Blog SCI Nepal

 Welcome to our blog

Ongoing needs:

Spinal Cord Injury Collaboration, SpiNepal, continues to be needed. Our main objective achieved, we DO hope SpiNepal can continue to provide financial support over the next few years for Continuing Medical Education, fellowships, observerships, etc as our trainees hone sub-specialty skills in the area of spinal cord rehabilitation and spine/spinal cord surgery. Where we can, we contribute to clinical needs in the hospital. We expect to support a rehabilitation medicine training program for which planning is beginning between Dr Raju, the SIRC board and the regulatory authorities. Your donations will continue to be of utmost importance and can be made through this link. UBC will issue Canadian income tax receipts and can also accept donations from the US (contact us for directions on how to do this).

Above: a patient at SIRC wheels across the courtyard after lunch – Dec 2018

December 23 2018 (Christmas in Kathmandu)

We’re back in Kathmandu for Christmas and the New Year, at the start of our tenth year of working with SIRC and others here in the Spine care community. So much has happened since our first meeting with the dedicated people at SIRC, many now friends. Thanks to you, dear readers, for your interest, support and encouragement.

SIRC has changed, expanded and matured, from 15-20 patients with SCI on our first visit to some 70 now, still mostly with SCI but with some folks recovering from brain injury or stroke.

The team has, over the last couple of years, trained some 400 health and allied workers about rehab in SCI and, some weeks back, funded by an Australian embassy grant, travelled to Chitwan in southern Nepal to conduct a training course.. The grant was sufficiently generous that, with the cheerful consent of the Australians, Raju and his team arranged two further 3-day hands on back to back workshops this week in the Kathmandu region. With no charge for attendance, and two free meals daily included, these two recent workshops have attracted middle level to senior level care staff – physicians, nurses, and physiotherapists for a total of about 60 attendees from about 20 health care institutions. Founding executive director Esha opened the first workshop on behalf of Spinal Injury Sangh Nepal (the Foundation); Founding Board Chair Kanak Mani Dixit opened the second with a passionate account of his early conviction that the poorer people of Nepal had need of a hospital that could provide affordable care to those with SCI. The General Secretary of the Association of Spine Surgeons of Nepal, Prof Dr Rabindra Pradhan, spoke of how vital spine surgeons now find the service from SIRC.

Our friend, physiatrist Christine Groves, living in Kathmandu and now in her fourth year supporting SIRC, and we presented talks on the consequences and complications of SCI and the care of SCI patients and local spine surgeons outlined their approaches to the role of spine surgery in the acute setting.

The lion’s share of the teaching was from Dr. Raju (teaching above) and the SIRC staff who gave talks on skin and bowel care, urologic management including urodynamic monitoring (left), sexuality, management options for the tetraplegic hand , psychological issues and disability rights.  (SIRC now has 3 urodynamic-trained nurses, does 4/5 urodynamic cases weekly and has weekly urologic/urodynamic rounds with the support of a Dhulikel-based urologist. In the workshops, Raju launches with enthusiasm into a discussion of bladder management including catheter techniques. After explaining the basis of urodynamic assessment, he leads the group up to the urodynamic lab. (A German supporter is going to help with cystoscopy equipment.)

The need for use of the International Neurological Standards was explained and taught by staff (Raju with one group, right) and was practiced by course attendees. The participants were also involved in hands-on demonstrations of safe extrication, positioning and transfer techniques, intermittent catheterization and wheelchair use. Raju and the other SIRC presenters taught with professional polish appropriate to any international meeting, moving easily between Nepali and English. Also bilingual, Christine contributed to the overall high caliber of the workshops.

Helping cord-injured children: the Spinal Cord Injury Network 

On our first Saturday here we visited the twin hostels of the Spinal Cord Injury Network, accommodating now up to 15 children with SCI (for background please visit the Sept 5th blog entry) .

Founder Rishi, one of SIRC’s peer counsellors, and manager Keshav must be very proud of the work which provides children with SCI a stable home from which they can continue their education through high school. Here are the stories of three o3f the students we met:

Laxman, 21, above left, from Dading fell from tree about 5 years ago and is paraplegic. He is just in grade 12, is interested in Uni, and will be will be sponsored by a German group. He is a table tennis and basketball champ.

