Opportunities to get involved

Looking out for people who have been bereaved – can you help us?

Do you have any top tips of things to say and do - and things not to say and do – when someone has been bereaved?

And do you have personal experience of people’s responses to a bereavement, whether they were helpful or not, that you would be willing to share with us?

If so, we’d love to hear from you in relation to a project we’re working on. Please contact Louise Palmer, Community Involvement Manager, on l.palmer@ncpc.org.uk for more information about the project and to share your thoughts.

Are you interested in ethics in end of life care? If so, we’d like to hear from you. 

We’re running a conference focusing on the ‘ethics of choice’ in end of life care. It doesn’t focus on assisted suicide because we’re working within the current legal framework, but it will explore all kinds of aspects of choice, the reality of it, what needs to be in place, funding and many other things.

We’re particularly interested to hear from people who have a life limiting condition but are still of the opinion that choice exists at the end of life and their perspective on this. 

To tell us about your perspective, please email:  l.palmer@ncpc.org.uk

Thank you, as always for being involved and for all you do to support our work.

Help identify priorities for future research into palliative and end of life care

We would value your help in helping identify priorities for future research in palliative and end of life care. Please complete this survey by 26th October by clicking on the link below. Thank You.


For more information about the project, which NCPC has been involved in, please visit www.palliativecarepsp.org.uk 

A national review of choices in end of life care – We want to hear from you

Almost half a million people die in England each year. However, significant numbers of people do not currently have proper opportunities for their choices about how, when and where they receive end of life care to be identified, discussed or met. Please tell us what you think about the choices that should be open to people at the end of life and what would need to be in place for them to be achieved by responding to our online survey (see details below). Please note that this review focuses on end of life care for adults aged 18 and over, and within the current legal framework. Therefore, it does not focus on assisted dying or anything that would involve changes to mental capacity legislation. 

Respond to our online survey here

Book a place at a consultation event in London or Leeds

Read more about the consultation here

Do people’s wishes for the end of life change when faced with the reality of our mortality?

We are exploring the concept of ‘choice’ in end of life care, not in relation to assisted dying, but in relation to other things people might choose e.g. where they would like to be cared for, where they would like to die, decisions about care and support and so on.

People are being encouraged to speak more openly about the end of life early on and express their wishes to those near to them. For example, by writing a will or sharing their funeral wishes. However, when faced with the reality of our mortality, our feelings can change considerably. 

We’d love to hear from people who:

  • Have a life-limiting condition who had thought about their wishes for the end of life before they knew the prognosis, who then experienced a change of heart afterwards. 
  • Have cared for a relative or friend who died, who can share how the imminence/reality of death affected their choices for how they were cared for at the end of their life

If you have a personal experience you would like to share by email in the first instance, please contact l.palmer@ncpc.org.uk to let us know, and we will be in touch to hear more. 

Public Health England is inviting patients, carers and the public to respond to two consultations about end of life care data:

  1. Plans to introduce a new national individual-level data collection from specialist palliative care services. The aim is to collect data that will improve care for individual patients and their families. The proposed data collection includes patient and carer assessment of the impact of care and will also support the requirements of a palliative care funding system being developed by NHS England. For further information, to view the proposed data items and to respond to the online survey, please click here. The closing date for this survey is Friday 27 March 2015.
  2. Proposed changes to national information standard for end of life care co-ordination. This standard specifies the information to be held in Electronic Palliative Care Systems (EPaCCS). These electronic records enable health and social care staff caring for a patient access, with the person’s consent, to their preferences and wishes for end of life care.  If you would also like to respond to this online survey, please click here. The closing date for this survey is also Friday 27 March 2015.

Thank you for your support.

Request for comments by Department of Health: Draft guide for patients on making complaints and giving feedback

The Department of health is inviting comments on a draft of a short, simple guide to making complaints and giving feedback about NHS care, to help patients and the public understand how they can raise concerns about NHS care. They want to make sure the guide is as clear and helpful as possible. You can make comments online at http://consultations.dh.gov.uk/nhs-constitution-team/bb33575d until Monday 8 September 2014. If you have any questions, please email the NHS Constitution team at nhsconstitution@dh.gsi.gov.uk.

NICE guideline on Care of the dying adult

National Institute for Health and Care Excellence is currently recruiting lay members of the Guideline Development Group for Care of the dying adult.

Further information about the guideline topic, and the draft scope for the guideline, which is out for consultation now, can be found here

Information about the recruitment process and all necessary forms can be found at the following link.

The closing date for applications is 5pm 29 August.