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Currently, I pay my entire medical expenses out of pocket. This is a significant part of my income. The part that I don't like is that I pay tax even on the part of my income that I spend on my medical expenses. This is not fair at all.

This struck me as weird when I realized that if someone donates a sum of money to a charity, he or she gets exemption on the sum donated under section 80G. Now, there is an exemption for medical expenses for an individual under section 80DDB. However, this exemption is capped at Rs. 40,000 per year. I am, not for a second, arguing that the exemption under section 80G for donating to charities is wrong. But, taxing money used for medical bills is absolutely wrong. There should be no cap. Period. What is the argument for a cap? Someone, please enlighten me.

We have no healthcare policy worth mentioning in India. Ok, we have Aarogyasri but that is only in Andhra Pradesh and that too only for the very poor (on paper at least). Its not like people who can afford their healthcare expenses can do so for ever. The money that I spent on taxes year after year could have been saved and I could have bought the NxStage System One, for example.

There is so much wasteful expenditure that the government incurs every year. The Haj subsidy, for example. Even true Muslims resent this and point out that the Holy Quran forbids this. Then there is the money that is spent on implementing various government schemes named after one politician or the other. Remember Mayawati's monument mania?

Any amount spent by an individual on his health (backed by a proper prescription and bills) must be totally exempt from Income Tax. I have a lot to say about the duty on importing medical equipment or consumables but that topic deserves another post.

It is high time the government woke up to this stark reality. It should really get its priorities right. If you cannot make life easier for us, at least don't make it more difficult!

... http://www.kamaldshah.com/2011/01/tax-exemption-on-medical-expenses-when.html

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Saturday, 01 January 2011 10:30

Organ Donation Drive

Written by Steve Bone
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From July 2011 anybody applying for a new driving licence in the UK will be asked a question to donate their organs in the event of their death, as a means to increase organs donated.

This question exists on the DVLA application forms now, but it is optional, yet despite this over 8m have provided consent. The  new ‘method’ will require an answer either as ‘Yes, I wish to become a donor’, or ‘No, i do not want to answer this now’. This is a pilot scheme to try and increase numbers of donors, and if successful will roll out to other routes such as passport applications.

At the present time approximately 27% of the UK population are registered as donors, set against much higher numbers who claim, through surveys, to want to donate their organs, but have ‘not got around to registering’.

In this country we still have over 1000 people a year who die waiting for some form of transplant.

The public health minister, Anne Milton, suggests that prompted choice processes in the US have taken donor rates from 38% in some states to over 60%, and it is felt the same can be achieved here. However, the BMA has continued its campaign  for presumed consent so proposing dramatically changing the donor scene. They renewed their call for presumed consent just last month. I’ve blogged on this before, so wait with interest, but until presumed consent ever makes it through parliament (assuming it gets discussed again), we must pursue other avenues for patient care to make dialysis a better respected option.

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... http://mydialysis.co.uk/blog/2011/01/01/organ-donation-drive/

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Saturday, 01 January 2011 10:12

Optional Thursday

Written by Steve Bone
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On the unit where I dialyse a couple of patients seem to think that they can get away with dialysing twice a week, and Thursday is an optional day. Most of the other patients note this, but apart from grumbles to the nursing team, not much else is said. In fairness to the nursing team, they do explain that this is not sensible, to them on their next session, but call it ‘water off a ducks back’  or ‘in one ear and out of the other’, it seems to have no effect. In truth, some more serious education is required for people before they ever start dialysis, rather than just dragging the patient kicking and screaming into dialysis. Consider the  one who recently joined the unit who is utterly convinced she will have a transplant and will not have a fistula, ‘over her dead body’! I wish her well and hope she does get a transplant, but her lack of knowledge shapes her opinions about dialysis, and that this is a means for her to stay alive, which she does not seem to understand.

Better education at the outset will help to shape the attitudes of patients about why they need to ‘do their time’ and coming off early, or missing sessions is not good for them. Also, better education at the outset will help the nursing teams, and also help with moving people through to some ownership of their treatment, maybe even self-care. So, at the point the doctors ‘diagnose’ the issue and ‘prescribe’ dialysis either there and then, or in a period of time in the future, a referral to training for the patient is required, and if suitable, home training, avoiding the patient ever getting on to the ward.

In the meantime, it seems optional Thursday will continue!

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... http://mydialysis.co.uk/blog/2011/01/01/optional-thursday/

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Well, you must excuse the pompousness but I am really thrilled!

My article, titled "Taking the Uncharted Path", got selected and published in the American Journal of Kidney Disease's (AJKD) January 2011 issue!

It all started with an email from Dr. Sidharth Sethi, Pediatric Nephrologist at AIIMS, New Delhi in July this year. He told me that AJKD was inviting "essays of fewer than 1,600 words that illustrate some facet of kidney disease through a personal story".