Sangita, above centre, had her 21st birthday two days ago. On her first presentation with spinal cord weakness from a problem in her upper spine but was still able to walk. Following rehab she was able to walk but deteriorated and had surgery 2.5 years ago following which she was paraplegic. She is now In grade 11 and hopes to go to university; she is a table tennis champion.

Sumala, above right and now 11, fell as a child and apparently had surgery then. With recent skin pressure problems, she was in the SCIN hostel for a couple of weeks before being admitted to SIRC Her right hand is her good hand allowing her to draw and paint. Her future education may be based on her considerable artistic talent.

In accordance with SpiNepal`s mission to support education initiatives which improve the lives of people in Nepal with SCI, and at the request of one of our donors, we have sent funds to the SCIN and expect to provide further support as we learn more about their work. We were thanked for this by being presented with scarves, given lunch, having a tour of the facility and being introduced to all the kids!

SIRC continues to work largely without official operations funding, and cares for the most importune patients. Limited government funding fails to fully support the necessary care components of SCI patients (acute care, implants, drugs, rehab care and equipment, and home modification), and, as auto insurance is a recent concept, it contributes little to the pot. SIRC administration is looking at marketing options to meet the needs of better-funded clientele who could pay for care and is exploring other ways of generating revenue. Hospital director Hari (we would call him the chief operating officer), new this year, impresses us and seems to work well with Raju whose managerial skills are flourishing.

November 16 

Thanks to Dr Jordan Farag for sending to us a recent “Physiatry Forward”, the newsletter of the Association of Academic Physiatrists. Look for page 4 through this link to read a delightful interview with Dr Christine Groves (right), Raju’s mentor and colleague in Kathmandu who has been a great support to SIRC over the last three years.

November 8-11 2018 (Annual ASCoN meeting in Yangon, Myanmar)

The Asian Spinal Cord Network (ASCoN) is the regional affiliate of the International Spinal Cord Society (ISCoS) that provides support for SCI care systems throughout the region. The members provide a lot of mutual support and share their experiences at the annual meeting, coordinated by Stephen and Maggie Muldoon – the couple who invited us to Kathmandu many years ago. It is an important forum for Raju and others from SIRC to attend when possible, and was linked this year with a preliminary five day “Training the Trainers” course (right), taught primarily by Dr Apichana Kovindha from Chiang Mai, Thailand, a superb teacher. 10-12 rehabilitation physicians experienced with SCI and potential leaders in their hospital or country were sponsored to attend the course.

 

Raju (left, with SCI nurse extraordinaire Fi Stephenson) was also invited to present in an ASCoN panel discussion on “SCI Rehabilitation: How to overcome the challenges”, joined by others from Myanmar, Malaysia, Bangladesh, Sri Lanka, Indonesia, Philippines and Thailand. Raju’s participation on this program was supported by the organisers with accommodation and complimentary registration; we agreed to fund additional accommodation costs and the air fare arranged as usual through Regency Travel in Vancouver.

We are also providing some support to SIRC physio Prakriti Khatri, working with SIRC supporter and physiatrist Dr Christine Groves. Their abstract “Spinal Cord Independence Measure III outcomes among individuals with complete spinal cord injury in Nepal” was accepted for presentation at ASCoN.

November 7th (Diwali and Tihar)

Kathmandu’s Tihar 5 day festival is Nepal’s extended version of Diwali, second only to the annual Dashain festival. Each day of the festival has a specific function – beginning with the day of the Dog. In India, Diwali has again caused tremendous increase in the pollution in New Delhi: One research group, Urban Emissions, estimated five million kilograms of fireworks had been burst (according to the Guardian).

September/October 2018           

This was a notable birthday month. Prakash (left, at work) shows traces of an errant birthday cake; (right, at home) with Ritika on the occasion of her third birthday October 13; Laxmi holds her little sister Eshita; Raju (below left) holds Evani on her first birthday on October 17th.

October 13th 2018 (Asian Paralympics)

The Nepal Paralympics team (including some of our friends from SIRC) competed in the 2018 Asian Paralympics in Jakarta, Indonesia. Below – Front row: Keshav (first left), Sonika (second left) and Dolma (last right). Thanks Kate for bringing this to our attention on your blog.

