The good, the bad and the very ugly (as in absolutely shocking)

Welcome welcome one and all for a bit of a long (hopefully interesting) ranty one this time round I’m afraid!… Firstly I wanna congratulate all of the 2011 City University Speech and Language Graduates! (That isn’t meant to be a self-congratulatory pat on the back) Woo-Hooo :) and now onto the good, the bad and the very ugly (and by that I mean some pretty shocking things from this week).

The Good:
Last week I carried out 2 training sessions at 2 different hospitals - the 2 biggest in Kisumu, the Provincial (“Russia” where I have been working weekly) and the District. The turn-out was great - for Obama Children’s hospital (“part of Russia”) 28 Doctor’s and Nurses came along and at the District 37 staff members (mostly Doctor’s/Nurses but others from different areas of the hospital came too). On the whole they all seemed genuinely interested in what I had to say and had far too many questions to ask about all sorts which was brilliant if a little hard to answer well at times :S

It was the first time I’d been in the District hospital and there were some great things that arose which I wasn’t expecting at all - firstly I was taken around and introduced to EVERY SINGLE ward to introduce myself and explain why I was there and the types of difficulties people may have that I can possibly support. Although some units probably are not too relevant to me e.g: Maternity/New borns, Obs/Gyn it was still great that Boaz, the O.T showing me around realised that anyone can have an impairment in the area that Speech and Language Therapists work with and felt it was important to promote who we are/what we do to all J Whilst going around I noticed signs up for the meeting I had held in practically every department! I believe this is common practice here but compared to “Russia” where it seems to be done by word of mouth it was lovely to see such good communications/promotion of CME’s (Continuous Medical Education seminars).

The last great thing was at the psychiatric ward (only one in Kisumu I believe) where I was expecting a real horror show of people strapped to beds and staff members not really doing much. The guy in charge immediately mentioned a lady whose speech becomes unintelligible when she speaks quick/gets excited (“Cluttering”) which was great and then he took me inside the unit to meet her. Walking into the unit wasn’t scary per se but it did seem very reminiscent of a prison scene - all patients in Jail-esque outfits, one open air area in the middle with a few benches around and then dorms either side. The lady didn’t particularly seem “with it”, which may be the drugs which the patients are on or just her general being and did not speak to the guy in charge very much so couldn’t really see the impairment (as such). The rest of the patients (a mix of sexes, ages between teenage and 60’s) were a little overeager to touch me/say hello and for a split second I thought it was going to kick off a bit but everything turned out alright! I’m only at this hospital for 2 more times before I leave and there are a load of people to see in the surgical unit, male and female inpatient unit and paediatric unit so I’ll just return to give the head officer some written information on cluttering. I did ask a few questions about the unit and the 2 big things that stood out to me were that family members are the ones that choose to put people in the unit via a doctor's assessment (though considering money is a big factor here I assume a lot are willingly accepted purely on the basis of what the family report) and that to be "released" they have to pass a "mental exam". I asked about whether social skills were taken into account e.g: training to go back to the community. The head said that "Unfortunately due to lack of staff and safety concerns this is just not possible" which I can understand from one point of view - resources here aren't great - but from the other point of view releasing potentially dangerous people back into the community based solely on a "mental exam" seems more of a safety concern than being one staff member short for 10 minutes a day perhaps..?

Due to some pressure from a few parents and the influential ASaLTEA conference last week, I quickly pieced together an Autism Support Group (Western Kenya’s first as far as I know!) which went much better than I expected with 13 mothers, 2 teachers and 1 nurse turning up. My aim was for 10 people to come so was dead chuffed but at the same time at least 3 parents and 3 teachers who were dead certs to come didn’t so hopefully next month’s one will be even bigger (I‘ve dragged in a few people to continue the group and will make sure David and/or Rach will be there too)! It was fairly hard to work out what to present as most of those who turned up I’ve done a basic Autism workshop with before, but the most difficult thing is the abilities of each child is sooo different that some information may not be suitable for some children and I don’t want the parents to zone out/go to sleep! I ended up going back over sensory needs (asking them to keep a diary and try to discover patterns around the times when the child calms down to use during those times of hyperactivity for example), the diet (there’s hardly any evidence!!) and showing how to make some basic AAC (Alternative and Augmentative Communication) devices such as “now and next” boards and basic picture communication boards/books. I also showed some videos of Intensive Interaction which was relevant for many of the parents. Overall, it was a success I think as the main reason for the meeting was to meet others, share information and experiences etc.. and almost an hour was spent with people introducing themselves and voicing their grievances with many of them vocally supporting the need to love your child no matter what :)

Bad:
Although over the moon with numbers who turned up for Autism Support Group, out of 16 hospital staff who were “interested” only 1 turned up and out of maybe 7 or 8 teachers/professionals who I was hoping/expecting to come only 2 did.

The more work I’m doing in hospitals, the more people there are who are seemingly beyond help - case in point being a 14 year old girl who is continuously having seizures, malnourished, on a Nasogastric Tube (NGT) for feeding as her swallow is poor and has a whole host of things going on affecting her brain (e.g: Sickle Cell, Malaria, TB) and a 72 year old man who had a right sided CVA (Cerebral vascular Accident) approximately 2 weeks ago. I’ll speak about both of them to varying degrees below, in the “ugly” section.