I then wrote this article where I described how I got on to daily nocturnal home hemodialysis. The article went through a series of edits, some suggested by the editorial team at AJKD to make it make more sense to a global audience which is unfamiliar with the Indian nephrology context.

Finally, about a couple of months later, I was told that the article was selected! And now it has finally been published!

This is the link to the pdf version of the article which actually appears in the hard copy of the journal and this is the link to the online version of the article. This is the link to the online version of the journal's January issue. My article is under the section "In a few words" towards the bottom of the page.

... http://www.kamaldshah.com/2010/12/my-article-gets-published-in-american.html

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Tuesday, 28 December 2010 20:53

NephroPlus launching second center

Written by Kamal Shah
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NephroPlus launches its second center tomorrow. This is a big step. So far, we had one center. All efforts were focussed on that center. Suddenly, now things become more complicated. Managing operations in two centers will bring more challenges. Catering to patients in multiple centers, making sure their every need is fulfilled, making sure the best possible care is given to them. 

The founders of a company are usually very passionate about what they are doing. The challenge is to make sure the same passion percolates down to everyone else in the company. The top management is rarely the face of the company for its customers. So, it is important for the management to make sure every single individual in the company works with the same motivation and zeal and has the same amount of passion for the job as them. This will be the main challenge for us at NephroPlus as we expand to truly become a 'chain' of dialysis centers. 

Tomorrow, the 30th of December at 10 a.m. Please do come and grace the occasion. We would be more than happy to have you!

... http://www.kamaldshah.com/2010/12/nephroplus-launching-second-center.html

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Sunday, 26 December 2010 08:01

Does a chronic disease really change perspective?

Written by Kamal Shah
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I met with a few friends from engineering college a couple of days back. We had a great chat and caught up. I was meeting two of them for the first time after college, more than thirteen years later! One of them had undergone a heart transplant a few months after passing out of college. I was intrigued by his story. Here was a real fighter!

Vinay, one of those at the dinner mentioned how he thought that guy and I were really inspirations to him and how both of us looked at life in a very different way. We looked at the big picture and were not bothered by the little problems in life. He asked us if that was true. I nodded hesitantly. I wasn't so sure! It wouldn't of course, be politically correct to say it was not true. We are supposed to be really strong people. We were supposed to be the courageous ones. We couldn't care less about the petty things in life. Right?

I am really not too sure!

I thought about that on and off over the last couple of days. I realized that, at least in my case, that was not completely true. I still bother about the small things in life. I still worry about what others would think if I did this or that. It was much worse until a few years back however. I was constantly doing things others expected me to do. I had set certain standards for myself and I was constantly trying to measure up to them. Even though I was not enjoying it. Just because people expected me to live up to them.

Then I had dinner with Chetan, my best friend, my guru, my bro. I can hardly forget that day. At the bar in Taj Banjara. I was sipping a mocktail and Chetan, a beer. I told him about how suffocated I felt living this life. And then he told me those words. The words that changed my life. "Kamal", he said, "live your life like you are the center of the universe. And as if everyone else is revolving around you." He gave me an explanation too on what that actually meant.

I thought hard about this after and it made so much sense. Why was I constantly seeking approval from others? I must 'get a life', so to speak!

I was a changed man.

... http://www.kamaldshah.com/2010/12/does-chronic-disease-really-change.html

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Sunday, 19 December 2010 19:11


Written by Kamal Shah
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There is a legend about Queen Victoria offering a reward of 100 pounds sterling to anyone who could deliver to her the fresh mangosteen! It is such a delicacy.


I first ate a mangosteen at a wedding. It was one among many other exotic fruits being served at the dinner. I loved it at once. The waiter would slice through the outer rind of the fruit and then open it up and serve and we took a small spoon and scooped out the pulp. It had a sweet and slightly tart taste and was delicious.

I tried getting the mangosteen in many fruit shops in the city but nobody seemed to have it. The next time I got to have it was at another wedding! After a few such weddings, I was crazy enough about the fruit to actually walk up to the caterer for the wedding and ask him from where he got the fruit. He told us he imported it from somewhere. I asked him if he could sell some to me. He said he would when he got them the next time. Of course, he forgot about it soon.

A year or so back, I checked at Pure 'o' Natural, the fruit shop opposite L V Prasad Eye Institute in Banjara hills. They did have some. I was excited. I bought a bunch of them (they were terribly expensive) and rushed home to feast on them. As I opened the first one the way the waiter did, I was thoroughly disappointed. It was rotten. The next and the next. Almost all of them were rotten. Only one of them was good. My enthusiasm for the fruit disappeared.

