Apr 16, 2020, 3:53 PM

KingfisherThe whole world has changed, and these are unprecedented and uncertain times. The lockdown has led to challenges we never expected to face and getting help to our most vulnerable has never been so important. Despite these challenges, we hope you have been keeping well within your bubble and able to find the readjustments needed to ensure you receive the care and support you need.

Here at Rare Disorders NZ we have been busy asking, listening and providing a voice to the Government to ensure the needs of people with rare disorders are included in their planning. This was only possible with the engagement of the people out there facing barriers and taking the time to share their stories so thank you! I hope we have also managed to help some individuals with specific issues during this time despite the limitation of our resources.

Please continue to let us know any issues you are facing during this lockdown, email us at enquiries@raredisorders.org.nz

RDNZ commends the Government on providing our organisation with a direct contact within the Ministry of Health so we can effectively communicate the challenges facing our group. Through this recent link with the MOH we have been able to share the main concerns facing people with rare disorders.

Several key areas of concern from our groups included access to food and essential items, to flu vaccine for main home caregivers and siblings, to having access to their routine health treatments as part of their specific care plans and to access to medicines plus fears over being left behind as an at risk population if they did need help in hospital. 

MOH have confirmed that public health and disability system are still open for business and all vulnerable people can and should be able to access the medical care they require. MOH have stated that it is important that people do not neglect potentially serious health conditions because of concerns around COVID-19 and issued the following statements:

  • Anyone who needs to see their GP or pharmacist, they should call ahead and discuss their needs.
  • MOH can confirm that there is NO prioritisation of care. All hospitals are providing the continuation of critical healthcare. Emergency departments are open, with measures in place to protect against COVID-19 transmission. Each hospital may do this differently. The number of people entering may be limited (eg a patient may not be able to have the whole family with them), staff will be wearing protective equipment, and there will be physical distancing. Stricter visitor policies may be in place. Hospitals have varying capability and capacity, so specific treatments may be handled differently in each hospital. Some hospitals may be providing telephone or online outpatient appointments. Anyone in a critical situation, should call ahead to the hospital.  
    - Travel for acute or usual care for chronic conditions is regarded as essential travel.
    - If you require prescribed medicines, pharmacists are now limited to providing only one month's supply. There is no change in the way prescriptions are issued, just a change to the amount of medicine able to be distributed by the pharmacy for each prescribed medicine. PHARMAC made this change to pharmaceutical schedule to address issues around stockpiling medicines. Pharmacists are still able to make exceptions to provide more than one month’s supply when people live remotely or have difficulty in getting more regular refills.
    - The Ministry brought forward the influenza vaccination scheme this year - and people with underlying conditions are prioritised to receive vaccination. We have highlighted the fact we ask for all family and main carers (plus siblings) of our most vulnerable be offered flu vaccine before the general public and await a response! People should discuss availability of the flu vaccine with their GP.  Priority groups will have first access to the flu vaccination up till 27 April (after that, it will be available to the general public as well).

We ask for visionary leadership and policy change following lockdown. Fair for Rare NZ campaign is temporarily on hold, the RDNZ team is continuing to develop materials to send to our collective when the current situation has eased. RDNZ is creating an MP Liaison toolkit to enable people to share their own stories to call for Fair for Rare, as well as guidelines for speaking with media.

A petition for a National Rare Disorder Framework has been launched and we will send out more information about this in the coming weeks along with sharing our action plan and toolkit with our support groups next month.

It is time to take rare disorders seriously to ensure equitable health outcomes for everyone. Inclusive planning saves lives, reduces social and health impacts and offer economic savings- so why not do this?

Finally, please stay safe and stay connected during these later stages of lockdown and remain kind to yourself and other bubbles - together we are strong!

Ngā mihi

Lisa Foster

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