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 Motor Neuron Disease (MND) is a condition rarely seen by our team
It is a disease that affects the nerve supply to the muscles starting initially with weakness of the arms, legs tongue and neck.
Sandram and myself made a home visit to this 24 year old gentleman on the motorbike through rough terrain. We found him and his carer upbeat and welcoming – a testament to the Malawian human spirit. We were able to talk with both James (not his real name) and his mother, make an assessment and provide much needed medical supplies. During the consultation, medical, psychological, social and spiritual issues were discussed and a plan made to tackle the concerns that arose from the consultation. Records of each appointment are made and they will be visited again in two months time to ensure that they receive continuity of care.
This kind of outreach service enables us to provide assistance to those with financial and transport issues who would otherwise receive none.
post written by Dr Will Kenny-Levick (visiting Doctor)
a few examples from clinic today:
patient 1 : discussion about use of condoms for him and his wife who are both on antiretroviral therapy – ARV – (condoms are still necessary to prevent spread of resistant strains of virus)
patient 2 : known to us for some time. previous poor social support is now better as he is in contact with his mum and is now also an active member of his local Catholic church. This time last year he couldn’t walk and had smelly wounds, today he looks much brighter.
patient 3 : known to us since 2008 when she had aggressive disease in pregnancy, she’s continued well and gets slowly stronger and more mobile…her husband – a primary school teacher – has not yet tested for HIV despite her years of disease. we discuss and ask him to come in with her next time.
patient 4 : 50+ year old lady doing well after 18 doses of chemotherapy. She and her husband are both on ARVs. They have 6 children from 19 to 9 years of age, discussed tools they could use to begin to discuss the topic of HIV with their children.
patient 5 : 28 year old lady, 7 months pregnant. Not happy. Already has 3 kids. Her husband was using condoms but didn’t use correctly one night after drinking.
patient 6 : 25 year old man from far off district. Unable to get transport money for regular visits. Both parents died some time back and he lives with three young sisters. Family relationships sour. Cancer progressing and pain. looks withdrawn. Pondered on the nature of hope and discussed possible support mechanisms. Transport money, blanket and pair of trousers given from donated support.
patient 7 : 40 year old lady who is failing on her second round of ARVs. Now developed Kaposis Sarcoma (HIV related cancer) and is already on TB treatment. Her husband is currently studying in Japan, he’ll be back end November when we can discuss support more. She is sad and struggles to cope with all this news today.
HIV…it’s a family affair
Currently four team members are studying for higher qualifications in palliative care at Makarere University, Uganda under courses run by Hospice Africa Uganda. Their training provides an excellent foundation in palliative care for both nurses and clinicians. Two team members are now in their 2nd year of a BSc programme. These two nurses (one from the children’s team , the other from the adult team) have just returned from their attachment period for the Diploma in palliative care – and are proudly wearing their T-shirts to show it!
Tiyanjane clinic offers in-patient, out-patient and home based care palliative care services to adult patients. The clinic was establised in 2003 at Queen Elizabeth Central Hospital (a tertiary referral teaching centre in the Southern Region of Malawi), and since 2005 we have had with a community nursing team based at Ndirande Health Centre under Blantyre District Health Office. Services are integrated into the government health services as far as possible. Extra support is channeled through the Palliative Care Support Trust which enables us to employ more staff, keep a continuous supply of essential palliative care drugs. We are active in buildling capacity in palliative care in Malawi, being at the forefront of training medical students and enjoying a variety of cadres who spend time with us on clinical attachments. Please enjoy this short film which outlines some of our work
http://www.biomedcentral.com/1472-684X/10/12
A review of six months of our in-patient work.
 Robert is a 20 year old man we met on the medical wards about six weeks ago. He is severely physically disabled which has resulted in recurrent chest problems, now leaving him with bronchietasis (a chronic lung disease). Both his parents have died and his siblings left him at a church supported orphanage some years ago. Following a visit to the orphanage the team found that for a number of reasons – lack of support, dietary and physical care needs - life for Robert has been a struggle. Tiyanjane, through well wisher donations, have been able to provide him with a pair of glasses and some support for the orphanage staff to buy and prepare him food.
He expressed his gratitude with a big smile and ‘thank you’ when he visited us in clinic the other day. So we want to pass on thanks to those of you who support our work - you have enabled us to give back hope and dignity to Robert and others like him.
As well as the clinical work and teaching done based here in Blantyre, we have long realised the need to support fellow health workers based at district hospitals. Many patients come to Queens for diagnosis and management plans to be made with their ongoing care taken over by the district hospital after discharge. In order to ensure continued holistic support, appropriate referrals and ongoing pain management palliative care teams in the districts need to be well co-ordinated and have good drug supplies. A small team from Umodzi and Tiyanjane made presentations to medical and nursing staff at six different district hospitals during December and January, and clinical staff from these sites will come to us for attachments in the near future. This networking raises the real possibility of continuity of care and relief from pain all the way back to the home setting – sometimes as far away as the borders of Malawi itself.
Spiritual care is a recognised component of holistic palliative care. When faced by incurable progressive disease patients are often left asking questions such as ‘why me?’, ‘why now?’, ‘so what next?’ – which are not easily addressed by a biomedical approach alone. Our assessment form contains a brief inventory with four easy to ask questions about faith and spirituality. Some of these discussions develop with time after we have been caring for the patient at home as well as in the hospital, other patients are keen to discuss spiritual concerns immediately. We also ask if there is anything the patient (or family) would like us to do to help them with spiritual issues. One such patient (with no guardian, far from home, with advanced Kaposi’s sarcoma who had come to the hospital requesting amputation of his stinking leg) expressed the wish to see a pastor from his church denomination.
On the morning he was leaving our nurse was able to identify a pastor for ‘emergency spiritual care’. They chatted and prayed together in the clinic before his dressing was done and medications were given.
Tiyanjane make links with whoever we can to provide holistic care.
 on our way to the community Grief and preparation for death is a complicated process . All families have their history – feuds, reconciliations etc. perhaps complicated by second, third, ‘official’, or ‘unofficial’ wives and a variety of resulting offspring.
Malawi has a well recognised practise of property grabbing which may render a bereaved husband , wife and/or children destitute after the breadwinner dies, as the brothers and sisters come to claim property, goods and money soon after (and sometimes just before) the time of death.
Over the last week or so we have been involved with one such situation. We had already done several home visits – primarily to review the wellbeing of the patient – when last week some inheritance issues were brought to the attention of the team. The patient was becoming too weak to explain the situation clearly. Yesterday we visited the community, spending time talking with the village chief and family members hoping that they will be able to resolve issues in a helpful way.
Relief of total pain presents unexpected challenges sometimes.
After walking, riding on a bicycle and catching several minibuses our 62 year old patient with oesophageal cancer looked exhausted. She could barely walk due to weakness and oedema of her legs and the money used to attend clinic meant that acquiring food would be even more difficult over the coming weeks. It was fairly apparent that she would really struggle to make it to clinic in the future.
2 weeks later we went on a home visit using the Tiyanjane motorbike, the journey was a long one even for us. On arriving at our patient’s house she was almost unrecognisable. She managed to walk over to greet us as we arrived and her swollen legs were much less oedematous. The entire family came to see what was happening, some almost overwhelmed that we had travelled all this way. We performed a consultation outside with full family support and it was clear our presence gave a massive psychological boost not only for our patient but the entire family. Medicines were re-supplied and Likuni Phala provided.
We left to smiles and happy gestures. This home visit most certainly made an impact on this lady’s holistic care.
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Motor Neuron Disease (MND) is a condition rarely seen by our team
