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Providing access to palliative care information and education for patients, carers and professionals to promote end of life choices
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Resources

The resources on these pages are intended for staff working in partner organisations; Leeds Community Healthcare NHS Trust, Leeds Teaching Hospitals NHS Trust, St Gemma’s and Sue Ryder Wheatfield’s Hospices, Leeds Adult Social Services and Yorkshire Ambulance Service NHS Trust.

Whilst we endeavour to keep such information as up-to-date as possible, we make no claim as to its total accuracy or completeness. Information is liable to change, and it is the individual’s responsiblility to ensure that the guidelines and policies they access are up to date and appropriate for their area of practice and their employing organisation.

Referral forms

These forms can only be accessed from a NHS linked computer. For each link you may need to scroll down the web page to access the form.

Contact information

Some of these links can only be accessed from a NHS linked computer.

Information for carers – local services

This service directory lists services available to people living in Leeds including contact details for:

  • Specialist and palliative care services
  • Respite services
  • Non-cancer organisations
  • Bereavement support

Clinical guidelines and policies

Regional DNACPR form

  • This form is intended to improve the quality of DNACPR decision-making and to record and communicate DNACPR decisions.
  • It is specifically for those patients who are approaching the last days of life, where cardio-pulmonary resuscitation would be futile or not a viable option. It makes it very clear that patients should still receive all other appropriate care and treatment. Crucially it also takes into consideration advice of the Mental Capacity Act and gives a legitimate framework in which to discuss all aspects of end of life care.
  • The form which is transferable between a patient’s home, hospital, care home, hospice or any care setting is intended to replace the various forms currently used across health and social care organisations.

NHS Leeds Community Healthcare guidelines and policies

This web page includes links to:

Clinical:

  • Making decisions about resuscitation
  • Verification of expected death of an ddult by a registered nurse (General)

Guidelines > Clinical:

  • Clinical Guideline for the Safe Use of the McKinley T34 Syringe Driver (Medical Devices)
  • Administration of Subcutaneous Fluids (Hypodermoclysis) (General Guidelines)

YCN guidelines including ‘A Guide to Symptom Management in Palliative Care’

  • In difficult situations consider seeking advice from the local specialist palliative care team.
  • Disclaimer: It is intended that theses guidelines are to be used by qualified medical and other healthcare professionals as an information resource. They should be used in the clinical context of each individual patient’s needs. The palliative care group takes no responsibility for any consequences of any actions taken as a result of using these guidelines.

Treatment and care towards the end of life: good practice in decision making

  • This new guidance for doctors came into effect on 1 July 2010.  It replaces the booklet Withholding and withdrawing life-prolonging treatments (2002).  It expands on the guidance in Consent, patients and doctors making decisions together, which sets out the principles on which good clinical decisions should be based, and provides a framework for good practice when providing treatment and care for patients who are reaching the end of their lives.

Guidelines for communicating prognosis and end-of-life issues

  • Article from The Medical Journal of Australia
    Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers
    MJA 2007; 186 (12 Suppl): S77-S108

Guidance for staff responsible for care after death (last offices)

  • Developed by the National End of Life Care Programme and National Nurse Consultant Group (Palliative Care), this guidance:
  • sets out key principles
  • is intended as a guide for training, as well as for informing the development of organisational protocols for this area of care
  • aims to provide a consistent view that accommodates England’s diverse religious and multi-cultural beliefs.

Capacity, care planning and advance care planning in life limiting illness:  A Guide for Health and Social Care Staff

  • This guide is an updated version of Advance Care Planning: a guide for health and social care staff.  It covers:
  • the importance of assessing a person’s capacity to make particular decisions about their care and treatment and of acting in the best interests of those who are assessed as lacking capacity to make these decisions.
  • the differences and relationship between care planning and advance care planning.

End of Life Care Patient Charter

  • A charter for the care of people who are nearing the end of their life
  • As part of the implementation project for the UK wide Royal College of General Practitioners End of Life Care (EOLC) Strategy adopted by the RCGP in 2009, a Patient Charter ‘for the care of people nearing the end of their life` was launched on 1 June 2011.

Clinical practice guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients

  • The Centre for Palliative Care in Australia, along with partners/researchers from other institutions, has developed Clinical practice guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients.
  • You can download the guidelines from the Centre for Palliative Care website, along with the methodology and the literature review that supports the guidelines.

