PS: Apologies for a lack of photos this blog - a lot of work has been in hospitals with patients who are very poorly/palliative (end of life care) so I didn’t want to/it’s not appropriate to take photos. There are a couple and a video (!) at the end though.
Ugly:
Where to start?!…
I guess the main thing that covers everything I want to rage about is the title of this blog entry - “Why can’t you do your [insert favourite expletive here] job?”. The longer I spend out here the more I see people not carrying out their job fully. Whether this be a nutritionist seemingly being absolutely clueless about nutrition or more to the point professionals only focusing/looking at what their task is with a particular client and not looking outside of that specific task.
These are the things I have done this week that although on occasion may* be part of the job remit of the speech and language therapist (we do a lot of work across many different environments and alongside many different professionals) are not in general what I should be doing. As I mentioned last week - these people have common sense and are trained in these areas, it’s not that they are not/”this is Africa”:
Advise and take a client from the Occupational Therapy Department to the in-patient ward due to severe malnourishment (Client J: 7 yr old [had a cerebral infarct last year], 10kg. The optimum weight is 23kg). I honestly think that the O.T’s would have either just done their job (O.T work) and send the client home or just said “you should go to the nutritionist”. To which the client would almost certainly have gone home (I had to spend a good 30 minutes explaining why the child needs to go into the in-ward and she still wanted to go home first to pick things up. I pretty much refused that option as felt she wouldn’t have come back)
Getting people to do things/bringing teams together. MDT work/Communication between roles is not something that is effective here, once again possibly due to the “this is my role, I’ve done my job” mentality. These are the stages in what I had to do with the above child - expect lots of angry CAPS LOCK (this is when I went Hulk-tastic on the staff). After getting the child into the ward and explaining everything to the doctor, she did her job - case history/admittance. I asked for a nutritionist to come and talk to the mum - the doctor said she would go and get one… 10 minutes later I go looking for a nutritionist. Who is hanging around in the nutrition room. The doctor didn’t mention anything to her. I round the both of them up to come and talk to mum together and all of us as agree as one big happy family (soon to go through a nasty divorce) that the child will be fitted with and IV drip for hydration/take bloods, a NG tube for feeding and be on a special nutrition plan for 2 weeks minimum. 3 doctors tried and failed numerous times to put an IV in his hands/arms as the child was so thin. Carmen, a visiting Speech Therapist said to me possibly his foot might be better… after seeing even more failed attempts I decided to speak out and first time they tried they got it in. He was then placed in a bed, all was well and I buggered off to do other work. As mum was very worried about the whole situation I popped in early the next morning to see how things were. HE STILL HADN’T HAD AN NG TUBE PUT IN. Due to this mum has been feeding her hungry child orally which was making his chest/breathing worse. I had a bit of a go at the staff, whose explanation was that when they went to fit one the mum said she was feeding him fine. “O.K - The food is going into the child’s mouth… and where exactly does it go from there?.. Yesterday we all agreed the child needed an NG tube as he is seriously malnourished and a feeding assessment (I saw mum again that day feeding) showed he is not safe on anything oral. WHY ISN‘T HE ON AN NG TUBE?” Explained to mum, the doctors and nurses. Right. Next morning I come in AND HE STILL ISN’T ON A (INSERT EXPLETIVE OF CHOICE) NG TUBE. I pretty much lose it at this point, tell the doctor in charge of that particular unit that “I’m not leaving until an NG Tube gets placed and that’s going to happen right now”. Less than 3 minutes later the child has an NG Tube. I can’t even begin to write how I felt that day and how I feel now just thinking about it. Mind-blowing ignorance/failure of responsibility. As I was there I also got hold of a nutritionist to immediately weigh the child and explain to mum the feeding timetable. That morning any professional I bumped into I explained that a child who desperately needed a NG Tube, after everyone agreed, did not get one for 2 days. Makes me ill thinking about it to be honest.
Had to place 2 children on Nasogastric Tubes (NGT) for feeding and en. These children are very malnourished, have no safe swallow, cannot support themselves and are not alert for the majority. Why are they not already on an NGT? Doctors, Nurses, Clinical Officers, Nutritionists?
