How (not) to communicate in an ebola crisis

16^th Jan: A few days ago, I received confirmation of my interview in London on the 28^th January for Core Medical Training – the next step in my training that will re-start in August. So I’ll be heading home a week on Sunday for 10 days for a break and to coincide with this interview.

On my one (half) day off last week, I started to think about interview preparation and looked to a list of sample questions:

• Tell me about a time you’ve had to show resilience to achieve a goal.
• Please describe a time when you were unsure whether what you were being told represented the patient’s true thoughts or feelings. How did you recognise this? What did you do about it?
• All Doctors need strong communication skills. Can you give me an example of when you have used your communication skills in a difficult situation?

Ha! How am I ever going to talk about anything other than my experience at Connaught Hospital?

Communication in an ebola context – I could write a book about this! Just trying to take an accurate history from a suspect patient in the screening tent has been one of the hardest things I’ve done since leaving medical school. Firstly and most obviously there is a language barrier. Krio is a really cool language. It’s relatively easy to understand maybe 70% of it is actually English in a ‘slang, kind of sloppy accent’ with the odd ‘nah’ and ‘de’ thrown in between words… “Ah da go nah beach” for example. I’m getting quite good at asking a history in Krio, “you de bodi wam?”, “you de vomit?”, and my favourite… “you de toilet fast fast?” But even having mastered the lingo, it’s rare that you get a straight answer. It feels like there are about a hundred and one ways to ask if someone has a fever. They will often completely deny it, “no bodi not de warm, no, I not get no fever… but I get feel fo malaria and I de sweat beaucoup” and the person is obviously sitting there in a thick coat, dripping in sweat and shivering. You check their temperature and it’s 39 deg C.

Communication between colleagues is also tricky mainly because whilst wearing PPE your hearing is all muffled by the suit, your mouth’s covered by a mask and there’s nearly always a background din of arguments, distressed relatives or ambulance sirens nearby. It’s so essential that the team is well organised though and communicating effectively. Especially if it’s a busy morning in the unit with multiple negative patients to discharge and new suspects to admit, ensuring everyone gets the correct name band, bed number and making sure their paperwork all matches up correctly is essential. It also doesn’t help that there are only about 6 different surnames in Sierra Leone; so at times there can be many Kamaras, Sesays, Koromas, or Contehs on the unit along with multiple Fatmatas, Mohammeds and Ibrahims etc. You can see how easily problems arise!

Good communication skills is something that the western-trained doctors and nurses have had drilled into them since day one of their training. It would be easy to blame the ineffectiveness of communication to a simple difference in culture here but I do believe it is something that can be taught and practised and improved upon. The importance of this was no more apparent to me than on Monday when I was called by the doctor working in out-patient department to speak to a relative of someone who had just died. Assuming, incorrectly it turns out, that the doctor, who had assessed the patient when she was alive and witnessed her death in his small office, had told the relative I introduced myself to the husband and added “I’m sorry for your loss”. However his blank bewildered stare made me realise suddenly that no-one had actually told him. So, embarrassingly, I tried to back-track very quickly, took a brief history and broke the bad news (again) hoping he wouldn’t remember the first thing I said. Oh dear, what an example of how not to communicate - maybe not one I should bring up at interview!  Later, I talked directly to the doctor and asked him why he hadn’t told the husband. Looking uncomfortable, he made an awkward remark about how he prefers to avoid talking to relatives about death directly. “It often just makes them too upset, sometimes they can even get angry and aggressive and I don’t like it when the situation gets difficult like that”. This just made me feel unbelievably lucky for the medical training I received and the quality of professional care we have in the UK. This doctor didn’t know any different, he’d never been taught how to effectively talk to patient to elicit what’s going on, how to actively listen to someone’s ideas, concerns or expectations, or have compassion or empathy in informing a man that their loved one has died.

