Patients with intractable diseases Difficulty in obtaining supplies and securing human resources for nursing care Impact of the new corona on May 5, 16:29

Due to the new coronavirus, it is difficult for patients with intractable diseases living at home using a ventilator to obtain supplies such as antiseptic solutions and to secure human resources to care for them. We have been contacted by organizations such as patients with intractable diseases one after another.

According to the "Japan Council for Intractable Diseases and Diseases", which consists of groups of patients with intractable diseases and their families, from patients with intractable diseases who need to use artificial respirators or injections at home, disinfectant and absorbent cotton etc. It is said that there are a lot of counselors saying that is no longer available at pharmacies and drug stores.

In March, the council submitted a request letter to the Ministry of Health, Labor and Welfare to request that these materials be distributed to patients in the amount necessary, but the situation was not improved even after that, and the request was made again. I am going to do it.

According to the Japan ALS Association, which is a member of the council and is created by patients with ALS = amyotrophic lateral sclerosis, some patients require long-term care at home. Although there are many people, it is said that it is difficult to secure human resources such as nursing helpers and nurses because of the refraining from going out.

Koji Oyama, Managing Director of the Japan ALS Association, said, “Many patients have multiple care helpers for 24 hours. Because securing caregivers and hygiene products is directly linked to life and life, I want you to secure it. "

Family of ALS patients "I'm really worried without support"

Yutaka Haruyama (68), who lives in Edogawa-ku, Tokyo, is taking care of his bedridden wife, Masako (65), at home.

Masako developed ALS, an amyotrophic lateral sclerosis, about 10 years ago. From 5 years ago, I cannot breathe spontaneously and I am wearing a respirator.

It is necessary to inhale sputum and saliva once every one and a half to two hours. At this time, the catheter is inserted into the instrument attached to the back of the nose or the trachea. I wiped the catheter with alcohol.

Alcohol for disinfection was distributed from the hospital, and in addition, I bought the lacking amount at a nearby drug store, but the distribution has decreased from 3 to 2 per month, and the store continues to be sold out. It's called.

Now, we are saving money by minimizing the amount of disinfectant contained in absorbent cotton and cutting wet tissue containing alcohol in half.

Also, there are few medical gloves and gauze to use when working, but it is said that they are not available.

Mr. Haruyama said, “I couldn't imagine that I couldn't get alcohol for disinfection. I do all the management and disinfection of the ventilator at home, but when I don't have what I need, I do it myself. I have to procure it, and I don't have any support, so I'm really worried when I think about when it actually disappears. "

In the caregiver of intractable disease patients

In the field of care for patients with intractable diseases, who often have direct contact with the caregiver, there is a serious shortage of helpers due to the spread of the new coronavirus.

Yoshihiro Kaiya (49), who lives alone in Tokyo, suffers from a muscular dystrophy, an intractable disease in which the muscles of the entire body gradually decline. Mr. Kaitani is almost unable to move, so seven helpers work as a 24-hour staff to take care of everyday items such as daily meals, toilets, and prevention of bedsores during sleep.

However, in the beginning of last month, one person took leave due to the risk of being infected with the new coronavirus due to commuting. Another helper is also absent from follow-up due to fever.

With the spread of the new coronavirus, the number of helpers that had been 7 had decreased to 5, but in order to maintain the current life, the number of helpers that had been working once a week was increased to 3 I am doing shift work with other helpers.

Kaitani is concerned that if the number of helpers decreases in the future, she will have difficulty in going to meals and going to the bathroom.

Mr. Kaitani said, "If the number of other people decreases, we will not be able to build rotations (for helper)".

Mr. Kaiya, who also runs a business office that manages helpers, has begun to consider hiring new personnel, but there is no prospect of improving the situation of labor shortage.

"When this situation overlaps, it will be quite difficult under certain conditions," he said.

He also said, "We are vulnerable to severe illness and are susceptible to infections, so I want them to end early and return to normal life."