Chapter 11: Patient Support Groups: Building a Safety Net
By Vandana Gupta
Financial constraints are a major issue with patients and families. V Care volunteers help relatives to get cost estimates, fix meetings with the medical social worker, give suggestions on how to raise funds and which trusts or charities to approach for financial aid.
Several years ago, I was a patient in one of Indias leading hospitals, where I was being treated for cancer. I was educated, well informed and literate, but I still felt completely lost. My doctor was taciturn. It was hard to ask questions and even harder to get answers. My sad experience motivated me to start a support group for cancer patients when I recovered. The outcome was V Care.
One important thing a patient support group provides on a day-to-day basis is quick, feedback on a particular disease -feedback in the middle of the night, on weekends, during holidays, as well as throughout the week. Even a 24-hour nurse cannot provide this because the nurse must work from general knowledge, while patients work from specific knowledge of the disease in question. Patients who have benefited from patient support groups naturally want to bring this service to other areas of the world where it does not yet exist. This is how V Care came into existence. This is how health care is going to evolve, and this is a movement which should be welcomed, as patients become more informed and more involved in their own health.
For most people, the diagnosis of cancer is a death sentence. Patients coming to a hospital feel intimidated by the vastness of the place and the highly technical language used by the physicians. The staff seems to be overworked and busy and no one seems to have time to spare for the patient. There is little opportunity to understand the procedures and they have to cope with pain, loss of dignity, vomiting, hair loss (as a consequence of chemotherapy and radiotherapy) besides a host of other unpleasant side effects -as well as the hospital bills!
There are various problems faced by the patients in the out-patient-department (OPD) such as filling in endless forms; lack of privacy; overcrowding; long waits and lack of proper guidance, that leads to patient dissatisfaction. Patients are looking for hassle-free and quick services and this is only possible with optimum utilisation of resources through multitasking and by using a single window system in the OPD.
The staff in the hospital maybe familiar with the location of labs and scanning machines, but patients and their families can get lost very easily in this inhospitable environment. Just telling them to go to a particular room number without giving them clear directions wastes their time and adds to their anxiety. As a support group, we are much more patient- friendly, and we think from the patients perspective because weve "been there, done that". We become the bridge between the patient and the hospital, and guide them when they are stuck. We know the hospital well and can help to lighten the work load of staff members by assisting patients and their relatives.
Financial constraints are a major issue with patients and families. We help relatives to get cost estimates, fix meetings with the medical social worker, give suggestions on how to raise funds and which trusts or charities to approach for financial aid. Since the hospital staff focuses on medical treatment, helping with financial assistance is best done by volunteers, who can ease the burden for patients by helping them fill in forms, so they can comply with the required procedures and formalities.
We can use our collective voice to help patients get better care. Thus, as a patient support group, we have been able to lobby the government to ban tobacco and gutka (chewing tobacco) in some states; ensure easier availability of morphine for pain relief; and get travel concessions for relatives and patients.
One of the most potent ways of moving health literacy on to policy agendas is by sharing the sorry stories of patients who have had difficulties with health services as a result of their lack of literacy skills. Patient support groups can pick and identify such stories and the people behind them, and make them available to policy-makers and the public through the mass media.
Little differences can make a world of a difference. I remember a patient whose family members had not eaten anything for over 12 hours, because they were being made to run around from pillar to post in the unfamiliar hospital settings of a strange city. One of our volunteers took them to the hospitals chief administrative officer, helped them complete all their paperwork and then took them out for dinner. A loving touch, proper guidance and the fact that - "We are with you at every step" makes all the difference to the patient who often feels lost and helpless.
Patients also want to learn more about their disease, its treatment and its side effects, and we guide them. Is it contagious? Is it hereditary? Are other family members as risk? Should they also get tested? As a support group of recovered cancer patients, we understand the need for simple, easily accessible information in local languages. We have developed many such booklets, to help answer the common queries of patients. Patient support groups can be a very valuable source of patient-friendly health information.
When I was first diagnosed, I asked my doctor for more information about my disease. He just thrust a big fat medical textbook in my hands and said - Here, read this - it will answer all your queries. I remember being petrified because the chapter just seemed to be a long catalogue of all the possible complications that could occur - both as a result of the disease and its treatment, and how to manage these.
Now while this may be useful information for a doctor, I thought it was callous of my doctor to burden me with all this unwanted technical information, most of which went over my head. In retrospect, I realise that he did not know any better - and didnt have anything else to offer me. I had many unanswered doubts and questions - Will my hair grow back? Will I be able to have sex? Do I need to change my diet? Patients are plagued by many niggling doubts, most of which may be minor for the doctor, but are major for the patient. Whom can the poor patient ask? Doctors are too busy to worry about such trifles when they are busy saving lives - and patients are quite scared to ask the doctor too many questions. A support group provides a welcome comfort zone, where all questions can be asked and answered.
As a support group, it is easier for our members to talk to doctors, because we are well-informed. We can help the doctor to see the patients perspective and we can make the administration understand the challenges patients face. We try to make the doctor-patient bond stronger so they can trust each other. Over the years, we have learned that:
- Patients expect doctors to fully explain the disease, cost and treatment plan, before hospitalisation. Sadly, most doctors still do not do a good job doing this.
- The attitude and behaviour of nurses and paramedical staff towards family members, caregivers and attendants needs to improve. The patients family has a key role to play in the patients healthcare, and they should be respected as powerful allies, rather than being treated as unwelcome intrusions.
- For a health care organisation to maintain and improve its standards, constant monitoring of the perceptions and expectations of the patients and their family members is essential. Hospitals need to ask for feedback, and to act on this, if they want satisfied patients.