If you’re disabled, or live with chronic illness, you will understand the importance your allied health team play in keeping you functional.
They are integral to your overall care and well being. They often become more than medical professionals, they become friends over time as they visit you at home, perhaps weekly or monthly.
You share life stories, yours and theirs. You invest in them and they invest in your care. They cheer you on when you’re kicking goals and they shed a tear when it all becomes too much.
They champion your cause with Government agencies. You trust them because they have taken the time to understand your disease and disability and the true impacts it has on your life.
You feel safe, supported and sure of your treatment plan.
Until one day……
The Phone Rings
I had a bit of a bad week last week. It was a roller-coaster of things going wrong. Our dishwasher died, we were still reeling from the Queensland floods, wrong parcels had been sent to us via online shopping, I ended up with Diverticulitis and the list of challenges kept growing.
How much more could go wrong I thought! Well clearly a lot.
I was contemplating all the crazy events impacting me when the phone rang. Actually the phone had been ringing all morning on this particular day, so I wasn’t surprised to hear it’s all too familiar tone yet again.
I looked at the caller ID as I answered, recognising it was my mobile Podiatrist’s number, well the practice number to be precise.
I assumed they were ringing to either confirm or change my upcoming home visit appointment, as is their normal procedure.
I was not prepared for what I was about to be told. With a very apologetic tone I heard the words:
“Hi Sam, sorry to bother you. We need to let you know we’ve had a resignation within our Podiatry team and have had to reshuffle portfolios. As a result we are really sorry to let you know we can no longer service your area”.
The words hung in the air for at least a minute, although it felt longer.
I loved my Podiatrist. She was my advocate, so talented in her field and we had loved sharing life stories every visit. I considered her a friend. She had cared for me for 3 years.
What was I going to do? It was hard enough finding a mobile Podiatrist in the first place, so the thought of starting the process again was just too much.
I couldn’t help but wonder about the new man she had met and how the relationship was progressing. I suddenly realised I wouldn’t find out what happened next! I wasn’t sure if I was more upset about my feet or missing out on her news update!
After thanking the caller for letting me know, I asked her to pass my heartfelt thanks on to my Podiatrist for her beautiful care. She assured me she would and we hung up.
I was in shock and it takes a lot to shock me. Part of the issue with my area not being serviced anymore is we are semi-rural. Travel times and costs are too high for many mobile health care agencies.
COVID has placed enormous pressures on the health industry with staff contracting the virus, needing to be in isolation, or others refusing to be vaccinated and not being allowed to work.
I understood the “why”, I just had no idea what I was going to do.
The Search Begins
After a much needed cup of tea, I calmed down a little and, as with any good investigation, I started with a Google search…”mobile Podiatrists in the xxxxx area”.
The list was anything but encouraging. In fact, there was really only one option meeting my criteria.
I’m provided with a Government funded disability package in Australia, called the National Disability Insurance Scheme. In order for Podiatry and other health care services to be funded under this scheme ,and no cost to me personally, the provider must be NDIS registered. This does mean limited options but it doesn’t mean a reduction in care.
Anyway, I decided to email a Podiatrist who seemed to fit my criteria, plus her website indicated she visited my area for NDIS participants.
I felt hope rising as I carefully typed an email explaining my existing Podiatrist could no longer service my area. I detailed the complexities of my rare bone disease and I attached the full medical progress report my previous Podiatrist had only just provided me with. It was an excellent report with so much detail of my overall health, my ongoing broken feet fractures and foot care needs. I was so grateful for the timing of this report given the circumstances I found myself in.
A few hours later my phone rang yet again. It was the lady I had just emailed. Within seconds I could hear the care in her voice. She wanted to help me and she even had a client she visited regularly in the lifestyle village I live in.
I was so excited! We started chatting about my disease, my needs and setting a date.
Everything was going so well. I just felt blessed. She even knew my previous Podiatrist! My prayers had been answered….or so I thought.
A Hope Crushing Question
Just as we were about to end our conversation and lock in the date for my “new Podiatrists” visit, she asked me a question about my NDIS management.
There are 3 ways an NDIS package can be managed:
- Self Managed- The participant seek providers, create their own service agreements, raise their own invoices and manage payments through the portal. The participant has complete control and access to a wide range of providers who don’t have to be NDIS registered. They can be mainstream or disability providers of any kind, so long as they have insurance and a ABN.
- Plan Managed- The participant has funding approved for an external manager/agency to be appointed to do all of the above, while having more control over decisions and access to a wide range of providers.
