Sunday, 17th of November, 2019 – The Exchange, HamiltonRead more
Phoebe Moloney – NOVEMBER 17 2019 – 7:00AM
STORIES: Karumah’s community and promotions officer Aly James with the service’s new book Karuma: 30 Years of Care. Picture: Supplied
After thirty years of supporting residents of the Hunter region with HIV, staff at Karumah say they are grateful to be able to tell a very different story about the virus to their clients and the community.
Whereas once the disease was a death sentence, early and ongoing medical treatment can now stop the disease’s progression and maintain the viral load at an undetectable level – at which point sufferers can be confident they won’t pass it to others.
“You have a good chance of living a very normal life,” said Karumah case worker Catherine Conaghan. “And it won’t stop you from having a family. I think the reality is completely different to what a lot of people think.”
To celebrate its 30th anniversary, the Newcastle not-for-profit service is launching a book on Sunday sharing 30 stories from its clients past and present of love, loss and survival.
PASSIONATE: Catherine Conaghan is a case manager at Karumah Positive Living Centre. Picture: Max Mason-Hubers
The support service hopes to illustrate the diversity of people the disease affects in the Hunter, which Ms Conaghan says includes men and women of differing sexualities and backgrounds. “Karumah: 30 years of Caring” aims to humanize those with HIV, as a large part of the service’s work in 2019 is trying to counter the impacts of stigma and discrimination on clients’ lives.
“We hope that this project can not only preserve the history of Newcastle’s response to the virus but also show that HIV affects people from all walks of life,” said Karumah’s community and promotions officer Aly James, who collated the stories.
“Above all, we want to celebrate the uniqueness and resilience of our community.”
One client of Karumah, who has asked to remain anonymous, said when he was first diagnosed with HIV 10 years ago he thought he was “going to die”.
“I thought I wouldn’t have a future and I was worried about my family and friends. Luckily, I quickly learnt that is not the case,” he said.
The Lambton resident sought treatment “right away” and, with daily medication, achieved an undetectable viral load within months.
Ward 11 at Royal Newcastle Hospital decked out for Christmas just days before the 1989 earthquake. Picture: Archival image collected by Pauline Dobson and Richard Riley
“The virus never really had a chance to progress so there’s been very little impact on my overall health, thankfully. This also means my work has been largely unaffected,” he said.
“Because I’m undetectable I cannot pass HIV onto another person. However, dating is still hard because there is so much stigma.
“I wish people would come from a place of understanding instead of fear.”
He said meeting others with HIV through Karumah had been “life changing”.
“I have made friends who I don’t have to explain anything to,” he said.Karumah is hosting a celebration for the launch of the book in Newcastle on Sunday. Those interested in attending can email firstname.lastname@example.org for details of the event.Read more
Taken from the ABC Newcastle website:
Bowling alleys, the Grim Reaper, intense scary voice – the HIV educational ads from the 1980’s are still well known in the Australian community.
But a lot has changed since then.
Kia Handley speaks with Aly James, a Community Support & Promotions Officer from Karumah, and Mathew Vaughan, Acting Director of HIV and Sexual Health at ACON, about what life looks like now for people living with HIV.
Duration: 13min 37sec
Broadcast: Wed 2 Oct 2019, 9:00am
You can listen to the interview here: https://www.abc.net.au/radio/newcastle/programs/mornings/hiv/11567030?fbclid=IwAR2VHzY-6g301OoXKMo5qdFOgzV6WTZvNDG5JbjQhmt7af8VeWYbi725S30Read more
This post originally appeared on Avert.Org: https://www.avert.org/living-with-hiv/health-wellbeing/mental-health
• It’s normal to have ups and downs when living with HIV.
• Being mindful of your worries, and seeking support from others, is a great way of maintaining your mental health. Remember you’re not alone.
• If you think you are suffering from depression, your healthcare professional may be able to help with counselling or antidepressant drugs.
If you’re living with HIV, you may have been given plenty of guidance and treatment on how to look after your physical health, but looking after your emotional and mental health is just as important.
There are many different types of mental health issues, such as depression, anxiety disorders, low self-esteem or personality disorders. They can affect anyone and everyone, but living with HIV can cause additional worries that may make you more likely to experience a mental health problem.
