Challenging traditional views of hospice

You may have noticed at St Christopher’s that we’ve dropped the strapline, ‘more than just a hospice’ during our recent rebrand. A provocative strapline when first introduced, it both attracted criticism and challenged stereotypes of hospices.

Yet throughout that time we were also still St Christopher’s Hospice.  

But what do we mean when we say hospice? For those of us working within the sector, we know that we’re referencing the diverse range of services we deliver, every day, for people at the end of life, usually in the place they call home. It’s also the support we offer carers, family members, friends, loved ones, and people who are bereaved.

That’s what we do across South London at St Christopher’s and what hospices up and down the country are delivering in their communities.

But that’s not what the majority of people think of when they hear the word hospice.  

They don’t think of the breathlessness workshops, or gym sessions, manicures, home visits, hair cuts or welfare support.  

They’re thinking, that’s the place you go to die.  

This misperception is one of the key barriers to accessing our care, according to YouGov research we conducted to explore what our community thought of us. 

We heard from a public audience of 633 people living in our catchment area, who hadn’t accessed our services, and an existing audience of 267 people including staff, friends and family, volunteers, donors, and members of the public visiting our shops.  

Both audiences were made up of different ethnic backgrounds, age and gender and we also completed 15 in-depth interviews with people from ethnic minority backgrounds living in south east London who would choose not to access hospice care.

We quickly discovered there was a gap between our ambitious new strategy, launched early in 2023, and how we were perceived by people living right on our doorstep.

For example:

• 47% of those surveyed were unaware that people could be cared for in their own homes
• 57% of the general public in our community weren’t aware of who we were
• More than one in four people didn’t know we offer free care to people of any income background.

In the interviews, even more misconceptions around the phrase hospice care emerged.

One person said that being under hospice care would mean ending up in “an environment or ways you’re not used to … not your home, surrounded by strangers most of the time.”

Another told us it meant “Not [being] cared for by people you know, could be confused about where you are.”

“They would have a timetable for visiting probably,” added another. We don’t have visiting times and nor does any hospice I’ve ever visited.  

But what’s important to consider is, that to many of these people, the phrase ‘hospice care’ means coming to a physical place where you will die.

At the heart of our new strategy is tackling inequalities. The types of inequalities which stop people accessing our care. We’re working towards a world in which all dying people and those close to them have access to equitable care and support when and wherever they need it.  

Addressing these inequities means knowing our communities better. When I joined St Christopher’s in 2021, we broke the demographics of the five London boroughs that we serve down to primary care network level – gaining huge insight into who lived where and what health inequalities existed in each area.

One of the first ways we used this research was as part of our brand awareness campaign earlier this year in which we ran 100 out of home poster site adverts across South London, featuring real patients, carers and staff with quotes in both English and the next-most spoken language in each area. Each poster also featured a quote which challenged some of the misperceptions people held about hospices, whether that was care being provided at home or everyone being eligible for care and support.

This campaign helped us begin to change those views.  

But so does the work we do. 

For years now, at St Christopher’s and in the wider sector we’ve been calling for better and more informed conversations around death, dying and grief.  

We can’t just wait for this to magically happen.  

In Croydon, colleagues in our Community Action team have been working closely with the likes of MIND, Purley Masjid, Lives Not Knives, and Croydon BME Forum to provide people who often face multiple health inequalities with the skills and confidence to have important conversations about death, dying and loss.

The conversations that take place at these sessions and connections we’ve built are transforming views and opening minds.

Within our clinical team, we’re also dedicated to reaching the whole of our community. In 2023 we hired our first ever Learning Disabilities Clinical Nurse Specialist.  

Phoebe has been crucial in leading our charge to tackle inequalities and closing the gap that exists in providing palliative care for people with learning disabilities.  

In Bromley and Croydon, we continue to work closely with hostel staff to develop new and creative approaches to improve access to welfare, health and social care support for people who are homeless. By working to meet people where they are we have improved the support and experience for many people in these boroughs.

We’ve also focussed on reducing the health inequalities experienced by people in prison and, this year, have refreshed our relationship with Brixton prison. We believe that whoever you are and wherever you are, you deserve good care and support at the end of life. 

As Professor Chris Whitty himself said at the Hospice UK conference, an ageing population will significantly increase demand for palliative and end of life care.  

To address this reality, hospices must work side-by-side with care homes, equipping them to be the hospices of the future.

I have first hand experience of seeing a nursing care home make the journey from providing good palliative care, with around 75% of its residents dying in the care home, with support from its local hospice, to a place where it is providing outstanding palliative care, with over 95% of its residents dying in the care home, independent of the local hospice.  

I believe the main change needed in the hospice sector is an acknowledgement of the expertise of the best care homes and close partnership working with them to co-produce and co-deliver education, support and advice to local care homes open to making that same journey.  

We should be seeking to lay the foundations for hospices retreating from supporting care home residents in all but the most complex cases requiring our highly specialist palliative care, so that hospices can focus on expanding community services to those in their own homes and IPU.  

There are around 8000 care homes for older people and given the scale of the demographic challenge approaching the country I don’t believe that 220 hospices opening care home wings is the solution, although I totally understand why some are tempted to move in this direction. Later this year, on 1-2 October, St Christopher’s is planning to co-deliver a reflective two-day conference for both leaders in care homes and leaders in hospices together, partnering with Nightingale Hammerson – an outstanding care home provider in South London. If you’re interested in finding out more you can register your interest here.

All of these approaches, and more besides, will help society’s understanding of the word ‘hospice’ shift. Changing it from a place where you die to being an organisation which supports you to live well, until you die, whether that is at home, in a care home, or in a hospice.

Because we’re all so much more than just a building.

Helen Simmons joined St Christopher’s Hospice as Chief Executive in 2022 after eight years as CEO of Nightingale Hammerson, a care home education centre, and provider of outstanding nursing and dementia care.  

Helen originally qualified as a chartered accountant, and has had a successful career in the charity sector – holding directorships at Crisis, Multiple Sclerosis Society, Jewish Care and the Diocese of London, before joining Nightingale Hammerson in 2013. She is credited with launching a number of impactful and innovative projects focusing on care for older people, intergenerational work, as well as working closely with the NHS on winter pressure step down projects.  

Helen was an expert by experience on the Care England Board between 2013 and 2020, and held previous trusteeships with NCVO, CAF, CFG and other charities.