The Leeds Opioid Conversion Guide For Adult Palliative Care Patients 2016

  • This local guideline is intended to be used by health care professionals to check dose conversions and to calculate that patients are receiving the correct  PRN ( “as needed”)  doses of opioid medication. If any discrepancies or queries arise during this checking process the prescriber must be contacted.
  • If the guideline is being used as a prescribing tool, it is imperative to read the notes on the right hand side of the document and seek specialist palliative care advice as needed.
  • Disclaimer: It is intended that this guideline is to be used by qualified medical and other healthcare professionals as an information resource. They should be used in the clinical context of each individual patient’s needs. The Leeds Palliative Care MCN takes no responsibility for any consequences of any actions taken as a result of using these guidelines.

Service improvement

Leeds palliative care ambulance operational policy

The Leeds palliative care ambulance operational policy (version 10, November 2013) includes information on aims of service, guidelines for referral, out of hours, staffing and training. It is reviewed annually and updated by the Palliative Care Transport Working Group.

Educational resources

Some of these links can only be accessed from a NHS linked computer. You may also need to scroll down the web page to access the document required.

E-learning for Healthcare – e-ELCA End of life care for all

There are over 150 highly interactive sessions of e-learning within e-ELCA. These are arranged in 4 core modules:

  • Advance care planning
  • Assessment
  • Communications skills
  • Symptom management, comfort and wellbeing

as well as three additional modules (social care, bereavement and spirituality) and one integrating learning module which helps to consolidate and apply understanding in different situations.

Leeds palliative care communication skills strategy

Level 1 – palliative care communication skills learning pack

  • This communication skills learning package has been adapted for use with health and social care staff who provide palliative and end of life care. It is by no means exhaustive, but is intended to give the learner an overview of communication skills required at level 1 as outlined in the Palliative Care Communication Skills Strategy.
    Please note these resources are currently under review.
  • Level 1 communication skills learning pack (pdf)
  • Level 1 learning outcomes and competency elements

Level 2 – palliative care communication skills learning pack

  • This communication skills learning package will consider what makes communication effective and has been designed for use with health and social care staff who provide palliative and end of life care. It is by no means exhaustive, but is intended to give the learner an overview of communication skills required at level 2 as outlined in the palliative care communication skills strategy.
  • Please note these resources are currently under review.
  • Level 2 – communication skills learning pack (pdf)
  • Level 2 – learning outcomes and competency elements

Pre-course questionnaire

This questionnaire has been developed to:

  • Evaluate the marketing and administration of palliative care courses.
  • Assess prior knowledge, skills and confidence.
  • Ensure education, training and development meets the needs of KSF outlines for individuals providing palliative care.

Day evaluation form

This evaluation form is to be used at the training event and will assess the course in terms of:

  • Level and target audience
  • Supporting materials
  • Learning outcomes and learning needs
  • Content
  • Suitability of venue

This questionnaire can be printed and used for all palliative care courses provided by Leeds stakeholder organisations.

Post-course questionnaire

This questionnaire is sent out 12 weeks after any palliative care education or training event. It has been developed to:

  • Assess any improvement in knowledge, skills and confidence as a result of attending the education or training event.
  • Evaluate the impact palliative care education, training and development has had on practice.
  • Evaluate the impact palliative care education, training and development has had on patient and carer experience.
  • Identify any gaps in education or training and assist with the planning of future events.
  • Establish the demand for updates and refreshers and their frequency.
  • Ensure education, training and development meets the needs of KSF outlines for individuals providing palliative care.

A copy of the completed evaluation can be used it is evidence for your professional portfolio and appraisals / KSF development reviews.

Staying effective in a changing world – tools of the trade for facilitators in end of life care

More than 90 End of Life Care Facilitators attended the second Facilitators’ Network conference in Leeds on 1 March 2011.

The focus of event was to equip facilitators with further practical tools to enable them to continue driving forwards improvements in care.

This report details the the range of audit tools, education programmes and innovative community projects that were shared during the day.

Change pain

Change Pain is a comprehensive educational programme designed to provide guidance and shared knowledge to help healthcare professionals advance the management of severe chronic pain. (This resource is at the end of the web page provided via the link above)

e-learning modules on Macmillan Cancer Support’s Learn Zone

Macmillan Cancer Support have produced e-learning modules on Palliative care during the “out of hours” period through BMJ Learning. They have also produced a further selection of free of charge e-learning modules based on the coordination of care in the out of hours period.

The modules cover practical guidance and information on a number of key areas of out-of-hours and palliative care and allow users to “dip in and out” as they choose with each module taking between 30 and 60 minutes to complete. There is a self assessment at the end of each module which you can complete. Following completion of the self assessment, they will provide a certificate that you can print off to support your annual appraisal and Continuing Professional Development (CPD).

Training needs analysis (TNA) tools

The National End of Life Care Programme have produced end of life care training needs analysis (TNA) questionnaires, along with a communication skills self-assessment questionnaire.

