Professor Doctor Anne Merriman, you have been talking about the importance of palliative care and terminal care but particularly in Africa because you’ve been doing some really pioneering things in Uganda. Can you tell me first of all about some of the latest news? I think the issue of affordable morphine has been pretty high up on the agenda, hasn’t it?
Yes, affordable morphine was brought in to Africa from Singapore, the formula for it, which means that we import powder and make it up as close to the patient as possible. I brought it first to Kenya and then we started Hospice Africa Uganda with the vision for the whole of Africa.
What are the issues, though, about getting affordable morphine? Why has it been a problem up until now in Africa?
It’s still a very big problem because people have a lot of preconceived ideas, myths, about it causing addition, about it being diverted and about them being labelled. Each country is afraid of being labelled as a drug trafficking area. So we have a lot of advocacy to do with governments, with ministries of health, in order to get it in. Luckily Uganda agreed as soon as I went to see them to allow it in in 1993 and we’ve been making it up ever since for our own patients. But the big thing this year is that we started making it for the whole country; we started making it in 2011, actually, for the whole country and now because as well as that we’ve increased the prescribers by training nurses and clinical officers to be able to prescribe with a special diploma then now there’s a much greater demand and we no longer have room within our existing buildings for it. We’re actually looking at the moment to try and get some drug firms come in and help us to build a morphine production unit on site because we were the only people that never had a gap because always that’s been our priority.
What, though, is the magic and the charm, if you like, of actually helping to make this happen? Because you do have to overcome prejudices and these exist all over the world, don’t they?
They do, they exist everywhere and every country I’ve been into, and I’ve been to many countries and tried to start this, we’ve had the same problem. The biggest thing is it is a myth and once you dispel them, because we’ve had 20,000 patients, we’ve never had addiction, we’ve never had diversion of the morphine. The oral morphine itself is very cheap and you make it this way; if you buy it from a producer the middle man has put up the price hugely and the African countries can’t afford it. But it’s the price of a loaf and a half of bread at the moment for ten days’ treatment for the average patient. So that’s the one that we’re making at the moment.
And could you give me a picture of what has happened so far in Africa and what still needs to happen?
At the moment there’s only morphine in 15 of the 54 countries in Africa. Francophone Africa in particular has never had oral morphine, never had affordable morphine, and so they have no palliative care. Now if you don’t control pain you can’t bring in holistic care to help the patient and the family at this very special time of life.
And you’ve had an initiators’ programme, as it’s called, in French; it’s just happened, hasn’t it?
Yes, we started the initiators’ programme in English in 2009 and we’ve already trained 80 people on this course. But this year for the first time we started one in Francophone Africa. Now, we’re registered in France as Hospice Africa France, they have a charity shop in Brittany, they raised funds for that course and we ran it in April. It was for five weeks - two weeks in class and sharing with each other what goes on in their own countries; two weeks at the bedside of patients in their own homes and then the last week training of trainers so they go back ready to train others.
And talking of training you’ve got lots more training going on because you’ve got a degree in palliative care happening from your base in Kampala.
That’s right, and that degree is for the whole of Africa and we have about 15 African countries actually participating on that degree. This gives credibility to palliative care because they move forward with a Bachelor’s degree. Most nurses in Africa do not have a Bachelor’s degree, they’re registered nurses, and once they get a degree they really can move forward a lot, otherwise they’re the handmaids of the doctors, you know.
Could I ask you, though, about some of the key issues with palliative care? What are the points that you would like people to remember about the dos and don’ts to help patients at this most difficult time of their lives?
First of all we have to look at it from the public health approach. For example, in Uganda 57% of people never see a health worker. So these are dying of cancer in the villages so we’ve got community volunteers that we train ourselves to identify them, we teach them simple nursing techniques for looking after somebody in the home and they identify them. We then go down to the home, we don’t ask them to come to us, and see them and assess them and get them feeling so much better and being able to live until they die in fact. So that’s been a big move. But in Ethiopia, for example, the other countries, they can’t always tell you how many don’t see a health worker – 85% of people in Ethiopia never see a health worker. So the suffering is huge and just to find one person who is completely disfigured, either their face or their breast or something, we just don’t understand in the West what’s going on really.
And to come back to the issue of getting affordable morphine out, you’ve also got nurse prescribers so you don’t have to wait to see a doctor necessarily. How is that going?
That’s going very well. We’ve now got nurse prescribers in more than 50% of the districts in Uganda; the other districts we haven’t reached yet. They are responsible for providing a service, for talking to the medical officers in charge there and for training people within the district and also bringing palliative care. We have a palliative care association so they bring CME to the district.
Is terminal care really something that countries who may be resource poor can afford to have as a priority?
The morphine is free in Uganda, it’s so cheap that the government have agreed to give it free to everybody that is prescribed by a recognised and registered prescriber.
What about the holistic care, though, that’s not free. It takes a lot of time.
No, it does. Unfortunately we have been depending on donors outside of country and we’re now trying to get more people because there’s more businesses coming into Uganda, trying to get them as part of their social responsibility to donate to this service. The one in Uganda now, we look after 1,500 people at any one time in their own homes from three sites. That’s less than 10% of the people in need and then the other people are seeing others in the different districts. But getting people to actually give money for this is very, very difficult.
Is it, though, only a matter of donations or are attitudes an issue also? Attitudes to dying, for instance.
No, I think once people see what we’re doing, and we have DVDs which we can let you have to show exactly what we actually do and the difference it makes to a patient, to see them go from agony to this, anybody who sees it will want to help. But it’s just a matter of… yes, the rich are getting richer, the poor are getting poorer and the rich are rich because they don’t want to give their money away. The poor are the ones that want to give you a chicken or something if they don’t have a penny, you know? The rich want to hold on.
So what’s your advice for trying to deliver quality of life to dying people, then? What’s a key point that you’d like to mention?
We definitely need funding, that’s a huge thing, and at the moment we have USAID funding 60% of our work which is very dangerous. That contract finishes next year so we have a big problem there. But more important than the money is the right people to lead it and to take it forward, people with heart who really are dedicated to doing that. That to me is much more important even than the money.
Anne, it’s lovely to see you. Thank you very much.