Hospice Care Week (7th – 13th October) is a chance to champion hospice care nationwide and shine a spotlight on the incredible work that is being done to make sure everyone can benefit from the very best palliative and end of life care.

Many of Hospice Isle of Man’s services are offered outside of the Hospice building (in a person’s own home, a nursing or care home, or in a hospital setting). These community-based services ensure that patients can receive specialised support in their preferred environment, fostering a sense of peace and well-being.

When a patient is referred for palliative care, the palliative care Clinical Nurse Specialist (CNS) is the first person they meet. Their role is to oversee patient care by offering specialist expert palliative advice and support around pain and symptom management (including sickness, constipation, reduced appetite and tiredness). The team works closely with GP’s, hospital consultants and other health care professionals within the community, enabling the patient to have a good quality of life whilst remaining at home.

The team can see a patient at Hospice but preferably like to do a home visit. This provides an opportunity for an in-depth holistic review of each patient. It might be that the patient needs referral to other services within Hospice but also through the wellbeing partnership team. There they can receive support from disciplines such as occupational therapy, complementary therapy, physiotherapy, dieticians and psychological support. They will also assess the requirement for specialist equipment such as a hospital bed.

One of the major benefits to patients is a CNS’s ability to provide personalised and compassionate care given the time they can dedicate to each visit.

Knowing what people want at their end of life is an important part of palliative and end of life care. The CNS team helps to instigate advanced care planning – looking at what the person’s wishes and needs are. Central to Hospice’s ethos is empowering and supporting patient choice, and that includes a focus on their preferred place of care and death. Many people do not want to be admitted into hospital at the end of their life, and choose either to remain at home or be admitted into the In-patient Unitat Hospice.

When a patient enters the terminal phase of care, the last week or so of life, the CNS team will refer to the Hospice at Home team. The Hospice at Home team are a 24/7 on-call service offering practical support and advice to those who wish to die at home.This can take many forms, including liaising with district nurses and GP’s, providing specialist education and training to the carer or staff within a nursing or care home (such as how to set up a syringe pump), and getting medication from the pharmacy to ensure relatives or carers don’t have to leave the home. The team will offer visits to help with personal care as well as offering symptom management services and support any time of the day or night. The Hospice at Home service is vital for our island’s residents, as they are the only nursing care service other than privately funded carers available overnight.

Our Hospice at Home service is part of our integrated care team with members having experience working in both the Inpatient Unit and community settings. This allows for continuity of care as many patients are already known to the team as they move from one service area to the other. We find this connection between staff and patient makes a huge difference to the experience for both the patient and their loved ones.

We would love to expand this service with additional funding. Although we are a 24hour service, we cannot provide extended care to one individual. Sometimes the team can travel up to 200 plus miles a day. It would be great, if somebody wanted a break in the evening, or to go out shopping or go for a coffee with a friend that we would have a team of nurses that could go out and spend a couple of hours, or the night with the patient so that the carer could have some respite.

Symptom management is not solely focused on medication – our lymphoedema clinic, therapy services and creative wellbeing sessions play an integral part in providing comfort and relief. The CNS team can refer patients to these services, all of which can be offered out in the community if a patient is too unwell to travelto Hospice.

The Hospice Day Unit is a facility that provides much needed support in the form of symptom management treatments, psychological services, social and interactive activities, and respite care. Although this is based in the Hospice facility, the team is able to offer a limited community outreach service when the person becomes too poorly to attend.

‘Your Hospice, Your Way’ drop-in sessions aim to bring Hospice influenced care to the wider community. The sessions are available to anyone with life-limiting conditions (whether or not they are under Hospice care) and their carers and loved ones. These sessions provide opportunities to get advice on topics such as finances, a chance to receive complementary therapies, activity sessions to help with fatigue and breathlessness, as well as offering bereavement support and group support. This is available at Hospice Isle of Man and Thie Rosien in Port Erin.

We find that in some cases, when a patient is referred for palliative care, it is met with confusion or hesitation due to a lack of understanding. We need to create a new narrative around Hospice Care, that when a hospice professional contacts you, it’s not that you are imminently dying. This barrier around receiving Hospice Care can have a huge [negative] impact on a person’s quality of life during their palliative phase. Our community-based services offer a vital lifeline, providing comfort and increased well-being in the familiar setting of a patient’s choice.