We would like to say thank you to everyone who attended the event. Their thoughts and feedback will be used as evidence as we move forward to develop the future model of care.
Attendees highlighted a wide range of issues including the importance of raising awareness of palliative care with the public and education and training of clinical and caring profession. All attendees felt a lot more engagement with all of our communities was needed.
Language, culture and faith was consistently raised – as was the impact on people who are hard of hearing. during a discussion on what was important to them about community-based specialist palliative care.
The impact of oral care on palliative care patients was raised for the first time by one participant and the need for it to be included in care plans.
What does Palliative Care mean to you, family, friends and communities?
- Directly involved as a patient for 8 years. It’s important to get it right. There should be more Joined up thinking to how Palliative Care is managed. An example given of a man who went to his GP, and his GP didn’t know what to do or what advice to give him. Palliative Care is everyone’s responsibility so all health professionals need to be informed and involved in the pathway.
- Palliative Care is also about how you live your life whilst you’re dying.
- People should be encouraged to think about and talk about end of life care. Not brushed under the carpet. GP’s should not be afraid to discuss this with older patient groups. Also as a very diverse population available services and choices should be reflective of the population. End of life Care needs to be flexible and respond to the individual.
- Oral care support and dentistry should be made available to PC patients. Patients with dementia need to have oral care in their care plans as a matter of course.
- Hearing Aids – people are misdiagnosed with dementia because they can’t hear.
- Warfarin – There are a new range of drugs being made available for patients receiving Palliative Care, not just warfarin.
- One suggestion in a previous meeting, someone suggested that the idea of ACP's could be integrated with Health Care checks, to raise awareness of this.
- It is about ensuring clear communication for the patient/family members - and also being clear on admission/or when visiting at home, any limitations on hearing/language.
- Who pays for services can be a barrier at times and can add delay to the delivery of services for patients on EOL pathway e.g. dental care for patients in care home.
- Disconnect in Services is an issue – EOL service is provided by a variety of team who need to work together to deliver care. it is important all teams are aware of what is available within system and how to help the patient navigate through services.
- Recently attended a BME forum where there was a discussion around end of life care. A Key issue that came up from this forum was that people from BME backgrounds don’t know what to expect or what services are available. Also, services need to think about how to introduce the subject of end of life care in a culturally sensitive way.
- The CCG should carry out a wider consultation with different community groups and improve knowledge about what end of life care means to different groups, and provide training to cultural leaders on how to be part of those conversations. Language should be clear and not complicated and difficult to understand. Also there needs to be more time to consultation with BME communities.
- H&F has Agewell activities- do you think that it should be offered as a short course for over 50's so that the myths and misconceptions can be discussed- and by extension should these be available via faith groups in churches and mosques?
- A suggestion it to introduce any Death doolahs? maybe re naming them as palliative care doolahs.
- Are you creating a pathway for single people? a friend has told me of the number of deaths in a co -op in Westminster where people died alone?
Other opportunities to engage in consultation process.
- People who can’t make these events can e-mail firstname.lastname@example.org and give their views on the consultation.
- There will be another public event on 10 May for H&F, plus another event date to be confirmed for Bi-borough. There is also an online survey available on ICS website that people can complete.
- People from specific cultural background would like someone from their own community to provide end of life care, as they would understand culturally specific rituals relating to end of life. Cancer care and the pathway can be very difficult to navigate for people from BME backgrounds, and these people are very reliant on the community for support during these difficult times. Palliative Care must be understood by the communities it serves, because it currently isn’t.
- Palliative Care should be patient centred. The family should be involved. Need to think about a better and more integrated PC services, between the patient and family, the community, social care and clinical services.
- Patient Centred Care is critical. Currently facing the loss of a local hospice care, an important local resource. We need to ensure we have the full range of resources available locally, and preserving what’s currently there is critical.
- There is Healthwatch and locally Young Healthwatch- there are local festivals- arts Festivals where you could be there and give reassurance - maybe use history to teach younger community members?
- In H&F I would get involved with the Lyric- they have performances that do confront life and death and it might be something that they could take up with their youth groups- they support diversity.
- Some people don't want to address this issue .... and we also have to accept their choice.
One thing you would change, what would that one thing be?
- The fear when someone hears the word Palliative. Needs to become normalised and removing the fear around the topic and language.
- Communication with the person who’s in receipt of the care, and how the different parts of the pathway communicate and work together need to improve.
- A centre/hub of information and expertise. An open and public place to help break down the barriers that currently exist. Somewhere end of life specific, so you don’t have to be running around to find the information you need. Info about all of the relevant services to be made available in one place/platform.
- Practicalities around end of life. Organising funerals etc., e.g. a Coffin Café. Speaking about death and the important practical things to think about to help alleviate and prevent unnecessary stress whilst dealing with a bereavement. E.g. policy on what we can and cannot do for last rites changed due to covid. This meant people could not carry out most of their traditional rituals that they would have followed pre covid. Although these are put in place for safety, it is important to consider how to make this work i.e. educating communities in timely manner is important.
- Would be helpful to educate people around end of life care and what to expect. The conversations need to start in hospital. A lot of info has gone online which some people find very difficult to access and navigate. People prefer face to face conversations. Palliative Care information should be raised at community events.
- One thing I would love to change is to improve understanding of how services can work better with the BME community. Service becoming more centred and recognise the diversity needs of our community.
How and where do we get Palliative Care information out to people?
- Community events. Attended by people from all age groups.
- Education – integrating palliative care conversations with younger groups and normalise the issue. ‘Departure Lounge’ held in Lewisham and was a fantastic event. Death Cafes.
- Added to school curriculum and include cultural rituals as part of ‘whole of life’ education. Setting up cafes.
- Commissioned Services should include the introduction of palliative care in to contracts. Cultural specific choices should be included in to palliative care pathways.
- Even though a lot of people don’t want to talk about end of life care, everyone should be given the opportunity of access.
- Need to target people from lower socio economic backgrounds.
- Some very important issues raised about diversity of communities, and the importance of considering cultural differences in the provision of service.
- Very productive meeting. I would like to see the whole experience normalised. Keep the conversation going!
- Thanks to Catherine for chairing the meeting, learned a lot from everyone who got involved in the discussion.
- Very positive and encouraging meeting. Emily offered to attend community events and gave permission for her e-mail to be shared.
- Suggested contact housing associations/Social housing landlords and writing an information piece about end of life care.
- Keep the conversation going! Reach out to culturally specific groups.
- Westminster has resident newsletter that goes out to all residents, as does other Boroughs.
- Don’t over complicate ways of engagement, keep it simple and accessible!