Introduction

The children's hospice really does make each day count for the children and young people who need the very special and individual care and facilities offered at the hospice. Support and friendship for their families or those who normally care for them is also a vital part of the care and services offered at St Andrew's.

Admission/Attendance

Admission is open to anyone between birth and the age of 25 years with a progressive life threatening or life limiting illness.

Our catchment area covers the following health authorities:

• Hull & East Riding
• Lincolnshire

Children and young people who are residents outside of North East Lincolnshire Primary Care Trust are admitted subject to prior arrangement with our Medical Directors.

No charge is made and admission/attendance is irrespective of means.

Children and Young People are admitted to the In-patient Unit for:-

• Respite care to meet the needs of both patient and family/carer
• Symptom control
• Assessment and rehabilitation of children/adolescents expected to return home
• Terminal care in the final stage of illness, where the Hospice is considered the most appropriate place by the patient and/or family/carer

Children and Young people attend the Day Unit for:-

• Maintenance of support and contact for patients discharged from the In-Patient Unit
• Regular respite care for family/carers at home
• Monitoring and assessment of symptom control
• Ongoing social, emotional, practical, psychological support and friendship
• Attendance for complementary therapies

Home Liaison

Home liaison provides an outreach service whereby advice, support and counsel can embrace both patient and family/carer at home. Continuing care may thereby assist the patient to remain at home, and a sustaining link can also be provided both preceding and following discharge, or after bereavement. All visits are made at the General Practitioner's request, or with his/her permission, and are undertaken in liaison with the Primary Health Care Team/Hospital Palliative Care Team/Social Services.

Referrals

Referrals are made directly to St Andrew's Hospice. Enquiries are accepted from any source, but consent is sought from the child's/adolescents parents and General Practitioner prior to assessment or further contact.

Assessment

All children/young people are assessed as quickly as possible after referral - usually within 24 hours and no more than 48 hours phone contact will have been made to the family and an assessment arranged within 5 working days.

Assessments are undertaken by the Clinical Nurse Manager, or named Nurse. A Family Support Worker/Medical Director may also take part in the assessment prior to admission/attendance if appropriate.

Children/young people and their family/carers are invited to visit the Hospice prior to admission/attendance, and are provided with an information booklet/video.

Availability

Four beds are available, and can be booked in advance for respite care. The main times of need for respite care are weekends and school holidays therefore prioritisation of need is required.

Emergency admissions are only possible when beds are available, and are not ideal unless the patient is already known. In the interests of the patient, family and carers, early contact and liaison is the aim, rather than crisis response.

4 places, 7 days a week are available (28 places in total) in the Day Unit. Continuous assessment takes place to ensure flexibility of attendance to meet both the patients' and family/carers' needs.

Home Liaison availability is adequate for the current referral trend, and is undertaken by the Clinical Nurse Manager, or named Nurse.

Complementary therapies are undertaken by our own trained nurses and volunteers qualified in this area of care.

Quality of Care: First 24 Hours/First Attendance

Particular attention is placed on allaying the fears and worries of both patient and family/carer.

On admission, time is given to ease anxieties and build a relationship of trust, as well as undertaking careful assessment of symptoms and listening to the patients and families/carers understanding of the problems faced.

In addition the patient is invited to be accompanied by a family member/carer on their first attendance/admission to the In-Patient/Day Unit, thereby aiding moral support and helping to ease any fears their may have. Families may stay with the patient when they are admitted as family accommodation is available as well as sofa-beds within the child's/adolescents room.

In both units, this is the time when individual care plans are devised, in collaboration with both patient and/or family member/carer.

In-Patient Care

Care is planned for each individual child/adolescent, and reviewed regularly by the interdisciplinary team. At all stages of care, the child's wishes are paramount. The role of family and carers, their needs and the role they play in the care of the child/adolescent are also a very important part of the child's/adolescents care. The focus of care is on the quality of life and on the child/young person, rather than their illness.

Medical Care

As a community based service, patients are admitted under the care of their own General Practitioner. Our Medical Directors will accept children/adolescents as temporary residents on behalf of General Practitioners whose practices lie outside the North East Lincolnshire Primary Care Trust, or for those who wish to relinquish care to our specialist palliative care service. Medical cover is therefore available at all times. Out-of-hours care is provided by the GP Centre situated at the Diana Princess of Wales Hospital. Our Medical Directors have a responsibility for developing and sharing expertise in pain relief, and for providing guidance on symptom control. Appropriate courses are undertaken to maintain up-to-date knowledge. Currently, Dr Paul Purser has a Diploma in Palliative Medicine.

