Gap between patient expectations and public healthcare reality is growing

"Politicians should be more open about the kind of healthcare services we can expect to receive", says a researcher who has studied patient complaints.

"There is a clear gap between what patients expect from the healthcare services and what they actually receive", says Alison Axisa Eriksen of the University of Agder (UiA).

As part of her PhD research, she has reviewed hundreds of complaints submitted to the Patient and User Ombudsman to understand what is going wrong in the municipal health services.

Concerns about trust

"We need an open discussion about how important good public health services are. And politicians should be more honest about what we can expect from these services", says Eriksen.

The researcher points out that government white papers on health services are promising less and less, and the emphasis is on relatives and volunteers having to do more to relieve the burden on the public sector. Nevertheless, she sees from the complaints that people expect more help than they feel they are receiving.

She is now concerned about the consequences if the gap between expectations and reality continues to grow.

"What happens if people lose trust in the healthcare system? If relatives have to help more and more, trust in the entire welfare state could be undermined."

The researcher also points out that private providers may step in if the public sector fails to deliver. This, in turn, may make people more sceptical about paying taxes into a system that does not provide equally good services to everyone.

Complaints examined

The Patient and User Ombudsman is a low-threshold service available in every county. People can call, write or visit the office to get help with making a complaint about health services. In 2019, the Ombudsman documented around 4,500 complaints about municipal services.

Eriksen and her colleagues selected 221 complaints from that year. The complaints consisted of letters and emails from patients and relatives, and notes written by Ombudsman staff following conversations with healthcare system users.

We wanted to include as many voices as possible. Not everyone is able to write a complaint themselves, and some people don't dare to complain. So it was important to include the notes from the Ombudsman's office as well."

Alison Axisa Eriksen, University of Agder

Receiving less than they applied for

Eriksen identified four clear patterns in the complaints:

• The services offered to patients did not match the needs they felt they had.
• Many patients experienced gaps in the transitions between different parts of the healthcare system.
• Both patients and relatives encountered problems with the administrative process.
• Inadequate services placed a heavy burden on relatives.

Patients who applied for a place in a care home might end up receiving home care. Others received help with tasks they could manage themselves, but not with what they really needed help with.

"It is as if many people receive help that is one level lower than what they apply for. The Patient and User Ombudsman has been pointing this out for several years", says Eriksen.

Relatives foot the bill

When public services fall short, it is often the family that has to step in.

"Relatives say they are happy to help, but that they are forced to take on more responsibility than they had anticipated. They receive less and less respite care every year, whilst needs are increasing", says Eriksen.

In their complaints, relatives describe how caregiving is taking its toll on their own health. Parents of children with significant care needs have no time for themselves or for their other children. Adult children of elderly parents have to cut back on work and leisure time.

One of the complaints was from a man who was worried about his mother. She was forced to look after her husband, who was ill:

"I'm worried it's becoming too much for her. She used to be very active and went for walks regularly. She doesn't go for walks anymore. We try to encourage her to go out, but it's difficult for her because of his condition and all the extra work. She's starting to give up and is on the verge of a breakdown."

"They promise more than they can deliver"

Many people devote a lot of space in their appeals to explaining why they deserve help.

"Patients list their diagnoses, refer to what doctors have said, and emphasise that they are decent people who aren't exploiting the system. They try to show that they have a genuine need for help", says the researcher.

She noted how many complainants referred to the fact that services should be universal, and that everyone who needs help should receive it.

"The authorities have tried to be more cautious when talking about what help one can receive, but they are not clear enough about the limitations. People still have high expectations. People think they are entitled to the services they ask for, but that they may need to be better at justifying their need."

Eriksen believes it is important that people continue to complain when they feel that something is not good enough.

"Complaints are a source of knowledge. They show us where things are failing and give us the opportunity to improve services", she says.