The NHS feels like a galaxy away. I know there are shocking news headlines of busy A&Es and unsociable work hour disputes in the UK right now.  A few weeks ago I would be right in there campaigning for a more just system as well, and of course, I still do support the negotiations for fair junior doctor contracts… and yet here, the debate scales into insignificance. Similar issues crop up, ofcourse, but in Sierra Leone it’s healthcare workers campaigning to get paid in the first place. Since the ebola response scaled up a few months ago, there are some nurses and cleaners in our unit that have still not been paid a penny for the dangerous job they have opted to take on. All ebola healthcare workers should get paid a ‘hazard pay’, which is a monthly financial incentive to work with high-risk ebola patients. A recurrent problem encountered in some of the other hospitals that KSLP supports (and many others, I’m sure) is the list of ‘hazard pay’ ebola staff seems suspiciously large compared to the number of people actually working in the unit.  There are numerous other examples of corruption in the system here, but I’m getting away from the point…

25^th Jan: I never managed to post the above blog – got side-tracked/busy with IPC spreadsheets – oh how my Kings colleagues will tell you, “I do love a good spreadsheet!”  I’m currently sat in Casablanca airport on my way home. What will await me? cold weather – it was minus 9 in Amersham a few days ago; culture shock – just the journey home on the tube will feel like a jump in the deep end of technology, functional transport systems and busy, unfriendly people; a welcoming, comforting cup of tea with housemates – definitely.

How about stigma – well maybe? Since I’ve been in Sierra Leone, I’ve heard of countless examples of returning ebola workers facing concerns of friends and family not wanting to see them for fear of contracting ebola. There’s a common theme running through most examples, it’s always in reference to children. I was talking to one Save the Children medic on my flight just now who says he cannot go home to his wife and kids for the next 21 days because his children’s school will not allow them to attend if he sees them for fear of spreading ebola. Similarly, following very honest discussions with my brother, it was also decided that it was probably best I didn’t attend my nephew’s birthday party on Thursday, not because of the risk to his family but the concerns of the other kids’ parents that will be there too. I completely understand where this worry originates. I think the vulnerability of precious, innocent children and our inability to quantify risk appropriately as human beings leads to an emotive sense of overprotection. If the image of a sick, weak and confused patient vomiting blood doesn’t warp one’s sense of risk then I’m not sure what will.  Over the next 10 days I’m just going to have to remind myself of how I felt back at the end of November when I impulsively washed my hands after meeting a co-worker from Kings. Sometimes fears are irrational and there’s nothing we can about that. Let’s just hope I avoid getting the 'flu (and a fever that gets confused for ebola) so that I can actually attend my interview on Thursday!

Non-ebola health services

Our small (piece of the pie) holding unit has been half empty most of the week. Of those isolated patients only a handful have been confirmed positive.  Obviously if this is a trend that is reflected across the district/country then it is really encouraging. However, what it has done is expose the vast shortcomings of the general non-ebola healthcare system that is left behind, neglected in the past few months but also chronically under-resourced for years.

Some of the suspected patients who test negative are sent home but many require ongoing medical care. Obviously they arrived unwell and it’s understandable that our generic one-size-fits-all 24 hours of antibiotics and anti-malarials hasn’t cured them. So we often refer patients to the observation department (which is the equivalent of a short-stay acute medical ward) from where they can be admitted to the wards. Registration to see a doctor costs 15,000 Leone (£2) and admission costs 30,000. Patients, or relatives, have to pay for all investigations, blood tests, medicines, even equipment – such as IV giving sets, canulas, catheters and catheter bags (the latter two cost 16,000 Leone (£2.15), surprisingly cheap - I thought!). This payment system was set up from structural adjustment programmes by the World Bank in the 1980’s. A relative or caregiver has to stay with the patient at all times to help with general care of the patient – bathing them, taking them to the toilet, providing food, whilst the nurses do drug rounds, take observations, change dressings etc. In many ways this system works quite well because individuals are often very well supported by family members. It’s only when homeless or ‘destitute’ patients are unwell and need admission that the true limits of such a privatised health service are revealed. There is certainly no social welfare system here.