These tools are relevant for all staff involved in, or planning to be involved in, end of life care. They help to identify and address any gaps in workforce skills, knowledge and attitudes and can be used to survey all workers in health and social care – regardless of discipline, grade, role, responsibility or setting.

Caring for Patients with Advanced Kidney Disease at the End of Life – Ten Top Tips

‘10 Top Tips’ is a guide produced by NHS Kidney Care to help GPs and primary care professionals provide high quality end of life care to patients with advanced kidney disease.

The tips cover a range of topics, from how to identify patients who may be nearing the end of their lives and working with the multidisciplinary team to check what plans are already in place, to guidance on symptoms and medication for patients with advanced kidney disease.

Other

Marie Curie film guides for carers

  • Film guides for carers
    Marie Curie Cancer Care has produced a series of films to help you care for someone who is getting weaker as their illness progresses. The films focus mainly on helping a person with their personal care, helping them to move, and supporting them with everyday living.
  • Help at the end of life
    Marie Curie Cancer Care has produced films which aim to support you to care for someone who is coming to the end of their life and expected to die within a few days. The focus of care at this time is about making the person comfortable and doing only as much as they want to do, or are capable of

Care home resource list

    • This is a list of resources available for care homes to find information which will help with the care of their residents, it is not exhaustive.
    • The ‘What’s new’ page of this website should also be checked regularly.
    • If you know of any other information which could be of use please email us.

Checklist for end of life care for nursing homes

Help the Hospices – Adding life to days: a short film

      • Help the Hospices have produced this short film.
      • Did you know that most hospice care takes place in people’s own homes? Were you aware that hospices care for friends and families too? There may be many things about hospice care that surprise you – this short film gives an insight in what hospices really do.

Planning for your future care – a guide

      • This guide is for members of the public and explains advance care planning. It outlines the different options available to people when planning for their end of life care.

National End of Life Care Programme

        • The National End of Life Care Programme works with health and social care services across all sectors in England to improve end of life care for adults by implementing the Department of Health’s End of Life Care Strategy.
        • Their website is designed to support health and social care staff working, in any capacity, with people nearing the end of life.

The National End of Life Care Intelligence Network (NEoLCIN)

        • NEoLCIN aims to improve the collection and analysis of information related to the quality, volume and costs of care provided by the NHS, social services and the third sector, to adults approaching the end of life. This intelligence will help drive improvements in the quality and productivity of services. The Network is supported by the National End of Life Care Programme.

  International Observatory end of life care report

        • This report reviews the CHESS programme and CAPCCS team.

Macmillan Cancer support primary care cancer lead resources

        • Macmillan have produced a number of documents to assist PCCLs in influencing their local health economy and shape the future of the PCCL role.

  Priorities for dementia care within the end of life care strategy’s quality markers and measures for commissioners

        • Living well with dementia: A National Dementia Strategy (DH, 2009) includes an objective of improved end of life care for people with dementia. It suggests that to meet that objective ‘local work on end of life care needs to focus on the large numbers of people who will die with dementia’ and makes reference to the End of Life Care Strategy: delivering high quality care for adults at the end of life (DH, 2008). This guide maps out some of the priorities for achieving high quality care for adults with dementia at the end of life.

Out of the shadows: end of life care for people with dementia

        • This report is available to subscribers of the NCPC website.
        • This report has been published by the National Council for Palliative Care (NCPC) with Marie Curie Cancer Care, NHS Haringey, Barnet, Enfield and Haringey Mental Health NHS Trust, Haringey Council and For Dementia in October 2009.
        • This report is based upon: discussions at meetings with health service professionals who have cared for a wide range of people with dementia; conversations with carers of people with dementia; and an analysis of the histories of care received by a small sample of people with dementia who died in Haringey between May 2008 and March 2009.

NICE guidance for patients and the public

        • NICE produce versions of all their guidance for patients, carers and the public.
        • The ‘Understanding NICE guidance’ documents are designed to complement, not replace, other sources of patient information that explain in more detail the condition and available treatments. Most of these documents contain contact information for relevant patient or carer organisations that can provide more detailed information and support for specific conditions.

Easy-read accessible books about cancer

        • CHANGE has to worked in partnership with Macmillan Cancer Support to publishing accessible information about cancer.
        • They have produced six easy-read accessible books about cancer written for people with learning disabilities and their carers.
        • They are available to order free from Macmillan Cancer Support.

Tailor made: “Personalisation must work for those who need it most…”

      • Through in-depth interviews and focus groups with care users and staff, this pamphlet explores how person-centred services can be achieved for those who need it most – those with multiple and complex needs, and in settings where personalisation is most challenging such as residential care homes and palliative care centres.

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    This website has been developed in partnership by NHS and health and social care organisations in Leeds following the Marie Curie Delivering Choice Programme.
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