Carers Within the Chronic Disease Setting. SESLHD Carer Program and Connecting Care Project

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1 Carers Within the Chronic Disease Setting SESLHD Carer Program and Connecting Care Project

2 The Carer Program in SESLHD Think patient- think carer

3 Role of Program To improve access and support for Carers: Services; referrals Implementation of Carer Policy and Legislation - Carers (Recognition) Act and NSW Carers Charter, NSW Carer Strategy Linking carers with local NGO services To increase Carers inclusion: Consultation and discharge planning Care plans Advocacy for Carers: Representation in policy and planning Carer Education Access to Carers NSW, Carer services

4 South Eastern Sydney Local Health District 77,767 in SESLHD (2011 census) Estimated 12% staff have caring role.

5 Identifying Carers Needs within the Chronic Disease Setting Project Main objectives: To identify hidden Carers within SESLHD To promote health & well being of these Carers To identify gaps in service; Carer demographics To obtain Carer feedback for service improvement

6 Identifying Carers Needs within the Chronic Disease Setting Project Quantitative findings: Correlation of gender and relationship

7 Cultural Awareness According to the 2011 Census, SESLHD has 26% of its residents born in a non English speaking country. 6% identified Aboriginal and Torres Strait Islanders

8 LAST SAW GP? 12 months 6-12 months= 4% 3-6 months = 10% Within 3 months= 34% Within fortnight= 46% =6%

9 Access Health literacy 16% had trouble understanding what the Dr/Nurse/Health Professional said 16% have a problem with reading Links 60% of carers have NO access to the internet 66% of carers have NO links with local NGOs and local services Contacts 86% of carers have NO contact with other carers Only 2% were members of Carers NSW

10 Gaps Analysed 58% carers prioritise the care recipient's health above their own health- Why? 40% said they don't have the time to look after their own health 4% said cost was a factor Only 14% said they receive respite 12% care for more than 1 person 48% had never applied for the NSW Carer Allowance

11 Current Issues/Contributing Factors to Carers Health Trajectory: 56% of carers were over the age of 65, 26% were between years 72% lived with the person they care for 40% cared full time or 24/7 and 24% cared for more than 30hrs/week 42% had a medical condition that affected their caring role (18% cardiac related) 14% get 4 hours or less sleep at a time, 26% get 4-6 hrs/night on average. 16% have been caring for over 12 years, 14% for 8-12 yrs, 28% had no one else to replace their caring role 24% self identified feeling anxiety/depression Only 18% received counselling (8% self referred)

12 Qualitative information Positive aspects of the caring role Keeping them at home Fulfilling family duty Providing Comfort Because I don t want him in a home He is my dad, he would do it for me The ability to ensure that my wife of 60 years is having the most comfortable life I can provide

13 Qualitative information Suggestions from carers for the team Provide Information Provide Follow up I don t know what to ask for because I don t know what is available X is very good, caring and keeps following up on people

14 Qualitative information Most positive aspect of the service Information Reassurance Caring Attitudes very personable, good to follow up and provided lots of information made it personal and felt like my dad was looked after and included me in what was going on XXX is exceptional. Very nice, caring and thoughtful. Clinic has been wonderful, so gentle with him and caring

15 Identifying Carers Needs within the Chronic Care Setting Project Analysis: The project provided Carers with an avenue for frank conversation away from the care recipient and at a time that suited the carer. Provided valuable insight into the poor wellbeing of these Chronic Disease Carers within our LHD (as evidenced in previous national studies i.e. Carer Wellbeing Index, Prof. Cummins. 2007) Enabled hidden Carers the option of making connections and links to support within the hospital and to local services.

16 Key issues identified 1. Longevity of the Carer role 2. Lack of understanding of the role of the health professionals and Health services 3. Lack of support and inadequate links to local services 4. Misconceptions about the role of Carers Support Groups 5. Health risks to the Carer- Shared lifestyles

17 Recommendations...

18 Phase Staff training 2. Carer identification and health assessment 3. Access to information 4. Carer specific responsibilities in the team

19 REFERRAL PATHWAY Carer Identified by Access and Referral Centre from Connecting Care Client List

20 LETTER SENT TO CLIENT

21 TELEPHONE INTERVIEW AND QUESTIONNAIRE BY MARIE Carer Pack and introduction letter about project mailed to carer Referral to local services or to other service Referral for health screening

22 HEALTH SCREENING FOR CARERS BY REGISTERED NURSE

23

24 Contact Details Marie Le Bechennec Deborah Kelly

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