There are a number of reasons why our negative patients are not particularly welcomed on the wards; 

• Stigma – suspicion that being inside the unit has caused cross-contamination and/or possibly a general distrust in the lab results
• Jumping the queue, every day there are lots of patients that need to be admitted from A&E through Observation Ward, but our negative discharges get priority so that they free up isolation beds in the holding unit. There’s no A&E overnight either so there are often queues of patients in the morning waiting to be screened and see a doctor. (I actually think this is a good sign as it shows that people’s faith in the system is improving as they recognise that non-ebola healthcare is getting back up and running compared to a few months ago.)
•  No caregiver or relative – we always try to contact the relatives when our patients are discharged but sometimes it proves so difficult to get in touch with them. Incorrect contact details on the form, mobile phone network issues, etc. meaning there’s often quite a delay in them arriving to care for their sick relatives
•  Financial - relatives not wanting to pay or not being able to afford to pay registration or admission fees.

Also, as a consequence of quarantine homes, community surveillance and general awareness unwell individuals are being round up and tested for ebola much sooner than they probably would present to hospital before the epidemic. When ebola is ruled out there is an assumption that they should see the doctor, they are in a hospital after all, resulting in an overwhelmed and struggling general non-ebola medical system.

The front of the hospital: screening on the left, holding tent for
 suspect cases on the right

KSLP are very much involved with trying to get the health system back up and running. One of my roles over the last few weeks has been to do the ground-work for a large Infection Prevention & Control (IPC) United States funded 1-year programme in four different hospitals,  including Connaught Hospital, that KSLP will be supporting. The grant will support 18 different government hospitals in total and includes setting up a Patient Safety Committee in each hospital, training all healthcare workers in IPC and infrastructure improvements in Water, Sanitation & Hygiene (WASH). It’s a very necessary programme as the concepts of hand washing, infection prevention, safe sharps practices, appropriate antibiotic therapy etc are all quite novel here but it will be good to build on the initial understanding that ebola has generated. Hopefully, it will help hospitals stay open and healthcare workers stay safe as ebola ebbs away (but flares up occasionally) over the coming months.  Personally, I’ve been learning all sorts of new skills – how to scale up costs, the interaction and co-ordination of large organisations all wanting to do the same thing, engaging local leaders of hospitals in programme design and implementation and even the difference between a septic tank and a soak away!

Brendan & Nat admiring the view of Kroo Bay from the hospital waste management site

It’s also been quite satisfying to get my medical brain back in action in the last week or so whilst doing my clinical duties. (I do apologise to my non-medic blog readers for this paragraph…) We have had a number of patients in our screening tent that meet the case definition (fever plus 2 other symptoms) but quite obviously have other diagnoses than ebola. The only difficulty is we have to isolate them before anyone on the general wards would go near them for fear of healthcare worker infections – a decision that is entirely appropriate but frustrating as it limits our ability to give good quality care. Last week I trained one of our new volunteers, Brendan, who is an infectious diseases consultant in Wales in how our unit works and how to wear PPE. (It doesn’t feel that long ago since Dr Tom was training me!) It has been great to be on duty with him because he’s helping me spot-diagnose all the other non-ebola medical problems. For example, a thin, malnourished older woman with extensive cervical lymphadenopathy and parotitis (HIV/AIDS?), progressive peripheral neuropathy and neck pain in a teenager (Spinal TB?), a young woman with a stiff neck, altered personality, left-sided limb weakness, and left-sided hemianopia over a few months (HIV – Progressive Multifocal Leucoencephalopathy?). All these patients were negative for ebola but unfortunately I have not managed to follow them up to find out confirmation of the diagnosis – assuming they had the money to pay for investigations.

