Dear Ministers, Members of Parliament, Diabetes Australia, and the Tasmanian community,

Recently the Type 1 diabetes community in Tasmania found out the diabetes camps run by Diabetes Tasmania will no longer be offered.

So much great work has been done recently in supporting the T1 community through extended access to CGMs, so we are struggling to understand why camps for young people have been cancelled. We are hoping a way can be found by all parties involved to restore them.

Our understanding of the underlying causes behind the cancellation is that it results from:

1) Funding impacts from both the State and Federal Government, and

2) Central decision making from Diabetes Australia/NDSS following the amalgamation of regional services including Diabetes Tasmania.

Whilst we appreciate that the overnight/weekend camps are planned to be replaced with activity days, we do not believe this is a suitable alternative for several reasons:

1) Day activities do not provide young people with the immersive experience that camp provides, and the benefits that come with that experience.

2) Camp gives young people with T1 an opportunity to explore some independence, often for the first time in any capacity since they were diagnosed. They gain valuable skills in learning to manage their condition in a medically safe environment with care givers when they young and away from their families when they are a little older – this is essential not just in them transitioning to managing their own care as they become a young adult but as they start to navigate the complexities of secondary school.

3) It is beneficial for their mental health – a struggle for a large number of young people with T1. Night time can be a scary time for people with T1. The mental health benefits from witnessing a young adult mentor who is super relaxed about getting ready for bed night after night and not suffering from anxiety about going to sleep cannot be gained by day activities. Surely funding a place at camp is more cost effective than a 10-session mental health plan with a psychologist or treating the long term complications resulting from running high all night?

4) Research shows that the health and psychosocial benefits of camps, along with the opportunities to form lasting friendships with peers, is a protective factor in the adolescent years when burnout, mental health issues, and DKA presentations become more of an issue. We don’t even want to think about how much an ICU admission costs.   

5) Day activities do not provide families with an opportunity for essential respite, and for many families camp is their only opportunity for respite. Respite helps in the prevention of burnout. Burnout leads to worsened T1 management. Good T1 management improves health outcomes and lowers the short and long-term financial burden on the health care system.

6) Many families do not have family support to take a night off from being a T1 carer. For many families when children are old enough to attend a camp independently it is the only opportunity for respite. Also, you don’t need to search for long on a family support forum for stories of grandparents who have never had their grandchildren overnight since diagnosis due to the complexity of T1 management or the overwhelming fear of an overnight hypo/seizure/death.

Respite is an important tool for preventing burnout in carers and the need and benefit is acknowledged by the government. For example, we believe there is co-funding for up to 63 days per year of respite for aged carers, NDIS funding for respite, and provisions for regular respite for foster carers. These provisions do not exist for families with young people with T1.

We all know that diabetes burnout is a huge issue for both people with T1 and their carers. We all know that burnout has negative effects on clinical markers such as HbA1c and time in range, and the mental health effects undermine the ability of people with T1 and their families to effectively manage both the day-to-day demands of T1 and the increased demands of managing sick days.

7) Tasmania is a small state that does not benefit from the large T1 charities and organisations that are based and operate on the mainland, therefore we are largely reliant on the services provided by Diabetes Tasmania/Australia.

We don’t have an abundance of events hosted by other organisations like other states that require less supplementation by Diabetes Australia. The small, locally based community organisations here can only do so much given their size. 

Thank you for taking the time to read and for supporting our mission to reinstate Type 1 family camps in Tasmania. Please sign our petition and share broadly.

Many families can personally attest to the benefits of the family style camps that were offered to younger children and their caregivers:

“We attended our first camp last year with our newly diagnosed 5 year old. It was such a great experience for her, and us. I am incredibly disappointed for our family and all the others that will miss out on the support and benefits of the camp experience”. - Clare

”Camps create life long friendships between our Type 1 children and parents. Day events do not come close to supporting time to make genuine connections and support each other through valuable conversations that time allows for in a weekend camp setting. My daughter has stepped up to take on new challenges with her own diabetes due to peer-to-peer support at camps”. - Danielle

”Our son has now attended 2 camps since being diagnosed at 2, 4 years ago. Activities like this are so valuable to their personal development and confidence.  But it takes time to build into this. Camps are great environment for this to happen,  where day activities don't foster this. Our son has built lasting relationships and talks about going again next year all the time. I find it a great chance to really bond as well, and share insights with all the other families. We were very disappointed in hearing of the cancellation. Day activities have their place, but can not compare to the camps.” - Beaumont

”Shortly after my son was diagnosed in 2021 we had the opportunity to attend ‘spring camp’ together. What I was taught at that camp by the diabetes educator enabled us to identify the early signs of a pump site infection a couple of months later. My understanding is that if we had not identified the infection when we did, at the very first signs, it would have likely required an admission for IV antibiotics instead of us being able to be sent home from the RHH emergency department an hour later with oral antibiotics.  

This conversation happened organically because a group of parents were doing pump site changes together and the young people were all holding up their shirts comparing their tummies, the diabetes educator just happened to walk past and was able to show the families the normal variation.

In my son’s own words: ‘camp was the first time that I felt normal since I was diagnosed’.” - Dani 

“To say that my 10 year old daughter and our family are shattered that camps are no longer an option is an understatement! 
My daughter was diagnosed at 4 years of age and we have attended camp every year with the exception of one year being cancelled due to covid! 
She instantly felt that she is ‘normal’ and the same as everyone else, she made friendships the first year, still speaks with her to this day and they both looked forward to meeting up each year at camp! To have this connection taken away is a big blow to my daughters well-being and future self care and management of her diabetes. 
She has made many life changing decisions about her care from others at camp. Such as new pump and CGM sites because others had there’s there etc.

I feel deeply saddened also for newly diagnosed families that these opportunities have been taken away. The chance to make life long friendship’s, to speak about your stories and share tips and tricks for managing this horrible disease! 
I must admit my husband and I were not convinced that camp was for our family, but we left the first time feeling like we’ve got this, we can do this and we’re not alone! But most importantly hearing our daughter talk about how much fun she had and that it was the best ever reassured us that this is the right choice for her!” - Rhiarna