 

 

 

September 5th 2018 (Spinal Cord Injury Day)

Spinal Cord Injury Day, to be celebrated annually on September 5, was inaugurated by the International Spinal Cord Society (ISCoS) to increase international awareness of SCI by the general public and to focus on injury prevention. The theme this year is simple: “Stop Spinal Cord Injury“.  A poster competition is under way, and we hope to display the winner in a few weeks.

Dr Raju just returned from New Delhi following a three-day workshop addressing the need for enhanced SCI prevention programs in India and the other South Asian countries who participate in the Asian Spinal Cord Network (ASCoN). Prevention is an important responsibility of any SCI program, and the principles outlined in the previous ASCoN guidelines booklet are being updated. The previous ASCoN prevention guide can be found here

Spinal Cord Injury Network Nepal We want to bring to your attention a tremendous program in Nepal. The Spinal Cord Injury Network Nepal (SCIN) was established in 2015 by 7 people with spinal cord injury (SCI) and is the particular brainchild of Rishi Ram Dhakal, one of the team of peer counsellors at SIRC since 2009. It is a nonprofit, social organization providing peer support and has been registered appropriately in Nepal. Currently, their major project is the independent living “practice home”.

The practice home allows young persons with SCI from economically weak families to complete their education up to grade 12 in a safe, supportive and accessible environment providing “a home away from home“. Once young people with SCI return home to their villages, the inaccessible environment can make it impossible to continue education, isolating young people both from their friends and the opportunity to learn. SCIN Nepal obtained a five room apartment in March 2016 to provide a home for seven children with SCI, including five males and two females. A caretaker was hired and a small office set up. They have managed with donations from individuals, including donations-in-kind of food, equipment and some furnishings.

Spine Nepal became aware of SCIN through our friend Kate Coffey of Bowen Island, who has supported the Spinal Injury Rehabilitation Centre as well as raising funds for SIRC and for Spine Nepal. Kate first described SCIN’s work in her Bowen to Bangladesh blog in 2016, including this explanatory video:

SCIN emphasizes that these young people with SCI have not been abandoned by their families but are loved and cherished by their families who recognize that the practice home provides the only opportunity for the children to continue their education and become independent and active adults. Families do contribute financially, according to their means. Admission is possible for young people, age 8-20, whose education to grade 12 is incomplete and who are from financially challenged families living in a remote area. They have to be able to care for themselves, to be willing to study and to contribute to their community.  With permission, we hope to feature one or two of the students on this page.

One of our donors at this time has requested that funding be directed to the support of SCIN. Spine Nepal sees the SCIN mission as being complementary to the work that we and SIRC undertake. We have received Kate’s endorsement of SCIN, one donor has visited the SCIN home and been impressed with its work, and we have had helpful additional financial evaluations by Dr. Raju Dhakal. Dr. Raju has himself grown up in a similar environment, and supports the mission of this nonprofit affiliate of SIRC. We have also reviewed the income and expense statements for SCIN for the early part of this year and are impressed by the care and thoroughness that Rishi and administrator Keshav have brought to this work. We expect to visit Kathmandu again at the end of this year and look forward to learning more about this important project.

As Kate said on her blog in May: “The hostel has basic accommodation, spotlessly clean and well cared for by a hired Didi – a local lady who cooks and cleans for the children, and gets them off to school in the morning.    Didi actually means Older Sister in the Nepali language.  I think it is fitting that the lady that cares for them is indeed like their older sister in their home away from home.” For more information please refer to Kate’s initial description of the work of SCIN here and her most recent updates from this summer here and here.

 

May 30 2018

We had one of our sometimes frustrating conversations with Raju in that Viber kept dropping our call, but a Viber-out phone call seemed to overcome that challenge and it was a rewarding time for us to catch up on life in Kathmandu.

Raju has been invited to join the editorial board developing a consumer module for ISCoS’s E-learn SCI teaching resource. He has also been invited to participate in an injury prevention workshop in India. He has had good coverage on TV and radio in Nepal, and feels that this will be helpful in a number of ways, enhancing awareness of SCI in Nepal, with respect to injury prevention and the image of rehabilitation generally.

