There are many health and social care professionals who may work with you if you are receiving palliative care:

• Our service

There are two community teams in Leeds – the St. Gemma’s team covers the eastern half of the city and the Wheatfields team covers the western half. The teams consist of Community Clinical Nurse Specialists (CNSs), a Consultant in Palliative Medicine and other doctors. The CNSs are nurses who have often worked in the hospice or as District Nurses previously and have then gained further training and experience in Palliative Care. Clinical Nurse Specialists are available to discuss issues which may be having an impact on your life whether physical, emotional, spiritual or social. The CNSs have a good knowledge of what can often help, including medication to improve symptoms such as pain, sickness or breathlessness. They have time to discuss thoughts and feeling you may wish to share and give information which can often help you make choices. The team is here to support you and your family.

The CNSs work closely with the Consultant and other doctors and can request a medical out-patient appointment for you to attend the hospice or if you are not well enough to attend they can visit you at home. There is a large team of professionals who can be involved with your care if needed. This includes; social workers, complementary therapists, physiotherapists and occupational therapists. The community team can also refer you to our day services or to be admitted to one of the wards on the in-patient unit if appropriate and a bed is available.

The community team work closely with other professionals who may be involved with your care including GPs, District Nurses and hospital Consultants and nurses.

• Accessing our service

Your GP, District Nurse or Hospital Team can refer you to our service. They will inform us of your illness and any problems you are experiencing which we may be able to help with. A team member will contact you to make an initial appointment with you. At this first appointment we will discuss with you the best way we can support you until these issues are resolved or addressed as best we can. To do so we may need to visit or contact you by phone for a period of time. We will ensure you have contact with other services if required such as your GP or District Nurse. Once we agree issues are resolved or managed as best we can contact with our service will stop. However, if your needs change it can be accessed again if required through contact from yourself, a family member, doctor or nurse.

Most palliative care in the hospital is provided by the doctors, nurses and other health professionals in the ward teams, led by the consultant in charge of the patient’s care. For patients and families with more complex palliative care needs, the treating consultant or ward-based team can refer to the hospital Specialist Palliative Care Team who will work with them. Specialist palliative care is available to any patient within Leeds Teaching Hospitals Trust who has an advanced, progressive and life-threatening illness and a high level of need.

The Specialist Hospital Palliative Care Team is an advisory service and provides specialist assessment and advice on the management of a range of issues that may face patients and their relatives and carers. This may include:

• physical symptoms such as pain or vomiting
• talking through treatment choices
• coming to terms with difficult news
• help with talking to other family members
• practical advice on housing or benefits
• spiritual support
• planning for place of care and facilitating patient choice
• referring on to hospice or community palliative care services in Leeds and beyond

Visits are usually made to the ward during normal working hours by either a nurse or a doctor from the Specialist Palliative Care Team. The team operates during working hours Monday to Friday and out of hours and at weekends there is a consultant on call who can give advice to ward doctors over the telephone.

The team also delivers an extensive programme of education to many groups of staff in the hospital to raise the standards of palliative care for all who need it.

Staff members on the team include clinical nurse specialists, consultants, specialist registrars, a social worker and part-time pharmacist. We receive in excess of 1300 referrals per year across the 5 hospitals of the Trust and have no waiting list. Current figures show that 85% of patients referred have cancer as their main problem, but patients with any illness can be referred if they need specialist palliative care.

The palliative care discharge facilitator works between the acute hospital, hospices and community teams to help them to arrange timely and appropriate discharges for patients whose needs are changing quickly.  This helps patients to decide where they would like to be cared for and allows for the necessary services to be organised.

Patients may be  given the choice of going home with support from community teams, going to a nursing home of their choosing or being transferred to a hospice.  This service helps patients who are at the stage where their condition (any underlying diagnosis, not just cancer) may be changing rapidly.

Your GP is the key medical professional in the provision of palliative care for you at home.

• You should expect from your GP

• That planning of care with District Nurse will take place – so that extra help or equipment can be ordered as needed and that any possible problems can be anticipated and so minimised
• That you can have regular medical assessment of symptoms (such as pain, nausea, vomiting, breathlessness) to understand the cause, give treatment and advice about how to manage those symptoms and what to do if the problem does not settle.
• To have a discussion about your wishes about future care so that these can be recorded, even if that may be a difficult conversation
• That they are willing to ask for specialist help if needed
• That they work as part of the wider primary health care team so that you know who to contact if there are problems, particularly during holidays or weekends.
• That as part of that wider team working they notify the out of hours providers using a handover form so that the team you contact already have information about you
• If possible to use a tool for organising their team’s palliative care such as example the gold standards framework
• That they will not be able to provide an accurate prognosis about your condition
• That they keep themselves up to date about managing symptoms or have access to information to support them in making decisions about your care

Community nurses provide nursing care to patients in their own home. A significant part of their work involves caring for patients who have Palliative Care needs and who wish to be cared for at home (including care homes).District nursing teams and community matrons may be involved in delivering this care to patients and supporting their carers. The aim is to ensure that patients die in their preferred place of care with dignity and symptom control achieved.

• District Nursing

The District Nurse holds a post-registration specialist practitioner qualification in providing care in the home and is the leader of a skill mixed team who work together to provide care to patients.

The District Nurse will have overall responsibility for the management of Palliative Care patients but will work closely with Community Matrons who may have been involved with caring for patients with a long term condition e.g. respiratory or heart disease, for some time.

• Community Matrons

Community Matrons work predominantly with patients who have a long term condition to help them to manage their illness and reduce the number of times they may be admitted to hospital unnecessarily. Patients may have one or more long term condition e.g. diabetes and heart failure or respiratory disease. These conditions mean that often their needs become palliative and the community matron will work with the district nursing team to ensure all the needs of the patient and carer are met.

NHS Leeds Community Healthcare's Complex and Palliative Continuing Care Service (CAPCCS) is a citywide service designed to provide you with health, social and palliative care.

If you require this service you will be referred by your district nurse.  CAPCCS support your district nurse to care for you at home.

CAPCCS will provide you with care if:

• You have a life limiting illness and have palliative and end of life care needs, or
• You have on-going highly complex care needs and require a personalised package of care.

The overall aim of the CAPCCS team is:

• To help you to continue to be supported in your home when you have highly complex on-going continuing healthcare needs.
• To support District Nursing Teams across the city of Leeds in delivery of this care.
• To prevent you inappropriately being admitted to long term care when you have highly complex needs.
• To prevent you from being inappropriately admitted or re-admitted to hospital.

The CAPCCS team is available from 8am to 7pm, 7 days a week including weekends and bank holidays.