Here we look at ways to maintain good mental health and ways to tackle some concerns you might be facing.
While I no longer dwell on the past, I do have days when I feel depressed because of the whole situation. But then I look at my life and the things I have achieved, and that makes me feel better and more determined to do something with my life. – Kain
I’m worried about…
Living with HIV
From learning you are HIV-positive, to starting lifelong treatment or deciding the best way to share your diagnosis, you may have worries that are specific to living with HIV, which may in turn affect your mental wellbeing. We’ve got lots of information in our living with HIV section to help you with this.
Stigma and changing relationships
You may experience stigma and discrimination from people who don’t understand HIV and have negative views about it. This can be very hard to deal with, especially if it comes from people you are close to and/or if these relationships change as a result.
It can help to have information about HIV to hand – this way you can explain what it means to live with HIV today. Sharing the facts about how treatment has now made HIV a manageable, and even untransmittable, condition can help to dispel some of the common HIV myths and assumptions that some people may have.
Also, you may find comfort in talking to people who already understand the reality of living with HIV, such as a healthcare professional or support group.
“It’s getting easier as time passes, as I can explain that I’m okay and doing well on meds.” – Benoite
Antiretroviral drug side effects
As with most medication, there are some potential side effects that come with taking ARVs. Some people experience increased feelings of anxiety or depression after starting treatment for HIV, and if these are ignored they can be debilitating.
If you’ve had mental health problems in the past, it’s helpful to tell your healthcare professional when discussing treatment options.
Don’t hesitate to contact your healthcare professional if you think you’re experiencing depression and that your ARV treatment may be affecting you.
How can I look after my mental health when living with HIV?
Recognising the way you’re feeling is the first step to managing your emotional wellbeing when living with HIV. Here are some tips to help you manage:
Know what to look out for
Some people who experience mental health problems have trouble taking their HIV treatment correctly and may miss doses, skip appointments or not eat a healthy, balanced diet.
Don’t hesitate to reach out to someone if you find that any of these feelings are overwhelming or last for longer than two weeks:
- Feeling depressed, hopeless, ashamed or guilty most of the day and almost everyday.
- Feeling constantly fatigued/tired.
- Overeating or loss of appetite and/or weight loss.
- Finding it hard to concentrate or sit still.
- Suicidal thoughts.
Your healthcare professional will be able to find you the right support for you. They might suggest you switch your ARVs or take additional antidepressants if these symptoms persist.
Talk to family and friends
Sometimes it’s hardest to talk to those you love because you might be scared of their reaction or of upsetting them. However, they could be the greatest source of help and support because they already know you and can help you to feel less alone.
“I do talk to very close friends about it – it’s important to have at least one person who isn’t a clinician that you can talk to because they are helpful.” – Kain
Find support groups and helplines
If the support of family and friends isn’t possible, you might prefer to talk about your feelings with someone at a helpline or support group – a healthcare professional can help you find one.
The fact that you don’t know these people personally may help you to talk honestly about your feelings and living with HIV. In return, they can offer you practical and emotional wellbeing advice.
“Family are a great support system to have through it all… but if you don’t have that, there are numerous support groups that work with HIV infected persons.” – Curt
Share your feelings with your healthcare professional
Your healthcare professional isn’t just there to give you treatment and check your viral load. They also need to know if you’re experiencing other difficulties that could affect your overall health, such as mental health problems.
They may suggest treatment that includes antidepressant drugs or talking therapies, such as counselling or cognitive behaviour therapy (CBT).
Find some sort of positive support from the time you find out until the time you can rely on yourself. You are not the disease – it is a part of you. – Curt
Exercise and staying healthy
Getting enough exercise, sleep and nutrition is important for a healthy mind and the benefits can be even more significant for anyone who is living with HIV.
Many people find that changing to a healthier lifestyle helps with some of the symptoms and enables them to get some control back in their life. Drinking too much alcohol or being dependent on drugs could also have a big impact on your mental health and the success of your treatment.
Don’t be too hard on yourself
It’s normal to have negative feelings and feel fearful about what the future holds.
Often it’s about learning how to cope with feelings of uncertainty and, in many cases, this can be hard to do without the support of loved ones or a mental health professional.