Raju’s relationship with the hospital board has been a positive one of slowly developing responsibility. He reports directly to the hospital’s executive director and also to the Chairman and board on issues to do with patient care and the budget, and describes useful links with several individual board members. Mr Hari, the senior on-site administrator at SIRC attends the board meetings with him.  Concerning SIRC’s earlier wheelchair supply problem: Raju reported that a German volunteer organization has donated 4500 euros to buy chairs.

Sheela, Raju‘s wife, (right, with Evani) assumed her responsibilities in a new job on Monday  this week. Working initially on a three month contract with the Karuna Foundation Nepal, she expects to develop a CBR training package for the disabled. We wish her success in this new direction.

Raju understands that the Dhulikhel Hospital Spine service may initiate a spine fellowship. If this is to take place, it would seem logical for Raju to have input into their training curriculum so that the needs of the newly cord-injured person are adequately addressed, and so that newly-trained spine surgeons entering practice can implement the necessary precautions to minimize some of the life-threatening complications still developing at the acute centers.

Our colleague Dr Joanna Mereu just returned to Vancouver May 20th after a month spent working with Dr Raju at SIRC. Her background as a trained family physician with seven years of experience as a hospitalist on the Spinal Cord Injury service at Vancouver’s GF Strong Rehabilitation Centre was very useful as she worked alongside and taught Dr Raju and the two SIRC doctors. During the work week she stayed with the Kayestha family, friends of Spine Nepal supporter Kate Coffey in the historic town of Bhaktapur, part way between Kathmandu and Bhainsepati village where SIRC is situated. She commuted to work on the SIRC bus, and at weekends visited Raju and Sheela at their new home, visited Dr Christine Groves and her roommate (another emergency physician) in Lalitpur and was also able to visit Prakash and his expanding family (left). She overlapped with the visiting Swiss team from Nottwil’s Swiss Paraplegic Centre who work extensively with the multidisciplinary team on their periodic visits .

Joanna was impressed with the work being done at SIRC and with the warmth and kindness of the staff. She observed that largely-preventable pressure sores arising in the acute care hospitals continue to be a major problem for people with new injuries. The relationship between the rehab service at SIRC and the surgeons in the acute centres continues to be critical to address this problem. She described SIRC’s significant outpatient load; the case mix not specifically meeting the hospital’s major mission as many patients present with non-rehab conditions, taking Dr Raju’s attention away from the SCI inpatients. She made some logistical suggestions to the admin staff and the hospital board which we hope will support Raju in structuring the working environment to most efficiently use his and his assistant’s time and skills. Joanna also made constructive suggestions regarding bladder care, management of spasticity and aspects of pressure sore management.

Apr 14 2018

Happy Nepali New Year to all!!

The publicholidays.asia web site tells us that : “Due to the deeply ingrained traditions of Nepal’s more than 60 ethnic groups, there are actually nine different New Years’ Days in Nepal. They are all celebrated, but Nepal Sambat is considered the “national New Year,” bringing some semblance of unity in the midst of great linguistic, cultural, and historical diversity.”  The Nepalese calendar (Bikram Sambat, believed to have been started by King Bikramaditya) is 57 years 8 month and 15 days ahead of the Gregorian Calendar – we are entering year 2075. People visit various temples and (not unlike here) start new works, make new resolutions and exchange greetings on the New Year’s Day.

Bhaktapur, near Kathmandu, celebrates Biska Jatra in grand style at the same time as the New Year- for more, check out Kate’s blog or this brief video.

SIRC has just celebrated 16 years of operation. Here, courtesy of SIRC, are some images from the SIRC Spinal Nepal FaceBook page:

Left: The 16-year cake;     Centre: Guitarist patient Ashok, guitarist doctor Raju;     Right: Kesh Gurung paints

 

Apr 6 2018

After a long period during which we were travelling in a time-zone that made telephone discussions difficult, we have had long catch-up talks with Raju and Prakash since returning home. Both men were busy this weekend attending and presenting at the annual meeting of NESON, the Nepalese neurosurgeons’ professional association. Raju described the contemporary bladder management protocols after SCI,and Prakash presented his experience with craniocervical injuries.

Raju noted that SIRC has been busy with the daily census in the 65-70 range.  He has been very encouraged as he develops a good working relationship with the SIRC board members. The two house doctors have been working out well. He is looking forward to the visit this month of Vancouver emergency physician Dr Joanna Mereu who worked for a number of years as the hospitalist on the SCI service at Vancouver’s GF Strong Rehabilitation Centre and was one of the Vancouver group that Skyped with Raju after the 2015 earthquake.

