Money, money, money

Moving to a new country often involves working out a new currency and Uganda has really been testing my maths! £1 is equivalent to about 4500 Ugandan shillings, so the numbers all seem huge. Kath and I often end up owing each other tens of thousands of shillings which is actually not very much at all. Haggling occurs much more often here particularly in food or clothes markets, or for transport. Depending on my mood, this can be fun or a lot of effort for some bananas….but I have to keep reminding myself of the conversion rate as otherwise I realise I am trying to persuade the seller to make me pay 15p less for an avocado which seems ridiculous in the grand scheme of things.

I know cost of living has gone up globally and many people are feeling the effects of this already at home. The same is true in Uganda and we noticed this from early in our stay. Nothing is as cheap as we expected and I’m certainly spending more each month than I expected, particularly on food, internet and petrol. Local markets have been a great place to find cheap second-hand clothes though, with some bargain tops for about 70p each! I am very aware this is having a much bigger impact on many Ugandans than on me though. Although I am volunteering, I have been working in a well paid job in the UK so through savings and other’s generosity, I am able to live here comfortably. Lots of people here were already struggling to get by and this has only made things more difficult, especially when most do not have a bank account or the same job certainty.

On a trip downtown to the clothes market

One of the main adjustments I’ve had to make at work is how big a part money plays in our decision making. How much money a patient and their family has and what they are therefore able to afford comes into the decision making with virtually every patient I see. Although the NHS has many financial constraints and many of the hospices I work in are charity funded, the limits on what can be done are significantly less and are uniform across the patients we see, not down to an individual’s resources. I am working in the government hospitals in Kampala where being admitted and having a bed to stay in is itself free. But almost everything else costs money. Blood tests, X-rays, CT scans, biopsies, surgery, staying in an Intensive Care Unit and most medication all have a cost. These can range from what we would consider a small cost to the equivalent of hundreds of pounds.

One of the medications we use frequently in palliative care is Morphine and thankfully oral liquid Morphine is freely available. Most other painkillers are not and using another similar type of drug (a Fentanyl patch for example) would be unaffordable for most, if it was even available. So when I see patients here, I am not only thinking about which laxative or anti-sickness medication would be best to manage their symptoms, but am often trying the one which is free first and then only trying one at cost if entirely necessary. Before I order a blood test, I have to consider if it is really going to change the patient’s management or if they can only afford one blood test, which is the most important. I am becoming much more reliant on the information I can get from talking to a patient and their family, or examining them, rather than requesting tests they cannot afford.

Ready for the new working day!

This all means that having a chronic or life-limiting condition here quickly becomes very expensive. Let me give you a few examples. If a patient has kidney failure and needs dialysis, it costs 1.5 million Ugandan shillings (about £330) just to have the initial procedures, tests and first few dialysis sessions. Continuing this three times a week long-term is not viable for most people. Some chemotherapy drugs for cancer are free but in order to know which drugs to use, the doctors need a biopsy. Patients will usually have spent 1000s of shillings on blood tests to try to work out the type of cancer and on a scan to find somewhere to biopsy, and then have to find money to pay for the procedure itself, the needle for the biopsy and then for the sample to be analysed in the laboratory. If the only way of doing a biopsy if by a camera test into the lungs for example, this will cost 500,000 shillings. Patients may have found the money to pay for surgery for a blockage in their bowel but then have to spend the rest of their life finding 1000s of shillings to pay for stoma bags, and if they can’t they choose to change them less often to make life affordable. Sometimes the hospital can waive part or all of the fees if the patient is assessed as really needing a treatment or test and cannot afford it, but this is difficult when the hospital is already struggling to pay nurses because it is so short of money and when most patients are in dire need.

One of the many great things about working as part of the palliative care team here is that it’s role feels important in a whole additional way than in the UK. By the time we see patients they have often spent most (if not all) of their money as well as dealing with having such a significant diagnosis. We are able to come alongside patients, families and their hospital team and help them make decisions about what to do next. For many families, it is a decision between paying a child’s school fees or a relative’s funeral costs, or affording medical treatment. Some have to sell their only cow or goat to pay for tests. And many have had to stop their work which was their only way of making money to stay in hospital with the patient to ensure they receive food or help getting to the toilet. So if a test is not going to change what treatment the patient can have, we can help them choose not to pay for it. If there are medications that will manage their symptoms for free, we can try to use them. The palliative care unit has a small comfort fund which can support the most in need patients with food or contributing to medical costs. For most patients being at home is cheaper so if that is where they would like to be, we can support them with being discharged. Sadly transporting a dead body home for burial is much more expensive than transferring someone alive and it costs money every night someone is in the mortuary. Patients and families therefore often choose to go home to die partly because the financial implications of dying in hospital are significant. All of these are difficult, complex and ethical decisions but are so important and have the potential to not only help the patient but also the wider family.

I know these are not easy things to read about and they are certainly not easy to witness, but I hope it never ceases to make me grateful for the free-to-all healthcare we have in the UK, for the fact that I don’t have to take a patient’s finances into account when considering what I can offer them at home, and for how blessed I am with the financial security I live with. And I hope this highlights one of the many reasons why palliative care needs to be available in all settings, high or low income.

4 responses to “Money, money, money”

  1. Grateful for you sharing this Kate . Keep up the good work 😊👍

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  2. This is so informative Kate and a real eye opener to the massive dilemma so many round the world including Ugandans have to tackle when it comes to healthcare and serious illness. We take so much for granted here in the UK.
    We are looking forward to testing our exchange rate maths skills when we are in Uganda in less than two weeks😀x

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  3. I feel so blessed to have the NHS. I shudder to think what it might have cost over the years if I’d had to pay. Thanks for this Kate. Very moving and informative

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  4. Kate this is such a good reminder for all of us how blessed we are in the UK. Our NHS may be crumbling, but it’s there and everyone here has access to it free of charge. You are doing an amazing job in Uganda, remembering you in our thoughts and prayers xxx

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