org.uk
Key Support Links
- NHS end of life care: https://www.nhs.uk/tests-and-treatments/end-of-life-care/
- NHS planning ahead: https://www.nhs.uk/tests-and-treatments/end-of-life-care/planning-ahead/why-plan-ahead/
- Marie Curie: https://www.mariecurie.org.uk
- Macmillan Cancer Support: https://www.macmillan.org.uk
- Hospice UK: https://www.hospiceuk.org
- Cruse Bereavement Support: https://www.cruse.org.uk
- Child Bereavement UK: https://www.childbereavementuk.org
- Winston’s Wish: https://www.winstonswish.org
- GOV.UK what to do after a death: https://www.gov.uk/after-a-death
- Funeral Expenses Payment: https://www.gov.uk/funeral-payments
- Bereavement Support Payment: https://www.gov.uk/bereavement-support-payment
- Lasting Power of Attorney: https://www.gov.uk/power-of-attorney
- Legal aid: https://www.gov.uk/legal-aid
- Citizens Advice: https://www.citizensadvice.org.uk
- MoneyHelper: https://www.moneyhelper.org.uk
Quick Checklist
✓ Make an advance care plan
✓ Write down emergency and care wishes
✓ Consider a Lasting Power of Attorney
✓ Make or update a will
✓ Keep key documents safe
✓ Record medication and care needs
✓ Plan for disabled dependants
✓ Check funeral wishes and possible costs
✓ Use Tell Us Once after a death
✓ Check Bereavement Support Payment and Funeral Expenses Payment
✓ Get bereavement support early if needed
