End of year highs...

I’ve been neglecting to blog over the last couple of months as I wasn’t sure what to talk about. Living, working in Kenya is my ‘reality’ now, and like I didn’t blog about working in the UK, I kept forgetting that blogging here is the best way to remind me of how far we’ve come as an organisation in the projects we’re doing here..

Waiting Lists… I hate it, but I’ve now got one. There are too many people to be seen here. I know that everywhere has a waiting list and has to prioritise cases, but how do you prioritise one child with a profound disability, with communication and eating/drinking difficulties, over another child with a profound disability, with communication and eating/drinking difficulties, where both parents have sacrificed more than I’ll ever understand to travel to come and see me? Answers on a postcard please…

I need to get my head around the numbers of people I’m seeing each week, and remember, there’s only a certain number of hours I can work each day… Easier said than done when word has got out in communities far and wide that speech therapy exists. And that it works…

Long distance therapy… I got a phone call the other week from a UK number. My initial fear was something was wrong at home, however it turned out to be a lovely man who had found my number online (still don’t know where..) who was a Kenyan nurse, now working in the UK. His old pastor in his home village had had a stroke two months ago, and because he worked in the British health system, he knew about speech therapy and how important it was to get seen quickly post onset. His pastor lives in Kitale. A town 3 hours away by car… They made it to therapy last week, and still can’t believe we offer a free service. It was quite over whelming to be embraced by this pastor’s some, and be told that I'm a blessing to his family and am loved by them all…

That same week, I saw a little boy (again, not sure how his Father got my telephone number) from Eldoret… a good couple of hours away. Cute kid with a hearing impairment.. Going to be a joy to work with these dedicated and committed families.

On the flip-side, I had a referral from a colleague in Nairobi for a lady living in Vihiga. She had no idea speech therapy existed in western Kenya, let alone in the same county as her. However she soon proved that she wasn’t really interested in the benefits of speech therapy for her son  when she got the response ‘we don’t pay for transport’ after she asked when I was going to send her the money to cover her costs of transport to come and see me.. oh Kenyans.

Groups –  Last week I got to have two of those ‘moments’ where I have it confirmed exactly why I’m here.

I have been working with a patient called Andrew for 2 years since he had a stroke. The progress he’s made is a credit to his commitment to his rehabilitation, however, there’s always been one stumbling block: talking about his stroke with others.

We always spoken about how great it would be for him to chat to others and support them in their recovery, as he knows, understands and more importantly accepts the process. However, he’s always been shy and embarrassed about it.

A few weeks ago he shocked me in our session when he asked me if there was a support group for people who have had a stroke in Kisumu. I explained that there wasn’t, but there was a successful one in Nairobi and I felt Kisumu would benefit from one too.

He decided to set one up!!! I left the responsibility of organising to him, explaining that this all helped with working on problem solving, planning etc… and with a little guidance along the way. He did it. Tuesday last week saw the first meeting of the Kisumu Stroke Support Group. 5 people attended and all were open in explaining to each other what had happened to them, how it had affected their work and personal lives and what they wanted from their future.

The group are going to meet up once a month and I will attend some of the sessions. It was wonderful to get to interact with such an inspiring group of people, each supporting the other… hopefully with this support they will all feel confident in being seen in public.

Talking of groups, Florence (Edna’s mother who YH now employs) has been working so hard to set up the Mothers of Children with Handicaps Self-Help Group. They’ve been meeting every week and are just finalising their constitution and registration as a community based organisation (CBO). Such a warm, and wonderful group of women, none of them want hand outs, just a bit of support in how they can provide to their child with complex disabilities.

I’ll keep you updated, but hopefully soon they’ll have some products for sale to start generating an income for the group to be used as a table banking strategy.

From February we’ll have another volunteer SLT with us and she’ll spend a day a week offering therapy to these children. They live the equivalent of £3 from Kisumu – that’s more than 2 days worth of food for their entire family, so at present finding the money needed to come to therapy is pretty much impossible, hence the need for supporting them in setting up their CBO.

I’m constantly learning from these groups and I’m excited to continue working with them next year.

A career high – working in Kenya means I get to achieve some special things; however, a lot of them aren’t necessary clinical achievements.

