ROYAL INFIRMARY NURSES’ LEAGUE
TRAVEL AWARD UPDATE
Visit to LEPRA Hyderabad Services and Projects
(Andhra Pradesh, South India) 2013
I applied for the travel award with my colleague Abigail Hosier who I studied with at the University of Liverpool. We both share a passion for working in resource poor settings overseas and following graduating in 2005 worked together on the Tropical and Infectious Diseases Unit (TIDU) at the Royal Liverpool University Hospital. In recent years we have focussed on caring for individuals with HIV and Hepatitis; both in research and in specialist nursing.
Over the years working in this area we have established a growing awareness of the need and importance of good quality holistic care. This is very apparent within the context of the care of the newly diagnosed HIV positive patient. The TIDU department provides a high quality service and we have an established multi-disciplinary team which includes specialist nurses, counsellors, community HIV nurses and medical staff. Over recent years we have spent time with patients and gained a greater understanding of the experience of being diagnosed with HIV. We felt that whilst there were many areas of excellent practice, that there were also areas of improvement in relation to the support of newly diagnosed individuals.
The importance of providing holistic care is highlighted in the range of different patients we care for. Many have little or no support, which is often made worse by the nature of the diagnosis and the stigma surrounding HIV. A lot of people tell very few people about their HIV positive status and therefore often feel isolated and alone in coping with their diagnosis.
In recent months we spoke with patients and staff about what they felt improvements could be made in the care of newly diagnosed patients in our department. The main issues that arose through these discussions were surrounding spiritual, mental and social care. The diversity of these issues is vast and we endeavour to always support our patients in all these areas, so we began to wonder how we could improve our service.
The opportunity of working with LEPRA in India was excellent as we were very keen to gain an insight into how holistic care is provided for patients there suffering from conditions with immense social stigma. As emphasised in the mission statement of LEPRA;
‘LEPRA – health in action; is a health and development organisation working to restore health, hope and dignity to people affected by leprosy, tuberculosis, malaria, HIV/AIDS, blindness and other health conditions exacerbated by stigma and social discrimination’.
As resources are more limited in Hyderabad and up to date medications are not available to most people living with HIV, more focus is put on holistic care of patients. We hoped to be inspired by how they managed their patients in such a resource poor setting.
Abigail and I are both keen to develop our careers through personal and professional development and held the belief that this award would be an excellent way to do this. We are enthusiastic about enhancing our knowledge within our area of expertise and are passionate about working overseas and would love to work in a developing country within a nursing capacity in the future.
Our aims in applying for the travel award were:
To enhance our knowledge and gain insight into the treatment, management of nursing/medical care and the outcomes for people living with HIV in India.
To work along side staff working with people with HIV in the region, observing practice and implementation of care.
To be able to compare my experiences and the information we obtain, with treatment, care management and outcomes of the patients we care for here in the Infectious Diseases Unit at the Royal Liverpool Hospital.
During our time with LEPRA in Hyderabad we were overwhelmed by the care and attention the LEPRA staff gave to both us and to the people they cared for. We were very humbled by the compassion that was shown by each member of staff. One event that particularly impressed us was a shoe distribution ceremony:
Many people with leprosy have been diagnosed late in the disease progression, by which time they have suffered severe peripheral damage, particularly in their feet. Many have very deformities and lost toes after suffering burn injuries, pressure sores and ulcers. Wearing shoes becomes very difficult and can often exacerbate the problem, causing new sores.
LEPRA individually fitted tailor made new shoes for about 100 people suffering from leprosy and held a ceremony for each person to be presented with their new shoes. Each person came up one by one and was overjoyed to be presented with their shoes and with a first aid kit. They were then delighted to be provided with lunch afterwards.
We loved being part of this event as it demonstrated to us an innovative way to show compassion and support to individuals suffering from an isolating and stigmatising condition. We wanted to capture something of this as an inspiration in our department. However, as all newly diagnosed HIV positive patients are individual, ‘holistic support’ means something entirely different to each person. The example of holistic care in India would not transfer into our culture so exactly.
We therefore decided to enhance the information newly diagnosed patients are provided with, by creating a ‘Newly Diagnosed HIV Positive Information Pack’ in order to signpost them to various places where support is available. We understood that everyone’s needs are different and that people needed to receive support in different ways. Compiling all the services we offer and support that is available around the city into one leaflet allows a patient to easily choose the type of support they would like to access.
In Hyderabad there is a high proportion of sex workers, who due to the attitudes of society are often marginalised and isolated from local communities. In order to encourage them to access healthcare services, there needed to be appropriate ways of displaying acceptance and non-judgemental care. One of the ways in which this was achieved was through the facilitation of support groups specifically designed to meet the holistic needs of the women.
The service we offer to our HIV positive patients is also one of acceptance and non-judgemental care. However finding new ways to support patients and being inspired by other service providers can be beneficial. We therefore are considering opening a support group for our HIV positive patients. We recognise that this would not appeal to every individual, which emphasises the importance of an information pack including information on all the support options available.
We have planned a presentation in the hospital in conjunction with the hospital Arts Lead. This will be an opportunity for us to tell patients, staff and the general public about our experiences in India. We hope that our presentation will inspire people and give them a fresh insight and a wider perspective of healthcare.
We have discussed these plans with the Lead Consultant and other members of the MDT of the TIDU and they are keen for this to go ahead as ideas like these, would benefit the patients in our care and help staff to be well equipped to resource patients.
Our trip to work with LEPRA was an incredible experience and has increased our knowledge and motivation in the holistic support of HIV positive patients in our care.
We are also excited by the links that we have formed between the TIDU and LEPRA and will be keen to maintain the good professional relationship that we have established during this trip.
We would be keen to encourage fellow staff on the benefits of seeing firsthand the practices of non government organisations, in resource poor settings and how this can both, motivate, inspire and facilitate personal growth as a professional. Our presentation and display will be a good way of encouraging this.
Most of all we are looking forward to hearing the feedback and comments of the patients utilising the additions to the current service.
We would like to take this opportunity to extend our sincere thanks to the Royal Infirmary Nurses League for the travel award. We believe the experience has been motivating, challenging and rewarding and we are very grateful for the financial investment we received.
Tropical and Infectious Diseases Unit
Royal Liverpool University Hospital Trust