Since returning from his neuroendoscopy mini-fellowship in Greifswald, Germany during which he assisted in a number of surgical cases, including spine cases, in the neurosurgery operating rooms, Prakash has been working at Mediciti hospital in Kathmandu with Dr. Sharma, his chief of service at Bir Hospital. He has a good and collegial colleague and two junior registrars. The work load has been satisfying: 26 OR cases in the most recent month. He has shared the details of a number of spine cases with us to assist in surgical planning and from what we have seen of the images, his work is sound.

 

On the home front, Prakash and Laxmi had an addition to the family: a daughter (right) whose naming we await with interest. Raju and (somewhat) extended family have moved into long-awaited accommodation with Evani (left). Raju’s commuting arrangements to SIRC have been working well and plans are being considered for another vehicle in addition to the SIRC bus which may reduce his commute time.

 

Mar 24 2018

SpiNepal friend Kate Coffey had made us aware of the recent proposal of the Spinal Cord Injury Network linked with SIRC peer counsellor Rishi. Since March 2016 they have had a ground-floor five roomed apartment in the Jorpati area of Kathmandu enabling SCI-injured children to continue otherwise inaccessible education. They now hope to build a larger home. (Raju is aware of and endorses this project.) Kate held a fundraiser on Bowen Island on this date and is sending the proceeds to support their residential program. You may read their recent proposal here.

Mar 12 2018

Kathmandu airport is a challenge for pilots descending into the valley. A horrendous crash of a plane from Bangladesh occurred on this date for reasons still not clear, though associated with poor communications with the flight crew. 52 people died including a senior Nepali neurosurgeon and, we understand, 12 recently graduated physicians returning home.

Mar 5 2018

Despite the demands on a busy resident in training, Jordan (our rehab resident who spent time at SIRC in the fall of 2017) managed to make it out to UBC for Dr Jeremy Spoon’s recent talk (March 5) at the UBC Himalaya Program evening. This research project focused on the effect of Nepal’s earthquake on small communities, noting that earthquakes don’t preferentially destroy low-income countries, but those countries have poorer infrastructure/disaster responses that make them so much more vulnerable. Jordan commented: “It was fantastic. Great presentation about his work on understanding recovery post-earthquake… it was an eclectic group of participants (UBC students, trekkers, engineers, anthro/poli-sci nerds, me haha) and the discussion period was rich.” He stated that the take-home messages were:

  • They researched 4 VDC (village development communities) in rural Nepal (Gorkha and Rasuwa districts), 100 homes in each for a total of 400 homes. The pool was diverse… different cultural and religious group. They specifically picked 2 VDC’s close to roads (good access) and 2 at the end of the roads (low access).
  • They studied many variables (everything from accessibility to sources of income to regional hazards) and copious outcomes, both quantitative and qualitative (reconstruction of homes, livestock, psychological wellbeing, etc), and tried to find predictors of good/poor outcomes.
  • Data was gathered at 9 months and 1.5 years post earthquake. The follow up was unbelievable. 397/400 households participated on the second round. My jaw dropped when I heard that… Cell phones are great I guess.
  • The primary findings were that households exposed to different natural disasters (for example, mudslide/rockslide/wind storm post earthquake) had slower recovery. Households with more reliance on agriculture were also slower. Those with diversified sources of income (Eg. Labour/business instead of just farming) had better recovery. Those closer to the road were better off. There was TONS more data, but these were the main findings.
  • They plan on following up at multiple year intervals in the future.

“It was a cool talk because there was a little something for everyone in the room. Of course, I asked him about whether they sub-analyzed outcomes based on disability, and unfortunately they didn’t look at this. Nobody has done this in Nepal to his knowledge.”

More information about Dr Spoon’s project can be found here.

Mar 3 2018

While we were travelling in New Zealand we heard of Raju’s interview on a Kathmandu television socio-political chat show with politicians,celebrities and common people hosted by senior journalist and former BBC World Service broadcaster Suman Kharel. Suman Kharel “talks to celebrities and common people who share their struggle and success”. Raju’s comfort with formal speaking events clearly shows here even if the language is not ours: