Last autumn we launched our Palliative Care Hub, aiming to help a much broader range of people than just our own Hospice patients. Run by our Willen at Home team, the Hub is an advice and support line available 24 hours a day. Anyone who has a palliative diagnosis and is registered with a Milton Keynes GP can call, as well as carers, family members and healthcare professionals.
To celebrate the Hub’s first anniversary, we wanted to share with you some of the stories of who this service is helping.
Badria has worked at the Hospice for almost 20 years in different roles. As a Palliative Care Coordinator, she now answers Hub calls. “You never know who you’re going to get on the end of the phone,” says Badria.
Helping patients
“One lady who called had just been to the hospital. She was in her 90s and had been having some problems, so doctors were investigating. They told her she’d got bowel cancer and that it was palliative. Because of her age, they couldn’t do anything. So she came away from the hospital thinking, ‘What happens now?’ She didn’t have any close family nearby, so she telephoned the Hub.
“The first thing she said was, ‘I’ve been diagnosed with cancer. It’s palliative and I don’t know what to do.’ I went out and visited her, with a clinical nurse specialist. She was a lovely lady and was still able to care for herself. Basically, she wanted to know what the future held for her. So we talked through everything, in terms of how the Hospice could help in the future. We explained that she wasn’t quite ready for our support yet, because she didn’t have any symptoms. But that she could call the Hub anytime she needed. She couldn’t see very well, so I made a great big picture to stick on her fridge door with the phone number written on, and that just reassured her. I made her GP and the district nurses aware.
“She phoned us a couple of times with her worries or questions. Because she didn’t have family nearby, she ended up moving to a care home in another area, where she died. But with our support, she was able to stay at home longer than perhaps she otherwise would have. She was able to make an informed decision about her care and where she wanted to be, rather than just being in limbo. That’s exactly what the Hub was set up for.
Helping professionals
“We’re having quite a few calls from the ambulance service. Paramedics often phone up because they have a patient who doesn’t want to go into hospital. So we’ll send a member of the Willen at Home team out to visit. I think that’s another really important part of the Hub – helping avoid unnecessary hospital admissions.
“We had a lady phone in. Her mum lived elsewhere but had come for a visit. Mum had already been given a palliative diagnosis and had become very unwell during the visit. They called 999 but mum didn’t want to go to hospital. She didn’t have the right medication for the situation, so the paramedics phoned the Hub and asked if we could send someone out from Willen at Home. We got a clinical nurse specialist out to them that afternoon. What mum really needed was injectable medication, so we were able to give her that and make her more comfortable.
Planning ahead
“We’re doing quite a lot of advance care planning with people, particularly those patients who are at an earlier stage and are asking us, ‘What happens next?’ This helps the Willen at Home team, as they often go out to patients reaching the end of their life who haven’t made any plans, and it can be more difficult when time is short and people are more unwell.
Explaining palliative care
“We also provide psychological and emotional support. Patients can get that from their GP or district nurse too, but I feel that the Hub covers that little area that’s often missed. Some patients might not be poorly enough to need regular visits, but psychologically they can be struggling. A lot of people don’t know what a palliative diagnosis means. I’ve actually had people phone up who have been told by a doctor that they’re palliative but they don’t understand what it is. They ask me, ‘What do I do now? Am I dying?’
“Palliative and end-of-life care are two very different things, but people think they’re the same. When people are in shock after a diagnosis, they sometimes don’t hear what the doctor’s saying or it just doesn’t register with them. So we spend time explaining what a palliative diagnosis means.
