Easing the End – St Barnabas House

St Barnabas House, which along with Chestnut Tree House, comes under the auspices of St Barnabas Hospices (Sussex) Ltd, provides specialist palliative care to adults in the Worthing, Adur, Arun and Henfield areas through a range of services, including in-patient care, day hospice and community care. Its honorary president since March 2016, is 29-year-old Henry Miles Fitzalan-Howard, Earl of Arundel, who succeeds the late Lady Sarah Clutton. He said at the time: “I am honoured to be the charity’s President and I take the responsibilities of the role very seriously and pledge to help this wonderful local charity to the best of my ability.”

Hugh Lowson, the Chief Executive and former Company Secretary of a large healthcare charity specialising in the care of the mentally frail at 20 residential sites across the UK, was ”absolutely delighted” that St. Barnabas was rated “Outstanding” by the Care Quality Commission (CQC) in the report published in May 2016, following an unannounced inspection. He said: “It provides tangible evidence of the exceptionally high quality of care and support that our staff and volunteers provide, and I am so grateful to all concerned. It was very much a team effort. Also I am pleased with the result for our community as it helps to show that their wonderful support has enabled us to achieve the very best care possible. We pride ourselves on our high standards and, as such, I would sincerely hope that we continue to receive Outstanding ratings in future CQC reports. This certainly has set the bar very high but we owe it to our community to continue to provide care and support of the highest levels.”

Services are provided free-of-charge, and the current annual cost of providing them is nearly £6 million per year. Only 21% of these costs is met by the NHS, which seems lower than thefor NHS funding. Is there a drive to attract more NHS funding, or would the hospice prefer to have sufficient private funding? Mr Lowson explained that, due to the present funding climate, the Trust needs to balance income streams from both sources: “Whilst there is no magic formula for this, it is apparent that the local Clinical Commissioning Group is unable to increase the level of funding for St Barnabas House for the foreseeable future. Our biggest issue with this lies in the fact that more people require end-of-life care support now, and this will continually increase up to around 2030. Whilst an 18% increase is forecast nationally, we know this will be higher in our particular locality owing to the above average number of people already over 65, 75 and 85.”

I wondered what the take up of the current service was and whether there tended to be a waiting list, or if a bed could usually be found for a needy patient. “Since moving to the new St Barnabas House hospice 5 years ago we have experienced a 70% increase in referrals,” Mr Lowson explained, adding: “This has resulted in more demand for the beds in our in-patient unit, despite the fact that we [had] increased the number of beds in the new [premises]. Admissions are based on need. On some occasions we have had more patients on the waiting list then we have available, [which] is why we have invested in new services in the community. If we can provide more care at home then it will alleviate demand on in-patient services.” fact, Mr. Lowson noted, changing preferences had seen St Barnabas focus considerable resources over the last 5 years on supporting people in their own homes, the preferred choice for 70% of people. He adds: “This has required development of different ways of working with new collaborative arrangements and more joined-up working with external bodies. Moving away from the traditional hospice bed-based model of care, it is essential that hospices keep pace with changing expectations and preferences of the communities we serve. To this end, St Barnabas established a Hospice at Home service 4 years ago, which has already delivered over 27,000 hours of care to people in their own homes.”

Dr. Katherine Sleeman, a clinician and academic at the Cicely Saunders Institute, King’s College London, recently wrote a blog for the European Association of Palliative Care entitled “The changing characteristics of people dying in hospices in” in which she noted that whereas people dying in 1992 had been slightly more likely to die in a hospice if they lived in a richer area, the gap between rich and poor had actually increased. “In 2012, 5.3% of people living in the most deprived areas died in hospices, compared to 7.1% of people living in the least deprived areas.” I asked Mr. Lowson how patients in his catchment access the services of St. Barnabas. He said referrals are generally made by patients’ GPs or hospital consultants, although he explained that St. Barnabas House also welcomes direct approaches from relatives or patients themselves. He added: “However, in order to work consistently and collaboratively with the wider health care teams, we advocate that they are referred through their own GP. This serves a number of benefits, primarily communication and joint on-going ownership of the individual’s care.”

The study mentioned by Dr. Sleeman also found that the majority of people who died in hospices had cancer as the underlying cause of death, as many as 94.8%, although the likelihood of non-cancer conditions has increased slightly over time. It was interesting to note that St. Barnabas has recently decidedout to more people who need-cancer related care services. What prompted this, I asked Mr. Lowson, who responded: “Whilst we are extremely proud of what we have achieved in the last 43 years, we recognise there is increasing disparity with the level and type of end-of-life care that certain groups have access to.we support around 80% of local people who are dying from cancer, we only reach approximately 10% and 6% of people who are dying from heart/circulatory and organ failure respectively. In order to care for people based on need and not diagnosis, we recognise that we must do more for significant groups of people that have not historically been supported by hospice providers. These are our hard-to-reach groups, our unmet need, our minority groups. Hence we are taking active steps to reach more people, irrespective of underlying disease. All people matter, all deaths matter too.”

A new nurse-led call centre was launched in October. A number of influencing factors shaped this, explained Mr. Lowson, including dissatisfaction with the status quo, recognition that services could work better together, gaps within the overall service and complaints around delayed response times during certain times of the week. He continued: “Many benefits were envisaged through the development of a single point of access, whereby there is one point to co-ordinate all local resources, one to provide a consistent approach to patients, relatives and other healthcare professionals, one to take details and one to take action. We are aware of similar models in other parts of the country and are looking to harness local end-of-life care service providers to realise [this] ambition.”

At the time of writing, St Barnabas was about to embark on a project whereby children would be brought into the Day Hospice arts room to engage with patients undertaking one of the various arts sessions on offer, to help improve the way hospices are seen by the general public.

St Barnabas House and
Chestnut Tree House
Titnore Lane
West Sussex
BN12 6NZ

Tel: 01903 706319


Contact your MP or Councillor

Read Sussex Local Online

Our Podcasts

West Sussex


East Sussex