Guest Post: On Advocacy

I've had the opportunity to meet with several different "Addies" over the years, and over the world as well. Wendy was one of the gals I had the pleasure of meeting a few years ago. She graciously opened up her home to me one weekend while I was living in Malaysia.

Due to some of her own adventures, she recently required medical treatment outside of Hong Kong. She went to Australia, where Des, another Adrenal Insufficient lady, graciously opened up her home. During Wendy's visit, the two of them decided to host a party. They invited all the Addies within traveling distance to join them.

Blue butterfly tiaras for the party!

Given the unpredictability of our disease, the party did not quite go as planned. They were visited by not one but TWO separate ambulances as two of the ladies slipped towards an Addisonian Crisis. If you're going to crash into a crisis, you might as well do it in the company of others who share the disease, right? Safety in numbers?

I would like to share the words of Des. She coordinated the meeting in Australia, where one of the crisises was caught on film.

All information and photos are shared, with permission, in an attempt to raise awareness.

A POST ABOUT ADVOCACY 

This whole experience that Wendy and I have had with Deb, advocating for her and taking this lady under our wing has really opened our eyes. We were just really lucky that we were in a position to help her as this is not always easy because of our geography, time, and local knowledge. We were fortunate to have all three things in place for us to be able to help Deb. 
To say that Deb had fallen through the cracks through the public hospital system in Australia is an understatement. She had not only fallen through the cracks but had been left dangling with the weight of all her medical issues about to pull her down into the abyss with no way out. Moving away from the city of Brisbane to a small coastal town on the Sunshine Coast, she needed to find a new GP and specialists. Unfortunately she landed upon the doorsteps of incompetent and uncaring doctors who had no idea how to treat her or an understanding of how her complicated history would put her in danger. Consequently she suffered many crises because she has been unstable because of the stupid stupid treatment she had been receiving from an incompetent Endocrinologist and other specialists over a period of 4 years but had no idea that the treatment was so bad. It was not until she stumbled across two support groups that have enabled her to reach out for help from people who live the disease, I don’t know that she would have survived. 
We all need someone in our corner fighting for us and if family or friends are unable to do this for us, we must reach out among our fellow Addys for help, and not be embarrassed about asking for help. This brings me to the topic of buddying up with other Addys in the area where you live, so you can have someone “have your back”. I know this is not always possible but worth trying for. I am lucky to have now met several Addys near where I live and Deb is one of them. Because this may not always be available to us, it is up to your National AI organisation to start work in this area, by at least providing a set of guidelines about the pathways to good care that you can follow yourself. 
The steps that we followed to help Deb receive good care unfolded after her crisis at my home when we gathered members for a small get together and the swearing in of a new Australian & New Zealand association, as the previous ones folded in both countries. You may or not already know, but we had two of us go into crisis that day, Michelle being so distressed and harbouring a tooth abscess infection that she didn’t know as brewing, also went into crisis. (it presented itself full blown a few days later) Deb was carted off to Nambour Public with her husband and Michelle carted off to Noosa ED. with myself in tow. The treatment was: Nambour pathetic. Noosa brilliant. 
Deb being stable by the time she arrived at Nambour, saw her arrive in a very busy ED, with a doctor deciding as she was stable left the nurse to tell her she can go home. He didn’t even see her, no bloods done, no examination. She had received fluids by the ambulance team but that was the extent of her treatment. Her medical records are there, which indicate that two weeks previously she was admitted through this ED in shock and passing black urine. She has some gastro-intestinal issues that were discovered when she was there, but she was sent home after only one consultation with the Endocrinologist and GI team, with no follow-up appointments made and no idea what to do next. She received a letter in the mail giving her an endocrinology appointment 6 weeks out! And still no news about her GI assessment or appointment. This is NOT good care for someone so ill. 
So it is no surprise that being sent home from the ED just about pulled her down into the abyss, still unstable after the crisis at my house, not knowing where to go from there, Wendy and I went to visit her the next day as we were very worried about her. Over the past month or so we had encouraged her to try spreading her doses out over the day as the dose she had been on for years was a total of hydrocortisone 40mg a day, 20 in the morning and 20 at 2pm! A ridiculous regime to follow and no wonder she wasn’t well! She felt some improvement spreading her doses out 4 times a day and for the first time in years she felt she could achieve small tasks, but she got excited and overdid things a bit too much. She had never received information about stress dosing and got into trouble so much when she was sick. Nobody ever advised her about this and not having the energy to research her own disease, it was lucky that she discovered the groups. 
With all of this she was still not doing well, and it was clear to Wendy and I that given her gut issues she may well be not absorbing or metabolising her oral medication well and the situation was getting desperate. We talked to her about trying subcutaneous injections to see if that helped and it did to some extent, stopping her diarrhoea and nausea. Wendy and I provided her with a few extra Act-O-Vials and small insulin needles that we use because we have pumps. However, in doing this, she really needed to have a GP appointment for follow-up within the next few days because this was new and not prescribed treatment for her. So, I organised a long appointment in two days, with my GP on the coast who I knew would treat her kindly and give her the time. Unfortunately the stress of meeting a new doctor and still being on the edge after her crisis just a few days before she had another crisis in his office and he quickly administered the Solu Cortef injection. It was obvious to this doctor that Deb needed so much help. and while she rested lying down in his office we were able to go through her medical history with him for her, as earlier that day, Wendy had produced a “body map” of her history that was easy to read and understand. He was alarmed at some of the treatment glitches, raising his eyebrows and shaking his head. His words, she really needed a multidisciplinary team to look after her and one specialist who could pull it all together for her. He agreed that waiting six weeks for a follow-up endocrine appointment at the public hospital was certainly not good enough. She had private hospital insurance therefore going private was the way to get better treatment. The trouble is on the Sunshine Coast, not being like a big city, gathering a group of the right specialists may be difficult. 
He was able to eventually find her a good Physician (what may be referred to an Internal Medicine Doctor overseas) at the Noosa Private hospital but she would need to go though the ED for bloods and stabilisation before being admitted. This long appointment ran overtime, but at no time did he rush her out his door, holding her hand and talking to her, telling her to look into his eyes and reassuring her that he would get her the help that she needed. 
The ED at Noosa hospital lived up to its usual reputation as being a very good place to land. She was treated well in there and admitted to the ward after a few hours. Wendy and I were with her until her bed was available. 
She was seen by the Physician the next morning and this doctor, admitting AI was not something he had come across since medical school, listened to Deb, read the “body map” about her medical history and remarked how amazingly put together this was and asked who had prepared it. (Wendy needs to expand this into a business for herself!) After listening to Deb he approved her subcutaneous injections as treatment for her AI, talked about all her medical issues, said he would gather all her records from the Nambour Hospital, remarked that she had fallen through the cracks terribly, and would gather a good team of specialists for her. He said he would also phone and speak to my Endocrinologist who is no longer working on the coast, about the possibility of putting her onto the pump. (If not possible to achieve a team on the coast, he would organise a team for her in a Brisbane hospital) Meanwhile there were some tests that he would organise for her while she was in Noosa. She was so happy when we visited her yesterday saying that this is the first time that she feels she is getting proper treatment, and that this doctor was extremely kind and sympathetic to her. Even though he admitted he didn’t know a lot about AI he was going to learn about it and help her. This is probably one of the most important things a doctor can do for a patient, admit that they don’t know it all, and willing to learn and work with you. Meanwhile we must all try to be the best educated person that we can be about our disease.
  