 I am lucky to work with an inspiring gentleman called Paul. He’s 28 and has had 3 strokes. The last one causing the most damage and for the month after his stroke (November 2012) he couldn’t say a thing. His quiet determination throughout the last 6 months I’ve worked with him, where he been desperate to prove that he is able to return to work and should be given the chance to return to work, has paid off. He did is first day of work on Monday. He told me it was ‘awesome’!!! I’ve ALWAYS wanted to work with an adult who’s had a stroke/brain injury and rehabilitate them enough to return to work. And, after 6.5 years we’ve done it. Best. Feeling. Ever!!!

Any clues on where exactly September went…???

I keep neglecting to blog, work’s been so incredibly busy, that when I’m on the computer in the evenings and not working, the last thing I think about doing is typing. However, keeping a blog, is like keeping a record of what’s happening here. And, my goodness… a lot’s happening!!!

Where to start?

Today – I’m running the joint clinic at the Vihiga EARC this morning. It’s a quiet morning, and I’ve spent it playing ball with a cute 4 year old called Bob. In walks this beautiful, confident little girl. I couldn’t believe what I was seeing. The last time I’d seen her she couldn’t walk as a result of spending 5 years in a constricted, spasm state. She could talk when I last saw her, having just started speaking again after 5 years in an almost vegetative state…Maurine. I’d written about Maurine on my blog when I was here last year, from the despair at having to tell her mother that there was nothing we could do, apart from support her feeding, and as she was at such a high risk of aspirating, we were really waiting for her to die… to the miracle of hearing this beautiful little girl speak again after being not being able to for 5 years… to the thought of her going to school. Incredible. And there she was, coming into the assessment centre with her mother to get the letter needed for her to be able to start in the mainstream school… So proud and inspired by this little girl. I’ll be following up as she starts school – I promise not to be the ‘typical mzungu’ and cry when I see her there.

Conference:

I was incredibly fortunate to attend the 5^th East African Conference on Communication Disabilities in early September. 120 people attended from 16 different countries, 7 of those were African. It was an inspiring 4 days full of people with so much interest and passion in developing speech and language therapy in East Africa, sharing knowledge and ideas, and pushing forward as a profession here.

I was so nervous as the Yellow House crew: me, David and Martin, were up to present on the Thursday morning. Our presentation was all about the challenges in building a multidisciplinary team within Western Kenya… We were to talk about the positives and negatives of what’s happened with Yellow House over the last 18months, what we’ve learnt from it and how, as an organisation we’ve moved forward. We received a lot of wonderful praise and comments after our presentation. I think we broke down some of the barriers organisations traditionally put up when talking about themselves; as we spoke honestly about some of the hardest things we’ve had to deal with, which most organisations don’t tend to talk about.  It was a really special conference, and I’m already looking forward to the next one in 2015, both in terms of where Yellow House will be as an organisation then, but more importantly, where speech and language therapy will be as a profession in East Africa.

Patients –

Did a bit of maths a few weeks ago, at the moment David and I are offering on average 200 appointments a month – that includes school visits, hospital appointments, ward rounds, community visits and assessment days at the EARCs. Our target budget for 2014 for our project costs is $200 a month (for the 2 of us). $1 an appointment… It literally blows my mind.

Shameless plug – I know many of my family and friends have already supported my work here, but if this is something you feel you’d like to support further, please visit our website: www.yellowhousechildrens.org

I would say around 50% of the people we now see for an initial assessment come back for therapy. This is compared to over 90% of the people we saw last year who DIDN’T come back for therapy. Huge breakthrough for us as a service, but it’s also a bit mad, as it means we’re both extremely busy.

Edna – my little star – continues to do well and we were really lucky to have specialist AAC (assistive and augmentative communication) speech and language therapist, Joanne Fry, come and work with us for a couple of weeks in September. She met with Edna and her family to start the process of developing a communication aid. I’m excited to carry on and develop this work further… Especially because I know what a cheeky personality she has, and I can’t wait to help her use a communication aid to show this off to other people.

Her mother Florence starts to work with Yellow House this month as our Mentoring Mum. Her role at the moment is to help set up, and then run a mum’s support group in Kisumu, demonstrating the importance of positive interaction with their child, attending therapy, making medical and educational decisions and knowing where to access the support. This role will be developed during next year as we hope to get the funds to be able to offer this service across our other projects in Vihiga, Kakamega and Mumias.

