Liz and some of her nurse colleagues

 
We caught up with Dublin rehab nurse Liz Croxon, who has just returned from a two-week Motivation volunteer placement at a hospital in Tanzania. Liz was sharing her skills and experience with nurses who up until now have had little – if any – formal training in caring for patients with a spinal cord injury. Here’s Liz…

“I was working on the orthopaedic ward, where there were 93 patients but just 57 beds.
The remainder– mostly canvas stretchers and the odd trolley – were put wherever there was space. It was cramped and overcrowded, but it didn’t really shock me. You just have to get on with it.

I didn’t want to feel like a nuisance.
So when I introduced myself to the nurses, I explained that I wasn’t there to criticise them at all, that I wouldn’t just be observing, that I’d be working as part of the team. That seemed to go down well.

One of the biggest challenges was that the 16 spinal cord injury patients were in among the rest of the patients on the ward.
I explained that it would be better if they were all in one ward, because it’s very difficult to nurse spinal cord injury patients when they’re in among orthopaedic patients. They need a different kind of care.

Liz does some on-the-job training

The nurses hadn’t received specific training in caring for patients with a spinal cord injury.
So the idea was that I’d run three workshops. But often with as few as four nurses caring for 93 patients at a time, and some working up to 80 hours a week, the nurses just didn’t have the time or the energy for formal workshops. So I supported them on the job, getting across the basics of skin, bladder and bowel care regimes.

The nurses did have knowledge of pressure sores, but they didn’t realise how quickly they can happen with spinal cord injury patients.
Although the nurses were turning their patients, because they’re so busy, they weren’t turning them regularly enough. I gave them some advice on turning patients to prevent damage to the skin, how to position the arms and legs, and how to make sure the neck was adequately supported.

I was amazed at the patients’ relatives and how much they wanted to help.
No matter what you said, they’d take it and make sure they did it. So if the patients weren’t getting enough fluids, they’d make sure they got enough fluids. They absorbed any bit of info you gave them.

It was quite frustrating when we’d run out of basics like gloves and wipes for cleaning.
I’d have to go off and look for them, and it would take ages to find things. One day I needed some lubricant for a catheterisation and I had to go to the casualty department with a sterile glove and get a squirt of KY Jelly in it. You just had to improvise!

Tea break and photo opportunity!

We had trainee nurses too, and they were great students.
They were very keen to learn and they all took notes. That was good to see – the next generation of nurses having a real interest in spinal cord injury.”

Look out for more from Liz in a blog post we’re planning for International Women’s Day next month!

You can download our poster here:

Motivation Bristol runs poster

If you don’t have a printer and would like us to send you a copy of the poster, drop Marianne a line on kent@motivation.org.uk or call her on 01275 464 012.

Many thanks for your help!

The adventure begins: Richard and Rachel in South Africa

“Weeks after returning to the UK, it’s still not wholly sunk in that I’ve driven the length of Africa!

Our route took us through Hluhluwe Imfolozi Park in South Africa, into the sparse and spectacular wilderness of Namibia, briefly into ‘Africa’s success story’ Botswana, the amazingly friendly and beautiful Zimbabwe, the rural wilderness havens of Zambia, through Malawi and past its sea scaled lake, into Tanzania with its wonderful mountains and rolling grassy plains, archetypal Kenya including chaotic and frenetic Nairobi, on to remote, rocky, desolate Lake Turkana and through fertile Ethiopia by way of the Omo Valley, ultimately the home leg, from Addis, the deserts of North Sudan and the antiquities of Egypt’s Nile Valley. The route out of Africa involved a RoRo ship to Italy for the Land Rover and flights for us to meet it.

Not one flat tyre!

When planning our trip we’d been determined to adhere to the common, but well-founded cliché of needing to ‘give something back to Africa’. After much research, we decided to support Motivation.

We chose Motivation because of the obvious resonance with my spinal cord injury personal history and my professional background in occupational therapy. Additionally, the charity has supported several organisations in Eastern Africa along our route. To boot, like us they’re based in the South West and on visiting them we were impressed by the personable welcome and friendly efficiency emanating from all at the Backwell office. There, we arranged to meet up with one of Motivation’s partners, the Kilimanjaro Association of the Spinal Injured (KASI) in Tanzania.

