1

This Carer Resource booklet will provide you with general information

on the role of the carer as well as information on available services and

resources which may assist in your carer role.

For more information on any of the issues highlighted in this resource,

please request to speak to the ward social worker or contact the

Social Work department on 9828 6716.

A Carer Focused Initiative by Oncology/ Haematology Ward of Liverpool Hospital

Carer Resource Booklet adapted from Liverpool Hospital Social Work Carers Project (2009)

2

Do you look after someone for 2 hours or more a day?

Do you help them with things like:

Shopping?

Housework?

Cooking?

Personal care?

Transport ?

If you answered YESYESYESYES to any of these questions,

………then you are a carer,

and may benefit from this CARER RESOURCE PACK.

Does this sound like you?

How many of these questions would you answer YES to?

♦ My sleep is disturbed

♦ I find it difficult to make time for myself

♦ I often feel overwhelmed

♦ I find it difficult to do everything I need to do

♦ I am feeling physically exhausted

♦ I am feeling emotionally exhausted

♦ My relationships with other people have changed

♦ I am finding it difficult to balance my finances

Are you wondering how things are going to be when your loved one is discharged from hospital?

♦ Are you feeling anxious about how you will manage?

♦ Are you wondering where to find relevant information?

♦ Are you feeling tired or overwhelmed?

If you answered YES (true) to one or more of these statements, you

may find it helpful to discuss these issues with someone.

Speak with a social worker, your doctor or a counsellor who will

listen to your concerns and assist you to find solutions that are suitable

for you and your situation.

Additional resources and support services are listed at the end of

this booklet.

3

Does this sound like you?

How many of these questions would you answer YES to?

♦ My sleep is disturbed

♦ I find it difficult to make time for myself

♦ I often feel overwhelmed

♦ I find it difficult to do everything I need to do

♦ I am feeling physically exhausted

♦ I am feeling emotionally exhausted

♦ My relationships with other people have changed

♦ I am finding it difficult to balance my finances

Are you wondering how things are going to be when your loved one is discharged from hospital?

♦ Are you feeling anxious about how you will manage?

♦ Are you wondering where to find relevant information?

♦ Are you feeling tired or overwhelmed?

If you answered YES (true) to one or more of these statements, you

may find it helpful to discuss these issues with someone.

Speak with a social worker, your doctor or a counsellor who will

listen to your concerns and assist you to find solutions that are suitable

for you and your situation.

Additional resources and support services are listed at the end of

this booklet.

4

What do Carers do?

A carer is a person who provides ongoing support for someone with a disability,

mental illness, chronic illness or who are frail.

Carers may be a family member or a friend of any age.

The caring role may be full-time or part-time.

Carers may take on the role suddenly or gradually over time.

This booklet is designed to assist carers by providing referral and general

information to assist in the caring role, particularly whilst a loved one is in hospital.

The caring role

For some the caring role may have come about unexpectedly after a sudden

trauma or illness of a loved one, for others the role may have developed over

time. The caring role may lead to change and individual responses can be

varied.

At times you may experience:

Isolation Guilt Anger

Sadness Fear Feeling overwhelmed

Anxiety Clarity

Sense of purpose Closeness

These feelings are common and may come and go from time to time.

Sharing your feelings with someone you trust or with a professional can be

helpful.

The Importance of Self Care

The role of the carer is demanding, it requires significant time, energy and

resources. In order to sustain such demands, it is essential that carers take good

care of themselves.

Some self care activities include:

Hobbies Make time to do the things you enjoy even if only for 15 minutes a day

Exercise makes you feel more energetic and will help maintain physical function.

Take a walk with a friend.

Relax Chill out, take a bath, sit outside or listen to music.

Sleep Ensure you get enough sleep.

Socialise Maintain social contact. It is easy to become isolated when you are a

carer. Make the time to call a friend, arrange a day out, or consider respite.

Listen to your feelings. Learn to recognise your signs of stress.

If you do not care for yourself, you may not have the capacity to care effectively and

continuously for the person you are caring for.