Timothy – a charming 60 year old man who had a stroke in 2012. What a hard working and dedicated gentleman… He comes to therapy EVERY week, he carries out the work I set him and as a result, this man who spoke jargon and had severe word finding difficulties, can now have a conversation, has the confidence to be seen in his community and shout out ‘hello’ to his peers when he sees them from a matatu (and then laugh at my obvious shocked and impressed face as I sit next to him and observe…)… I loved it a few weeks ago when his physiotherapist, who (through no fault of her own) has absolutely no idea what I do with my patients, apart from look at pictures, make them do silly face exercises and make random noises…. observed Timothy speaking to me and said “you made him talk”… Wonderful.

Going on a Blood Hunt

Sometimes working in Kenya you find yourself doing things that aren't really your role. However, here, my role as a speech and language therapist is really just the tip of the iceberg.

I was so excited to see Florence and Edna today, I was going to be telling Florence that (thanks to the incredible generosity of Tammy, back in Ashby who’s going to pay her wage) I could employ her for 2 days a week to help me set up a women’s group, with her as a ‘mentoring mum’. She’s going to work with other mums modelling to them how to interact and care for their child with disabilities, support them in making medical and educational decisions and empowering them to also be proud of their truly special children. The other great bit about this, is as a result of Edna’s stroke, Florence can’t work anymore as she has to care for her daughter. With this role she can bring Edna with her and earn much needed money to help pay all the medical costs of having a child with sickle cell anaemia.

Unfortunately Edna has been admitted to hospital. Florence called me yesterday to let me know. It was unclear over the phone as to why, something to do with her blood. Me and my student, Kelsey, went to see Edna on the ward today, even though she’s sick, she still greeted us with her beautiful smile and LOVED the little polka dot bag we gave her as a gift from some students from Hong Kong university we met the other week. We were there during ward rounds so I got to hear from the doctor exactly what was wrong with her:

“her blood is too thin and low. Because she has had a stroke already her blood must be maintained above a certain level or else she will have another stroke. She needs a transfusion.”

I asked him why this wasn’t already happening. “we don’t have any blood that match her type in the blood bank”.

‘Russia Hospital’ is the biggest public hospital in the district. How can the biggest hospital around have no blood?? Where on earth are we going to find blood??

The doctors passing comment at the end was “find the blood. Or else she will have another stroke”… I felt sick.

Luckily I get to work with an amazing colleague within the APDK (association for physically disabled people in Kenya) called Tobias. We went to ask him where we could get our blood tested to be possible doners for Edna. He explained it wasn’t as simple as that as it takes about 48 hours for it to be screened in Nairobi.

He phoned around people he knew at we decided to meet up after work to go on a blood hunt.

Another colleague, Steve came along too – they’ve both had the pleasure of meeting beautiful Edna before.

We went to Aga Khan Hospital – the private hospital – there was no blood that matched there.

I was so frustrated – how is there no blood here?? I was told that, especially in Western Kenya, people don’t donate blood. If you donate you find out your HIV status… People would rather not know that. As a result, there are always blood shortages. I love many things about Kenya, but this frustrated me more than almost anything I’ve ever heard here…

We then went to the District Hospital. The Lab Manager was just pulling out of the gate – luckily Tobias spotted him and managed to persuade him to see if he could help.

We explained the situation and he wanted to be of assistance. However, they too have blood shortages so we weren’t hopeful. Kelsey and I crossed everything possible as the technician was called. Reality really hit home when the manager explained to the technician that “a little girl is dying and needs blood”…

They have one bag of blood. Just enough for a transfusion. I almost cried with relief. However, it’s never that simple. We have to hope, pray, keep our fingers crossed and any other good luck superstition that no one needs that blood tonight as it can’t be transported until tomorrow. If they do need the blood, Edna doesn’t get it and we’re back to square one.

I’ll keep you updated…

The Extremes..

Somehow I've been back in Kenya for almost 2 months. I have no idea where the time has gone, I do know it's been an overwhelming, challenging, fun, exciting and daunting 2 months and that I couldn't be happier that I'm 'home'.

I'd forgotten how here it's all about the extremes:
Extreme highs. Extreme lows. Extreme cases.
You never just plod along here... Initially it was topsy turvy ride (and it still is), however, it's a ride I'm most definitely happy to be on.

