All-Age Palliative and End of Life Care Draft Strategy
Thank you for providing your feedback in the engagement questionnaire about the NHS Leicester, Leicestershire and Rutland Integrated Care Board’s draft All-Age Palliative and End of Life Care Strategy.
The consultation is now closed. Further information regarding this consultation will be shared shortly.
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About palliative and end of life care
Palliative care is available when you first learn you have a life-limiting or incurable illness. Palliative care is specialised medical care that focuses on providing people with relief from pain and other symptoms of the illness. It can also help people cope with side effects from medical treatments.
You might be able to receive palliative care while you are receiving other treatment for your condition.
End of life care is a form of palliative care you receive when you’re close to the end of life – in the last months, weeks, or days.
Different health and social care professionals are involved in palliative and end of life care. Understanding how these professionals can help you and knowing what is available in your area can help you access the best care for you or your loved one.
Care at the end of life should be centred around the person. The quality of care a person receives at the end of their life – and how and where they receive it – can make a huge difference to the individual and their family, friends, loved ones, as well as the people that deliver the care.
Most people will have a range of needs and it might take different members of staff working together to manage them all. This is why someone who is living with a terminal illness will have different NHS and social care professionals, volunteers, as well as friends and family members, all involved in their care.
Planning care for people who have a life-limiting condition or are at the end of their life
In Leicester, Leicestershire and Rutland, the local NHS have worked with a lot of other organisations to put together a document called ‘Our Palliative and End of Life Care Strategy.’ We have also listened to what people, their families and staff have told us about receiving and delivering care, which has helped us to put the document together.
The Strategy describes what we believe people of any age need in the final stages of their lives to maintain as much independence as possible. It explains what is needed over the next five years, from 2024/25 to 2028/29, to ensure people are comfortable, can live with dignity, feel as good as possible both mentally and physically, and can die in the place they choose.
About the Palliative and End of Life Care Strategy
You can read the full Strategy on our website or you can request a copy.
As you can imagine, the Strategy contains a lot of information. Here is a short summary:
The Strategy includes a statement describing what we want to achieve in the long run from the Strategy. We have called that statement a vision, which says:
“We will ensure you have a personalised, comfortable and supported end of life with personalised support for your family and carers.”
The Strategy has 10 priorities which are listed below. These are the main aims that we would focus on and achieve.
We will:
1) Improve health equity in palliative and end of life care service planning, provision and outcomes. (Equity recognises that everyone is not the same and will need appropriate support to address their needs).
2) Map (or clearly understand) currently available palliative and end of life care services provided in different place to any identify gaps.
3) Improve the services provided where gaps are identified, including for:
- Bereavement support (helping someone cope with a death)
- Anticipatory prescribing – this is medication prescribed in anticipation of symptoms to give relief from pain.
- Social care offer – the services provided by socials care e.g. practical help everyday life.
4) Improve systems for early identification of people at End of Life. (Understanding earlier who needs support).
5) Improve advance care planning. This is the discussion between an individual and their health and care provider about their preferences and priorities for their future care.
6) Improve record sharing and inter-operability of data systems across settings. (Making sure that everyone involved in a person’s care can access information about them and their needs, so patients don’t have to keep repeating it).
7) Improve care transition between settings. Making sure if people move from one service to another, that this is easy for the patients and their loved ones.)
8) Improve information, communication and engagement:
- support available;
- support to self-manage conditions;
- access and signposting to information and services;
- service offer;
- promoting discussion about death and dying;
- culturally appropriate information (being respectful and mindful of ethnicity, race, language, background, religion, gender and gender identity).
9) Provide a consistent and comprehensive training and resilience offer for staff carers and volunteers (including recruitment), and monitor take-up. (Resilience is their ability to cope).
10) Improve the support provided to families and carers.
The Strategy explains an assessment that was undertaken by the Leicester City Council, Leicestershire County Council and Rutland County Council. The assessment outlines what is needed at end of life. It is divided into 6 ambitions. Each ambition has several actions that, if undertaken, will help to achieve the ambition. The ambitions are:
- Each person is seen as an individual.
- Each person gets fair access to care.
- Maximising comfort and wellbeing.
- Care is coordinated.
- All staff are prepared to care.
- Each community is prepared to help.
The Strategy lists 6 different workstreams (groups of people working together on certain tasks) that will be put in place to deliver the actions within the Strategy. They will report to a more senior group called the Palliative and End of Life Task Force. This group then reports into various other groups, so that their work is accountable overall to the Leicester, Leicestershire and Rutland NHS Integrated Care Board. The people on the Integrated Care Board are senior managers from all the main NHS and local authorities in Leicester, Leicestershire and Rutland. It also includes organisations who represents patients.
How did people get involved to share their views?
We wanted you to tell us what you thought about the Strategy based on what matters to you and your family.
There were several ways for people to share their views, such as:
- Visiting our website and completing the online questionnaire:
- Emailing your views to: llricb-llr.beinvolved@nhs.net
- Calling 0116 295 7572 to ask for a paper copy of the questionnaire
- Writing to us at: Freepost Plus RUEE–ZAUY–BXEG, End of Life Engagement, Leicestershire and Rutland Integrated Care Board, Room G30, Pen Lloyd Building, Leicestershire County Council, Leicester Road, Glenfield, Leicester LE3 8TB
Key documents
Click on each of the following links to download the corresponding document.
What happens next
Your feedback will be analysed and evaluated, and a Report of Findings produced and published. The information will be used to shape the next draft of the All Ages Palliative and End of Life Strategy.