Richard and the KASI crew: Prosper, Faustina, Zacharia and Hilda

We met Faustina Urassa from KASI and the organisation’s directors Zacharia Massawe, Hilder Shoo and Prosper Kiluwa at the modest KASI office in Moshi. All posts are voluntary and the committee is elected by the 240 or so members in the Kilimanjaro area. Zacharia was a founder member and he poignantly noted that all of the other members of the original committee are now dead. (It is staggering to think that throughout the developing world, 75% of people who experience a spinal cord injury will die within 18 months from secondary complications. In the UK life expectancy is normal.)

Supported by Motivation over a number of years, KASI acts as a model for other fledgling self-help groups in Tanzania. Their scope is wide and includes visiting newly injured people in hospital and later at home, educating them and their families about living with a disability, as well as providing peer group training in week-long ‘camps’.

It is sobering to see how hard people need to work to approach standards which are taken as rights in the UK. Prosper told us that Dala Dalas (minibus taxis) will not take wheelchairs and buses charge double fares. Consequently he gets a taxi at $10 (USD) from his house to the office. It was something else to think about – people had travelled in at significant personal expense, just to welcome us.

With simple, well-informed interventions KASI is saving lives, improving outcomes and raising awareness in communities. Their optimism, professionalism, altruism and enthusiasm is incredible.

Even though KASI is struggling with inflationary costs, increasing demand and competing governmental agendas, the effect their efforts have on well-being, survival and successful integration with communities is plain to see.

This was brought home to me later in the trip when we reached Addis Ababa. Here it seems there is currently little to no support for many people with disabilities. It is not uncommon to see paraplegics, without wheelchairs, dragging themselves along the pavements, with nothing but a pair of discarded flip-flops on their hands as their only aid.

Victoria Falls: 'absolutely gob-smacking'

The truth is that life in developing countries can be brutally harsh when something like disability strikes. One rehabilitation manager told us about the dilemma of how to get people to focus on rehabilitation, when their real and pressing concern is getting enough to eat. “We are often dealing with the poorest of the poor, and I really mean that,” she said.

For the wonderful privilege of witnessing Africa’s obvious attractions, there is a starker learning. It makes sense for those who can to help those who get struck by life’s random lightning. People such as the guys at KASI are bound to be those most motivated to develop their own local, sustainable, and relevant solutions. Motivation is a great channel to help give disabled people in the developing world just the chance they need.”

You can read more about Richard and Rachel’s trip on their website.

If you’re a regular visitor to our blog you’ll know about our exciting plans for a new peer training programme in Tamil Nadu, India (Jen Howitt Browning blogged about this just before Christmas).

Today we’d like to introduce you to Murugen, one of the people Jen met in Tamil Nadu.

Murugen in his Motivation wheelchair in front of his fully accessible home

An accident in 2009 left Murugen with a life-changing T10-12 spinal cord injury. But thanks to rehabilitation and vocational training at Amar Seva Sangam and a Motivation wheelchair, today Murugen is completely independent. He’s made his house fully accessible and he supports his wife and two children by going out to work as a tailor.

Murugen is a great role model for people with disabilities and we’re delighted that he’s keen to get involved in our new project. We’re confident that he’s going to be an excellent peer trainer – and hopefully we’ll be blogging about his progress!

Here Motivation’s Jen Howitt Browning describes her recent trip to southern India, where we’re hoping to set up a much-needed new peer training programme (for the low-down on our peer training, read this earlier post).

We were going to make this a two-parter as it’s quite long, but it flows better as a single post – hope you agree.

Jen and Sangita

Day one

After what feels like the world’s longest flight, I’ve arrived in Chennai, or Madras as it used to be called. This is my first stopover on my way to Ayikudi, in Tamil Nadu, where I’m going to meet with an organisation called Amar Seva Sangam. Motivation has been working with them to distribute wheelchairs through a service they have set up, but now we’re in discussions with them about starting a peer training programme.

Outside the airport, I’m greeted by Sangita from Motivation’s India office. She looks amazingly well rested considering she has travelled from Bangalore and has been waiting outside in the heat for me for almost two hours. We pile into a taxi and head to our hotel in Chennai to get a whopping four hours’ sleep before another long journey south.

Day two

After a quick breakfast of Chennai specialities (Sangita patiently answering all my ‘what is that?’ and ‘what’s in that?’ questions), we head out into the crazy, colourful morning rush hour to make our way to the airport.

As we make our way to security to go through to the gate, the security guard refuses to let me pass. ‘You can’t come through in your wheelchair,’ she says. ‘It’s not allowed.’

After much arguing with the staff at the airport and the airline, we finally agree that if I go back to the check in desk and put my wheelchair through the giant x-ray machine and then put a sticker on it which says ‘checked’, then I can go through security in my own wheelchair.

Despite our best efforts to explain why this is so important, I get the impression that everyone thinks Sangita and I are insane to have made such a fuss when they have their own airport wheelchairs there and a nice gentleman who is paid to push people in wheelchairs to their gate.

A quick flight later and we’re in Tuticorin. Now only three hours left to go!

When we finally arrive at Amar Seva Sangam, it’s dark outside but I can already tell that this place is special. After coming through a large set of gates, we drive down wide lanes and take several turns to finally get to our guesthouse at the back of their compound.

The spinal injuries centre at Amar Seva Sangam

Day three

After a much needed lie-in, Sangita and I head down to the ‘Barrier Free Dining Hall’ as it says on the front of the building and I get my first proper Indian breakfast, eaten out of metal trays with my hand. Sangita explains to me that they have a policy that everyone, regardless of disability, must wash their trays up themselves and put them away.

I learn that Amar Seva Sangam was set up in 1981 after a man named Mr Ramakrishnan had an accident on his way to an interview for his naval training and realised how little support there was for disabled people. It has now grown into an enormous centre, with a vocational training centre, special education school, hostel for disabled people, spinal injuries centre, physiotherapy centre and an orthotics workshop.

We take a tour of the facilities and meet the staff who are all so keen to show me what they do. At the special education school for children with intellectual disabilities, I’m invited by the teacher (who has cerebral palsy herself) to ask one of the pupils in the vocational class what the price is for an item in a special ‘shop’ cupboard that they have.

‘How much is the toothpaste?’ I ask.

After staring at it intently for a few seconds, he looks back at me with a smile and says, ‘10 rupees madam. Would you like to buy it?’

I politely decline (I already have toothpaste after all), but I leave feeling a bit guilty. Perhaps I should have given him 20 rupees to help him learn to make change?

Jen meets with patients at the spinal injuries centre to plan the new training programme

Day four

Sangita and I head over to the spinal injuries centre to meet with the patients and staff.

We learn that they have many of the same problems in India that we see all over the world: high rates of dangerous pressure sores, little training in how to prevent them, poor mobility skills which makes it difficult to get around on the very rough, inaccessible terrain. Judging by the number of questions I’m asked about my own management routine, bowel and bladder management is clearly also a major concern.

After I show them a video of the wheelchair skills training that Motivation did in the Solomon Islands in June, they tell us that this is definitely needed here in Tamil Nadu. We spend the next hour planning out the details and come up with a project plan for how to get started.

That afternoon we visit several people with spinal cord injuries (SCI) in their homes so that we can better understand the challenges that people face.

During our last visit of the day, we meet an 18 year old boy who fell from a tree eight months ago and is waiting to be admitted to the spinal injuries centre. He and his mother have had no information or training about SCI and as a result he has developed pressure sores on both hips.

I spend some time teaching them both about pressure sores and how to prevent them, as I can’t bear the thought of them waiting to learn about this until we raise the funds to get the project started. That could take more than six months, and by then this boy might have developed an infection and died. It’s suddenly very clear how urgent the need is for a peer training programme.

