Community-based specialist palliative care

Community-based specialist palliative care

July 2022
Thank you for taking part in this survey.

This survey has has 4 sections and around 30 questions and we anticipate it will take 15-20 mins to complete.

The NHS and its partners in North West London want to know more about the care and support delivered by our community-based specialist palliative care services for adults (18+). We want to know what is important to you and what needs to improve to ensure we deliver high quality care and excellent patient and family/ carer experience through these services.

Many health and social care professionals (i.e. district nurses, GP, care home staff, social workers), as well as family and friends provide community-based care and support for our NW London residents who have palliative and end of life care needs.

By community based specialist palliative care, we are a referring to specialist level of palliative care that is delivered in a setting that is not within a hospital or a GP surgery, but rather in a patient’s own home, a care home, a hospice and a community hospital or centre.

Examples of these types of care services include:
- hospice bedded inpatient care
- hospice day and outpatient services
- community specialist palliative care nursing team providing care and support in the patient's own home
- Hospice@home service.
We are seeking to hear all views and opinions on what is important to you about this type of care and support if you or those important and close to you had to receive community-based specialist palliative care.

Your responses will be analysed anonymously, and it is important that you are as honest as possible to allow us to hear things we otherwise may have missed or ideas we may not have thought of. We will use the feedback received to help develop the future new model of care and support we want to introduce in North West London. Previous surveys have already fed into this process.

Previous survey results can be found at www.nwlondonics.nhs.uk/get-involved/cspc/how-get-involved/surveys

This is just one of the ways people can share their views. You can e-mail us at nhsnwl.endoflife@nhs.net or visit us at www.nwlondonics.nhs.net/getinvolved/cspc to find out other ways of getting involved including signing up to receive our e-newsletter.

In this survey we use the word 'they' to refer to the person close to you who has recently passed away.

Thank you for taking the time to complete the survey.
SECTION 1 - What is important to you about community based specialist palliative care?

This section is asking - what would be important to you if you or a person close/ important to you was to receive community-based specialist palliative care and support.
1. Please indicate if you are a:

Local resident Local resident with experience of caring for someone who used community-based specialist palliative care Health professional who works in community-based specialist palliative care services Health professional who works in palliative care in an acute hospital setting Health professional who works with community-based specialist palliative care services Other

2. When looking at community-based palliative care services how important is it that:

	Strongly agree	Agree	Neither agree or disagree	Disagree	Strongly Disagree	Don't know/cannot say
Services are available 24/7 365 days a year?
I am able to contact someone 24/7?
Pain relief is available 24/7?
I do not have to repeat myself to every clinician I meet?
I have a named clinician/professional for my overall care?
I receive bereavement support pre and post bereavement?
Services are culturally and identity aware?
Services are easily accessible

3. How important is it to you that someone takes into account your culture, faith or sexual identity when the following occurs?

	Strongly agree	Agree	Neither agree or disagree	Disagree	Strongly disagree	Don't know/cannot say
That I am greeted in a culturally/identity sensitive way?
That they take time to get my perspective about health and illness (e.g. it's name, treatment course & prognosis)?
That they carry out a culturally sensitive physical examination?
That they factor in your culture and identity into your treatment plan?
That they understand and accept that my cultural practices may impact on my willingness to keep to a care and treatment plan?

4. Do you have specific customs, practices or religious beliefs that you would like to be considered in the care that you receive?

Yes No (please go to question 5)
4.1 What are the specific customs, practices or religious beliefs you would like us to consider?
5. Would there be aspects of medical care that you would wish to forgo or have withheld because of your cultural or religious beliefs?

Yes No (please go to question 6)
5.1 What are these aspects of medical care you would like to forgo or have withheld?
6. Are there any specific cultural or religious practices that are important to you at the time of death, or afterward, that we should know about?

Yes No (please go to question7)
6.1 What are the specific practices we should know about?
7. What does a community-based specialist palliative care service that is sensitive to your cultural, religious and identity needs look like?
8.What type of care and support is most important to you when receiving a service from community-based specialist palliative care?
9. Have you had a recent experience of a community-based palliative care service for yourself or someone close to you?

Yes - go to Section 2 - Your experience of community-based specialist palliative care No - go to Section 3 - Anything to add

SECTION 3 - General questions about community-based palliative care

Please give your views
12. What does good quality community-based specialist palliative care look like to you?
13. What does good patient experience look like to you?
14. When considering community-based specialist palliative care what does good family and carer support look like and mean to you?
15. Is there any other information you would like to share with us at this point including when you think a service did well or didn’t do well??

Section 4 - Further information
1. If you would like to receive further information, please sign up to our mailing list by submitting your email address.
example@example.com
2. We wish to reach out to all parts of the community in North West London. If there is a group that you would recommend that we speak to, please provide their details and the name, address and contact details of the group if you are able.
3. We are using patient stories/ case studies to illustrate the good experiences and the challenges that people face when using community-based specialist palliative care services so that we can learn from their experiences. If you would like to talk to us about this please email nhsnwl.endoflife@nhs.net
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Community-based specialist palliative care

SECTION 1 - What is important to you about community based specialist palliative care?

SECTION 2 - Your experience of community-based specialist palliative care services for yourself or someone close to you

SECTION 3 - General questions about community-based palliative care

Section 3 - Equality and diversity monitoring form

Section 4 - Further information

	Strongly agree	Agree	Neither agree or disagree	Disagree	Strongly disagree	Don't know/cannot say
There was enough help available to meet the individuals personal care needs such as toileting needs
There was enough help with nursing care, such as giving medicine and helping the individual finding a comfortable position in bed
The individual's emotional needs were considered and supported
Efforts were made to ensure the individual was in the place they wanted to be cared for
If care was provided in a hospice, care home or outside of the home, did the bed area and surrounding area have enough privacy