Pain under pressure : The excruciating pressure sores endured by people with disabilities

Story by Nalutporn Krairiksh
Photos by Kotcharak Kaewsurach

Pressure or bed sores are small abrasions that grow bigger, devouring tissue and causing ubcutaneous cavities.

Such wounds are different from the injuries most of us experience.  Normally when we get a cut, we clean it, put medicine on it and wait for it to heal. It might leave a scar, but in the end, it heals completely. Pressure sores are different. When pressure is repeatedly applied to a small abrasion, it gets bigger, particularly if the area around it is moist and contaminated by urine or faeces.  Such sores can result in the loss of body parts and even death.

In this article, we look at the causes and consequences of such pressure-related wounds to better understand why our disabled friends, especially those suffering spinal cord issues, are terrified of them.

Becoming acquainted with a disability

Natthaphorn

Natthaphorn was a cactus farmer. He was in a car accident. His body hit the roof of the car. That was the beginning.

“I thought I was fine so I opened the car door.  I fell out. The person sitting next to me opened the door without looking and was killed by a passing car. I woke up again at the hospital. My neck was in a suspension brace.  It was broken. I couldn’t feel my legs at all.”

Kraisorn

Kraisorn is the president of Independent Living in Nakhon Si Thammarat. Now, he works on drunk driving campaigns. He became disabled during his third year at the university. He remembers the night his life changed.

“That night I was drinking with my friends and I drove home drunk. I hit something then passed out. I woke up again at the Maharat Hospital and was surprised that I couldn’t feel my legs. I could see that my legs were still there but the doctor told me that from then on, I wouldn’t be able to sit up because my spinal cord was torn. I didn’t understand what that meant. I went back home but after almost 2 months, I was still unable to sit up. I had to lay down all the time.”

Uthaiwan

Uthaiwan lives on an orchard where everyone climbs trees to collect fruit. One day 27 years ago, she accidentally slipped and fell from a mangosteen tree when her small child called for her.

“Around here, it’s all orchard. People climb trees to collect fruit. Someone falls every year. I fell and my butt hit the ground. I severed the nerves in my spine. I couldn’t feel anything from the waist down. The doctor said that I would not be able to walk again, that I was disabled for life. My family told me not to listen. They were scared that I would lose hope. As surgery couldn’t help, I didn’t have surgery.  There was no external wound. I thought it would heal one day. After getting out of the hospital I tried home remedies and had oil massages, but I still couldn’t walk. I couldn’t feel my legs at all.”

Accepting a disability is no easy thing

When a person’s physical capabilities suddenly change, it is not easy to accept and adapt. Many newly-disabled people struggle with mental and emotional problems. Not everyone returns to society again.

Kraisorn slept for a year without trying to rehabilitate anything. Everything changed: his body; his mental outlook; his social life.

“I only left the house to see the doctor. Before, I was level-headed, polite, neat.  Afterwards, I was irritated and depressed, another person. I went from being able to do things by myself, to being unable to even sit up. I could only eat, sleep, and listen to music. I tried burning CDs and selling them for a living. Customers came to get them at my house. They would call to tell me what songs they want. I started to make money, but I still didn’t know how to look after myself. I still didn’t know how to go to the bathroom or get out of bed, and I was too scared to leave the house, afraid that people would be disgusted.”

“Then one day I met “O” Santi Rungnasuan (then-president of Independent Living Putthamonthon) … when I saw him my thoughts changed. He drove a car with hands that were weaker than mine. He stayed with me for a week and had me show him around every day. He also visited other people with disabilities. From that day on, I could leave the house.”

“After that I started to train … sitting up, getting in the wheelchair, getting on to the bed, getting down from the bed, going to the bathroom. It didn’t take long.  It can all be done. I just didn’t know the techniques and had no role model. I’d never seen what disabled people could do. Thing didn’t just improve for me, but also my family. I stopped being a burden to my mum – before she took leave from work to look after me, but now she has her own life. Her life became happier when I returned to living mine.”

Pressure sores: an impediment to rehabilitation

Philaiwan

Philaiwan told us that her first pressure sores started from small abrasions caused by her skin rubbing against her clothes. They became infected, broken open, and bled. Luckily, she had previously assisted disabled people with pressure injuries so she was able to look after herself.  But the experience taught her how scary pressure sores could be.

“At first, the sore was still small.  But the inside was continuously rotting. The longer it was left untreated, the worse it became … treatment involves removing the dead tissue, washing the wound with a saline solution, applying betadine and wrapping the wound with gauze.”