“I’ve learnt a lot about myself since my diagnosis and how I deal with things; I’ve become more headstrong and I don’t give up very easily.” – Kain
Do things that relax and interest you
You may lack interest in activities that you used to enjoy, but keeping active is one of the best ways to break the cycle as it lifts your mood and energy levels, increases your appetite and improves your quality of sleep.
Even small activities such as a walk around the park, 10 minutes of yoga or some gardening may help to relax and distract you from any negative thoughts.
Photo credit: ©Unsplash/Llywelyn Nys
From the NAPWHA Facebook page:
June 5th is HIV Long Term Survivors Day and we commemorate and celebrate the lives, bravery and advocacy of those who paved the way for every facet of the HIV response.
“To all long term survivors out there today we are acknowledging the major ups and downs you have been through on your journey to stay alive, and with as much quality of life as possible. You are respected within the HIV community and beyond for the challenges you have faced, including the grief and loss that has been so much a part of our lives in the past. Stay strong and support each other. We are each other’s heroes.” – David Menadue
The Forgotten Generation?
Modern advancements such as U=U have redefined what it means to live with HIV. But, as Ross Duffin reports, for the long-term survivors the lived reality is not so rosy. Read More:
Survey Background – The Australian Government is holding a Royal Commission into Aged Care Quality and Safety. The Royal Commission will provide Australian people living with HIV (PLHIV), their partners, carers, family and friends, HIV service providers and Aged Care services with a rare opportunity to make clear to the Australian Government, the current and future Aged Care service needs of PLHIV in all Australian states and territories.
To advance this objective, Positive Life NSW and NAPWHA will write a submission to the Royal Commission. The submission will closely align with the Royal Commission’s Terms of Reference and provide qualitative and quantitative data on the following:
– Whether Aged Care services meet the needs of Australian PLHIV (current and future) and whether the quality of services is acceptable, or needs to be improved?
– Whether there are PLHIV who need Aged Care services, but are ineligible (system gaps, for example, PLHIV under age 65 years)?
– If there is evidence of mistreatment, abuse or discrimination of PLHIV in the Aged Care service system and how the abuse, mistreatment or discrimination manifests?
– How services would best be provided to PLHIV with neurocognitive disorders? and;
– Preference about where PLHIV would like to receive Aged Care services (at home, in a residential Aged Care facility, in another type of facility/model of care) and why?
To provide PLHIV and others associated with the care of PLHIV with an opportunity to provide this advice, Positive Life has developed an anonymous online survey. The survey will target: PLHIV; the partners, carers, friends and family members of PLHIV; HIV service providers, and; Aged Care service providers. The survey has been peer-reviewed by individuals from each of the four target groups.
The issue of PLHIV and ageing has been discussed within the HIV sector for at least the last decade. Although there has been published international literature on the issue of HIV and ageing in European and American studies, the Royal Commission will be most interested in Australian research that clearly articulates the current and projected needs for Aged Care service over the next 10 to 20-years. Data from this survey will play an important role in providing this information.
Survey Distribution – To achieve feedback from all jurisdictions, we’re asking for your support to distribute the survey link to:
– PLHIV and their partners, carers, and family members in your jurisdiction
– HIV services providers (particularly clinicians, allied health and NGO HIV support workers etc.). You will know which service providers in your jurisdiction would be best qualified and more likely to provide information
– Paper copies of the survey will also be available (upon request from Positive Life NSW)
Below is the link to the online survey for distribution. The link can be copied into an internet browser to access the survey.Read more
|Farron Research is proud to announce the launch of its Disability Market Research Panel which will provide companies with the means to understand the requirements/needs that people with disabilities have in terms of products and services within the Australian Market. |
To date, access to these panels has been restrictive and Farron Research is looking to open the barriers so companies can perform more research using our disability panel and therefore developing products that identify with this market.
Farron is looking for companies that are in the disability arena to ask their members with a disability to register on our panel so they can participate in paid market research. All respondents that are selected to participate in research sessions will be paid a gratuity/incentive for their time and effort and this varies between $80-$150 for 60/90 minutes of their time.
