Rare Disorders NZ: April update
"Upon arriving at a hospital for any medical support, nearly every staff member has NO IDEA what they are dealing with."
Chief Executive's update
The 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 providing a voice to the Government to ensure the needs of people with rare disorders are included in their planning. We wrote a letter to the Prime Minister and Ministry of Health on 9 April and have continued to communicate the main issues facing our collective group. This would not be possible without people willingly sharing their concerns and the barriers they are facing with us and I thank you for doing so. Many explained the impact of increased stress and anxiety facing them during lockdown and this led to us holding our very first Resilience Webinar last week. Thank you to everyone who took part - you can access the recording on our website, details below.
We have been assigned a direct contact at the Ministry of Health and they have agreed their communications this week will include two main points:
1) That there is no prioritisation of hospitals care (against people with underlying health conditions/vulnerabilities);
2) Doors to community ‘home-based’ care and primary care services (GP, nurse) remain open so vulnerable people can and should still access them if they need to do so.
We have also ensured people remain informed of important initiatives such as Countdown priority shopping, Student Volunteer Army food deliveries and household and pantry essential Care Packages offered through Carers NZ. These practical measures throughout the country have been vital lifelines to our most vulnerable and go some way to preventing people falling through the gaps.
If you are still facing issues please let us know by emailing firstname.lastname@example.org so we can liaise with Government or link you to the appropriate service or professional. Some specific areas that have come through to us include:
- Inability to access normal health services or routine health support as part of specific care plans (primary care, nursing support, support workers, etc);
- Virtual consultations that are proving insufficient for needs (lung function or neurological testing, etc);
- Food supplies, flu vaccine access (also for main carers) and medicines access.
Our current Covid-19 crisis highlights the importance of having a Government commitment and clear communication which includes people with rare disorders. As a collective, often with chronic and uncertain health conditions, the need to be taken seriously as a group has never been as important. Rare Disorders NZ will continue our advocacy work to pull us all together as one unified voice and to push for a system that is ‘Fair for Rare’. A system in New Zealand that includes people with rare disorders within its planning and considerations as we regain our national rhythm. This fact is echoed within the clinical world and as explained by a clinical pathologist.
“There is a real need to develop a National Framework and clear clinical pathway so people with rare disorders can get their needs met.” Dr Cherie Staynor, pathologist, Otago University
We have initiated a petition for a National Rare Disorder Framework and 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.
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!
Kia kaha, noho ora mai
COVID-19 - resources
Here is a list of the current resources on our website:
- Resilience webinar for the rare disorder community - hosted by RDNZ and Tracey Hancock, a Life Coach who has herself navigated through health challenges and faced her own fears.
- Open letter to the Prime Minister on behalf of the rare disorder community
- New website for carers from our partners in the Carers Alliance
- Ministry of Social Development update
Fair for Rare NZ campaign
On Rare Disease Day in February, Dr Liz Craig MP launched the Fair for Rare NZ campaign at Parliament. The event was a huge success, attended by more than 100 people including support groups, health professionals, researchers and MPs. This campaign launched a call for a National Rare Disorders Framework, details in the booklet on our website.
While the next stage of our Fair for Rare NZ campaign is temporarily on hold, the RDNZ team is continuing to develop materials to send to groups when the current situation has eased. We are 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.
Fair for Rare in the media
Rare Disease Day media was extensive, with four interviews with our CE Lisa Foster and two mums of children with a rare disorder. These interviews focused on the need for a National Rare Disorder Framework to improve healthcare and wellbeing for people living with a rare disorder.
- TV3 Newshub 6pm News
- TV3 Newshub The AM Show
- Newstalk ZB The Mike Hosking Breakfast Show
- Radio New Zealand National Programme – Jesse Mulligan Show
NZ Voice of Rare Disorders White Paper
In November 2019 RDNZ conducted a survey to highlight the barriers within the current health system for people living with rare disorders.
The NZ Voice of Rare Disorders survey had almost 300 respondents, making it the largest survey of the rare disorder community ever in New Zealand. Patients, whanau and carers shared stories of the challenges they face to access healthcare, as well as the impact of living with a rare disorder on education, employment and other areas of life.
Some of the clear barriers to access to vital services and supports are demonstrated below:
- Three quarters of all respondents have some or a lot of difficulty with seeing, hearing or moving;
- 80% have a decrease in income, and 30% are unemployed because of a rare disorder;
- 35% often felt unhappy and depressed (at the time of the survey);
- 31% felt they could not overcome their problems (this is concerning as current access to mental health support is very challenging as evidenced in the qualitative section);
- Over 60% felt communications and information exchanged between services was poor;
- 40% cannot afford the recommended treatment (rehabilitation equipment, home care).
The results provide a benchmark for future research as well as comparisons with the experience of people living with a rare disorder in other countries.
Read the full Voice of Rare Disorders White Paper
International connections strengthened
Lisa Foster is now a Director on Board of Trustees for APARDO and has strengthening connections across the Asia Pacific region for rare diseases. APARDO has links with Rare Disease International, Eurordis and WHO.
The three-year action plan includes a commitment to increase and share collective knowledge, with comparisons of countries initiatives, projects and National Frameworks including the activities relating to the APEC Rare Disease Action Plan.
Lisa received a scholarship to attend the Rare Diseases International 6th Annual Meeting and World Health Assembly (WHA) event in Geneva in May. This is now a virtual meeting and the WHA event is deferred to 2021.