A few days back, however, my parents went on a holiday to Dubai. There they saw some Mangosteens at a mall. They bought some for me. Coincidentally, that very same day, I saw some at Q Mart at Banjara Hills.  I bought a pack of 9 for Rs. 500! Very expensive! But what the hell?

They were delicious. Every one of them was excellent. I was thrilled!

When my parents got back a couple of days back, I got to feast on them again. Heavenly!

Here is a video on how to eat the fruit.

... http://www.kamaldshah.com/2010/12/mangosteens.html

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Sunday, 19 December 2010 10:04

Three biscuits or a sandwish?

Written by Steve Bone
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No, that is not a typo in the title! To somebody on dialysis for 4 hours 3 times a week, there are some important issues to address. Namely, a decent cup of tea (or two) and something to eat. Now I am not advocating a full blown menu here, and hugely extravagant culinary masterpieces. The debate comes down to why do we (in Peterborough) only get a ration of 3 biscuits for the dialysis session?

As you can see this is world changing stuff, and Twitter will ‘light up’ shortly on this issue when I tweet this in a few minutes time! It is the major debate, that, and a second cup of tea.

You see, some of us impossibly grumpy old patients travel, and so we get to see dialysis elsewhere, in private units and in other NHS units. Amazingly, everywhere else I have been (and others have been too), we have been treated to 2 cups of tea through the session, sandwiches, two helpings of toast, toasted sandwiches, decent cups of coffee and more. Nowhere has been stingey enough to just give you a pack of 3 biscuits.

Now I understand there are health and safety implications here. Apparently toasters are not allowed locally as nurses set fire to the buildings, sandwiches are out as they are not allowed to brandish sharp implements, tea (1 cup) now has to come in a specified holder in a paper cup as the use of a dishwasher will affect global warming (so no mugs), and the budget ultimately has to come from somewhere (apparently). 

So, consider me and all the other patients in Peterborough who will be excitedly looking forward to the small cup of plastic tea and three biscuit ration 3 times a week, but alas, no sandwiches ( I wish….)

Footnote: To add insult to injury, the old tea trolley with the wonky wheel has been replaced, so the exciting chink of mugs as the trolley makes its way towards you has now gone.  So, back to gazing at the ceiling…….

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... http://mydialysis.co.uk/blog/2010/12/19/three-biscuits-or-a-sandwish/

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Sunday, 19 December 2010 09:39

Nocturnal Dialysis

Written by Steve Bone
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There is no doubt, and much research shows, that nocturnal dialysis, using single needle but extended sessions every day, or 6 out of 7, has huge beneficial effects, almost removing any recovery time, and dramatically changing the impacts on your body of ‘clean’ and ‘dirty’ blood cycles, which for some patients results in a pattern of feeling better or worse during their average week.

The NHS is meant to be actively promoting the extension of home hemo and self care in general, although the localised management and enthusiasm to achieve this appears to be mixed by region.

There can be many barriers to encouraging patients to become self caring. Some of these are emotional, some are practical. However, an intelligent approach to achieving self care whether on your own at home or even in a unit, including offering overnight hemo daily dialysis, is needed that can be applied countrywide. Areas to consider are very simple preparation of machines and needles etc for those that are reluctant to needle themselves, to self caring on a unit where the patient either cannot go home for practical reasons, or simply for lack of a carer at home. Beyond this of course, then home hemo is the real winner as this allows daily dialysis, but of course, nocturnal daily dialysis would open up huge benefits for many also.

Most UK dialyis units are standing idle overnight, so how about a concerted programme of daily nocturnal dilaysis combined with self preparation? Yes, there are issues of staff coverage, costs, but for many this will provide an improved dialysis regime with better health benefits. For those that can or are able to go home, then encouraging daily dialysis either as a night time function or during the day if they can work from home at the same time, is a potential no-brainer, but needs motivation to establish the programme.

It is clear that more could be done for a majority of hemo patients and involve many of them more closely in their treatment, so who do we turn to to get this moving more effectively? Locally it needs motivated and innovative managers, doctors and senior nursing staff to get things moving, but they should be backed by a top down drive to do better in this area. So, NHS, more than just a target, how about concerted action? How about involving patients and patient groups in the development – believe it or not, but many of your patients have brains and excellent business experience – use this free resource to help.

So, the shopping list is:

  • Teach preparation
  • Teach self care on the units
  • Actively recruit more for home hemo and use innovative technologies to get over provision of equipment issues.
  • Develop nocturnal facilites around the UK – improve health as a result
  • Encourage daily dialysis for all home hemo patients with a pattern of treatment to suit the individual life style.

Clock’s ticking, let’s get started……

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... http://mydialysis.co.uk/blog/2010/12/19/nocturnal-dialysis/

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