Monthly Archives: July 2015
Nepal is not Haiti. The scale of the earthquake is of course very different. Around 8,800 people were killed in the first quake of 25 April, and a further hundred in the second quake in May. In Haiti the numbers reached 200,000 including many senior civil servants which effectively meant that large parts of the government became dysfunctional or non-existent. This is not at all the case in Nepal where the government is clearly structured and very active in the earthquake response, working alongside agencies such as CBM to distribute emergency relief as well as post-emergency non-food items such as tarpaulins, sanitary kits and corrugated iron sheeting. However, people with disabilities are disproportionately affected at times of crisis and my time spent in Nepal demonstrates clearly how the often sporadic and uneven response often fails to reach those who need it most.
I am wandering through the rubble strewn streets of Bhaktapur with social worker Pramita. We pass a line of people waiting for government relief who have been standing in the sun for several hours. At the front of the queue, the crowd at the kiosk window is 3 people thick and I try to imagine how someone with reduced mobility or a wheelchair user would be able to get to the front. “What happens if someone can’t come to collect relief supplies themselves?” I ask, thinking of others in more remote rural areas who may live several hours walk from anywhere accessible by road. “They ask a relative or neighbour to come for them, “ Pramita replies. “What happens if the relative or neighbour was killed or injured themselves, or is unable to spare so much time?” I ask. She sighs. “Then they might miss out,” she admits.
I learn more about the reality of this when I visit CBM partner, the National Federation of the Disabled Nepal (NFDN), an umbrella organisation representing a network of disability-specific bodies. The National President, Shudarson Subedi, describes story after story from these member organisations describing people with disabilities who were often just not aware of relief opportunities available, or unable to reach the distribution points which were many hours down steep hillsides.
NFDN has responded to this in a range of ways, including a project to introduce radio and SMS alerts to ensure those with hearing or sight impairment are aware of all rehabilitation opportunities. However, their most powerful approach has been in finding a stronger voice in the country’s rehabilitation efforts, working closely with the government to ensure that the “building back better” efforts are inclusive not only of people with disabilities but are inclusive of all those with specific and needs. In addition, they are helping to increase the extent to which people with disabilities are active participants in the decision making about reconstruction of health, education and livelihood systems and structures.
The next day I visit new CBM partner, the Spinal Injury Rehabilitation Centre in Kavre, which normally caters to around 40 patients with spinal cord injuries but is currently housing 110. To cope with this dramatic increase in numbers, CBM is supporting the hospital with emergency wheelchairs and anti-pressure sore cushions for earthquake affected patients. SIRC Director, Esha Thapa, explains that they might normally expect a patient to spend 3-6 months with them undergoing surgery and then extensive therapy and rehabilitation. However, with only 10 occupational therapists in the whole country, the rehabilitation phase is likely to take longer for so many new patients. SIRC would also expect to carry out around 50 home modifications in a year, but 90% of the patients who have been admitted with earthquake injuries have lost their homes.
We visit the stepdown facilities – huge tents erected in the hospital grounds – which allow those who have received surgery and rehabilitation at the hospital but who are not quite ready to leave the hospital. They can spend two weeks staying in the tents, being observed as they learn new ways of coping with daily tasks. The burden of this sudden physical trauma and the aftercare is a heavy burden not only on the injured person but also on their family or friends who stay with them at the hospital as primary carer. Esha describes one patient brought in by her neighbour who was forced to discharge herself far too early because the neighbour’s husband wanted her at home. Another left hospital before receiving any of her physical therapy treatment plan because she was frightened of missing out on the relief materials being distributed in her village.
But some are there for the longer term. One young boy was carried by his neighbours from the ruins of his collapsed house in which his parents were killed. But with no family and no home to return him to, they were unwilling to take him back once his treatment had been completed. Another man, having seen the photographs of his own destroyed house and the devastation of most of his village, had no desire at all to go home.
CBM has been working with local partners in Nepal for 30 years and the CBM country office and emergency response unit were able to respond within hours of the earthquake starting. CBM will be there not just for the weeks and months that follow the earthquake but, continuing to work through local partners and influence the government, for the years that will be needed to ensure that the post-emergency response and the rebuilding of the country’s structures and systems are inclusive.
Late last year, I had the opportunity to meet Valieth and Susana, two young sisters who had been identified through a community screening. They both had congenital cataracts. We arrived at their home and were greeted by the girl’s grandmother Fausta. As the she told us about their life and the challenges that she faced trying to take care of two young girls, she soon broke down in tears.
Fausta told me about the Bible verse that has helped her get through the hard times and give her the strength she needed and it is a verse that I have reflected on many times since my visit. James 1:12 Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life which God has promised to those who love him.
