Review of access to palliative care services - Lived experience

Overview

The Assembly’s Health Committee is holding an inquiry into access to palliative care services in Northern Ireland. 

The Committee is keen to hear from patients and their families on their experience of accessing palliative care services in Northern Ireland.

Why your views matter

In this short survey we will seek your views on accessing services in order to identify gaps in services and areas where services can be improved. The Committee will make recommendations that will seek to ensure sustainable funding and high-quality care for patients with life-limiting illnesses.

What is palliative care?

Palliative care is an approach aimed at improving the quality of life for patients, both adults and children, as well as their families who are dealing with life-threatening illnesses. It works to prevent and relieve suffering through the early identification, proper assessment, and treatment of pain and other issues, whether physical, emotional, psychosocial, or spiritual.

Palliative care goes beyond managing physical symptoms; palliative care takes a holistic, team-based approach to support both patients and their caregivers. This includes addressing practical concerns and offering bereavement counselling. It provides a support system to help patients live as fully and actively as possible until the end of life.

Palliative care is recognized as part of the human right to health and should be delivered through person-centred, integrated health services that respect the unique needs and preferences of each individual at the time(s) when such care and support is needed.

What may palliative care be required for?

Palliative care is needed for a wide variety of conditions. Most adults who require palliative care have chronic illnesses such as cardiovascular diseases (38.5%), cancer (34%) and chronic respiratory diseases (10.3%). However, many other conditions also call for palliative care, including kidney failure, chronic liver disease, multiple sclerosis, Parkinson's disease, rheumatoid arthritis, neurological disorders, dementia, congenital anomalies, severe mental illness, and drug-resistant tuberculosis.

Who provides Palliative care?

Palliative care is delivered by a whole healthcare team using a multidisciplinary approach to plan and provide care that is tailored to the unique needs of the individual and their family. This team may include General Practitioners (GPs), Public Health Nurses (PHNs), Registered General Nurses (RGNs), carers, hospital-based healthcare professionals, pharmacists, counsellors, and other allied health professionals.

Specialist Palliative Care teams become involved when more complex symptom management is needed. These teams can operate in hospitals or the community, with many community teams based in local hospices. Hospices often offer additional services such as symptom control admissions, outpatient care, and day-care services.

The level of palliative care varies depending on the stage of the illness, with more specialised care provided by specialist teams as the illness progresses.

Palliative care can be accessed in hospitals, in residential centres, nursing homes, hospices and people’s homes.