The road into Gulu, Uganda

Monday

It’s 7am and I’ve arrived in Entebbe from Heathrow.  We get straight on the road, crawling through the Kampala traffic before hitting the dead straight road that takes us north to Gulu. It’s a long but beautiful drive: Uganda at its most green and lush. We arrive at our hotel at 4pm.  I have to ask the staff to remove the door to my bathroom so that I can get in there in my wheelchair and they’re pretty good about it. Otherwise I’d have done it myself – there’s a reason I always carry a Leatherman…

David interviews a Motivation wheelchair user

Tuesday

There are now fewer NGOs in Gulu than when I was last here in 2006. Now that the conflict with the Lord’s Resistance Army is over, it seems much of their work is done. I interview Millie, whose son Geoffrey has cerebral palsy. I don’t have to ask many questions: Millie just opens right up. She describes how her neighbours told her to just let Geoffrey die, that he’d never be any use to anyone. Fortunately Millie had the courage to ignore them. She and Geoffrey attended Motivation’s training for parents of children with cerebral palsy, and it has had such a positive impact that Millie has become a trainer on the programme herself so that she can help other families.

Wednesday

I arrive at a meeting with an NGO to discover that the person I’m meant to see is in Kampala. I’m passed to a second person, and then a third person tells me the second can’t see me because he is praying. Can I come back in an hour? We’ve done some work with them on accessibility but when I head back later I find two steps up to their office and a lovely big muddy puddle right in front of them. I won’t divulge the name – but it’s an international NGO that should know better!

Sadiki's doughnuts – yum

Thursday

I’m with Sadiki, a Motivation wheelchair user. He became paralysed when he was working in Sudan and was shot in the back. Sadiki starts describing how, when he returned to Uganda, his family sent him away. But then he breaks down, so I suggest we leave the interview and get some photographs of him doing his job: baking. I get dozens of stills of Sadiki cutting, rolling and shaping dough for doughnuts (they’re delicious). Taking portraits is harder. Persuading Sadiki to smile for the camera is a challenge – like everyone I’ve photographed on this trip, he’s taking it very seriously.

"Over here!"

Friday

Our wheelchair basketball programme is a brilliant photo opportunity.  Watching the kids whizzing around the court in our sports wheelchairs in their brightly coloured vests, throwing balls all over the place and just having the best fun is the highlight of my week. Even better, the court is on the corner of a busy dirt road – so the traffic sees the games and is presented with a hugely positive image of disability. I make the staff promise that they’ll never grow a hedge there!

Rob (on the right) with some of his trainees in Haiti

We’re delighted to introduce you to our latest guest blogger, Motivation training consultant Rob Mattingly. We asked him to blog about his recent trip to Haiti and he kindly obliged. So here’s Rob…

“The security advisor gave us a brown envelope containing a mobile phone, emergency top-up voucher and $100 cash to be kept on us at all times.

The instructions in the event of being kidnapped were to hand over the mobile as a means of communication between the hostage takers and the ransom payers.  In this way, the French Embassy and Special Forces would be able to locate our position using the phone signal – all very reassuring.  We weren’t allowed to walk on the streets and had to phone in our vehicle number and driver’s ID at the start and finish of every journey.

I’d never been briefed on kidnap scenarios before. But then I’d never been to work in Port au Prince, Haiti before either.

I was there to run some training with Motivation for Handicap International (HI).  HI is an aid organisation supporting disabled people in many countries around the world.  In response to the devastating earthquake in Haiti in 2010, HI has established a rehabilitation centre in Port au Prince.

Seven-year-old Jacques had spent his whole life lying down

One of the services offered by this rehab centre is a wheelchair and supportive seating service. My co-trainer Lauren and I were there to train staff in the clinical skills and knowledge needed to support children with cerebral palsy.

We covered how to assess clients and how to prescribe, assemble and fit Motivation’s supportive seating products – the Moti Start and the Moti Go. Between them, these two seating products provide postural support for infants through to teenagers.

One of the children who came to the training to benefit from the seating service was seven-year -old Jacques, who has cerebral palsy. We discovered that Jacques had spent his whole life lying down, unable to walk, stand or sit. He has never been to school.

Jacques being fitted for his life-changing Motivation Moti Go

A team of course trainees assessed Jacques and assembled a Moti Go to give him exactly the right support. Immediately Jacques was able to sit upright, make eye contact with us and – most importantly – become mobile.

Jacques is now able to move where he wants, when he wants – independence for the first time in his life.  He will now be able to attend his local school.

At the end of the fortnight Lauren and I were able to return our emergency dollar stash unopened. We left with a much more upbeat impression of Haiti and some happy memories.”