Tips for carers…

Take time out for yourself

Don’t forget your own health needs

Eat well

Share the care

Consider respite

Be kind to yourself

Don’t wait to ask for help

Talk with a trusted friend

Remember support is available...

Ask for help and share the care!

5

The Importance of Self Care

The role of the carer is demanding, it requires significant time, energy and

resources. In order to sustain such demands, it is essential that carers take good

care of themselves.

Some self care activities include:

Hobbies Make time to do the things you enjoy even if only for 15 minutes a day

Exercise makes you feel more energetic and will help maintain physical function.

Take a walk with a friend.

Relax Chill out, take a bath, sit outside or listen to music.

Sleep Ensure you get enough sleep.

Socialise Maintain social contact. It is easy to become isolated when you are a

carer. Make the time to call a friend, arrange a day out, or consider respite.

Listen to your feelings. Learn to recognise your signs of stress.

If you do not care for yourself, you may not have the capacity to care effectively and

continuously for the person you are caring for.

Tips for carers…

Take time out for yourself

Don’t forget your own health needs

Eat well

Share the care

Consider respite

Be kind to yourself

Don’t wait to ask for help

Talk with a trusted friend

Remember support is available...

Ask for help and share the care!

6

Carer Advocacy

Advocacy means speaking on behalf of someone about their needs.

Other than the patient, carers are often the best people to represent their loved one,

particularly when in hospital.

Identification of your role as a carer can assist in ensuring that history and

information relevant to patient care and your needs be considered in management

and future planning.

Below are some tips on how to be heard:

• When visiting speak to the Nurse involved in the care your loved one

• Direct any concerns or difficult questions to the Nurse Unit Manager

of the ward

• If you wish to contact a Doctor or any member of the allied health team,

ask the Nurse to page them. If the Nurse is busy ask the Ward Clerk

• Do not hesitate to voice your needs or any concerns

• For additional assistance or support ask to speak with a Social Worker

• If you have unresolved concerns regarding patient care ask to speak with

a Patient Liaison Officer. To contact the Patient Liaison officer ring

your treating hospital.

Your knowledge of your care recipient is valuable...don’t

hesitate to speak up!!

Resources They are many resources available to assist you in your caring role. Below are

some helpful services:

General Resources:

Commonwealth Carer Resource Centre 1800 242 636 www.carersaustralia.com www.carersnsw.asn.au

Provides information, advice, counselling, support groups, advocacy, education

and training to carers and promotes the recognition of carers to government,

business and the wider public. Ask for a free Carers Support Kit.

New National Aged Care Information Line phone number is 1800 200 422.

It replaces the Commonwealth Carelink and Carer Respite Centre

Provides information regarding community aged care, disability and other support services and options for people of all ages and conditions. Can also coordinate access to respite services in your local area including emergency

respite. (If you want to find out more about respite care, contact the ward social worker)

Translating and Interpreting Service (TIS) 131450 For assistance with languages other than English

Commonwealth Financial Planning 1800 241 996 Information regarding financial planning

Young carers under 26 www.youngcarersnsw.asn.

National Dementia Helpline 1800 100 500 www.alzheimers.org.au

For information and support services across Australia

General Practitioner

Consider your local GP for your overall care needs. Your emotional and

physical health is important and your GP is an excellent contact to provide you

with information, care and treatment relevant to you.

GP’s can also arrange for 12 Medicare rebate counselling sessions per year.

7

Resources They are many resources available to assist you in your caring role. Below are

some helpful services:

General Resources:

Commonwealth Carer Resource Centre 1800 242 636 www.carersaustralia.com www.carersnsw.asn.au

Provides information, advice, counselling, support groups, advocacy, education

and training to carers and promotes the recognition of carers to government,

business and the wider public. Ask for a free Carers Support Kit.

New National Aged Care Information Line phone number is 1800 200 422.

It replaces the Commonwealth Carelink and Carer Respite Centre

Provides information regarding community aged care, disability and other support services and options for people of all ages and conditions. Can also coordinate access to respite services in your local area including emergency

respite. (If you want to find out more about respite care, contact the ward social worker)

Translating and Interpreting Service (TIS) 131450 For assistance with languages other than English

Commonwealth Financial Planning 1800 241 996 Information regarding financial planning

Young carers under 26 www.youngcarersnsw.asn.

