Resources

Support towards the end of your life

You are entitled to a broad range of support, not just medical care, at the end of life. 

NHS Choices provides information on what you can expect from end of life care here. But in our experience other support is not always as forthcoming as it should be. It’s important that you know what support you are entitled to, and that, once you are assessed re what care you need, there is a legal obligation on social services to meet your needs.

In addition to statutory care provide by the NHS and Local Authority Social Services there may also be a range of discretionary care provided by other bodies. 

Assessing your needs

In the first instance you should discuss your health and care needs with your GP. The first step will be to arrange an assessment of your care needs.

Adult Social Services are required to assess anyone with care and support needs. You may have to contact your Local Authority Adult Social Services Department to arrange for a care assessment. The UK Government GOV.UK website can help you contact your local authority social services department.

Services

In Scotland anyone who is 65 or over (and is assessed as needing it) is entitled to free personal care. Free nursing care is available to anyone of any age assessed as needing it.

Arrangements in England and Wales are different, personal care is means tested and currently local authorities won’t provide care services if you have more than £23,250 in savings and property. Advice on funding care in England and Wales is available from NHS Choices here.

Your local authority will try to establish whether you need care and if so (in Scotland) pay for help:

  • to maintain your personal hygiene
  • manage your continence
  • assist with the preparation of food and fulfil any special dietary needs
    to maintain mobility
  • with counselling and support
  • to ensure medication is properly managed, and
  • personal assistance to get into and out of bed, to dress, and to use medical aids and prostheses

In addition, local authorities may arrange but may charge subject to a financial assessment for help with:

  • Housework
  • Laundry
  • Shopping
  • Attendance at Day Centres
  • Providing pre-prepared meals (support with preparing meals is free)

If you receive free personal care in your home you are also entitled to attendance allowance to enable someone to take on caring responsibilities. Information on employing a personal assistant is available from the Money Advice Service here. Carer’s too are entitled to support.

You may need to modify your home in order to continue living independently. Your local authority will be able to provide advice and information on what support is available.

The Scottish Government has produced a booklet providing information on Free Personal and Nursing Care. It is available here.

Benefits

Living with illness and/or disability may have financial implications. Your local authority should provide advice on any benefit entitlements as part of you care assessment. The Citizens Advice Bureau are a valuable source of independent advice. Citizens Advice Scotland offers advice on social care support here.

Advance Directives

An Advance Directive is a formal document which enables you to refuse life-prolonging medical treatments/interventions in the event of a situation arising where you cannot refuse them at the time (e.g because you are unconscious — perhaps in a coma — following a stroke, heart attack or car crash).

Many people are sure they would not want to be kept alive in a long-term coma-like state. According to a recent YouGov poll, 82% of people have strong views about their end-of-life treatment but very few (only about 4%) have made an Advance Directive.

One of the reasons for this is that many people wrongly believe that family members would be able to make health care decisions on their behalf. In fact, such decisions are made by your medical team, and must be done in your ‘best interests’ (a legal term), unless you have written an Advance Directive (or appointed an Attorney to act on your behalf). The medical decision-making process should include, but is not limited to, what you would want — and recent legal cases have shown that ‘sanctity of life’ can take priority over what the person might have wanted. Having a statement of your wishes removes any ambiguity from your family/friends and the medical profession, over what you have decided you want.  Further information can be found below:

Advance Directives-Decisions leaflet – Nov 2017

Advance Directive-Decision Form – Nov 2017

Friends at the End offers help to members in completing Advance Directives and is working with the Scottish Parliament’s Cross Party Group on End of Life Choices to increase awareness and uptake alongside changing their legal standing in Scotland.

Do Not Attempt Cardiopulmonary Resuscitation Order (DNACPR)

A DNACPR decision is a decision made in advance that attempted CPR would not be appropriate for a person in the event of cardiac arrest.

When there is some chance that CPR may bring someone back from cardiac arrest to a length and quality of life that they would want, they should be offered:

  • the chance to be given clear and accurate information about their condition and the likely risks and benefits from CPR if they should suffer cardiac arrest
  • the chance to express their beliefs and wishes and to make a shared decision with their health professionals on whether or not they should receive attempted CPR if they should suffer cardiac arrest.

The resulting ‘CPR decision’ would then be recorded either as a decision that attempted CPR would still be appropriate if they should suffer cardiac arrest or as a DNACPR decision.

When a person is dying from an advanced and irreversible condition, where CPR will not work and could cause harm, health professionals have to explain this. Such decisions are made to try to ensure that people receive the care that they need as they are dying, and that they are not subjected to violent physical treatment that will deprive them and those important to them of a dignified death.

However, for many people there is some possibility that CPR could prolong a person’s life, some possibility that it may fail, and some possibility that it may cause harm. The likelihood of each of these possibilities will vary according to each person’s situation at the time. Each person will have their own view of whether they would or would not wish to have attempted CPR in their individual circumstances. More info can be found here: https://www.resus.org.uk/faqs/faqs-dnacpr/

DNACPR Form Scotland

dnacpr-info-factsheet-p4 Scotland

CPRdecisions_patientinfo_England & Wales

DNACPRform_ADULT E&W. pdf

Further support

Nursing and personal care may be provided through a wide range of organisations in your area. ‘Dying Matters’ provide a useful searchable directory called Find Me Help. You can find it here

If you live in Scotland, further information on services in your area can be found through ALISS (A Local Information Service System for Scotland) here.

Further support is available through a range of charities including:

Advance Decisions Assistance

Alzheimer’s Society: end of life care

Befriend at the End

Breathing Space

Cancer Research UK: decisions about care

Compassion in Dying

Cruse Bereavement Care

Dementia UK

Dying Matters: talking about dying

Good Life Good Death Good Grief

Healthtalk.org: people who are living with dying

Hospice UK: about hospice care

Marie Curie: palliative and end of life care

Motor Neurone Disease Association

National Council for Palliative Care

Resuscitation Council UK

Samaritans

“To keep someone alive against their wishes is the ultimate indignity.”
– Stephen Hawking

Case Studies

Read more about the support we have provided to help affect change..