St Wilfrid’s Hospice offers specialist palliative care and advice for people with complex needs, working closely with other healthcare professionals providing care in these areas and offering specialist care and advice for those with complex needs.
Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. (World Health Organisation definition, 2002)
Referrals for specialist palliative care are accepted for patients who
- have active, progressive, advanced disease of any diagnosis with a probable prognosis of less than 12 months
- have a complex level of need exceeding the skills and/or capacity of the current caring team and
- are over 18 years of age
Some patients with advanced disease but a prognosis exceeding 12 months may have specialist palliative care needs earlier in their illness and may be accepted for care if criteria 2 and 3 are met. The care this group of patients receive may be termed supportive care. Such patients will be discharged when the issue leading to the referral has been addressed.
Complex level of specialist palliative care need means exceeding the skills, facilities etc. of an appropriately resourced primary health care team (including community matron or disease-specific nurse specialist), hospital ward or residential/nursing care home. Complex needs can be patient, carer or health care team centred and the help required may be intermittent or continuous depending on the level of need and rate of disease progression.
Areas of expertise Specialist palliative care teams offer some or all of the following:
- hospital specialist palliative care nurses, doctors & other professionals
- hospice in-patient care
- day hospice
- palliative care community clinical nurse specialists (CNSs)
- bereavement care
Teams are able to work with patients, carers and professionals to address problems in one or more of the following areas:
- multiple, complex or refractory physical symptoms
- complex end of life care
- difficult social, psychological and spiritual issues
- complex family and carer needs requiring specialist support
- discharge planning when the situation is complex and no discharge co-ordination is available
- bereavement support to families and carers of former patients
These patients are defined as having specialist palliative care needs. Patients whose sole need is for basic medical and nursing care do not meet the referral criteria. If a patient does not have specialist palliative care needs they will not be taken on for follow-up.
Sometimes patients with complex needs, particularly those without a known limited prognosis, are more appropriately managed by other healthcare teams, particularly the chronic pain service.
When to refer?
The appropriate time for a referral depends on many factors including the patient, the disease and the situation. These circumstances are so varied that it is hard to encompass them simply – but basically refer a patient when they meet the referral criteria above. A member of the Hospice clinical team is always willing to discuss a specific case on the telephone before a referral is made.
What is, and what is not, the role of specialist palliative care?
The Hospice’s specialist role is to support generalist palliative care provided by an appropriately resourced primary care team or hospital ward, and not to replace such care.
The catchment population is made up of the patients of general practitioners based in the Sussex coastal plain from Emsworth to Arundel, encompassing Chichester and Bognor, and Hampshire patients from the Emsworth GP practice. Occasionally patients who are not in the catchment population will be accepted for care at the Hospice if their acute care takes place at St Richard’s Hospital or their family live in the catchment population.
Patients from north of The Downs Patients with GPs in Midhurst, Petworth, Pulborough, Billingshurst and Loxwood may be offered admission or day care following consultation with, and agreement from, the Midhurst Macmillan Team.
- Referrals are accepted from general practitioners, consultants, clinical nurse specialists, community matrons and by clinical staff acting on their behalf and with their knowledge. Ideally the patient’s GP should be advised of the referral.
- Referrals are be accepted from patients or families directly
- The Hospice referral form is available at the bottom of this page
- Referrals can be made by completing a referral form and faxing it to the clinical secretaries on 01243 538171.
- sending a letter, with full details as per the referral form, which can be faxed as above, or posted to St Wilfrid’s Hospice, Grosvenor Road, Chichester PO19 8FP
- telephoning the clinical secretaries on 01243 755813. The referral form will be completed by the secretary during the phone call.
- It is important that any electronic referrals are sent via our secure email address email@example.com and not via any stwh.co.uk email address.
- It is imperative that patients are told a referral to St Wilfrid’s Hospice is being made; however it is not always necessary for patients to know the diagnosis or prognosis - although it is helpful.
- When discussing a potential referral with patients it may be useful to consider with the patient the particular needs for symptom control and palliative care at that time. It is important to explain that a referral does not necessarily imply immediate admission as this may help to allay some anxieties and fears.
- The CNS team is available Monday to Friday from 9am to 5pm, and one member of the team is on duty 9am to 5pm at weekends and Bank Holidays.
- The Hospice At Home team is able to support patients at home and is available 8.00am to 9.30pm every day. One health care assistant is available to support a single patient each night.
- Although some admissions are received at weekends, we are not able to take them out of hours. Appropriate emergency out of hours admissions are rare as increasing amounts of community support are put in place as a patient’s condition deteriorates - with the aim of supporting the patient and family at home. Patients with new acute problems, such as new haematemesis, should go to hospital.
Echo (end of life care hub for Coastal West Sussex) is telephone service which offers to support to patients, carers and health care professionals. Once registered, a patient can access support and advice 24 hours a day, 7 days a week.
Patients with illnesses other than cancer
St Wilfrid’s Hospice accepts referrals of patients with any diagnosis.
Patients eligible for admission to the Inpatient Ward are those with
- multiple, complex or refractory physical symptoms requiring frequent medical review and/or intensive nursing care.
- complex end of life care needing admission to a specialist unit.
- difficult social, psychological and spiritual issues which may benefit from assessment and support in a specialist palliative care unit.
- a requirement for convalescence, symptom control or complex discharge planning after a period of acute hospital care.
The facility of admission to St Wilfrid’s Hospice Inpatient Ward is additional and complementary to the care provided by the NHS and is not intended to be instead of NHS provision.
Many patients would choose to die at home, given adequate support – indeed enabling more people to die at home is the focus of the Department of Health’s End Of Life Care Strategy. This must always be taken into account when considering an admission request to St Wilfrid’s Hospice. The additional support required may be minimal and is available if the appropriate referrals are made.
When resources allow a pre-planned admission may be made to give a patient and/or family a break from care at home.
Patients are not accepted for in-patient hospice care on a long term basis. However some patients who have ongoing specialist palliative care needs may require an extended admission.
There may be occasions when it is more appropriate to admit a patient directly to a nursing home from home rather than admitting them to the Hospice first.
Requests for admission are prioritised according to need by our multi-disciplinary team.
If a person’s illness remains stable with no specialist palliative care needs they will be discharged from follow-up by all parts of the hospice team completely.
Around 10% of patients on the active case load are discharged in any year. Re-referral is welcomed if the patient subsequently develops specialist palliative care needs.
Patients will be considered for discharge if
- there has been resolution of multiple, complex or refractory physical symptoms.
- the disease becomes stable and is no longer progressing quickly.
- there is no longer a need for specialist, complex end of life care.
- there are no longer needs for specialist palliative care follow-up and/or the patients on-going needs are more appropriately met by other health and social care agencies.
- the patient’s difficult social, psychological or spiritual issues have been addressed.
- the family and carer needs requiring specialist support have been addressed.
- the patient requests discharge or is reluctant to allow effective support, e.g. restricting access for assessment.
A decision to discharge a patient will be made following multi-professional discussion to ensure that the issues above have been considered. The discharge will be organised in a planned way.
Further links to palliative care clinical guidelines
- Leadership Alliance for the Care of Dying People
- National End of Life Care Intelligence Network
- The Palliative Care Handbook 2010 – advice on clinical management
- Opioid Conversion Ratios 2012
- Pharmacy Information 2014
- Ambitions for Palliative and End of Life Care
- End of Life Care Strategy: promoting high quality care for adults at the end of their life