New initiative to transform the care experiences of people living with dementia and cancer

THIS month we're launching a pioneering project putting the experiences and views of people living with a dual diagnosis of cancer and dementia, and their family carers, front and centre. 

Their lived experiences and feedback will shape new information to support patients with dementia at the point of cancer diagnosis and inform new training for NHS staff nationally.

Known as Connected Care, it's hoped the project will help ensure better care experiences for people living both with dementia and cancer. 

People living across the North East who would be interested in taking part or finding out more are being asked to contact the team.

Kate Parkin, project lead for Equal Arts, said: “Ultimately this project is about helping develop dementia-friendly cancer care which empowers people to make informed choices and helps NHS staff to support patients’ journeys. This funding from Macmillan is an opportunity to value people’s experiences of cancer and dementia in the region and use these experiences to improve what can be difficult conversations for people living across the UK. 

“Currently there is an inconsistent approach to the conversations being had.  Health concerns can be diminished because there is too much focus on a person’s existing diagnosis. There can also be confusion relating to consent. By putting the experiences of the people most affected at the heart of the project, we hope to pave the way for open, honest and sensitive shared decision-making.” 

The Equal Arts team will be supported throughout the Connected Care project by St Oswald’s Hospice, who will bring expertise in compassionate conversations, bereavement support and palliative care research. 

Laura Barrett, Community Projects Lead for Bereavement at St Oswald’s Hospice, will attend workshops with patients and families to offer support to anyone who may find sharing their experiences difficult. 

She said: “We’re really pleased that Equal Arts invited us to collaborate on this project. Some people taking part may be reflecting on very emotional experiences, including the care of loved ones who have died, so it’s vital they feel supported during the workshops. 

Laura added: “We'll also share our experience of compassionate conversations to help shape the online training for NHS staff. The way a diagnosis is delivered, and the healthcare conversations that follow, have a lasting impact on patients and families. “This project gives people with lived experience the opportunity to shape how those conversations happen for others in the future. When communication is compassionate, honest and supportive, it can help people feel more involved in their care, build trust and support decisions at a very difficult time.” 

Dr Felicity Dewhurst, Consultant in Palliative Medicine at St Oswald’s Hospice and NIHR Advanced Fellow in Palliative Care Research, will also contribute learning from the DECIDE study, which explored end-of-life care experiences for people living with dementia. 

The funding for Connected Care has been awarded by Macmillan Cancer Support to help improve local cancer care and support services. It’s part of a £7.4 million investment from Macmillan into community organisations across the UK who want to have a lasting impact on UK cancer care. 

Heather McLean, Director of Communities & System Partnerships for Macmillan Cancer Support said:  

“Real change in cancer care starts with those who know the challenges they face the best, and that is communities themselves.  That is why every local project we are supporting has been shaped by the views of people living with cancer and their loved ones. We are so excited to be working with Equal Arts to address some of the gaps we know exist, to deliver lasting change in local cancer care.” 

Over two years a focus group of people from Tyne & Wear and Durham will take part in creative workshops with Equal Arts artist Nat Yates to explore and share their experiences. The panel will then shape and feedback on the resources and training for NHS staff. 

The groups will be made up of people living with a dementia and cancer diagnosis, their family carers and friends. 

THIS month we're launching a pioneering project putting the experiences and views of people living with a dual diagnosis of cancer and dementia, and their family carers, front and centre. 

Their lived experiences and feedback will shape new information to support patients with dementia at the point of cancer diagnosis and inform new training for NHS staff nationally.

Known as Connected Care, it's hoped the project will help ensure better care experiences for people living both with dementia and cancer. 

People living across the North East who would be interested in taking part or finding out more are being asked to contact the team.

Kate Parkin, project lead for Equal Arts, said: “Ultimately this project is about helping develop dementia-friendly cancer care which empowers people to make informed choices and helps NHS staff to support patients’ journeys. This funding from Macmillan is an opportunity to value people’s experiences of cancer and dementia in the region and use these experiences to improve what can be difficult conversations for people living across the UK. 

“Currently there is an inconsistent approach to the conversations being had.  Health concerns can be diminished because there is too much focus on a person’s existing diagnosis. There can also be confusion relating to consent. By putting the experiences of the people most affected at the heart of the project, we hope to pave the way for open, honest and sensitive shared decision-making.” 

The Equal Arts team will be supported throughout the Connected Care project by St Oswald’s Hospice, who will bring expertise in compassionate conversations, bereavement support and palliative care research. 

Laura Barrett, Community Projects Lead for Bereavement at St Oswald’s Hospice, will attend workshops with patients and families to offer support to anyone who may find sharing their experiences difficult. 

She said: “We’re really pleased that Equal Arts invited us to collaborate on this project. Some people taking part may be reflecting on very emotional experiences, including the care of loved ones who have died, so it’s vital they feel supported during the workshops. 

Laura added: “We'll also share our experience of compassionate conversations to help shape the online training for NHS staff. The way a diagnosis is delivered, and the healthcare conversations that follow, have a lasting impact on patients and families. “This project gives people with lived experience the opportunity to shape how those conversations happen for others in the future. When communication is compassionate, honest and supportive, it can help people feel more involved in their care, build trust and support decisions at a very difficult time.” 

Dr Felicity Dewhurst, Consultant in Palliative Medicine at St Oswald’s Hospice and NIHR Advanced Fellow in Palliative Care Research, will also contribute learning from the DECIDE study, which explored end-of-life care experiences for people living with dementia. 

The funding for Connected Care has been awarded by Macmillan Cancer Support to help improve local cancer care and support services. It’s part of a £7.4 million investment from Macmillan into community organisations across the UK who want to have a lasting impact on UK cancer care. 

Heather McLean, Director of Communities & System Partnerships for Macmillan Cancer Support said:  

“Real change in cancer care starts with those who know the challenges they face the best, and that is communities themselves.  That is why every local project we are supporting has been shaped by the views of people living with cancer and their loved ones. We are so excited to be working with Equal Arts to address some of the gaps we know exist, to deliver lasting change in local cancer care.” 

Over two years a focus group of people from Tyne & Wear and Durham will take part in creative workshops with Equal Arts artist Nat Yates to explore and share their experiences. The panel will then shape and feedback on the resources and training for NHS staff. 

The groups will be made up of people living with a dementia and cancer diagnosis, their family carers and friends.