“My own sore wasn’t big but it made living a lot more difficult. At night it really hurt, and it would bleed. I had to look after myself more. The sore … still hasn’t completely healed to this day. So I looked after myself, eating well and avoiding injurious foods. When I sat for a long time, I got a cushion. And if I was sweating or it was damp, I laid down and turned on my side so the sore touched the ground as little as possible. Or I turned on the fan and faced it towards the sore so that it could dry out.  I learned from helping other disabled friends. The hospital didn’t teach me."

The disabled people we talked to first started getting pressure injuries while in the hospital.  Medical practitioners are supposed to protect patients from such injuries by changing their diapers every 3 hours, by turning their bodies every 2 hours, and by provisioning rooms with air mattresses. In reality, these guidelines are not always followed.

Physical therapists from Nakhon Si Thammarat’s Maharat Hospital attribute pressure sores to the province’s local climate and the fact that bedridden patients are often sedentary, with few daily physical activities. Family members don’t want them to do anything besides rest and when patients do get up, they are often made to feel as if they are burden to caretakers, who worry that they may have an accident. The economic status of patients was reportedly also relevant. Those in lower to middle-income brackets were held to be more likely to get pressure injuries.  Those with lower body disabilities also suffered more pressure injuries than patients paralysed on a single side of their body (hemiparesis). Although unable to walk, people with hemiparesis find it easier to move about and turn over their bodies.

Siam, a community physical therapist

“Pressure sores can develop when a patient is at home or in the hospital. Hospitals with strict care plans have less. Doctors often don’t let patients remain in the hospital for a long time either.  They are concerned about infections and they also have limited number of beds for the sick. But when a patient does sleep at the hospital, the nurses and assistants may not be able to provide them with adequate care.  In such instances, they often ask relatives to help turn patients over.  Problems arise when relatives don’t follow instructions.

“Domestic self-care requires cooperation between caregivers and healthcare workers in the community. Community nurses often shoulder so much work that they overlook the issue. They assess patient well-being and don’t look for wounds. Disabled patients might also be unaware of the problem, especially those who cannot feel pain or aches. As they don’t feel anything, they don’t know why they need to periodically turn over. They can lay down for long periods of time. By the time a sore is noticed, it may already be ulcerated. Most patients go to the hospital when they have a fever, but that means the injury is already infected. Sometimes the sore is small, but if left alone for a long time … it can spread, particularly if urine or faeces is present.”

Chakrit

Lack of knowledge is why Chakrit, a disabled person living on his own, contracted pressure sores. He was turning his life around. He had work and things were looking up. He was living in a new world and looking forward to going out with friends.

“At the time, I didn’t think the sore on my back was a pressure sore at all. I figured it would heal on its own but instead, it got larger.  I had to get surgery and spent a week recovering. At the hospital, they gave me a urinary catheterisation.  It chafed my skin, causing small bumps and new wounds. My mum cleaned them every day but they refused to heal. One even got infected … and became a chronic wound.  It made sitting tough so I had to lay down more. Some of my friends have had very big sores. After seeing those, I couldn’t sleep. Some of them are scared to leave their homes, scared that their wounds would bleed.  After sitting for a long time, the dampness and heat can create many sores near each other that come together below the skin to form a single large injury.”

Uthaiwan had a similar experience.  Seven months after her accident, she started getting pressure sores.  She did not know about air mattresses and was not using a wheelchair as she hoped she would be able to walk again.  She had a chair but she moved by pulling herself across the floor instead.

“One day a doctor from Maharat Hospital came to visit with an air mattress. I tried it and thought, if I had taken care of myself back then I probably wouldn’t have so many sores. Ever since becoming disabled, I’ve been suffering from pressure sores. Once one heals, another appears someplace else. Infected ones cause new spots nearby.  They need to be treated with surgery. If not, they get infected and become very painful.  Some become inflamed to the point that I can’t sit at all and can only lie on my stomach. I also get fevers. Covering myself with several blankets doesn’t help because I am cold from the inside, so I have to visit the doctor to get a shot.

“Ever since I became disabled, the sores have almost never healed. If I could turn over again and again while sleeping, the sores probably wouldn’t happen.  During the day, I still have to get on with my life, sometimes chafing my skin and putting pressure on various places. We disabled people have to learn how to look after ourselves, to know that we must change diapers often and not let sores get wet, and to lift up our butts from time to time when sitting.”

Maharat Hospital's physical therapy and rehabilitation team

The doctor in charge of physical therapy and rehabilitation at Maharat Hospital agrees that pressure sores make rehabilitation difficult. If a wound gets infected, it can lead to death, a not uncommon development with elderly patients.

