Ann Goodwin and her husband David make regular visits to Kagando. Ann’s specials area of interest is palliative (or, end of life) care…
Here Ann shares her story…
The palliative care department was started in July 2007 and modelled on Hospice Africa Uganda. Since then it has cared for well over 1000 families who otherwise would have received minimal treatment and no support.
Care given is holistic, this includes medical, social, emotional, psychological and spiritual, to both the patient and their family.
There are no residential hospices in this part of Uganda as families prefer to nurse their loved ones at home.
Home is often a mud hut without electricity or piped water,
Even the better off may only have a simple single storey house with paraffin lights and a tap in the yard shared with neighbours.
The patients are mostly subsistence farmers who present very late in their illness because of the lack of medical services and poverty. Often the only treatment possible cancers is palliative, medicine for pain and symptom relief, as well as good support and loving kindness.
Where appropriate help is given with expenses to visit a major hospital in Kampala for chemotherapy, but this is approximately 250 miles away which takes a whole day in a bus.
Patients are referred to the department by members of the hospital staff, but some come directly. They are enrolled for palliative care and follow up. Usually their hospital stay is short, but if they are well enough. and live locally, they can be followed up as out patients. Those who live many miles away from Kagando are referred to their nearest trained palliative care nurse, if there is one, but in some cases this is not possible.
Those who are not well enough to travel are visited regularly. It is often possible for the family to keep in contact by mobile phone so emergency visits can be made if needed. Where patients live high in the mountains, inaccessible by car, a relative is instructed to come and collect the medication and report on progress.
An important part of palliative care is counselling of the patient and their family. This was not done before palliative care existed in Kagando, patients were sent home without being told their diagnosis, prognosis or how they should prepare for their future including things such as making a will or thinking about child care etc.
The support needed is much more far reaching than just medical care and has to be done sensitively and with love. The staff endeavour to give a service rather like the Macmillan nurse service in the UK.
Medicines and equipment
As a department our mobile hospice has its own separate pharmacy to ensure that all medicines needed are always available, including oral morphine.
Kagando hospital charges patients a modest fee for consultation and treatment and Palliative care is not an exception.
Usually, if the family can afford to pay, a fee of £2 covers the visit, assessment and all medicines and dressings etc.
Over 95% of our patients cannot afford this and are not charged at all, indeed there is a compassionate bag which is used to buy essential food items which are distributed to the families in greatest need. This is why the support of organisations such as The Friends of Kagando is so vital, as without the income the hospital would be forced to close.
Money raised by The Friends of Kagando is used for medicines, equipment, communications, stationery, training of staff, the maintenance and fuel for the vehicle as well as the special compassionate fund to buy food for the very poor and the provision of transport for chemotherapy.
Donations are always welcome and can be made to ‘Friends of Kagando ‘ and designated Palliative care using the form below, or perhaps your church, or youth organisation would like to support this aspect of our work?
There is normally no home visiting in this part of rural Africa, however more recently the hospital doctors have requested the team include chronically sick housebound patients in their visits. These are people who would not be classed as terminally ill, but who still need support. The specialist nurses have also taken on the role of counselling families with Sickle Cell Disease and providing them with emergency medication to reduce the incidence of Sickle Cell Crisis.
Esther, our very first patient…
Esther was a 24 year old with inoperable bowel cancer. She had no family or friends to care for her as is the custom in Uganda. When she was first seen she was in extreme pain as she was only being prescribed paracetamol. After being assessed by the palliative care team in hospital, she was prescribed morphine and other medication, and also seen by the hospital Chaplain and social worker.
Her pain and symptoms were controlled and she changed from a desperately distressed bed-ridden patient to a cheerful young lady who could get up and cook for herself. No family could be found and as she was homeless she stayed in hospital.
Sadly Esther died six months later, but she died peacefully, with dignity, and the compassionate loving care of the palliative team.
The team benefit greatly from a Toyota Land Cruiser bought with donations, which is used for visiting patients in the community. This is mountainous country and many live where there are no roads just grassy tracks, so a 4×4 is essential.