Pretty much do some of the nutritionists work as they seem massively incompetent. In fact, a visiting speech therapist made this point. I have constantly been asking for nutritionist support for a number of children to which I have always got the reply - “yes, we are giving them special milk and porridge”. The fact is, without knowing the first thing about nutrition, I know that whatever this special stuff is it is not working - Paediatric Client C (who I have mentioned umpteen times) has lost a third of his body weight in 3 months and been on an NG tube the whole time. Whether mum is not feeding him as she should (I don’t believe this) and/or the nutrition support given is not enough (I strongly believe this) it is the nutritionists job to be in charge of this. Additionally, 2 types of food is not good enough for a child. Using cheap, easily obtainably resources I’ve just started giving my own advice regarding using juice and avocado and smooth peanut butter, mashing/mixing with yoghurt and/or milk so it flows through the tube. This will give the children umpteen amounts more good fats and put on weight quicker.
C has been on numerous drugs for all sorts of things, has constant seizures and fevers and a lot of neurological things going on. Up until a few weeks ago he was sleeping/not alert for the majority of the times I’ve seen him. I enquired that I knew he has a lot of things going on but whether the amount/type of drugs he is getting is adding to this. The matron and doctor looked through the notes and said for his weight and his difficulties it is what he needs.. O.K, I’m not a doctor so fair enough. The times I saw C last week he has been a lot more alert then previously… I asked mum if anything had changed. Yep, they’ve changed his drugs. I literally don’t know the first thing about pharmaceutical stuff/drugs but again without looking outside of the job box - the doctor’s want him to have reduced seizures and so lump him with a load of drugs that are meant to help.
I’m not sure if I’m ranting too much but I just can’t understand where this lack of responsibility/carry through takes place and feel a lot may stem from how people view their jobs/tasks perhaps.
Bad ?:
Not really much to say here, more a couple of interesting thoughts around death and the way it’s viewed here and the possible after effects on hospital care. Carmen mentioned that she thought perhaps in Kenya, death is more easily looked upon/is a more common part of life here - this was after I’d seen 3 recently deceased bodies that week and one of the clients had lost 10 of her 12 children. My retort was that I definitely think there is a “healthier attitude” towards death as some may put it by a very short mourning period for most as it for many I think its fairly common for someone you know to die on a regular basis here (I mentioned my landlady has been to a funeral on average every 2-3 weeks since I’ve been here).
One effect of this is possibly that people are less likely to want to support their child and pay medical expenses, rather accepting the fate of death than a bill and looking after a child who will be more a hindrance than help in daily life. I very much feel this was almost the case with client J (above) who spent 4 months in hospital after a cerebral infarct which cost the family a lot of money. It was her main concern and mentioned it a number of times and was seriously taking her son home rather than foot a bill.
The other possible effect, of which I witnessed a lot of this week is lack of end of life explanation/advice/options. 4 adult clients I saw this week ( 3 of which are mentioned below) have very poor prognoses and are on/expected to be on palliative care shortly. All 4 of these clients have no swallow or a very very poor swallow (very slow, very weak) to speak of and in regards to advice/options there has been none. After I informally assessed and gave advice to the clients I sought to speak to staff members concerning there condition - the fact they should not be taking anything orally but yet are not on NG Tubes. For some it’s a case of they have some mobility and on previous occasions have taken out the tube, for others there has not been any attempt to make this happen. My gut feeling is that due to the condition of these clients there may not be any point in keeping them alive - at the cost of the hospital and family’s time and/or money. I spoke to the doctors/nurses about the situations of the clients and that it is likely that all these clients will die unless they are placed on an NG tube, but if they are likely to pass away then maybe it should be discussed with family members whether to try an uncomfortable NG tube for feeding with some hope of recovery or to let them be as comfortable as possible and not prolong life. And that it would be great if possible to explain options which doesn’t seem to be happening.
Like I mentioned, I feel this may be a cultural difference and just “how it is” here but it was nice to be able to find out a little more and to discuss issues like this that my not have previously entered the minds of some of the staff at the hospitals.