- NDIA Managed– The participant allows NDIA (the Government Dept) to manage the package in terms of paying providers directly and managing their support budget. The main downside is the participant is restricted to providers who are NDIA registered. While the list is substantial, not all disability and allied healthcare providers are prepared to register with NDIA as the process for them is onerous. For providers who are self employed, or for very small agencies, it’s just not feasible for them.
I chose to be NDIA managed as my health is so unpredictable and I have so many other priorities, like writing a book, my forum, blog and volunteer work, I really didn’t want to have to manage the package. I was happy to keep it all simple.
So, when my new Podiatrist asked me how my NDIS package was managed, she let out a devastating cry when I answered, “I’m NDIA Managed”.
She couldn’t take me on. She was only able to accept Self Managed or Plan Managed participants.
My hope, my answered prayer, just slipped away almost the moment it was received….or so I thought.
We kept chatting for a while, consoling each other. I was upset to have found someone so perfect only to find she was not within my reach.
She was upset not to be able to help me and for getting my hopes up. She wished she’d asked me this leading question first. She was also genuinely worried about my health, as she felt my feet would deteriorate significantly without urgent and continuing care.
As she reminded me about NDIA managed participants being restricted to the registered list of providers, I realised I hadn’t checked the list. In fact I’d completely forgotten about it, which is why I was doing a Google search.
I realised my seemingly unanswered prayer might actually prove to be answered. If I hadn’t reached out to this lovely Podiatrist, I wouldn’t have been reminded of the NDIS search engine on their portal.
Prayers Answered- Hope Is Not In Vain
I quickly started my new line of research. The NDIS online portal works really well and quickly provided me with a list of mobile Podiatrists, within a 20km radius of my home. The list also showed me who were accepting new clients.
The good news was 2 agencies were accepting new referrals.
The bad news was only 2 agencies were accepting new referrals and I still wasn’t sure if the travel distance would prevent my area from being serviced.
Still, 2 was better than none so with a quick prayer and quivering hope, I sent off emails to both agencies.
Hope really is not in vain. I knew I needed a Podiatrist and I knew there had to be a solution. I just had to do some hard work, accept some disappointments and not give up.
The next morning I opened my emails to find my answer:
To: ‘My Medical Musings’ <firstname.lastname@example.org>
Subject: RE: Mobile Podiatry Enquiry
Thank you for your enquiry
Yes we can definitely help you and come and see you for your podiatry needs.
Thank you for the plan you have provided.
When would you like a visit? We generally see that area on a Wed or a Thursday
All’s Well That Ends Well
This was my preferred agency out of the two options. Their website was professional and they had a large team of Podiatrists, all with full online resumes.
I immediately responded with my thanks and available dates. I’m so excited for my first home visit with my new Podiatrist next week. Relief really doesn’t seem a strong enough word to describe how I feel but it will do for now.
Interestingly an hour after receiving the acceptance email from my preferred choice, the other agency replied advising me they weren’t taking new referrals for my area.
So there was only one choice at the end of the day and I can’t help but feel it’s the right choice.
I decided to email Lisa, who was the lovely Podiatrist who first reached out to me but sadly couldn’t accept NDIS managed participants. I wanted to let her know I’d found someone, I’d be ok and mostly I wanted to thank her for her kindness and care. I also wanted to thank her for reminding me about the NDIS service provider portal.
She quickly responded with the most loveliest reply:
That’s fabulous news. What a relief for you.
And thank you for letting me know. I’ll be able to let other people know too 😊
All the best, Lisa
My job is done. I love being a patient advocate. I was so pleased Lisa will now refer other people in my situation, who reach out to her but are NDIA Managed, to a mobile Podiatrist agency who are NDIA registered and service a wide geographical area.
All’s well that ends well. There are such beautiful people in caring roles. We may sometimes have to be patient and keep looking to find the right solution for our own situation, but we never need to lose hope when our needs are real.
If you are struggling with a seemingly hopeless chronic illness situation, I’d encourage you to join a support forum, like my group, Medical Musings with Friends, or others set up for your specific disease.
Often these are run by Patient Advocates, like me, who will be delighted to work with you one on one, to persistently find a solution to your need.
Remember you are not alone in this crazy chronic illness journey.
Coming Soon….My book “My Medical Musings”, is being published by Imaginewe Publishers. Pre-release sale will be available in March 2022
If you’re looking for genuine support, care, understanding and friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic and complex diseases, who truly understand the daily challenges. A warm welcome awaits.
If you would like an audible version of my blog, please check out my Podcast, Medical Musings With Sam