Topic Tuesday // Feeling excluded in a loved ones treatment journey // Tues 21 Aug, 7pm AEDT

[CharlieBravo]

Here's a link to the Act for anyone who (like me) hadn't read it before: https://www.legislation.gov.au/Details/C2010A00123

[Lynne1]

1. Ways that work in self-care

I’m sure you can relate to the isolation, exhaustion and psychological stress that often accompany a caring role … I can! Often it’s the simple things that can bring a welcome break. Here are a few that work for me:

• Getting into nature, usually by going for a walk near trees and birds, the bush or the sea
• Keeping contact with good friends and family members who understand (and don’t judge). Even though there are some things I can’t talk about, it’s lovely to share time out
• Meditation, or mindfulness as it’s often called, is very helpful to me and I try to do a little every day. It helps me connect with a peaceful state within.
• It’s important to me to look after myself in terms of looking presentable! I find it’s easy to slip into the habit of wearing the same old trackpants and jumper, and remind myself to spend a little time on my appearance.

Qu: And yes, I’m an older person, but whatever your age, what works for you in how you give yourself self-care?

[Former-Member]

I have referred to the "National Standards for Mental Health Services" and the "Mental Health Statement of Rights and Responsibilities"

[Shaz51]

only support I get is from the sane forum @Lynne1, @Former-Member

My husband does have times when he want to reconnect with the health specialists but he does not want to go through it all again

[CharlieBravo]

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@Lynne1 wrote:

1. The development of Standards for mental health services

I was also empowered when I learned that mental health services are now being required to meet certain standards in relation to carers. A wonderful resource is ‘A Practical Guide for Working with Carers of People with a Mental Illness’, available online. This resource explains HOW a service can work together with carers. Below is an extract (p. 5):

• Recognise who carers are and acknowledge the importance of their role

• Always welcome carers and enquire about their reason for visiting or contacting the service

• Request information from carers to assist with the care and support of the consumer

• Provide information about our service, including its purpose and how it can be contacted

• Provide information about carer rights and responsibilities

• Ask if carers have and questions and do our best to answer them

• Explain what can, and cannot, be discussed

• Refer carers to separate carer information and support services

• Ensure carers are fully engaged in all stages of care

Each of these are explained as measurable standards, with hints and ways that a service can ensure it meets the needs of carers.

Qu: Are there any surprises here for you? Do you have a ‘good news’ story as it relates to any of these standards in your own experience?

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My only concerns are:

1. Whether my wife and I are, technically, Carers undervthe definition in the Carers Recognition Act.  Our daughter is an adult, and I don't think we are necessarily Carers unless she says we are; and,
2. The fact that the Act does not create legally enforceable obligations.  So we're only involved if the patient agrees and the therapist does too.  Probably still stymied and locked out!

[Lynne1]

That's great, Darcy. I admit I can be a bit timid when confronted with professionals. Even so, I find that being well informed has taken a load off my mind, and given me strength (and, enabled my natural sense of humour to kick in!). 

[Former-Member]

I'm really glad you feel supported on the forums @Shaz51 It's great to have you here. Please do know too that you can connect with one on one support for yourself by chatting to your GP too 🌻

Thanks for adding in the link @CharlieBravo. And you're right around the definition of 'Carer' too. Often it does require the person engage in treatment to identify family and friends as part of their support network. That can be tricky to overcome where your loved one isn't yet open to that at this time. 

[Former-Member]

Tips for managing exclusion

• Identify the barriers to inclusion e.g. it might be that your loved one is concerned about confidentiality or it might be that the treatment team haven’t been inclusive. See if you can problem solve the barriers together with your loved one.
• Talk to your loved one to explore any fears they might have about being more involved in their treatment. It’s important to consider timing and location e.g. select a private space to talk at a time when your loved one is free and not in acute distress.
• Explain why you think it would be helpful for you to be included in their treatment e.g. “it will help me to better understand how things are for you” or “it will help me to better support you”
• Negotiate ways you might be able to be included e.g. talking to their treatment team about ‘general’ information rather than ‘specific’ details of their treatment
• If there are several professionals supporting your loved one, ask whether they might be comfortable with you talking with the professional they trust they most
• If your loved one prefers that you don’t have direct contact with their treatment team, explore whether your loved one might be able to provide you with a bit more information about how their treatment is going on a regular basis e.g. organising a ‘check in’ after their regular appointments where they can update you with what they feel comfortable sharing
• Ask your loved one whether you can work together on a plan about how you might be able to support them in their treatment. You might like to write this down and keep it somewhere visible to you both.
• If your loved one insists that they don’t want you to be involved in their treatment, it’s important to respect their decision. You might like to gently return to the exploration stage again at a later time.
• If you feel like you’d like a bit more support to help your loved one, consider talking with your GP to get a referral to a counsellor in your local area

[CharlieBravo]

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@Former-Member wrote:

I'm really glad you feel supported on the forums @Shaz51 It's great to have you here. Please do know too that you can connect with one on one support for yourself by chatting to your GP too 🌻

Thanks for adding in the link @CharlieBravo. And you're right around the definition of 'Carer' too. Often it does require the person engage in treatment to identify family and friends as part of their support network. That can be tricky to overcome where your loved one isn't yet open to that at this time. 

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Agreed!  Any suggestions on how to persuade them to be more open to the idea?

EDIT Oh, sorry, just read the post above, there's some golden ideas in that list!

[Lynne1]

This is an area that is discussed (as well as offering practical advice to service providers) in the 'Guide' resource I mentioned earlier.