According to the family of one Merton patient, “I wouldn’t know what I would have done without [the end of life care team], they were marvellous; supportive and understanding, very caring and compassionate. My mum died peacefully, and I owe it all to them.”
Some people call Merton’s end of life care nurses, “angels”. To others they are like, “a ball of fire”- describing a service, which is both supremely empathetic and ready to jump into action, enabling people who want to die at home to have their wishes respected.
They are literally entering into a crisis, supporting the family at a very, very painful time and just easing that situation.”
Clinical business unit manager and borough lead, Fleur Beeson manages the service, which is provided by Central London Community Healthcare NHS Trust (CLCH). She said “The language people use about our specialist nurses is markedly different. I think it’s because they are literally entering into a crisis, supporting the family at a very, very painful time and just easing that situation, while being so unbelievably organised and on the ball.”
CLCH’s Merton end of life care service is rare. Most boroughs have a palliative care specialist, who advises community nurses. But, in Merton, there is a six-strong team, all with their own caseloads. The nurses are aligned to the borough’s primary care networks and assigned to different GP practices.
Kim Smith (pictured centre) is the borough’s lead nurse. She said: “I have an exceptionally dedicated and compassionate team, with lots of clinical expertise and excellent communication skills. We support each other and make it our job to build good relationships.”
Set up six years ago, the end of life service was expanded during the Covid-19 pandemic. With more people dying at home rather than in hospital, demand increased rapidly and has remained at a high level.
They work closely with other healthcare professionals including, physiotherapists, falls specialists and community nursing teams to help ensure people are referred for care at the right time.
We want to get in there early enough to support sensitive conversations, allowing informed choices and practical support so people’s wishes can be carried out.”
Says Fleur: “When someone has a terminal cancer diagnosis, end of life care is almost always available. However, people with long term conditions such as heart failure, respiratory disease, frailty or dementia are often not recognised as requiring end of life care. We want to get in there early enough to support sensitive conversations, allowing informed choices and practical support so people’s wishes can be carried out.”
People are referred to the service at different stages. For some, a visit from the nurses comes early, at the start of those important conversations about planning for the future. It’s also about practical advice and making sure people know to get back in touch when they need to.
Kim says, “As key workers we can be contacted directly by our patients or their families, providing reassurance and often resolving queries straightaway.”
One man, who has been caring for his wife with a terminal brain tumour long-term, explained. “The communication with them has been absolutely [great], very helpful. They tell us tricks and ways of dealing with things we wouldn’t know about. They are full of suggestions. I have never had any moments where we felt we weren’t central to the visits.”
According to Fleur, “At other times, we get referrals from hospitals because someone wants to go home to die. They may have only 24 hours to live. Then it’s all hands on deck getting a hospital bed, a syringe pump, overnight care, just doing everything to make sure that person can be safely and comfortably managed at home.”
Our specialist nurses are very experienced at having challenging conversations with family members and that’s borne out in the kind of feedback we get.”
Sometimes families find it hard to accept that a relative is receiving end of life care. Says Fleur, “Our specialist nurses are very experienced at having challenging conversations with family members and that’s borne out in the kind of feedback we get.”
According to Kim, the situation “will always be sad”. However, “If you are able to prepare people; let them know they are not alone; take time to really listen to them and talk about taboo subjects such as the dying process, this can liberate people from unspoken fears and anxieties, enabling informed choices to be made and life to be lived until the end.”
As the daughter of one patient puts it: “Until dad became ill, we never realised the team existed, but we are so glad it does! Without fail, every one of your nurses has treated dad and us with love and care. To know you were just a phone call away – even during the night – meant such a lot to us. We can’t thank you enough for all the love and care shown to us.”
If you think someone you care for could benefit from the service, contact your GP or community nursing team.