Tuesday, 14 January 2020

How do we navigate our health care system?

This is about a patient I saw at the community clinic. We are running a community clinic for women in sex work in Swathi Mahila Sangha, a community based organisation in Bangalore. With partnership with Swasti, we at PCMH Restore Health are available in person once a week (Fridays) at that location and the women come there either with the intention of seeing us or for availing other services like banking, loan etc and come to know about us and then see us.
We started this community clinic to understand the community, their health needs and also understand what their expectations are. The experiences in this clinic I believe will help us find more providers in that area and also know what works and what doesn't for navigating the current primary care system in Bangalore.

Last Friday, a women was brought by the outreach worker because she thought she is seriously not doing well. She was right.
The woman is 36 years old, very thin and had lost that weight in the last 3 months and now came with extreme weakness in all limbs and tremors of all limbs. Her heart rate was racing with 130 beats per minute rate and BP of 140 by 100 mm of Hg. Systemic examination was normal apart from spleen being palpable. She lost her younger sister in a terrible accident/attack recently and that has been traumatic for her. She also used to consume a lot of alcohol everyday since the past many months and her last drink was 2 weeks back. She stated that from past one month the amount of alcohol she used to take had reduced. She has burning sensation and pain in the palms, mild proptosis of the eyes (bulging out). She was recently tested for HIV and was found to be negative. My suspected diagnosis were
1. Hyperthyroidism
2. Anemia and Beri Beri due to thiamine deficiency given her habit of consuming alcohol and poor nutrition.
I did a vaginal exam just to make sure she does not have cervical cancer and there was no abnormality.
She had visited 2 doctors in private and government clinic/PHC where she was treated for scabies as there were skin lesions and she had severe itching. She was also tested for blood sugar levels and blood counts where she had mild anemia. It was strange that she was left at that and was not thought to have other issues. 
Because she has problem with finances I wrote a letter to Victoria hospital and sent her in the ambulance that evening hoping they would admit her and evaluate what is the root cause and in that way will also be started on initial treatment from where I can take up as a primary care physician.
Because of her drinking problem I also wanted to get ultrasound abdomen to understand the status of her liver and probably an ECG as well.

But that evening they didn't admit her, instead asked her to get certain blood tests done. That's where the problem starts. She doesn't have a ration card which is what is required to get the tests and admission done free of cost at a Government setting. She didn't have the money nor anybody cared to bother why she didn't get the tests done and she returned home. So the next day, I requested the outreach worker to accompany her to help her navigate.
Due to the previous night's experience the women already had some resistance to make a second visit though she was so sick that she walked with much difficulty. We had to talk to her to make her understand that she and her mother would have support by the outreach worker that day. I also sent a list of investigations that I wished to get on whatsapp to the outreach worker. By evening when I could connect with the outreach worker, I learnt that they had given samples for testing, reports were awaited by that night and that they are returning home!

I was furious to know that she was not admitted and not completely evaluated. So went there in person to request the resident there.
Upon reaching with a friend who works in the ENT department there (who helped me!), we understood that they had paid 600 rupees for certain tests and they couldn't get certain others due to financial constraints. Again because they didn't have ration card!

I remembered from my experience in KR Hospital, Mysore which is a similar hospital to Victoria in Mysore, that in cases like these, we get a signature from the CMO (Casualty Medical Officer) permitting the billing person to make it free as she can't afford. So we did the same waiting at the CMO office.

Then requested the resident to admit her so that she can be started on Thiamine injections, all investigations including ultrasound, ECG etc can be done. He was kind enough to do so. Further onwards, we realised for every investigation that was written, the billing person asked for money and they had to get a signature from the CMO to get it free. It took 3 days for the family to understand this process. And the process of collecting reports, getting blood tests done, they navigated with the help of the fellow patient's relatives in the next bed. I kept in touch with the resident who was kind enough to share his number to understand what was being investigated, taking Neurologist's opinion, Nerve conduction study for her tremors, burning sensation. Looks like it is all due to alcohol dependence, and nutrition deficiency. I'm still not sure if the Thyroid function test was done, and am hoping to see her coming Friday and get it done if not done.
She will require supplements, and majorly close support to help her refrain from consuming alcohol.

This incident brought up a lot of anguish, memories from my previous experience in huge Government facilities and questions in my mind.
It is just extremely difficult to navigate the current gigantic system in Government hospitals. Not just for patients who need the care most but also doctors like me.

Where is the space for people like her to get all the investigations done in peace. To get the right treatment? To walk in without fear of having being cared for or having to shed all the money they might have.

Talking to the people at the hospital in the above interactions felt like people are not after all bad. They care. But the processes are just too flawed. Not thoughtful. Not for making it easy for anyone. Especially for the people most in need. If she wasn't admitted and investigated, where else could I have gotten all the tests done? Without money? These questions are haunting me. Because it's not one person, there are people I see everyday getting sub-standard care due to issues with these processes.
There is little interaction between people in these big institutes and practioners in the community. Be it Government or private practitioners.
I believe if there is improvement in the investigations capacity of first and second level Government hospitals, a lot of the burden on the tertiary hospitals might drop. Also we need a management/Ombudsman at these facilities to review the shitty processes and make it more easy for everyone.
Ration cards are meant to make it easy for people to access care. That doesn't mean lack of it should make it difficult/impossible. Afterall, is it so difficult to understand that anyone who's accessing care at the Government facility actually do so because of their inability to pay loads of money?

Also what if the billing person is thoughtful enough to guide the patients what to do when they don't have enough money? Work culture needs to be that of making it easy for the patients and deliver the best care. But work culture is the last thing that's discussed or thought of in our medical training. I remember how different this was at SVYM. Where everyone worked for the patient. With a little thoughtfulness, navigation becomes so much easier. Co-ordination is of utmost important when it involves so many people to care for a patient.
Yet there is very little reflective cross talk that happens between different people in such hospitals. And let's not blame the numbers of scale for this.

Looking forward to build relationships with the providers at these facilities to build a better navigational system. If you're a provider who relates to what I'm talking about please get in touch with me to build this together. (No matter where you work, Government/private/NGO). Any kind of help would be much appreciated in this complex system.

- from a motivated yet frustrated primary care physician.