Although carers, especially parents caring for ill or disabled children, would often not relinquish this responsibility, the emotional, psychological and financial burden of this type of care are often compounded by the lack of recognition for the work that they do and the attendant social isolation.
The work of unpaid carers too often goes unnoticed by the State and unsupported by social services. However, there are organisations that work towards recognition for the work of carers, and support them through the challenges that caring may bring.
Carers Worldwide is the only organisation working exclusively on the issue of carers in developing countries. They aim to: “Improve support, services and recognition for anyone living with the challenges of caring for a family member or friend who is ill, frail, disabled or has mental health problems.”
ehospice caught up with Anil Patil, founder and executive director of Carers Worldwide in London, UK.
“Carers are everywhere,” said Dr Patil, “but they are not recognised, not acknowledged, even by the community or the person receiving care.”
Dr Patil trained as a veterinarian, but then moved into the development field where he has worked for the past 17 years. He worked for eight years in India at the regional and national levels, and then spent eight years in the UK, working as a grant maker. Most recently he held the position of Programme Officer at the Tubney Charitable Trust.
“But above all I am a carer,” says Dr Patil, “I have two beautiful daughters, and the youngest has Downs Syndrome.
“She has been enriching our lives, but if it wasn’t for the support of family and friends and professionals, we would not have managed.”
This personal experience of being a carer led Dr Patil to start the organisation, Carers Worldwide. “I could imagine what it would be like,” he says, “with no support system, no acknowledgement.
“When you have someone needing care, you find that 85-90% of the work is done by the unpaid family carer, while professionals will do 10% of the work. The healthcare worker provides the information and the carers implement that information.
Imagine if the carer suddenly decided: ‘I’ve had enough of this responsibility!’ There would be no one at home to implement the professionals’ advice.”
The approach at Carers Worldwide is to work with the entire family. Dr Patil clarified: “We ask: ‘How do you create that nurturing environment so that everyone understands the burden of the carer?’”
To understand the experience of unsupported carers, Dr Patil spent time consulting with families and other stakeholders in India, South Africa and Nepal.
Speaking about his time in South Africa, he said: “In South Africa, I spent time in hospices. It was there that I met Sibongile. She had four children, two of whom were HIV positive. After greeting her, I asked her how she was. There was a long pause and her eyes filled with tears. After a while, she said: “Am I not a human being too?”
Carers Worldwide works to meet the physical and emotional needs of carers, to make sure that they are not alone, and are supported as they face these challenges.
Dr Patil explained the approach used: “Carers Worldwide will partner with an organisation that is already providing care and other services in the community. We are very selective in choosing partner organisations. We need to ensure that adding a carers component to the organisation’s existing work will add to and strengthen the programme. We sign a partnership agreement whereby the organisation agrees to implement the Carers Worldwide model. Carers Worldwide designs and develops programmes relevant to the particular context of the partner organisations, provides training and there is a joint effort to raise resources.”
Similarly, the organisations work together to build awareness, conduct advocacy and bring together programmes. Carers Worldwide encourages their partner organisation to provide a space to hold training and carers’ meetings.
“Our approach is that we work with established partner organisations who provide services to the person needing care, but not the person doing the caring,” says Dr Patil, “We build capacity in these organisations from the carer’s perspective.”
Carers Worldwide also offers advice on how to augment the family income. Dr Patil said: “When a family member becomes ill and another family member has to take on the role of caring for that person, two people in the family have lost their wage. The first person, due to their illness or disability, and the second person, because of their caring responsibility, are unable to go to work.”
The organisation works on a number of different fronts. They join with partner organisations to build capacity in understanding the issues and needs of carers so that there is a balance in focus between the person receiving the care and the person providing the care. They design and develop programmes specific to the context of the partner organisation. They conduct research to build the evidence base around carers and their needs, as well as measuring programme impact, and they advocate to ensure that carers’ voices are considered in the formulation of regional, national and international policy.
“The issues are colossal and the needs are huge,” says Dr Patil, quoting the statistic that in the Western Region of Nepal, 61% of carers show signs of depression, and 50% are on antidepressants.
In a project in India, carers come together once a month in premises provided by the partner organisation and, says Dr Patil, “amazing things are taking place. For example, every carer has a mobile phone, so carers use that to form a network of support, an interconnectedness. There is a whole difference in confidence. Carers will say things like: ‘I was in my own world, but now I have new friends’, or: ‘Now I have found a new purpose in life.’”
According to Dr Patil: “This seemingly small intervention can have a big impact.”
To help augment family income, the organisation helps carers to develop an individual career plan. They look at the carer’s skills and experience and try to facilitate relevant and sustainable income generating activities.
In the case of child carers, the organisation will try to develop an alternative to the current caring situation. Carers Worldwide will try to find a volunteer in the community to take on some of the responsibility.
Dr Patil tells ehospice that issues faced by carers are similar in South Africa, India and Nepal, but that the scale of the issues is different. He says: “In South Africa, for instance, the issues are colossal.
“In India, the demography has changed completely. To see joint- or extended families, you really have to search for them.”
To try and replace the role that might have been played by extended family members, Carers Worldwide has developed the concept of a ‘personal assistant bank’. The idea here is to find individuals who would consider caring as a profession, and link them with a family that needs support.
Carers Worldwide will provide training so that the personal assistant meets the needs of the family, as well as the needs of the person needing care.
Carers providing palliative care face additional challenges. Dr Patil explains some of these: “Once the dependant person is no more,” he says, “a huge vacuum is left. When the person was alive, there was a purpose in the carer’s life. They felt good, that they were providing a service to this person who needed their care.
In many of the settings where we work, there is no structured emotional support system and there is no concept of respite care.”
He recognised the work of professional carers, particularly hospice carers, commending them for: “Doing incredibly good work with limited resources.”
Speaking of the impact of the organisation, Dr Patil said: “Our approach is like a drop of ink in a bucketful of water, you don’t need the whole bottle to change the colour or make a difference.”
To learn more about the important work being done by Carers Worldwide, visit their website.