A particular case that has resonated with me this week is a little boy who had been kicked in the left side of his abdomen when playing with some friends at the weekend. His parents brought him in saying that he’s complaining of abdominal pain, loss of appetite, weakness and possibly some fevers over the last two days since the scuffle with his mates.  He was doubled over in pain, breathing fast, with a grossly swollen firm abdomen. I immediately wondered if this boy had ruptured his spleen. He definitely didn’t look like he had ebola but all we could do was isolate him (he officially met the case-definition) and give him conservative management until his test came back negative. We spoke to the surgeon on-call (hurray - even the surgeons have come back to work recently!) and he confirmed our suspicions that they would not operate unless he had a negative ebola test. So we admitted the little boy, away from his family, into his own room (so as to minimise cross-contamination). We gave him fluids, IV antibiotics and painkillers. I’ve never seen an adult, let alone a child, cope with such obvious pain with incredible resilience; he didn’t even seem too fazed to see me in PPE. The next day, his test unsurprisingly came back negative and we were able to transfer him to the wards. In the end he got transferred to a different hospital for a possible splenectomy (removal of spleen) so again, I don’t actually know anything of his progress.

A sweaty post-PPE pic!

Just a quick mention of other non-ebola health problems before I finish this mammoth blog entry! There was a general announcement via various NGOs/hospitals this week to look out for cases of measles as the children’s hospital had seen a couple of suspected cases. With childhood immunisation rates down by 40-60% in some peripheral health units over the last few months, the population has lost its critical herd immunity and are setting themselves up for significant outbreaks. Not something we want to complicate the post-ebola transition particularly.

The other obvious critical shortcoming of the non-ebola health care in the last few months is the continuity of HIV/TB services. As most hospitals were pretty much shut for the entire months of September to December, and some still are closed, many HIV and TB patients were unable to attend their routine out-patient appointments. Many have presumably stopped their medications leading to the risk of developing resistant strains. UNAIDS estimates that 1.6% of Sierra Leone is living with HIV in 2013 – although it’s not clear from the UN report I’ve just read how this is calculated. HIV patients are obviously more over-represented in hospital settings than the general population but I have definitely seen signs of disseminated AIDS in many patients. I would love to try and quantify the difference in service provision before, during and after ebola  though I suspect that may be rather difficult!

Ebola Myths

I thought I would share a few myths about ebola that I’ve heard about since being here… thanks to Ibby (Fixer), William, Patricia (nurses), housemate Katie and night nurse Tamba for helping me compile this little list:

1) Initially nobody thought that ebola was real. Everyone thought the government was making it up so that they could invite more NGOs, agencies and funding into the country and make hefty profits for themselves.

2) Quote: “A witch-craft was flying over the provinces and crashed into Port Loko (a large town) causing a lot of deaths all of a sudden.” I don’t even know what to make of this - is it a bird? is it a UFO? No, it's a witch-craft! In fact, of course, these deaths were actually due to ebola but the local people’s strong traditional beliefs were the only thing that could explain such a catastrophe. Lots of people in West Africa seek traditional healers (‘herbalists’) before attending formalised medical care. One thing the local nurses here pointed out is that this means literally hundreds of the traditional healers have died from ebola during this epidemic.  Practices and knowledge are passed down by elder generations within families so this loss will surely impact the availability of traditional healers in the future, especially in the provinces. Although the nurses seem to think that this will not diminish people beliefs. Currently we are seeing a hotspot of cases in Waterloo, a suburb of Freetown, where there is a strong dependency on traditional healers.

3) All the patients that were taken to the hospitals were found to be ‘positive’, in contrast to those who were sick and died at home.  So began the association with white doctors working in facilities and confirming ebola cases which was mis-understood as white doctors giving people (i.e. injecting) ebola. This spread a deep mistrust amongst the community and increased the fear of attending hospitals.