Farron Research strictly adheres to the Australian Privacy Principles and all information provided to Farron will not be passed onto any third parties/researchers without the prior permission of the participants. Farron will also never sell any service or product to its panel members as Farron is bound by the Australian Market and Social Research Society Code of Professional behaviour. Farron is purely trying to meet the needs of large corporations that want to hear from people with a disability to get their opinion on their products and services. One of the biggest areas where we need this help is with usability testing with Websites and apps.
Farron also tries to carry the research out at a location that is convenient to the members on this Disability panel as we understand transport may be an issue.
For more information on Farron Research, please go to www.farronresearch.net.au and you can register at: https://farronresearchrecruitment.com.au/ResearchMe/Respondent/CreateDisabilityRego?ref=NDIS
The following profile was featured in the Newcastle Herald on April 1st, 2019:
Catherine Conaghan says she will “be carried out in a stretcher” before she leaves her job.
The Holmesville resident has served as Karumah Positive Living Centre’s case manager for seven years.
“I love my work,” the social worker said. “I think I’ve done all my growing in the last seven years.”
Karumah provides support to around 80 Hunter residents who live with HIV. This year, the service is celebrating its 30th birthday.
“Some people will isolate themselves,” she said. “They feel like they don’t deserve to be part of the community. So we try working with them to engage socially and become more confident.
“There can be mental health issues triggered, some have PTSD symptoms, or other mental health issues.
“For most we’re in contact with, it’s a question of: you’re never going to recover from HIV nor likely recover from mental health issues, but what is your own perception of what that could be like?”
“Basically, I will go and meet people in their homes or a venue that suits them and talk about barriers to accessing what would generally be considered normal life choices. In collaboration, we’ll establish what steps to undertake to get rid of some of those barriers,”
She said that while treatment for HIV had greatly improved and meant most people could live “a very normal life”, a positive HIV diagnosis still carries social and psychological implications.
She said a “really important” message about living with HIV was that “undetectable means untransmittable” or “U equals U”.
With early and ongoing treatment the advancement of HIV can be stopped, Ms Conaghan explained, and the virus reduced to an undetectable level in the blood. When the virus is suppressed to an undetectable level patients can be confident they will not pass the disease on to anybody else.
Ms Conaghan said her clients were mostly over the age of 40, but otherwise “very, very diverse”.
“There’s people of all backgrounds and genders and sexualities, quite a number of culturally and linguistically diverse people, people with families and people who are single,” she said.
A common factor is the stigma they experience.
“The biggest thing is that there is a human face behind the label,” Ms Conaghan said.
“It is still considered by lots of people as the worst thing that could happen to them,”
“People don’t get tested because they don’t want to live with the reality, whereas the reality is completely different to what they think. You have a good chance of having a very normal life. It won’t stop you from having a family.”
Written by Pheobe Molony
See the full article here:
The Men’s Health Education Rural Van is back on the road with a jam-packed 2019 tour, offering FREE Men’s Health checks.
A custom built caravan with a dedicated Registered Nurse travels the state of New South Wales offering free health screenings to regional and rural men, who are notorious for being completely in the dark about the state of their health.
The dates for the next 2 months are:
Tue 26-Wed 27 Muswellbrook
Fri 1- Sun 3 Mudgee
Tue 5-Wed 6 Scone
Thus 7 Murrurundi
Sat 8-Sun 9 Barraba
Tue 12-Wed 13 Manilla
Fri 15-Sat 16 Quirindi
Mon 18 Boggabri
Tue 19-Wed 20 Narrabri/Wee Waa
Fri 22-Sat 23 Walcha
Tue 26-Wed 27 Glen Innes
Fri 29 Sat 30 Warialda
For more information go to www.mherv.com.au or phoneRead more
Karumah is celebrating our 30th birthday this year and we have so many exciting things in the works to commemorate an incredible ongoing journey. The kind and generous folk at Fresh Promotions are helping us celebrate by donating these very special Karumah-branded keyrings for us to giveaway over the course of the year.
These aren’t any ordinary keyrings! They are specially designed to hold tablets and pills to help you store medications on the run. They have an airtight seal to keep the contents safe and drive and are discreet and portable.
If you would like one, either come along to a Karumah event this year or contact Peer Support Officer Aly at email@example.com and she will make sure one gets to you.
Thank you again Fresh Promotions for supporting Karumah!