“There was one person who had a sore on their waist which had to be surgically removed.  It slowed the patient’s rehabilitation as it required the patient to lie still without doing any other activity. Most pressure wounds started as scrapes  and abrasions. The wound gets deeper and deeper, some reaching the muscle.  If it is unlikely to heal, surgeons sometimes transplant tissue. Even after healing, a cavity remains and needs to be cleaned regularly.  If it doesn’t get infected, then it is usually okay.”

Because of pressure injuries, people with disabilities often become more dependent on those around them. As noted by Maharat’s physical therapist, pressure sores hinder rehabilitation. Patients may not be able to sit for long and will have to move more often since their sores hurt.  This makes it tough for them to train according to their [rehabilitation] schedules. And if an injury becomes chronic, it will need to be healed before trying to determine what caused it. Some people misunderstand that when they lie down, they do not need to turn over. Actually they do. Air mattresses help but if a patient does not turn over for a long time, they will get bed sores.

“If one has never seen a pressure sore, they probably can’t imagine what it looks like. Mine isn’t big. Looking from the outside, it doesn’t seem deep. But when it broke open, it was about 6 centimetres deep. The wound was red. That’s considered to be a good colour. It had to be cleaned 3 times a day. If my mum wasn’t free, I did it myself using a mirror. Still it wasn’t as clean as having someone else do it for me. In the beginning, they gave me medicine to put on the wound and said it would get better in 2-3 months … but as time passed it got worse.  The bacteria causing the sore built up drug resistance so I had to continuously changed medicine. Small sores became large sores. Sores that were treated until they almost healed got infected again … one became so deep that it reached the bone … I was cleaning it and bits of bone came out.”

Treatment welfare is still inadequate

Securing welfare to pay the cost of medicine, rehabilitation and the use of medical facilities remains an issue. Although injury care is technically covered by the state, reimbursement is sometimes limited because of local budget and personnel constraints. Some physical therapists also prefer patients to remain at home rather than at the hospital, where the risk of infection is greater.  However, when a patient is at home, an evaluation must be made to determine who will take care of the wounds.  There must also be coordination with the local nursing facility so that officers know to make regular visits. And to avoid repeat hospital admissions for infections, hospital staff must be kept in the loop as well, but this is frequently not well coordinated.

“Volunteer services like the Village Health Volunteers (VHV) can help but much depends on the workload in different localities. If a patient has to be turned over every 2 hours, hospital nurses might be too busy to help. In homes where patient family members need to work, where they go out to tap rubber trees in the morning and only return in the afternoon, it might be worse. Personal Assistants (PA) can help but those currently doing home visits are volunteers who receive no remuneration. Is the support suitable for people with disabilities?  It depends … but it can be exhausting.  It’s not sustainable. 

Disabled care requires someone to assist every day.  People can’t wait for three days to shower and eat. PA’s should be given an income.  To do their jobs, they need wound treatment skills.  They also need to be good at managing daily activities and willing to wipe up faeces or urine. What they do is quite tough. They are expected act like mothers … but they aren’t mothers and they can’t be there every day.  Community support can help. Sometimes when a disabled person is home alone, neighbours can stop by to visit or take the patient to the doctor. Still, they can’t be relied on for harder tasks like wound care which has to be done every day. It’s impossible.”

According to Kraisorn, disabled people in the South have limited welfare access and are often unaware of their rights. Unlike Bangkok’s disabled, who are regularly informed by leaders in the community, the 40,000 people with registered disabilities in Nakhon Si Thammarat do not have many options. In some hospitals, equipment-related treatment costs cannot be reimbursed. For some, this means paying around 3,000 baht a month in medical expenses.

“I get 800 baht in welfare money every month but it’s definitely not enough. One pack of gauze is already a hundred baht. Other equipment like air mattresses or wheelchairs are also necessary … sometimes, patients pass away before they get reimbursed.  Sometimes the equipment they receive is not suitable for their disability.  Many of us are obliged to use second-hand products … We also have issues with PAs. Sometimes we can’t get one … or they cannot be relied upon. Volunteers come but they are not responsible for meeting patients’ daily needs.

“Without an assistant, without a family member at home to help them, disabled people with pressure sores have difficulties. If a sore becomes infected, their lives continue to revolve around the hospital. A patient’s well-being should not be dependent upon their socio-economic status. If they have a family member to take care of them, there’s no problem. But disabled people living alone need governmental support. There must be a system which provided real help, especially for those living alone without help from their families …they should be given the equipment they need on the day they leave the hospital since most can’t afford to buy it themselves.  They should also be taught how to look after themselves and avoid pressure injuries before going home.”