National Dementia Helpline 1800 100 500 www.alzheimers.org.au

For information and support services across Australia

General Practitioner

Consider your local GP for your overall care needs. Your emotional and

physical health is important and your GP is an excellent contact to provide you

with information, care and treatment relevant to you.

GP’s can also arrange for 12 Medicare rebate counselling sessions per year.

8

Oncology/ Haematology Specific Services

The Cancer Council 13 11 20

http://www.cancercouncil.com.au

The Cancer Council is an organisation which aims to provide support and

information to people with cancer and their families.

Casula Hub

Ph (02) 9354 2050

Casula Hub is a Cancer Council community initiative. The Casula Hub supports

community members who have been affected by cancer. The Hub offers support to

cancer patients, carers and / or family members . The Casula hub offers a variety of

programmes, activities and information. Casula Hub is located at 39 Ingham Drive.

Canteen

http://www.canteen.org.au

CanTeen's mission is to support, develop and empower young people living with

cancer. We do this by providing an Australia-wide peer support network for 12 to 24

year-olds, who including patients, siblings and offsprings as well as the bereaved.

Leukaemia foundation

http://www.leukaemia.org.au

The LF offers personalised support and care for patients and families right

throughout their journey – from diagnosis, treatment to recovery. This support is

provided by an extensive team of trained cancer nurses and allied health

professionals and reaches every town and community across Australia .

Liverpool Hospital Wig Library

Wig library is held at Liverpool Cancer Therapy Centre every second Tuesday

afternoon. They can assist you with obtaining suitable wigs. Book in at reception at

the Cancer Therapy Centre.

Look Good, Feel better

http://www.lgfb.org.au

Look Good...Feel Better is a free community service program dedicated to helping

women undergoing treatment for cancer. The purpose of the program is to help

them manage the appearance related side effects of chemotherapy and

radiotherapy, thereby helping to restore their appearance and self image. Contact

Cancer Therapy Centre to register for program.

Whilst in hospital

Hospitals can be overwhelming and the hospitalisation of your loved one or care

recipient may be unsettling for you both. Understanding the hospital system and

people working in it can be helpful in reducing stress and improving communication.

For more information about the ward, ask for a’ Patient or visitor Information

Haematology/ Oncology Ward at Liverpool Hospital’ brochure.

The health care team…

Interns/Residents are junior medical staff who are usually on the ward for most of

the day. They usually review patients with the Registrar daily and will have the most

contact with family and carers.

Registrars are senior doctors who make decisions about medical management in

consultation with the specialist and other staff. They usually complete a daily round

of the ward and are available to speak with family and carers if required.

Consultants are specialists in their field and are consulted and kept informed by

residents and registrars regarding patient care. The Consultants have overall

responsibility for the medical care of their patients. Occasionally other specialists will

be asked to consult and may be involved in patient care.

Nursing Team

Nurse Unit Managers are responsible for nursing staff and ward

management. They are a good contact for patients and carers and can assist with

most patient related enquiries. They liaise with doctors, nurses and allied health

professionals regarding patient care and management.

Nurses provide direct clinical care and support to patients. They have the most

contact with family and carers. They also liaise with doctors and allied health

professionals.

9

Whilst in hospital

Hospitals can be overwhelming and the hospitalisation of your loved one or care

recipient may be unsettling for you both. Understanding the hospital system and

people working in it can be helpful in reducing stress and improving communication.

For more information about the ward, ask for a’ Patient or visitor Information

Haematology/ Oncology Ward at Liverpool Hospital’ brochure.

The health care team…

Interns/Residents are junior medical staff who are usually on the ward for most of

the day. They usually review patients with the Registrar daily and will have the most

contact with family and carers.

Registrars are senior doctors who make decisions about medical management in

consultation with the specialist and other staff. They usually complete a daily round

of the ward and are available to speak with family and carers if required.

Consultants are specialists in their field and are consulted and kept informed by

residents and registrars regarding patient care. The Consultants have overall

responsibility for the medical care of their patients. Occasionally other specialists will

be asked to consult and may be involved in patient care.