STEP BY STEP

Pull together your medical history and prepare it in easy to read format. Headings, Bullet point, starting at your most recent history with dates and listing down from there. 
Include any relevant family history (mother, father etc), allergies, surgery, medications.
Source a good GP / PCP. Ask around your area who is considered good. The pharmacy might be able to suggest also.
Schedule a long appointment 
Open the discussion with “I want to find a doctor who can work with me with my disease as I understand I am a very complex patient and I know my own body. If you don’t know about AI, if you are willing to learn and work with me I would be very happy to start there.” 
EDUCATE YOURSELF AS MUCH AS POSSIBLE ABOUT YOUR DISEASE. 
This enables you to hear the alarm bells going off when you are being told something that doesn’t sit right with you. Challenge them on this. 
BE PREPARED 
Arm yourself with little snippets of information in condensed form that you can show your doctor about your disease. Go to your support groups or national organisations and find the accredited information that they have available for patients to print out and keep in their file for when going to the ED or hospital. 
Ask your doctor to provide you with an Ambulance Directive. That is a letter than from your doctor about YOU and your disease and what treatment you need in a crisis. 
DO OBTAIN an emergency injection kit prescription (Solu Cortef Act-o-Vials, needles and syringes) from your doctor, and DO NOT take NO for an answer. You must insist on having this and know how to use it, and teach those around you how to use it. In crisis we may find it difficult to administer to ourselves as we are often too shaky. You must be prepared to act quickly, therefore don’t leave it too late to inject yourself if you are alone. If necessary print out documents from an endocrine society source (give to your doctor) that states all AI patients must carry an emergency injection kit, wear a medical alert bracelet, and a steroid dependent card. 
Take someone with you to appointments or the ED who can stand up for you and insist on proper treatment and care immediately. 
PUBLIC HOSPITAL ADMISSIONS - BEFORE YOU LEAVE
Ask about follow-up appointments - you may be told that a letter will come in the mail with appointment date etc. 
Ask for results of tests that were done while you were there. Obtain copies if you can. It is your right. 
If you feel uncomfortable leaving with no plan put into place about your ongoing care, speak up. 
Make sure you understand all medications you have been given and what they are for. Ask for written instructions to go with you about medications. 
If you have received unacceptable care, and feel uncomfortable about your discharge arrangements, go back immediately to your GP/PCP as your care MUST be ongoing and without delay.
Deb is doing better, and through the combined advocacy of several other Addies, her quality of life shall significantly improve. She has already been switched off of oral medicine and began sub-cutaneous injections of solu-cortef. She is actively pursuing the cortisol pump as a method of treatment to help stabilize her Adrenal Insufficiency.

Deb and Wendy.

Deb and Des.

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