Sussex Health Equity Fellowship Spotlight: Championing health equity in hospice care

Lois Howell, Chief Executive of St Wilfrid’s Hospice in Bosham, took part in the 2024-25 Health Equity Fellowship programme, run by Health Innovation Kent Surrey Sussex and NHS Sussex. The Fellowship equipped a cohort of health and care professionals with the skills, confidence and support to tackle health inequalities head-on, and over nine months, Fellows from across the NHS, local authorities and the voluntary sector led projects that are making a difference in the region.

In this blog, Lois shares her experience of tackling health equity challenges in her organisation, from improving data collection practices to increasing understanding and awareness…

St Wilfrid’s Hospice is a charity providing specialist palliative and end-of-life care services, receiving over 1000 referrals each year.  We have a 14-bedded hospice, but most care is delivered in our patients’ homes.

We also provide support for patients’ families – everything from formal counselling to facilitated peer-support and regular telephone contacts/home visits.

Death, and the death of loved ones, are amongst the few truly universal experiences, affecting everyone, no matter who they are.

St Wilfrid’s vision is for all dying people and those close to them to have access to the care and support they need, and our mission is to provide high-quality specialist end-of-life care and bereavement support whenever and wherever they are needed.

It’s very important to St Wilfrid’s, and to me personally, that everyone feels that St Wilfrid’s has something to offer if they need specialist care and treatment at the end of their life. I have experience with the benefits of hospice care – both my father and brother were supported by hospices, and I know the difference that made to us as a family.  I would hate anyone to think that St Wilfrid’s isn’t ‘for’ them, or that they wouldn’t be welcome.

Supporting under-served groups

My motivation in applying for the Health Equity Fellowship was to develop a research-evidenced toolkit to help me explain hospice care to under-served parts of the community and discover why some groups were not engaging with St Wilfrid’s.

I was expecting to find misconceptions about hospices, doubts that St Wilfrid’s would accept non-traditional families, suspicions about lack of insight into different communities’ needs, expectations that an organisation named after a Christian saint would not respect other religions, and fears of feeling ‘othered’.  I thought such misunderstandings might prevent people from accepting referral to St Wilfrid’s, but I also worried they might be reasons for some clinicians not to make referrals for people they thought wouldn’t ‘fit in’ or be welcomed.

Identifying the challenges

However, my attempts to identify the under-served groups I wanted to engage with to develop the toolkit were hampered by a lack of data.  My research identified two key contributors to this:

1. The unhelpful setup of tools provided to St Wilfrid’s clinicians for the collection and use of patient data

In summary, on the patient administration system (PAS), which was used for data collection:

• Demographic data collection was optional
• The completeness of the data was not easily visible
• The collected data was not accessible without interrogation of the system

Provision of workforce demographic data was also voluntary, and quite patchy.

2. Limited organisational awareness of the importance of promoting equity of opportunity and outcome, rather than equality of offer and treatment

Employee training at St Wilfrid’s had for many years taken a traditional ‘equal opportunities’ / non-discrimination approach. Some people felt it was rude or intrusive to ask ‘personal’ questions, and unnecessary because both clinical care and line management should be provided on an equal basis – very much “I shouldn’t ask because I’ll treat everyone equally anyway”. This approach failed to acknowledge the importance of ensuring that care and treatment, and line management, are provided in ways which acknowledge and seek to meet individuals’ particular needs and backgrounds.

Taking action

As a result of these insights, the focus of my project pivoted and instead focused on taking the following steps to address these more fundamental issues:

• The PAS was revised to flag incomplete fields, enable multiple entries to reflect intersectionality, increase the range of options, and make captured data easily visible. Volunteers and employees were also encouraged to add their personal details to the HR system.
• Training was revised to promote equity of outcomes/experience, rather than simply avoiding discrimination. ‘Equal ops’ training was replaced by a session at induction on St Wilfrid’s approach to equity, diversity and inclusion (EDI), supplemented by contextualised awareness-raising activity.
• At the same time, other people in the organisation were taking steps to increase inclusivity:
  • Our Community Team introduced ‘The Dignity Question’ (What do I need to know about you as a person to provide you with the best possible care?) to help clinicians look beyond assumptions and bias. A poster about this project was exhibited at the 2025 Hospice UK national conference.
  • The Education Team also created courses on the impact of structural inequities, as exhibited on another poster

View both posters here

Looking ahead

I’m very grateful to have been a Health Equity Research Fellow – I was motivated throughout the programme to learn more, do more, understand more, and to see things from perspectives I would never have considered without the support of my fellow participants and the leaders and contributors.  I’m so thankful to have had the opportunity.

As a charity, St Wilfrid’s is committed to its Vision and Mission, but must also remain relevant to its community – St Wilfrid’s has to raise around 84% of the £10.5m it needs to run each year through donations and charity retail.  The Trustees have recently agreed to engage the services of an independent specialist to conduct an audit of St Wilfrid’s equity, diversity, and inclusion practice, and we’re looking forward to developing a plan to help continue our progress towards becoming a beacon of inclusivity.