Our Chris with two of his trainees in Haiti

What makes our training special? Our Training Coordinator Chris Rushman, who joined Motivation as a fresh-faced industrial design graduate way back in 1995 (he’s not quite so fresh faced these days…but he’s lost none of his passion for what we do!) explains: “If you come along to one of our courses, you get a unique, global view of wheelchair users and wheelchair services – and at the same time you’re supporting a disability charity doing some great work overseas.”

If you’re going overseas…

If you’re thinking about working with wheelchair users overseas, ‘Wheelchair Services in Low Income Countries’ could be the course for you.

“This is a one-day introduction to wheelchairs in developing countries,” explains Chris. “We look at all the different types of wheelchair you might come across overseas and we talk about which ones are acceptable – and which aren’t. We cover basic wheelchair fitting and assessment skills in a format we’ve found works well in developing countries, plus health issues for wheelchair users like pressure ulcers.”

Our experience after the Asian Tsunami in 2004 and the 2010 Haiti earthquake taught us a lot about wheelchair provision in emergencies. Our Emergency Wheelchair Services course looks at setting up services in high stress, chaotic environments.

“After a disaster, if you’ve got an efficient wheelchair service up and running, you ease the pressure on the whole emergency response system,” says Chris. “By getting someone in a wheelchair, for example, you’ve freed up bed space in hospitals. And by getting that person mobile again, they can be reunited with their families – so you’re reducing that sense of displacement.”

Chris leading wheelchair service training in Haiti

This course also looks at making emergency health facilities and camps accessible. “In the camps in Haiti we found that all the tents were put up one and half feet apart,” Chris remembers. “You could walk between them, but you couldn’t go between tents in a wheelchair. If they could make that gap five feet wide every third tent along, you’d improve wheelchair access throughout the whole camp.”

If you’re staying in the UK…

We’ve also got courses for people supporting wheelchair users in the UK. You might be a carer, a therapist, a teacher – or you might have a friend or someone in your family who uses a wheelchair and you want to feel more confident about supporting them.

“Our Positioning and Seating course is about making sure people are sitting comfortably and safely in their wheelchairs,” says Chris. “We’ll teach you how to recognise bad seating positions so that you can flag problems up to your local wheelchair service and get extra help.”

Wheelchair Awareness in the Community covers what its name suggests. “We look at simple things that have a big impact, like showing you how to get a wheelchair user up and down steps. That can really enhance the wheelchair user’s freedom and independence,” says Chris.

Like to find out more?

Drop Chris and the team a line at uktraining@motivation.org.uk or call us on 01275 464012. And please share this blog post with any colleagues, friends or family who might be interested – thanks!

Our guest blogger Simeon Wakely

You may have heard about our wheelchair sports programmes in developing countries – but did you know that Motivation promotes wheelchair sports in the UK too?

Here Simeon Wakely tells us what it’s like to be part of the South West Scorpions, a Bristol-based wheelchair basketball club supported by Motivation.

“Hi, my name is Simeon Wakely.  I am 15 years old and I am a team player on South West Scorpions. South West Scorpions is a youth wheelchair basketball team. The club started nearly two years ago. I first heard about this club through school and decided to go along. Since I was seven I longed to be in a wheelchair basketball team.  Before going to training I had a few disappointments in other clubs.

When I first arrived at Filton College I did not know what to expect. There were not many people there but that did not stop me from having fun.  As the day progressed I started to enjoy it even more.

Since being in the club I have learnt so many new skills, not just with the ball but wheelchair skills too, for example how to use your chair to block your opponents on the court.  Sounds simple but trust me, it took me weeks to grasp this technique.

Simeon with his fellow Scorpions

Being in the club has given me so many new opportunities such as playing in matches. I will never forget our last game. It was against Aces and we were winning 10-6. But then we got tired and we were staying at ten points but Aces were creeping up and fast. Unfortunately we lost the game but just to be in that atmosphere was amazing.

I think the best thing about being in the club is, well, two things: you get to meet new people, and secondly you get to learn new skills and then put everything you have learnt in the game.

I would really recommend South West Scorpions because it is a great opportunity to learn how to play the game and meet people.”

Want to get involved? Find out more about the South West Scorpions here.