Nursing Team

Nurse Unit Managers are responsible for nursing staff and ward

management. They are a good contact for patients and carers and can assist with

most patient related enquiries. They liaise with doctors, nurses and allied health

professionals regarding patient care and management.

Nurses provide direct clinical care and support to patients. They have the most

contact with family and carers. They also liaise with doctors and allied health

professionals.

10

Care coordinators are available as a single contact person to support patients and

family. They provide specialised and tailored information and education. They also

initiate appropriate and timely referral to other supportive services and health

professionals.

Dietitian manage the dietary needs of patients and provide information on good

nutrition. They advise on tube feeding regimes and provide dietary education

regarding particular nutritional needs related to specific health conditions.

Occupational Therapists assess a person’s ability to function at home, at work or

adapt to lifestyle changes after an illness or injury. They assess a person’s ability to

perform daily tasks and activities. They may suggest home modifications, provide

equipment to assist daily functions and advise on ways to conserve physical energy

Physiotherapists work with people to restore function in order to maximise mobility

and independence. They may prescribe exercises and suggest appropriate

equipment such as walking aids.

Clinical Psychologists assist patients and carers to handle their illness, treatment,

and changes that come along with the situation. They focus on helping the patient

and carer maintain their psychological and emotional wellbeing in meeting the

challenges of the situation.

Social Workers provide counselling, information and support to patients, carers and

family members. They are often involved in complex discharge planning and help

people identify existing supports and future care needs. This may include

community services at home or planning for residential care options. Social Workers

are also patient and carer advocates and can assist in negotiating the hospital

system.

Speech Pathologists focus on a persons ability to swallow and communicate

(speech). They provide skilled assessment and management to patients with

swallowing difficulties. Speech pathologists will liaise with staff, patients and carers

to ensure that meals are prepared so that they can be safely swallowed.

You can contact members of your health care team by asking the nurse or ward

clerk to page them or by phoning them directly.

Doctors review their patients at different times in the day so it may be a good idea to

let a nurse or the nurse unit manager know if you wish to speak with a Doctor.

Names and contact details of your health care team

Doctor

_____________________________________________________________

Ward/Nurse Unit Manager

_____________________________________________________________

Care Coordinator

_____________________________________________________________

Dietician

_____________________________________________________________

Occupational Therapist

_____________________________________________________________

Physiotherapist

_____________________________________________________________

Psychologist

_____________________________________________________________

Social Worker

_____________________________________________________________

Other

_____________________________________________________________

_____________________________________________________________

Haematology/Oncology Ward: 8738 7530 Social Work Department: 9828 6716

Publication date: October 2010 Catalogue No. 11/0003

11

Names and contact details of your health care team

Doctor

_____________________________________________________________

Ward/Nurse Unit Manager

_____________________________________________________________

Care Coordinator

_____________________________________________________________

Dietician

_____________________________________________________________

Occupational Therapist

_____________________________________________________________

Physiotherapist

_____________________________________________________________

Psychologist

_____________________________________________________________

Social Worker

_____________________________________________________________

Other

_____________________________________________________________

_____________________________________________________________

Haematology/Oncology Ward: 8738 7530 Social Work Department: 9828 6716

Publication date: October 2010 Catalogue No. 11/0003

12

Medical Discharge Checklist

♦ Have you arranged transport?

♦ Collect personal items

♦ Collect medications, medication list and prescriptions

♦ Collect discharge summary/ letter

♦ Collect any equipment and/or supplies from nurses, allied heath or PADP

♦ Collect any referral letters medical/community health nurses/community

health services/allied health services.

♦ If community support services have been arranged do you have the service

providers contact details?

♦ Notify community service provider/s of discharge eg. homecare

♦ Have follow-up appointments been made? Scheduled appointments: Specialist Consultant ___________________________________

GP ___________________________________

Care Coordinator ___________________________________

Dietician ___________________________________

Occupational Therapist ___________________________________

Physiotherapist ___________________________________

Psychologist ___________________________________

Social Worker ___________________________________

Community Health ___________________________________

Central line dressings ___________________________________

Other ___________________________________