4) In August, a well renowned pastor from Nigeria had a vision that if all people bathed in hot water and salt before daybreak they would be protected from catching ebola forever. Apparently, it was attributed to a quote from the bible about being cleansed of sin by washing in salt water. The message was spread quickly across the country; bellowed out from all the radio stations, repeated at church services, loud-speakers, whatsapp messages – you name it… resulting in the whole country wanting to get their hands on some salt. Will told me that in Kenema people turned up at the treatment centres with huge kilo packets of salt to ‘cure’ the patients. In fact, just last weekend, I came across remnants of this rumour myself. Amar (a Kings colleague) and I were at the beach for the day and we took a boat trip up river to a small waterfall with a man called ‘Heavy D’. He proudly told us that there was no ebola in his village “because we live by the sea”. Obviously I questioned him on this, trying to warn him that was not the reason and he still needed to take precautions if anyone became sick, when Amar pitched in to explain his thinking was related to the salt-water message from August. I find it so worrying how inaccurate information can cause such long-lasting false beliefs. It reminded me of the crazy rumour in Zimbabwe and South of Africa that “having sex with a virgin cures AIDS”.

5) A (almost) funny and verging on ridiculous rumour I heard yesterday was about how Medecin sans Frontieres are screening for ebola at their isolation units. Just as background, our screening process involves asking every patient that attends the hospital whether they have a fever, or history of fever, in the last 3 weeks – if yes: they are asked a whole list of symptoms (vomiting, diarrhoea, weakness, abdo pain etc), if no: they are asked if they have any contact history with sick people, dead bodies, burials etc. In contrast, night nurse Tamba told me his friend works for MSF in Freetown and their screening process is completely different. According to Tamba’s friend, they give a suspect patient a peanut and wait 5 minutes. If he vomits then he probably has ebola and is isolated. If he doesn’t vomit he’s probably fine and allowed home! I tried exposing the absurdity of this screening process to Tamba,“do all patients with ebola vomit?” No! Even so, he still believed his friend and not me.

And so the rumours continue…

End of the middle?

Sorry for the delay in posting my next blog. I’ve been getting wrapped up in all sort of things but actually mostly non-ebola work and starting to think about the post-ebola transition... I'm not sure I've got the balance of writing blog entries vs working in the unit quite right yet.

So I stand corrected… maybe ‘The Surge’ is making a difference. In the last couple of weeks there has definitely been an increase in the number of holding beds (in isolation units where ebola suspects are taken) available. Many of the beds are being filled with suspects rounded up by the community teams who are going door to door looking for sick people in confirmed ebola hotspots of the city. There were some initial suspicions that the community teams were just isolating the elderly, the infirm and the homeless but if this was the case then the proportion of suspects testing negative would have increased and that, as far as I am aware, hasn’t occurred. In fact, in eastern parts of the city, which is generally more crowded and poorer and consequentially more ebola-ridden, the proportion of suspects testing positive is about 50% - higher than in most areas. These diseases are always the same – Paul Farmer wrote a compelling diary entry back in October about structural violence and health inequality relating to ebola.

Even the scale-up in laboratory testing is filtering down to real improvements on the ground.  We now have three collection times for blood tests in a day from Connaught’s Isolation Unit: 8:30am, 12:30pm and 4:30pm. Yesterday, we had patients admitted in the morning whose bloods were sent by 12:30pm and amazingly the results were back by 7pm. This meant we were able to discharge four negative patients home in the evening without them having to stay any longer in our unit, minimising their exposure to possible positive patients.  It also meant we could isolate the two remaining suspects in the holding tent rather than sending them home to the community. What a win-win situation J

So it looks like things are starting to turn around; maybe this is the beginning of the end or more likely the end of the middle. What happens next in looking to the post ebola phase of health system strengthening will be the subject of another blog entry. It certainly was and continues to be the focus of the Kings Sierra Leone Partnership to make long-term positive impact on the structure and quality of the health system and I’m excited to get involved in a few projects that have a longer outlook and non-ebola focus.

A little disclaimer – it’s very hard to get accurate information about how the epidemic is progressing here. I suppose I am at an advantage about not having the media cloud my perspective but the above assessment is simply based upon discussions with colleagues and a general feeling within the team rather than facts and figures that I have personally have opportunity to see.