Best practice guide to end-of-life care for people with a learning disability

Best practice guide to end-of-life care for people with a learning disability

This living and dying with dignity guide is written to support those health, social care, voluntary and statutory care providers and deliverers, either in the learning disability or end-of-life care field, who may be involved in caring for a person with a learning disability at the end of their life.

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Dignity in Care videos promoting innovative ideas

SCIE (Social Care Institute for Excellence) has published 3 Dignity in Care videos promoting innovative ideas to support caring with dignity.

They can be used by care staff; managers; GPs; nurses; commissioners; people who use services and their family carers or friends who are carers.

The new resources include:

  • Dignity in care: Pain management
  • Dignity in care: Personal hygiene
  • Dignity in care: Practical assistance

Putting the Common Core Principles for Dignity into practice

Using the Skills for Care resource ‘Common Core Principles for Dignity’ Monica Newton-Bailey from Prestige Nursing and Care explains how they have used the Principles to develop dignity training to truly personalise a service.

We currently provide 24 hour care for a client who has learning disabilities, living in the community. It was decided that it would be most useful to individualise the training so that the team would be able to engage more readily with the learning materials and this was very effective. Working in this way enabled the team to share ideas and gave them a sense of unity. It also helped with the team being able to fully understand the need to work with continuity and generated a lot of positivity with how they could continue and go forward with delivering a much valued service for the client.

“The team expressed how valuable they had felt the learning was for them”

Common Core Principles for DignityWe have delivered the Common Core Principle for Dignity training on 3 occasions now, which ran for the duration of a morning each time, to ensure that everyone on the team had the opportunity to attend. All 7 Principles were incorporated into the training session and the team engaged very well overall and were keen to bring forward their ideas. In addition to the training we added in Maslow’s Hierarchy of Needs, which some of the team already had knowledge of and others did not. They found this to be very useful and could readily identify where they themselves would be as well as the client.

We also added in Circles of Support/ The Ripple Effect, which had the client at the centre and we were then able to build an image of the people involved in the client’s life. This highlighted the significant number of people associated with the client through family, the care team, professionals and the community. The team expressed how valuable they had felt the learning was for them and they could envisage how the client would benefit from the ideas that were discussed. At the end of the session we gave each individual team member a file with handouts of the training and other useful items for person centred care.

The Common Core Principles for Dignity can be downloaded from: or you can purchase these and a Dignity Training Pack from:

Care about physical activity resource

26/01/2015 Dignity and Respect

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This “Care about physical activity” free resource has been developed by the Care Inspectorate in partnership with the British Heart Foundation National Centre for Physical Activity and Health at Loughborough University to support those who work in the care sector to make physical activity part of every resident’s daily life.

Click here to view the available resources including a booklet, poster and DVD.

Dignity Action Day 2015 Resource Packs

The national Dignity in Care website has published updated their resource packs for Dignity Action Day 2015 which will be held on the 1st February 2015.

The packs contain suggestions for events, activity resources and templates for newsletters.

Click here to view the resource packs

Click here for a list of events that will be held on the day.

SCIE: Dignity in Care Videos

SCIE (Social Care Institute for Excellence) has produced four videos on Dignity in Care covering Social Inclusion, Communication, Privacy and Choice & Control.

These videos are aimed at those delivering care services such as care workers, managers and other care related roles.

View the whole series at:

NICE: Mental wellbeing of older people in care homes

NICE quality standards describe high-priority areas for quality improvement in a defined care or service area. Each standard consists of a prioritised set of specific, concise and measurable statements. They draw on existing guidance, which provides an underpinning, comprehensive set of recommendations, and are designed to support the measurement of improvement.

This NICE quality standard covers the mental wellbeing of older people (65 years and over) receiving care in all care home settings, including residential and nursing accommodation, day care and respite care. This quality standard uses a broad definition of mental wellbeing, and includes elements that are key to optimum functioning and independence, such as life satisfaction, optimism, self-esteem, feeling in control, having a purpose in life, and a sense of belonging and support.

More information:

Loneliness Resource Pack

12/12/2013 Dignity and Respect, Personalisation

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A set of resources to help individuals, groups, communities and neighbourhoods take a closer look at – and to reduce – loneliness.

JRF and JRHT’s Neighbourhood approaches to loneliness has been a three-year action research programme exploring and identifying what makes us feel lonely where we live and work and what we can all do about it – personally and professionally.

This resource pack brings together the lessons and experiences from the programme.

Experience-based co-design toolkit

11/11/2013 Dignity and Respect, Personalisation, Workforce

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This toolkit outlines a powerful and proven way of improving patients’ experience of services, and helps you to understand how it can help you meet your aims. A 2013 global survey discovered that EBCD projects had either been implemented, or were being planned in more than 60 health care organisations, in countries including Australia, Canada, England, the Netherlands, New Zealand, Sweden, and the United States.

As well as step-by-step guidance, the toolkit includes videos of people who have taken part in EBCD projects. These help bring to life the successes and range of benefits that can result from implementing this type of improvement project. The toolkit also includes downloadable resources such as template forms, letters, presentations and other materials, to help you plan and carry out this approach.

More Information:

Living Well through Activity in Care Homes toolkit

This Living Well through Activity in Care Homes toolkit from the College of Occupational Therapists (COH) is free to download and helps to address many of the complications caused by a lack of physical and mental stimulation including infections, preventable falls and depression.

The toolkit helps to promote dignity, physical and mental well being and integration into the wider community.  There are 5 different versions available to download covering residents, family, owners/managers and commissioners.

To access the toolkit visit:

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  • Communicating with people with a learning disability

    by on 16/12/2014 - 0 Comments

    This communicating with people with a learning disability guide from Mencap is designed to provide a brief introduction to communication, and the problems faced by someone with a learning disability. It also contains tips on how you can be a better communicator, and how you can help someone with a learning disability to get their […]

  • The Care Certificate Workbook Downloads

    by on 27/03/2015 - 0 Comments

    The Care Certificate Workbook from Skills for Care is a free downloadable resource aimed at supporting the training process and helping employers and their new health and social care workers to cover parts of the Care Certificate. The Care Certificate Workbook has been produced following the piloting of the Care Certificate, which indicated employers would […]

  • Sensible Risk Assessment in Care Settings

    by on 07/11/2013 - 0 Comments

    The Health and Safety Executive (HSE) has published guidance on sensible risk assessment in care settings.  The guidance covers a range of areas such as moving and handling and falls. Click here to view this guidance.

  • CCTV in Care Homes - CQC Guidance

    by on 19/01/2015 - 0 Comments

    The CQC (Care Quality Commission) has produced guidance on using CCTV in Care Homes.  It sets out some of the key points that you need to consider when using hidden or visible surveillance.  The guide covers consent, safety, informing people and provides sources of support for you. Click here to download the PDF.

  • Top 8 Myths (and the Truths) about Dementia

    Top 8 Myths (and the Truths) about Dementia

    by on 11/12/2015 - 0 Comments

    Many of us will be guilty of assuming that dementia is simply something all older people suffer from. Some of us will think that dementia means the end of a happy life and that nothing can be done to help those with it. Well, as you’ve probably guessed, these thoughts are simply not true.