The Good (at long last!):
Paediatric Clients C and J
They seem to be getting more alert and stronger by the day which is the first real step to possible recovery. Without energy or alertness it would be incredibly difficult for them to re-learn skills due to lack of focus, attention or energy to carry out tasks.
The Parents, Wives and Husbands of those in hospital
The carers of those in hospital have been nothing less then incredible in taking on the advice I have given to them. 4 stand out cases emerge that I’ll very quickly write about:
Client L, in the female ward currently has meningitis with complications and very little awareness and understanding of language and no expressive language to speak of and therefore all discussions were directed towards her husband. The husband has very good English and seemed to understand all information I provided on safer feeding (I also written notes for the client with what I have recommended as well). The following visit, he had her propped upright in her bed and feeding her beautifully thick, smooth, mashed amounts of banana. Unfortunately this is one of the client’s I have just mentioned and he has decided/been persuaded to not try another NG tube fitting and is essentially choosing oral feeding even though she has no swallow to speak of and is very underweight. I do not see her staying alive for much longer as things stand.
Client E, residing in the paediatric unit is the child I mentioned last week. She is on an Nasogastric Tube (NGT) and I was personally worried about her level of nutritional input as the dietary requirements for her weight, as recommended by the nutrionist, were not being met by the mother. After checking in on mum and child, it was found that E no longer had an NGT,yet was not safe to swallow and although mum had done an phenomenal job of feeding her daughter the optimum nutrition and filling in the feeding charts I had put up, they were not replicated by staff as requested. After speaking to doctors to get an NGT back in and to the nutritionist on the benefits of the feeding chart and for them to be replicated both these things were done immediately and the next time I was in mum had a beaming smile on her face and very proud of her fully filled in charts. I will also speak a little more about this client later..
Both /Adult clients C and J’s respective wives do not speak English and upon asking them “English?” “Kiswahili?” “Dholou?” it was determined that C’s wife’s first language is Dholuo and J’s wife’s is Kiswahili. Alongside an appropriate interpreter (doctor/nurse) I gave showed them and gave advice upon oral hygiene (examples, cleaning teeth/gums without water/toothpast and applying oral gel medication in the safest way possible. They both have no swallow to speak of and therefore using water/toothpaste/too much oral gel is likely to be aspirated into the lungs) and basic guidelines for safer swallowing. I also asked the MCT member to write down in the wifes’ first language the information I was giving. To be giving information about something fairly serious, whilst your respective other has a very poor prognosis, by someone speaking a language you have no understanding of must be a fairly scary situation but they were unbelievable great in listening, asking related questions and immediately as I left started to put into practice the advice I’d given :)
Clinic
Although I’ve been shifting towards hospital work for the last few weeks, I’m still rocking the clinic on a weekly basis and it’s busy as always giving me a lot of different kinds of clients, both in age and diagnosis to informally assess and give advice.
Carmen
It was lovely to have an experienced Speech and Language Therapist shadowing me for 3 days - Some lovely feedback and some great little tidbits I picked up off her were really helpful.
And that’s it..!
Off to my last ever stammering support group and then a few more days of work and I’m done! It’s gonna be a little hectic as I’m trying to leave behind a pack of info at all the schools and hospitals I’ve been plus do some reports and other stuff so although I’ll be finishing clinical work very soon I’ve still probably got a chock-a-block week of sitting in front of the computer :( !
Here's a video of a lovely bloke I met during the conference in Uganda in January who kindly let me film him speaking about stammering and allowed me to share it with the world wide web as well as the stammering group:
Apologies for poor English, punctuation and nonsensical sentences - I just type away and don’t really check over stuff! Lastly here's a couple of pics - one of "the last supper" with the clinic crew and a feedback meeting at one of the schools I work at.
Take care everyone,
J xxx
Top 3 songs played on Itunes shuffle whilst writing this:
1. Shine A Light - Wolf Parade
2. Ghost Of Corporate Future - Regina Specktor
3. Head Cut Off - The 88
awesome blog, Jon, and i'm not just saying that because you mentioned me three times :) You've expressed perfectly the past few days in terms of both its frustrations and shining moments! Hang in there - you're almost home.......
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