Palliative Care Support Trust

Challenging issues in care

We went into the place where the patient stays. It isn’t really a home but more like a small dark shack. When we found him he was an elderly man staying alone, wearing ragged clothes. Because of the eye tumour he cannot see anything so he needs his wife to feed him and to give him the morphine for his pain. His wife goes out to try to find piece work so that she can get some money for food. Many days he misses his drugs and sometimes he has no food. He practises traditional religion which means that he is more isolated from church support. After a couple of visits we are able to refer him to a local home based care team who are able to visit him more regularly.

report adapted from home visit records from Mark Haward, Mwandida Nkhoma and Sandram Chiwala (Tiyanjane team)

Many of our patients have challenging situations to face at home but for this one it seemed particularly tough.

District suppport : Neno

Yesterday we visited Neno District Hospital. Neno is one of the most isolated districts in the country, surrounded by hills, with a population of around 100,000 people, most of whom are subsistence farmers. The hospital has been supported by Partners in Health since 2007; they have been working with the Ministry of Health to integrate palliative care services for the last 12 months supported by a grant from the Waterloo Coalition. After driving through heavy rains along rutted muddy roads we were happy to reach the hospital, where we received a friendly welcome from Wedson the palliative care focal person. He talked us through palliative care clinic services and showed us documentation. Though previously they had faced repeated stock outs of morphine liquid, things have improved in the last 3 months.

Funds from the Waterloo Coalition have helped PCST support the development of palliative care in district government services in the Southern Region of Malawi over the last 18 months. District support is run as part of the STEP UP project under Umodzi Childrens’ palliative care.

Professor Anne Merriman visits Blantyre

Last week we were privileged to recieve three people from the new Institute for Hospice and Palliative care in Africa (IHPCA) – the education unit of Hospice Africa, Uganda. They were following up 34 health workers from Malawi who have undertaken a variety of distance learning courses at the Institute, looking at how they are implementing palliative care, what difference the training has made etc. Professor Anne Merriman – one of the pioneers of palliative care in Africa – was part of the team. During her visit she gave a lunchtime public lecture entitled ‘Challenges to delivery of palliative care in Africa’ which covered a wide range of topics from fears of morphine to culture and donor definitions of palliative care.
We very much enjoyed her visit which also assisted us in local advocacy for palliative care.

Children need pain relief too

Precious was four when we first met him in August this year. He had fevers and a swelling in the scalp. The major problem was pain . At first he was thought to have neuroblastoma but later he was treated for Burkitts Lymphoma. He was immediately enrolled for palliative care and was started on liquid morphine for the severe pain he had. Mum was counseled on the condition and the plan of management including the purpose of chemotherapy that he had to receive.
Unfortunately his tumour didn’t respond to chemotherapy but we have been able give him and his mum ongoing support .With morphine we managed to control the pain and metronidazole mouthwash has reduced the bad taste in his mouth.
posted by M.Boti, Umodzi palliative care clinician

Children like this need love and care.

extreme event fundraising : THANKS!

from Harriet’s blog

“I’ve survived a gruelling 150+ mile race across the Sahara Desert for the second time…The Tiyanjane Clinic has never been far from my mind, and was a wonderful source of inspiration when the going got tough. As were all the wonderful messages I recieved from so many of you willing me on… I can’t tell you how much those messages helped. Thank you! I am now clean and sand free, if hobbling a bit with rather bruised and battered feet. It remains to be seen how long my toenails cling on to my toes!”

Harriet raised an amazing £6,000+ for the renovation of the new cancer/palliative care ward at Queens which will house the activities of Tiyanjane clinic in the near future. THANK YOU from us all.

Extreme event fundraising

extreme event fundraising

click here to follow her progress and find out how you can support Harriet as she runs 250km across the Sahara. Click on the flyer for a brief summary of her plans.

A rare condition benefitting from our support

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)

how HIV affects families

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

further studies

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 – adult care

Umodzi – paediatric care