According to a Maharat Hospital prosthetist, patient welfare benefits cover the costs of most necessary medical equipment. During rehabilitation, for example, they are given devices to help them stand and walk again. Due to travel expenses and difficulties, however, such equipment may never reach their homes.

“Local hospitals receive enough supplies, but some devices must be adjusted to fit with the bodies of individuals patients.  If a patient can’t come in person, the devices will not meet their needs. The hospital procures standard wheelchairs.  These are all the same.  A custom designed one is considered to be high-value equipment.  It can only be obtained with support from the Sirindhorn National Medical Rehabilitation Institute, where specific patient needs are evaluated by a rehabilitation doctor. Issues like this cause problems in procurement, equipment quality and maintenance.”

Chakkraphong and Uthaiwan are tired of hearing about benefits they can’t use.  They are also tired of spending their own money on medical equipment each month.

“The reason many disabled people have such severe wounds is because they have no support. They don’t have good cushions to sit on. It might be because they don’t have enough money or they might not know which kind of cushion to use, thinking they are all the same. Air mattresses cost tens of thousands of baht.  Not every disabled patient can afford one. Moreover, they can only be used for time.  If  one gets punctured, it can’t be fixed. And the wheelchairs they give out don’t seem to meet standards. Some are very old.  They are already worn out before it reaches us,” Uthaiwan said.

“The cost of wheelchairs and air mattresses can only be reimbursed every 3 years. In truth, they often don’t last that long. When an air mattress gets punctured , we have to buy one ourselves. The front wheels of a wheelchair cost 500 baht a pair. A wheelchair costs 30,000 baht, about the same as a motorcycle. If you are disabled, you need to be rich enough to have good equipment.  The existing welfare is insufficient. When we get sick, we have to pay 2-3 thousand baht, but we only get 800 baht per month. What can we use it for? It’s not even enough to cover food costs … I have no other income and have to buy wound treatment kits and diapers.  I use up to 3-4 diapers day. Luckily, Thasala Hospital reimburses me. Supporting disabled people is expensive,” Chakkraphong said.

The dream of accessible care

Asked about what welfare and policies could help to address the problem of pressure injuries, the disabled people we interviewed wanted access to good medicine that could be reimbursed through the National List of Essential Medicines.  Others proposed the establishment of specialist pressure injury care centres staffed by understanding personnel.  Most also hoped for some form of employment …work they could accomplish, despite their chronic conditions, so that they could use their own money and make their own decisions about hiring assistants.

Asked about the problem of finding work near his home, Chakkraphong remarked that most agencies looking for disabled people to work require applicants to have a bachelor’s degree.  As this includes government work, he currently does not have the necessary qualifications.  He would like to continue his studies but has no car and his pressure sore has yet to heal so he cannot sit still for a long time.

If I had a job, I would probably have to worry about that. How can I tell my boss that I can’t sit still for long or my wound will tear? They would probably think that I’m lazy since they don’t understand those suffering from pressure sores.”

“If I could advise the government, I would ask for work that can be done from home. There should be an agency which surveys who can work and to what extent. For me, having work is very important – more than support or monetary allowances. When they give out allowances I get 800 baht per month.  But if I had work, I’d have enough to eat and live. I think people with disabilities can do many jobs. One job we can do is selling lottery tickets.  But there are lots of other jobs that people can do, that I could do, as long as I don’t have to travel often.”

Chakrit agrees that 800 baht a month is not enough and also feels that people with disabilities would rather have the chance to work.

“The disability allowance … should be 3,000 baht. That would help us with many things. And the government should also support professions too … not everyone wants to sell lottery tickets … people with disabilities need more options.”

A physical medicine and rehabilitation doctor explains that Maharat Hospital is currently seeking to make the hospital a subunit of Sirindhorn National Medical Rehabilitation Institute so that it can handle all stages of care for the disabled, from emergency treatment to rehabilitation. The hospital already has specialist doctors and rehabilitation nurses, trained to work with and evaluate disabled patient conditions.  They also aim to have patients be better able to look after themselves.

“In the elderly community, there are more bedridden patients and people are more likely to have pressure sores. If caretakers prioritise [pressure sore care], the chances of patients getting pressure sores would be reduced. There should be an awareness campaign - a ‘Pressure Sore Year’ - to help people understand that this disease, like many other illnesses, can be prevented.  If preventive measures are known at the community level, if people know how to take care of themselves without needing to depend on the state and its policies, we could save a lot of time and money. 

 

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