Scoping study: patient orientated priorities for cancer care in Uganda

In September 2010, Professor Annie Young of the University of Warwick, undertook a scoping study on behalf of Uganda Cancer Trust UK. She met with patients, carers and medical staff at Mulago Hospital and the Uganda Cancer Institute to understand the current challenges in cancer care and support and identify where UCT UK could best use its limited resources to complement existing activities.

The recommendations of the study have helped shape our future plans and partnership with the Palliative Care Association of Uganda.

The findings of the Scoping Study will be useful for healthcare professionals and policymakers in NGOs and Government. The main recommendations from patients, carers, and medical professionals were:

Recommendation 1
UCT should have a key advocacy role in holding the government accountable for implementing the proposals in the cancer control plan, and to ensure that the Ugandan population benefits from improved cancer care.

Patient and Carer Recommendations
Recommendation 2
Build an emotional and supportive care centre for patients and their families – near to the Uganda Cancer Institute – with patient information and trained counsellors

Recommendation 3
Build a hostel with catering facilities and free food and drink if appropriate, as part of the emotional and supportive care centre

Recommendation 4
Ensure a safe, reliable drug procurement process, with free chemotherapy drugs (paid for by UCT) for those patients meeting assessment criteria

Recommendation 5
Communications or advanced communications skills (to include breaking bad news) training programmes be set up to cover all personnel who are involved in the patient pathway

Recommendation 6
Support an existing cancer awareness programme in addition to other approaches to raising awareness, targeting young persons in particular

Professional staff recommendations
Recommendation 7
Procure generic chemotherapy drugs in the UK and send directly to UCI

Recommendation 8
Promote awareness of cancer care in Uganda to UK organisations that can help with sending appropriate equipment e.g. microscopes and a simple linear accelerator

Recommendation 9
Set up a patient coordination centre, using patient pathway information systems

Recommendation 10
Fund exchange programmes for managers and health professionals to progress policy and practice in cancer care in Uganda

Recommendation 11
Fund ‘outreach’ treatment and follow up centres for cancer care

At UCT we are currently focusing our efforts on information and emotional support for patients and carers (recommendations 2 and 9) working with the Palliative Care Association of Uganda. We hope that in the future we will be able to work with other partners and expand our activities to address more of the issues raised here.

Annie and colleagues at the charity AfrOx have been working on a programme of training for healthcare professionals (recommendations 5 and 10).

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