Thank you to Mrs Forde for sharing her experience of end-of-life care for her husband Mattias, which has led to significant improvement, and more compassionate care, for patients, families and carers who are end of life.

Mattias was bought into hospital after he suffered a stroke which left him needing end of life care at CHFT.

Mrs Forde chose to speak to Healthwatch Kirklees, who work with us to learn from people's experiences, about how she felt about the care and support she received at the time. Healthwatch Kirklees supported her to meet with Senior Nurse, Vicki Drummond, and Matron, Sarah Williams, to bravely share her experience.

She felt  that colleagues used medical terms which were not easy to understand and which made it difficult to know what was happening with her husband’s care. She often felt alone without the additional support of someone to spend time with her whilst she was at her husband's bedside.

Since hearing about her experience, Vicki and Sarah, were keen to share it, with her permission, with colleagues so that we could look at how we could make things better for our patients, families and carers in the future.

Nurse Consultant for Palliative and End of Life Care, Abbie Thompson, has been one of the colleagues at the centre of this work. Abbie said: “We are grateful to Mrs Forde for sharing her experience so that we can make sure we provide compassionate care to all families and carers. What she shared with us has helped us develop and change the information we give to people which is providing a more holistic approach.

“Just one example is how we now send out a bereavement card to those families and carers where a loved one is under end of life care with us. This gives information in a clear and easy to understand way about what to expect as many people haven’t been through it before, how our teams can give support, and the community support available too, such as the Marigold Café.”

Matron for Stroke Services, Sarah Williams, has also looked at where we can upskill all colleagues in supporting families and carers through end of life. Sarah said: “Since Mrs Forde shared her story with us, we have made so many little changes which are making a big difference in the support we give at end of life. Importantly, we routinely ask our patients, families and carers what matters to them most during the last days of life.

“We have also rolled out additional training for all colleagues, have two end of life champions in the team, and have been doing specific work to cut down on the medical jargon we use to make things easier to understand.

“We make sure we offer hot meals, drinks and companionship. All carers, patients and relatives are also now asked if they need any spiritual or faith support.”

Reflecting on sharing her experience, Mrs Forde said: “Speaking up can make a difference. People need to do that, if people don’t, nothing will change.

“I appreciate the hospital staff meeting with me, it means a lot to feel heard and understood.”

You can listen to her full experience, and hear more from Abbie and Sarah, on our digital story library on the intranet: Digital Story Library