I agree. The desperate attempt at reelection over holding their values is abominable. I am going to do an explainer about MMP because it worries me that it’s framed as National v labour all the time.
Great recommendations! I would also say access to a list of all available assistance and who qualifies. I’ve just learnt about the counselling sessions reading your piece now! I could genuinely use that at the moment. I’ve also heard through whispers from others of things I could ask for. It took me years to learn I would qualify for the supported living payment as my sons carer. I’ve now just learnt that during challenging times the ministry of health has housework help. I’ve just asked for that as we’re currently support worker free and all having a significant asthma flare up. It’s hard finding the time, space and executive function to navigate it all.
There’s been a lot of issues with this around whether it will actually be a strategy or not and whether the rare diseases community will get input. There was a meeting last year that wasn’t attended by Te Whatu Ora about the strategy. If they didn’t even attend the meeting to outline the strategy you can see why people are sceptical. It is meant to be completed by 2023 but my bullet point will stay up until it looks like mahi that includes people with rare diseases and their caregivers are included and the strategy is actually delivered.
You are such an eloquent advocate in this cause, Emily! The people with the power must be blocking their ears as well as hardening their hearts.
Oh you’re kind x I’ve felt so fuzzy since the surgery and my writing has suffered. I appreciate your kind words!
It’s sad to see a Labour Government lurching a bit to the right. Received wisdom apparently says that they must if they want to get re-elected.
It’s no consolation to say that any Labour Government is preferable to the Nats. I think the price is too high.
Bloody awful that people who are already living with severe problems are left to struggle on.
I agree. The desperate attempt at reelection over holding their values is abominable. I am going to do an explainer about MMP because it worries me that it’s framed as National v labour all the time.
I look forward to reading that.
Great recommendations! I would also say access to a list of all available assistance and who qualifies. I’ve just learnt about the counselling sessions reading your piece now! I could genuinely use that at the moment. I’ve also heard through whispers from others of things I could ask for. It took me years to learn I would qualify for the supported living payment as my sons carer. I’ve now just learnt that during challenging times the ministry of health has housework help. I’ve just asked for that as we’re currently support worker free and all having a significant asthma flare up. It’s hard finding the time, space and executive function to navigate it all.
Thank you for your mahi and your communication skills Emily.
I thought a Rare Disorders Strategy was already under development.
There’s been a lot of issues with this around whether it will actually be a strategy or not and whether the rare diseases community will get input. There was a meeting last year that wasn’t attended by Te Whatu Ora about the strategy. If they didn’t even attend the meeting to outline the strategy you can see why people are sceptical. It is meant to be completed by 2023 but my bullet point will stay up until it looks like mahi that includes people with rare diseases and their caregivers are included and the strategy is actually delivered.