Carer Support Program
Our Carer Support Program is committed to promoting carers as valued and respected partners in health care. We achieve this by educating and supporting health staff to identify and consult with carers and to recognise carer expertise.
Who is a carer?
A carer is someone – a family member, friend or neighbour – who regularly provides support to someone with a disability, chronic health condition, terminal illness, mental illness, or someone who is experiencing age related frailty.
Carers are not paid for their role, though they may receive a Centrelink allowance or payment.
Anyone, at any time throughout life can become a carer. Carers are a very diverse group of people, of differing ages and backgrounds with each caring situation being unique. Caring may involve a few hours assistance per week through to sustained 24-hour care. It may also involve balancing full or part time work with caring responsibilities.
A carer may provide assistance with a range of activities including personal care such as:
- showering or dressing
- mobility
- transport
- social and emotional support
- communication
- meal preparation
- housework
- medication management
- financial management
- other aspects of the person’s daily life.
Top 5 Program
TOP 5 is a simple person-centred communication strategy which captures a carers' knowledge of a patient.
Carers are provided the opportunity to share information that can help staff improve and personalise patient care. By using strategies provided by a carer, staff can gain a better understanding of how to settle a patient, reduce their anxiety, and develop an awareness of specific behaviour which may indicate a patient’s feelings or needs. Up to 5 strategies can be recorded on the TOP 5 form.
Top 5 for kids
What is TOP 5 for Kids?
TOP 5 for Kids is a written tool that is used to help health staff better understand the needs of your child. It helps with communication during an admission to hospital.
TOP 5 for Kids is used for children with special needs, disabilities, problems with speech, chronic health conditions, and other illnesses.
As a carer and parent no one knows your child as well as you do. You know their personality, their ‘must haves’, their likes and dislikes, their fears and their routines. You also know how to comfort and soothe them when they are frightened, anxious or upset.
The information that you can provide about your child is valuable to health staff. It helps them develop an understanding of your child’s behaviour and how they communicate.
What should I write on a TOP 5 for Kids form?
You will be invited to share up to five things that you think are important for staff to know about when caring for your child. A staff member will provide a TOP 5 form so you can write down your TOP 5 for Kids tips, also known as strategies.
If you can only think of two or three things, that’s fine, more can be added later if you wish. When you write your TOP 5 for Kids tips, consider the things that you feel are important for staff to know about:
- what helps your child feel reassured and settled?
- are there any specific behavioural signs or language that indicates feelings or needs and how can staff encourage communication and engage your child in activities?
- are there any situations that may cause distress to your child?
- what are their ‘must have’ items or comforters?
- are there any routines or rituals that staff should be aware of?
- what are their favourite books, games, toys, etc?
How does TOP 5 for Kids work?
When completed, the TOP 5 for Kids strategy form will be placed on your child’s bed chart. The information on the form will be available to all health staff who have a role to play in your child’s care.
The TOP 5 symbol on your child’s bedside Care and Communication Board will also be ticked to let staff know that a TOP 5 for Kids is available.
Examples of TOP 5 for Kids tips
| "Ryan clicks his tongue when he is thirsty." |
| "Lucy doesn't like people looking directly at her. When talking to her, pretend to look at something else. When she is ready she will look at you and then you may look at her. Otherwise she will throw anything she gets her hands on." |
| "Jack has a unique sign for YES: He taps his head with a closed hand." |
| "Ben must have his blanky (blue blanket) on his bed - it helps him feel safe." |
Top 5 for Residential Aged Care
What if an aged care resident is admitted to hospital?
If a resident is admitted to hospital, a copy of the TOP 5 form will be sent with them and provided to nursing staff on arrival. The TOP 5 tips may also be used by patient transport staff and paramedics whilst the person is in their care.
The TOP 5 tips can be discussed with nursing staff and may be revised to make sure they are workable in a hospital setting. These suggestions will be available for all staff to use to help with care and communication during the resident’s stay in hospital.