Although I knew that the surgery for the girls would not be some magical fix for the family’s hard life, I knew that it would ease the burdens they face and provide the girls with a brighter future, giving the girls an opportunity when they grow up to repay their grandmother for her love and kindness.
When I returned to meet them at the end of June, I was not disappointed. I was greeted by the Fausta and the girls, who skipped and danced around me. Smiles beamed from their faces and I could see instantly that the support that CBM had given for the surgery was life changing. They were delighted with the teddy bears that had been given to CBM by one of our supporters and continued to play as I talked to Fausta, and I knew that for Valieth and Susana that life had changed for the better.
I showed the family a printed version of their story with photos from last year, and they gathered around remembering the day that they had travelled to hospital and had their sight restored. I also shared with Fausta prayers from supporters in the UK for which she was truly touched. I felt humbled by the thanks that she gave to CBM and wished that our supporters could feel this joy first hand.
The girls have been back to the hospital for follow up, but will need to go again, it is likely that they will both need glasses and Valieth will potentially need more treatment on one of her eyes to ensure she has the best vision possible. But the future is looking brighter now, the girls are enrolled in school and are fulfilling Fausta’s dream of getting an education.
Glaucoma is the second leading cause of blindness worldwide, after cataract. But unlike cataract, the blindness caused by glaucoma is irreversible. That’s why identifying the condition early and treating it effectively is vital to save sight.
In this blog, the second in our series showcasing how CBM is helping achieve the Vision 2020 targets towards eliminating avoidable blindness, CBM glaucoma specialist Heiko Philippin, who is based in Tanzania, East Africa, talks about his work treating glaucoma in Africa.
I started working at KCMC in Tanzania in December 2009. Each year, we carry out around 2,500 glaucoma examinations, some of the patients come repeatedly – so 1000-1500 patients with glaucoma each year. Around 100 or less would be children with paediatric glaucoma.
The main challenges are that patients present late – there are numerous different reasons for this – and that treatment options can be limited.
CBM is supporting the management and treatment of glaucoma at a number of different levels. Treating glaucoma is challenging – the condition requires life-long treatment and follow up. In large parts of Africa, we do not have all of the treatment options available as in Europe for example, though at KCMC we have a reasonable amount of treatment options, especially now also with the new laser treatment.
The appropriate treatment option depends on the age group, the stage of glaucoma and the amount of eye pressure reduction which is necessary. We usually start with eye drops or laser, if these are not feasible or not enough then surgical options come into place, mainly a procedure called trabeculectomy. Shunts, which reduce the pressure, are usually only used in desperate cases.
The choice of eye drops is limited in Africa compared to in Europe. In a lot of areas in this region, we only have one type of drop available, while in Europe there are 6 different groups of eye drops available. Over the years things have definitely improved in larger urban centres, though. At KCMC we can offer 4 different types of eyedrops, but this is not common.
The second group of treatment is laser – this is also limited – and the last treatment option is surgery. The most common is trabeculectomy; we can offer our services at similar standards as in any other country.
The next improvement is that we are planning to offer tubes (shunts) which reduce the eye pressure. Aravind in India has now developed a low cost shunt. Often the patient will have tried eye drops and laser before this option
CBM has helped with the procurement of eye drops, which are often not part of standard procurement, and has helped finance larger equipment, which would not be possible otherwise.
CBM has also supported training – I have received specialist training and now offer fellowships in Glaucoma to doctors in Sub Saharan Africa. CBM also offers training to ophthalmologists including the treatment of glaucoma.
I am currently running a trial for a treatment called Selective Laser Trabeculoplasty (SLT), thanks to a joint grant from Standard Chartered’s Seeing is Believing programme and CBM. SLT has been in use in the UK and elsewhere for several years, but this is the first time it is being trialled in Sub-Saharan Africa. We want to find out if the laser treatment is equal or better than the standard treatment which is currently available here. If it is equal or better, then the laser treatment will offer pressure reduction for one or probably more years without the need for the patient to come back every few months for eye drops. Patients are often not able to take the eye drops for different reasons, so we are hoping that the overall treatment of glaucoma will improve.
Of the patients I see, 100 or less are children. They often have a different type of glaucoma, they can have congenital glaucoma or secondary glaucoma due to other eye problems, both are challenging to treat.
I see a lot of patients who are blind according to the WHO definition – visual acuity of less than 3/60 – roughly they could count fingers up at a distance of 3 meters. If you use this definition then a lot of my patients I see are legally blind.
Glaucoma patients who have low vision or even have no visual function left, who cannot differentiate between light and darkness we refer to the low vision department, where we advise on low-vision devices so that they are able to do daily activities better. We can also assist for example in using a cane so they can move around more safely, and we refer them to CBM partners, Tanzanian Society for the Blind.