My role this time has changed slightly. I'm still a speech and language therapist, however, I'm also project coordinator for Yellow House Children's Services and I am incredibly lucky that Bea is letting me take some of the reigns in pushing forward and developing her organisation as we try and establish a new model of service delivery in rural areas.
It's a tough challenge, but one that I am excited to be a part of..

A lot of my time was initially spent meeting with my Kenyan colleagues across Vihiga, Kakamega, Kisumu and Mumias to work out how best me/Yellow House/future volunteers can support and develop programmes. Being home definitely made it easier for me to plan my time, in hopefully a way that's a bit less like I'm 'fire hosing' my way around and actually creating sustainable services.

I've also caught up with some old schools:

Madzu - to give them some resources my sister had worked hard to make to demonstrate how many different areas you can work on with just one or two things as a basis. They were really grateful and hopefully when I go in to see them next week they'll have put them to good use. 

The kids especially loved the creme eggs!!!

Kegoye - What can I say but, wow!!! They literally blew me away, and after a G&T and a chat with friends here, I did the 'typical' Mzungu thing and had a bit of a cry...

They should be a model of how a special unit within an inclusive school should be run. After working with them lots last year, I could see how they've taken on board any strategies and advice I'd given, and ran with it.

They're focusing on developing vocational skills, like budgeting, carpentry (they built some hutches so that the children can learn how to look after rabbits and chickens), farming, tailoring... As well as working with the children who can access academic work in a way that supports them.

Not only that, an aspect of special education teaching in Kenya that frustrates me more than anything else is that the teachers of the units are also made to teach in mainstream. This often means that the children who need the most supervision and support are left on their own.. Through incredible work from the teachers of Kegoye the headteacher has 'deployed' (I love that they use that word for it!!) two teachers, Nancy and Maurine to be full time in the unit, hiring two replacement teachers in the mainstream school, and the third, Stanley, is part time in both, awaiting a letter to confirm he can be in the unit full time too. That's 3 teachers who are specifically trained in special education to a class of about 12 children. Does that even happen in the UK???!!! Plus, they finish teaching at lunchtime and then have the afternoons to plan their next day of teaching.

This is unknown in all the schools I've visited in Kenya, but as well as that, these teachers are so innovative in their ability to utilise to the max the minimal resources that they have.

Chekombero/Tony - the little boy who was being neglected and abused by his carers is going from strength to strength: learning sign language, making friends, laughing, learning... This was the boy who would cower from adults, throw stones at his peers and isolate himself. Just shows what a difference acceptance makes.

Tony (centre) with his mates and a coy smile...

However, then you get the other side of what happens here...

Michael is selectively mute after his father was arrested for stealing. Stealing from his wife who he's spent years psychologically abusing.
Michael is traumatised by his father being arrested and hasn't said a word since it happened 2 months ago. His mother, the once respected seamstress with a successful business has lost all work. Who wants to buy from the wife of a thief? She is now a commercial sex worker because there is no other way she can provide for her children.
There aren't professionals in Kenya who can help deal with the psychological and economic issues going on in this situation. The community around them won't help in this situation...
I'm hoping the mother brings Michael back so I can try and counsel him through this. But she needs support too...

I've met a little girl here called Edna. Her mother is called Florence. I look forward to seeing them every week because the love Florence has for her beautiful daughter is inspiring.
Edna has sickle cell. She was fine, until her father lost his job for a few weeks. People with sickle cell have to be on medication everyday. The medication costs 85ksh (65p) per day. The family had to chose to feed their children. Sadly Edna had an attack during this period, where basically she had a stroke. As a result she had weakness down one side, but otherwise was fine as it was a mild attack. She required a blood transfusion which needed to be given to her slowly... it was until a nurse came a long and thought it was taking too long (without querying why) and sped it up. Edna had her second stroke. This time she has a weakness on both sides, her walking is severely impaired and she has a motor speech difficulty - she can't speak. She can understand everything though and cries when Florence is giving a case history as "she gets sad when she hears what happened to her"...
Edna and Florence are a joy to work with.
Florence's dedication to her daughter and how she interacts with her is so wonderful to watch. I'm planting the seed to set up a women's group where she lives for mums of children with disabilities. I hope she'll be one of the key women involved...