End of Life & Palliative Care

Here you can find training and useful resources to support people with a learning disability who are palliative or at the end of life

The North East North Cumbria Stop People Dying Too Young group have developed this film as a training resource for professionals to support with end of life discussions and decisions for people with a learning disability,

Margaret’s story

Understanding the patient experience – Margaret’s story

This film and resource pack aim to provide education and increase awareness, allowing people to think about their individual rolls within health or social care and how and when they offer support to individuals.

We are immensely grateful to Margaret for sharing her story and giving us the opportunity to stop and think about how we can better support and work with people with a learning disability.

This film and resource pack are aimed at people working within: primary and secondary care, social care and third sector organisations who support individuals with a learning disability.

If you are viewing the film independently we ask you to look at the learning points within the Margaret’s story resource pack. The resource pack also includes a session plan, so the film can be shared as part of a team meeting or education event.

If you would like to receive a training session using Margaret’s story to look at how we can give the best quality care contact [email protected]

To access a copy of the resource pack use the below link.

Margarets story education and resource pack

A short version of Margaret’s story (approximately 7 minutes) can be viewed below:

Margaret’s story: Videos

A longer 11 minute video where Margaret tells her story can be viewed below:

Supporting people who are palliative with a learning disability

It is recommended that if primary or secondary care identify a person with a learning disability who is palliative, they contact the local community learning disability team. Please email [email protected] for your local contacts.

The community learning disability team will be able to offer tailored support to the individual ensuring they are fully involved in shared decision making and understanding their current condition.

By making a referral as soon as the person is identified as palliative, the community learning disability team will be able to effectively form the relationships needed to fully support their individual needs.

Northumberland Tyne & Wear NHS Foundation Trust

Northumberland Tyne & Wear NHS Foundation Trust have produced an easy read patient information leaflet entitled Advance Decisions and Advance Statements: Making choices about your care and treatment which can be found below:

‘Advance Decisions and Advance Statements: Making choices about your care and treatment’ leaflet

Sunderland Learning Disability Services

Sunderland Learning Disability Services have worked closely with colleagues in palliative care to make sure they share the knowledge and experience…developing information that is easy to understand about becoming poorly and maybe reaching the end of your life.  They have also developed what they call ‘My End of Life’ booklet.

It’s a good idea for patients to fill this in when they are well so that in the future people who love and care for them will know what they wanted when they are no longer here.

A link to their end of life information can be found below. This is excellent information for people with learning disabilities, their families and all carers.  There are three further leaflets available and also a word bank that aims to explain complicated words.

Sunderland Palliative Care Information

Marie Curie

Marie Curie provides a selection of easy read booklets to support those living with or having an illness they will probably die from.

Marie Curie Publications