Cottage Hospice is the first of its kind in the UK; a home-from-home space which enables patients to be cared for by their loved ones, with the support of Hospice staff and volunteers. Hospice in the Weald developed Cottage Hospice in response to the DEMOS Dying for Change report, published in 2010.
Dying for Change paints a picture of a growing problem within the UK population; the preferred place of death for many people, versus the reality of their death. A large proportion of adults in the UK die in Hospital*. This is typically not their preference: prior to the pandemic, about 7% of people expressed a preference for dying in hospital but close to half of all deaths took place in hospitals**.
Hospitals are set up to care for, and indeed save the lives of people. But they are not well equipped for care at the end of life. Visiting hours are often strict and family members often
struggle to be present in larger groups or at night. The hospital setting presents a host of challenges for families facing the end of life.
In this context, 81% of patients at the end of life prefer to remain in their own homes***. This
setting is often painted as the best possible option for all involved; patients can remain in their own bed, surrounded by loved ones.
The reality of caring for a dying person can be isolating and distressing. Family members feel
unsupported, unsure of how best to perform some aspects of care and are often exhausted from supporting the patient 24 hours a day.
Cottage Hospice provides a solution to the difficulties that end of life at home, and in hospital, can bring. At Cottage Hospice, patients are cared for by their loved ones, with the support of Hospice staff and volunteers. Family caregivers are empowered to continue caring for their loved one, but have access to a helping pair of hands, support or advice whenever they may need it, 24/7.
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This support removes the isolation and uncertainty of providing care at home, without placing patients in the ‘medicalised’ hospital environment where family caregivers are disempowered; their caring role taken over by nurses. Since opening in December 2019, the Service has supported over 120 patients and families at the end of life
Kerry Norman, Head of Cottage Hospice, explains:
“Many people wish to be cared for at home, but the reality is often difficult; sometimes the space isn’t workable, or people start to feel that they don’t want to leave the memories of their illness in the family home. Cottage Hospice has all the comforts of home, with the support of the Hospice too.
We are there to help when needed. It’s 24/7 support, which contrasts with experiences some people have had when needing help at home. Sometimes people can wait a long time for advice from a GP or NHS 111, which can be really distressing.
At Cottage Hospice, all of the isolation and uncertainty of caring for a loved one at home is eased. If you are unsure, there is someone to ask. If you need to move your loved one, there is someone to help. Between the support from staff and volunteers, and the Informed Guide, you are never alone.
Cottage Hospice is a big step in ensuring we are giving people the choice they need today, and in years to come. It’s about dignified death in today’s world.”
Cottage Hospice is purpose-built, with 10 rooms. Each room has specially designed beds to enable caregivers to sleep next to their loved ones if they would like, whilst offering all of the safety of a hospital bed for the patient. Families move in to Cottage Hospice and stay with their loved one for the duration of their visit, using the room and en-suite bathroom, or an additional visiting room.
There are fully stocked kitchens available, and laundry facilities, to enable caregivers to continue as though they are at home. Visitors are welcome at any time of the day or night (at present, COVID testing measures are in place), and families are encouraged to bring in their own items from home: bed linen, photographs or other homely items, even pets.
Caring for a loved one at Cottage Hospice is an empowering experience. Not only are staff and
volunteers available to support caregivers, but the Informed Guide also provides a host of resources.
The Informed Guide was developed in conjunction with Cottage Hospice, specifically to support someone caring for their loved one at the end of life. There are printed materials and videos, available on devices in each patient room. Topics range from mouth care and hydration for patients at the end of life, to wellbeing and support for family caregivers.
To read more about Cottage Hospice: https://www.hospiceintheweald.org.uk/patient-family-and-carer-information/our-services/cottage-hospice
Further information about the Informed Guide will appear in a future edition of ehospice. Or click here: https://theinformedguide.org.uk/
* 45.6% of adults died in hospital in the UK in 2019 (ONS, Deaths registered in 2019)
**Marie Curie’s The Better End of Life Report 2021
*** ONS VOICES Survey, 2015
Further information on Hospice in the Weald:
Hospice in the Weald cares for people with terminal illnesses, and those important to them, in Kent and Sussex in the south of the UK. The Hospice is not part of the NHS and must raise over £7 million each year to meet the needs of its local community.
The Hospice cares for patients across the following services:
- The In-Patient Ward and Cottage Hospice providing in-patient care;
- Hospice Outreach Service providing care for patients in their own homes, care homes and links to local hospitals;
- The Counselling & Support Service which provides support for patients and relatives throughout their journey, including bereavement;
- Hospice Day Service, which provides a space for patients and those important to them to come to terms with their illness and feel empowered to set goals to work towards.
Further information from Marie Curie’s The Better End of Life Report 2021:
— Palliative and Hospice organisations in the UK are calling for an increase in care services that will ensure the best possible end of life care experience for patients. This must include
better support for family members and informal caregivers to allow for better balance in
caring responsibilities.
— During the peaks in the pandemic, individuals with needs that would have benefited from
hospice admission were choosing to be cared for and/or die at home.
— GPs and community nurses were having to manage more complex, end of life care health
needs than would normally be expected .
— In 20 years, 100,000 more people will be dying every year in the U.K. with complex health
conditions that require palliative and end of life care support.
Nick Farthing, Development & Income Generation Director
Hospice in the Weald, April 2021
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