Examples of TOP 5 for residential aged care tips
| “If my wife starts to mumble and talk to herself she is becoming anxious. Talk to her in a calm, friendly and relaxed way about flowers and show her the picture book. She will soon be smiling." |
| “If Mary is in pain she will start humming to herself." |
| “No one knows mum like I do but with a TOP 5, staff understand the little things they need to know, like how she bounces her legs when she needs to go to the toilet and clenches her fists when she is in pain. It was great to see these things written on her TOP 5. I feel reassured that staff will know what she needs when I’m not there." |
| “Dad was a dairy farmer. If he seems restless around 5am, offer him a cup of tea and let him know all the cows are in for milking and he will settle." |
Tips for carers - taking care of yourself
Carers are vulnerable to stress because of the physical and emotional demands of caring. Stress may bring physical symptoms such as headaches or difficulty sleeping, anxiety or feeling very emotional.
Although it can be difficult, you need to consider your own needs as well as those of the person you are caring for. If your health begins to suffer, caring will become more difficult and it will not be easy to continue doing all the things you need to do.
The following tips about how to take better care of yourself may be helpful.
1
Get out and about
Try to continue with activities you enjoy. Even though the many responsibilities of caring can make it difficult to manage, it is important that you develop and maintain your own interests outside of your caring role. Maintaining your interests can help your general health and wellbeing.
Some carers say that they feel guilty when they leave the house or enjoy an activity without the person they are caring for. If you are finding it difficult to get out and about, it may help to talk to someone about how you are feeling
2
Connect with others
It’s easy to feel isolated when you are a carer. You might be too busy to keep up with friends and family and people may visit less often. Talking to someone who understands what you are going through can be a great relief.
Sharing your experiences with someone you trust can help. When feelings, concerns and problems are shared, the experience of caring can seem less isolating. It is important that you don’t feel alone.
3
Join a carer support group
Why join a support group?
- To meet other carers in a similar situation to yourself.
- To have a break from your caring role.
- Sharing of ideas, feelings, worries or problems can help you feel less isolated.
- To access information and resources about available support services in your local community.
Carers NSW can help put you in touch with a carer support group in your area. Contact Carers NSW on 1800 242 636.
4
Stay healthy
Try to make sure you are:
- Making time for regular exercise – this will help you feel more energetic and provide a break from your daily activities.
- Having healthy regular meals – this is not always easy to do, but it is important for your long term-health and wellbeing.
- Getting enough rest and sleep – tiredness and exhaustion often add to the stress of caring.
- Looking after your back – if you need to lift or transfer the person you are caring for, get professional advice on the safest way to lift and any available aids to assist you.
5
Take breaks
You cannot constantly care without a break. Even though it’s not easy to do, don’t be afraid to ask for help. Respite care services can help you plan for regular breaks. The sort of break you take will depend on what suits you and the person you are caring for, as well as the services that are available in your local area.
Breaks can be taken in your home or away from home. They might be for a few hours, a day, overnight or longer. It might mean that you get the opportunity to have a massage, go to an exercise class, enjoy coffee with a friend, or go on a short break or longer holiday.
Contact the Commonwealth Respite and Carelink Centre on 1800 052 222 to discuss what respite options might be available to you and the person you are caring for.
6
Plan to take time for you
Getting into the habit of making time for yourself as a regular part of your day is important. Don’t feel guilty about this time – it’s time for you!
Planning ahead and pacing yourself will also help. If possible, plan activities such as housework for times when you are feeling you have the most energy. Don’t rush, and remember to value yourself in all that you do.
7
Practice relaxation
Although it can be easier said than done, you need to take time for yourself every day. It doesn’t need to be long - 15 minutes can do wonders.
Try to take some time to just sit and relax, read a magazine, listen to a relaxation CD or your favourite music.
Get more information and tips and download our checklist for carers in our Information for Carers booklet (PDF 4.53MB)
Resources for carers
If you need support, you can reach out to these services:
Carers NSW
Further information and a range of fact sheets about caring are available from Carers NSW. Carers NSW can provide information and advice about services that are available to carers, including emotional support and counselling. Call Carers NSW on (02) 9280 4744.
Carer Gateway
The Carer Gateway provides practical information about services and support that is available to carers both online and by phone. Carers can call 1800 422 737 Monday to Friday between 8.00am and 6.00pm for information about services and support.
The Carer Gateway website also provides information for a range of carers including young carers, older carers, working carers, Aboriginal and Torres Strait Islander carers, and culturally and linguistically diverse carers.
Contact us
Contact our Carer Program Coordinator:
Beth Masling, Manager - Patient Experience and Living Well Together by email: beth.masling@health.nsw.gov.au or call: (02) 6369 3829