Patterns of Care

The model of nursing reflects a holistic approach, which characterises Hospice care, and is consistent with the best practice in nursing. All children/adolescents and their families have a named nurse.

Individual care plans assist staff to respond to the particular needs of both the child/adolescent and the family/carer.

Family/carers may assist in caring for the child/adolescent if they wish.

Visits are unrestricted (parental permission is gained for people to visit), except at the child's/adolescents request, and pets are welcome.

Parents may telephone at any time and may stay overnight.

Meals for relatives are provided at a nominal cost.

Care is geared to the child's/young person's wishes, and no set routine exists. Meals, for example are served whenever the child/adolescent wishes.

Children/young people are assisted to maintain their independence within the limitations of their illness. They may go out with staff/volunteer/relative assistance (a minibus is available).

The need for privacy is totally respected. The dignity of the child/young person is valued at all times.

Social Support

Emotional, psychological and social care is recognised as crucial for both the child/young person, family/carer, siblings and close others, both before and after the child's death. A Family Support Worker is available to all children/young people and families, and provides access to resources, provides practical advice and support and offers counselling both in the Hospice and at home.

The Chaplain provides both spiritual and psychological support, and clergy of all denominations are invited to visit children/adolescents whilst under our care.

A monthly carers support group run by the Family Support Worker and a Registered Sick Children's Nurse (RSN) is available for parents/carers of children and young people accessing hospice care.

Physiotherapy

In order to maximise independence, the services of a physiotherapist are available and treatments are adapted to the special needs of the child/young person.

Amenities

The Hospice offers relaxed, homely surroundings, where privacy and dignity are valued. Facilities include:-

• 4 single bedrooms, all of which have washing facilities, 2 are en suite
• radio/CD/TV/video facilities in each room
  
• sofa bed in two of the bedrooms
  
• telephone socket in each bedroom facilitating the use of a payphone for incoming and outgoing phone calls
  
• all rooms are individually designed to a high standard, with full regard to both comfort and safety
  
• radio call-bell system in all patient use rooms, therefore enabling the patient to summon assistance whenever needed
  
• considerable investment has been made to ensure that we have the necessary equipment to deliver a high standard of patient care and also ensure the safety of our nursing staff e.g. pressure relieving mattresses, specially adapted baths, ceiling hoists, syringe drivers, etc.
  
• laundry and ironing facilities for personal laundry requirements
• Video telephones
• a large free-of-charge car park
  
• family accommodation comprising of en suite bedrooms, lounge and kitchen, available free of charge for the use of parents/carers.
  
• filtered water is provided
  
• all rooms have patio doors with direct access to the garden
  
• large jacuzzi with multi-sensory equipment
  
• shop facility in reception selling snacks, confectionery and presents
  
• high standard of catering with maximum flexibility and care in the serving of meals and snacks: individual tastes and dietary requirements are met and all meals are cooked on the premises
  
• large indoor and outdoor play areas
• multi-sensory equipment
  
• multi-sensory room
  
• computer room linked to all other children's hospices in the country
  
• quiet room for use by relatives
  

Domiciliary Services

A Home Liaison service as previously described provides a coordinating link between Hospice and home following discharge or bereavement, if appropriate. Close communication is maintained with all others involved in the care of the patient.

Respite Care

Most care is respite in nature and the child/young person is booked in for regular care to enable both them and their family/carer a break. Families may also accompany the child/young person and enjoy a family break together.

Sibling Support

Structured days are held Day care is an integral part of the unit and provides a seamless service to the child/young person and family/carer.

Day care

Day care is available between the hours of 9am-4.30pm.

For patients siblings the aim of which is to provide a safe, fun environment for them to explore their feelings and gain support and friendship from others in the same situation.

The sensory studio

The sensory studio has enabled us to provide experiences which offer flexibility of usage to the wide range of children and adolescents using the facilities. The project has been successful in helping not only the sensory impaired but also the physically impaired. All the children have benefited from the facility, and we have certainly achieved the "Wow" factor. One child in particular who does not like any physical contact and is therefore very challenging to nurse has in the words of one of our therapists:

"Become a different child when we put her on the waterbed and turned on some of the lights. A look of contentment and interest was evident for the first time since she started using the hospice."

The Jacuzzi room 

The Jacuzzi room provides a sensory fun environment for both patients and their siblings. We have held lots of pool disco parties and the music, projection and range of 22 sensory programmes have really grabbed the imagination of everyone using the room.