Centre for Excellence Newsletter Anticipatory Medicine Edition

Working together

Dr Chris Williams, whose dual role at the University of Leicester and the Centre of Excellence illustrates the necessity for a collaborative working approach that is so important to the success of projects such as this.  “The amount of system buy-in we have had probably reflects the fact that people do recognise the need for change. We’ve had the Integrated Care Board (ICB), as the commissioning body, we’ve had primary care input from Derbyshire Health United (DHU), which runs the out of hours service across LLR, GP input, community pharmacy input as well as contribution from the Leicestershire Partnership Trust community nursing teams and Integrated Specialist Palliative Care Team, which works with LOROS’s palliative care consultants in the community.

The ‘change’ that Chris refers to is refreshingly simple – getting Anticipatory Medicines delivered to patients, ensuring their carers do not have to leave the people that they are caring for in the last days of their lives.

The proportion of people dying in their usual place of residence has increased from 35% in 2004 to 49% in 2021, which has led to pressure on community services, meaning the role of lay carers is becoming increasingly important.

“One of the barriers to keeping people at home in these sorts of situations, even when the person wants to be treated at home, is the availability of the medications that they need”, says Chris, referring to the difficulties faced by carers when it comes to collecting medication for their loved ones.  This can often result in hours away from the bedside and trips to multiple pharmacies.  Recent research conducted by the LOROS team found that 18% of those involved in the study reported difficulties in accessing the right medication at the right time.

Chris continues, “What we’re hoping to do – subject to the pilot being approved, is ensure that we’re able to respond swiftly to the patients’ needs at home, which can often change quickly and require immediate attention.  The new service would give our teams confidence that the medication they need to deliver the best possible care will be with the patient within three hours of being prescribed, which additionally reassures families and carers at an exceptionally difficult time. Any replenishment supply would also be handled through this service.”

A lay carer's view

Charles, a lay carer who has shared his story, stated how difficult it was to obtain the prescriptions.  “As a carer of someone suffering with a terminal illness at a relatively young age, I had a huge amount of plates to spin.  Obviously, my overriding priority was for my wife, but I was also worried about the impact that her illness was having on our teenage girls, who were both in the middle of exams at the time.    We tried to carry on with a ‘normal’ as life as we could but the stress was unbearable for us all.  Having to leave her, knowing we didn’t have a lot of time left, was awful.  The pharmacists were extremely helpful but I could be out of the house for at least two hours, driving to various chemists to see if they could fulfil the prescription, which is time I could have been spending at home.  In some ways I was lucky, I had a car, I had support from other family members – I can’t imagine how difficult that would have been had I had to take public transport, or was a sole carer, but there is still a huge degree of sadness that I had to spend time away when I really needed to be there”.

Giving this time back to families, although a key driver behind this project, isn’t the sole benefit. Chris adds, “There’s an awful lot of medicines wastage with Anticipatory Medicines, a lot of medication isn’t being used because people don’t need it, but if we start to rationalise the quantities of medication that are being prescribed we can generate a bit of a saving – there are also environmental benefits to that too.”

We intend to launch the pilot in April 2024 and will be evaluating three key areas:

• Our ability to be more responsive to patients’ needs at home

• Enabling a more efficient and confident community-based workforce

• Demonstrating savings as well as improvements in environmental impact

Becky took time out from her teaching schedule to discuss the Talking About Dying course.  With 25 years’ experience in specialist palliative and end of life care within Leicester, Leicestershire and Rutland, Becky has a great perspective on the value of good communications skills, particularly when it comes to conversations around Anticipatory Medicine.  

“Two years ago, when I started here, there was a lot of talk about ‘Just in Case’ medicines and I picked up from a meeting between our Research and Education departments that we needed to translate our research teams’ findings into practice.”  What followed was a discussion between Kerry Blankley, Lead Clinical Educator and Sharon Densham, Practice Development Practitioner, to formulate a two-week window where LOROS nurses and other healthcare professionals could participate in short, but powerful sessions to discuss the research findings and consider the impact of this on their practice.   “We ran the sessions twice a day for two weeks and they were really well attended.” Whilst evaluating the sessions it became clear to Becky that there was a need for more training in this area. “We took the feedback from the sessions, as well as looking at the research in Anticipatory Medicine and designed the Talking About Dying course.”

Improving care

Talking About Dying focuses on improving the quality of care we provide at LOROS, whilst also reaching out to the wider workforce across LLR.

“The research suggested that people weren’t always aware that somebody was dying when they were given these medicines, therefore it’s a conversation that needs to be held compassionately and sensitively.  To be able to have those conversations you need the skills to do that”, Becky adds.

“We cover having open, honest conversations; we talk about using the right terminology, thinking about the language that we use.  It’s crucial that we talk about dying, and not ‘passed away’, ‘passed on’ and phrases like ‘lost them’ but most importantly, we talk about empathy.

What Becky does make clear is the significance of the health care professionals having a framework which they can refer to if asked a challenging question. “Structure is important as it helps us answer questions, but the training also helps staff to be less afraid of being asked those challenging questions.”

“It’s a privilege to teach people communication skills, I think there is an assumption that nurses or healthcare professionals come armed with these skills, when in reality staff often feel ill equipped when dealing with these conversations, like those around Anticipatory Medications.”

Self-care

Becky, drawing from her vast experience, also incorporates an element of self-care into the course.  It can be a tough part of a health care professionals’ job to break bad news. The course is managed in a sensitive way, with two facilitators to ensure attendees can voice any concerns and take time out if necessary.  The course also highlights the importance of long-term strategies.  “If these strategies aren’t in place that’s when you can see burnout”, says Becky.

Sheeran, who took the course in October, said: "To anyone considering this course, my advice is simple: just do it. Even if you think you know everything, I guarantee you'll acquire new skills that will enhance your career."

Talking about Dying is a Tier 2 course suitable for trained healthcare professionals. 

Ben’s recent high-impact National Institute Health Research funded doctoral research investigated community end-of-life anticipatory prescribing practice and patients’, family caregivers’ and healthcare professionals’ perspectives of this care.

He was awarded the Queen Elizabeth Award for Outstanding Service in 2022 and the European Association for Palliative Care Early Researcher Award 2023, in recognition of his outstanding contributions to community nursing and palliative care research. Ben co-conceived and leads the QNI Community Nursing Research Forum, an inclusive community of 650+ members across the UK.

Ben will discuss the current evidence and people’s experiences of having injectable medications available in their home to help manage distressing symptoms in the last days of life. He will share his experiences of first asking questions about this common practice as a community nurse through to becoming a leading clinical academic nurse, and some of the pitfalls and memorable parts of the journey. 

There is currently a waiting list for places.

Keep up to date with the latest research and education news by following us on X (formerly known as Twitter) @LOROSEducation.