September 2018
FH RESOURCES
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Websites:
Find an FH and Lp(a) Specialists: Useful for interstate or overseas relatives who need to be tested for FH or Lp(a). FHAN Brochures:
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FH – A CONSUMER PERSPECTIVE
When I first moved to Western Sydney I didn’t know anyone in my street. It was a small cul de sac and an unfamiliar environment. The second day in our home, I found out the house next door had been broken into overnight. I had a wife and young daughter, and I made a few immediate decisions. We installed an alarm and had security screens and deadlocks installed on the windows. A few weeks passed and we slowly started to know our neighbours. Faces now had names and stories, the guy across the street was a mechanic working for Holden, two doors down was a primary school teacher, there was an elderly couple on the high side next door with an old labrador, and a dozen others I could describe.
Most knew about the neighbour’s house that had been broken into. We all felt vulnerable, even though only one home was impacted. We started to keep a closer eye on our street, connect more and everyone did the little bit they could do to make our street safer. The mechanic had a great eye and ear for unfamiliar cars, the elderly couple were home most days and would often sit on their front verandah or be in their front garden. I’d often get the daily report from them when I got home from work. My wife used to run in the early morning, also patrolling and noting the unfamiliar or the different.
Our street friends started exchanging details and set up a Facebook page. We would let each other know when we were planning to go away and for how long, who would pick up packages and collect mail, if people at school were talking about dodgy door to door salespeople being in the area. Posts were purposeful and helped us all – many sets of ears and eyes looking out for each other, and people sharing useful information we could all benefit from.
I tell this simple and very familiar story to show that when the whole street worked together, the street felt safer and was safer – the outcome we all wanted. We worked together as a team doing the bits we were each good at, achieving far more collectively than any of us could have achieved on our own with locks and alarms.
The FH Community can be much like my old street. The first step to knowing our “FH Street” is easy, signing up to the National FH registry. It does not take very long and further information can be found on the FHAN website. Working together as a community, we can add immense value and help improve outcomes and experiences for FH patients.
| I am a patient with FH, my wife has FH and my two young sons have a severe form of FH. If something brilliant has happened with treatment, medication or research, if changes to best practice care are being made, if new things are on the horizon, we don’t want to know about it……. we absolutely NEED to know about it. There are many people who are carers, consumers and clinicians who are doing fantastic work with FH. If we can connect and work together, the great work will benefit us all. |  |
I have been a health manager and administrator for almost 20 years. I have skills in knowing how to navigate the health system, understanding the consumer perspective and knowing how to develop very strong patient centred models of care with a focus on improving outcomes and experiences for patients. Over the last 3 years, I have sat with some of the leading FH clinicians across this country and the globe. I have spoken about what it really means to live with FH. When I sit with our policy makers, researchers, clinicians and pharmaceutical companies, I want them to never forget that at the end of every blood test, prescription, clinical trial, hospital waiting list, appointment or decision they make there is a person with a story relying on them. And guess what, these people desperately need us to speak, share our stories and do our bit to help. Without us telling them what matters and is important, they can’t work out how to help us get the best care. The consumer voice is the most important in the room of every meeting I sit in.
If I was a graphic designer or a website wizard, my expertise on how to improve online accessibility to some of the resources or information for the FH community could really help. If I was brilliant with social media and corporate communications, a few hours of my time could make the experience of newly diagnosed patients so much less stressful, making sure it was easy to get to the right information, the best information, at the right time.
If I could develop apps or was great in the software design world I might come up with a simple FH app to help patients to take their daily tablets, remind when it was time for blood tests or check ups and enable clinicians to post updates on the newest developments in FH treatment.
I may be very valuable to my FH community by dropping off FH updates and pamphlets to local health care professionals and GP’s, handing out information at local fetes or community events, or reading the newest FH information as part of a consumer council to make sure it makes sense to real people and families living with the disease.
If you wish to find out more information or would like to find out more about helping our “FH Street” please contact fhwa@health.wa.gov.au.
Luke Elias
FH Patient
September 2018
You can read other patient stories on the FHAN website or contribute your own by emailing us.
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