Oral Hygiene. That being the care of the oral area such as brushing, using medication to clear up infection and hydration. I’d always figured this was families responsibility (in fact I think I mentioned it in a past post) but low and behold when I brought it up at the training sessions they said it was the nurses responsibility. I therefore went off on a little telling off that sure it’s important for family members to be involved and know how to support this area but if it’s the nurses responsibility they should be carrying it out alongside the families or at the very least teach carers how to do so and check up on the client. None of this has ever really been done to my knowledge - definitely not with brushing of teeth etc.. and my gut feeling is any oral thrush medication is just given to the family and told how many drops/spoonfuls to give per day. A great example is the 72 year old I mentioned above - he has oral thrush and it looks like no-one has even looked in his mouth let alone brush his teeth in weeks (there are lots of bits of stuff stuck in between his teeth). On my next visit on Tuesday, I will show both the wife and staff how to apply oral medication safer (gel on gauze and dab rather than crushed pills in water) and how to clean his teeth (using water or toothpaste will create saliva and foam which the client is likely to aspirate on).


Ugly:
Client C, who I have spoken about a number of time previously  - 11 years old and has been in the ward for almost 3 months. He came in with meningioencephalitis (meningitis and inflammation of the brain) from which he has had several complications. He is on an NG tube, severely underweight, has very little movement, possibly blind, has some understanding of language but no way to communicate at the moment and does not have a safe swallow on any consistency.

The hospital tried to discharge him.

This makes me soooooo angry because not only is there NO WAY IN HELL this child should be discharged but additionally if mum is happy to be there supporting him, paying the fees etc (which is a BIG factor here) why should they try and turf him out because they “can’t do anything for him”. Firstly, there is ALWAYS something that can be done that is making his quality of life better than it would be at home (in this case he will almost certainly die if he went home) and secondly, you only have to look at client M who staff felt the same way about only a month ago and now she is doing unbelievable well. I’m not saying this will happen to C but if he goes home, the same as if M had, death is the likely consequence.


Back to the 2 patients I mentioned earlier:

Whilst reading through the notes of the 14 year old girl I noticed 2 glaring things - Firstly when she entered the hospital her age was marked as 14, then halfway through the notes suddenly she becomes 12. This doesn’t really have an affect on intervention but somehow something as simple as this has been miswritten - when I asked mum she immediately said 14 so it’s not like she doesn’t know/is unsure of date or birth which is pretty common here. Secondly, I noticed that the ideal liquid diet (through her NGT) for her weight is 2700ml according to the nutritionist. Her current feeding charts marks her as having on average 4 feeds of 300mls a day - 1200mls LESS THAN HALF WHAT SHE NEEDS. I approached the doctor’s about this who initially seemed taken aback by this fact and then proceeded to name 3 reasons this may be.

Number 1:
Doc: “You know sometimes it’s difficult for children to keep food down through the NG Tube”
Me: “She vomited twice on the first day she was in/on an NG tube, since then she has retained all feeds for the last 10 days”
Doc: “Oh”

Number 2: Families can not afford food. Understandable and fair point. I enquired with the nutritionist and basically they have NO funds to provide anything free nutrition wise (e.g: extra nutrition flour/special seed/nut paste sachets).

Number 3:
Doc: “You know sometimes mothers feed their children and don’t immediately report it to the nurses”

After chatting to mum and a few nurses who I dragged into it, I came up with a dietary timetable, exactly the same as the one in the notes which is to be stuck on the wall next to the bed so Mum can immediately mark down when she feeds. I feel it may also be good for her to have the exact amount written down and the amount of times she is meant to be feeding her child to get her to hopefully realise how underfed she is at the moment. I told Mum I realise how hard it is to feed every 3 hours all day/night and that money for food is an issue but that I was expecting the intake to be AT LEAST 6 feeds rather than her current 4. We will see on Tuesday how things are going..

The 72 year old has left-sided hemiplegic (paralysis of the left side), visual difficulties, doesn’t seem to be understanding any language and does not produce any spoken or body language to speak of according to wife/nurses. He does not have any swallow to speak of. They tried twice to put in a NGT (Nasogastric Tube - which allows feeding straight to the stomach whilst bypassing the throat and the risk of aspiration [food/drink going into the lungs]) but it failed. Why? The nurses could not tell me. So he has been fed porridge/liquids and been given crushed drugs mixed with water all whilst he has absolutely no swallow to speak of and is coughing (I.e. aspirating) anytime he is given anything orally (according to the wife). He desperately needs to be put on an NGT, which I spoke to the nurses about, who agreed with me.. AGAIN WHY ON EARTH HAVE THE STAFF ALLOWED ORAL FEEDING/MEDICATION TO CONTINUE???!! Don’t get me wrong - I realise we are in a 3rd world country and things are different to back home etc.. BUT these guys are trained doctors and nurses AND there are the facilities in place (I.e. NGT) to support this client but nothing has been done in 2 weeks or so.

Continuing on a similar vein - LACK OF KNOWLEDGE HERE IS UNBELIEVABLE (and I don‘t mean in terms of people don‘t understand or need to know more about certain areas). Some examples from training:

56 out of 69 hospital staff (vast majority of Doctors and nurses) thought cutting a tongue tie improves speech

Only around 50% could label more than 7/12 labels on a diagram of head and neck

When talking about swallowing difficulties, I asked a doctor to explain to me what aspiration was. He had no idea what the word meant. This is a word that is used here, there is no Kiswahili alternative used within the hospital and all discussions/notes are in English.

Can’t really put my feelings into words really - Sometimes things are the way they are because of lack of money, lack of general knowledge, common superstitutions/beliefs but as with feeding issues these are all things doctors and nurses are trained on. F*cking unbelievable.

Apologies for the bit of a rant today but I think it’s a fair reflection of some of the practices out here and if I don’t rant to someone than I’ll prob end up destroying some relationships I’ve built up with staff/friends out here!

Only a few more weeks left and only one and a bit of work so you only have to be bored by me a couple more times and I’m off!

J xxx

Top 3 songs played on Itunes shuffle whilst writing this:
1. FreeBird - Lynard Skynard
2. Everlong - Foo Fighters
3. Titus Andronicus- Titus Andronicus