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What people with a long term health condition are saying about their experiences with health and care

I don’t feel believed or listened to
Navigating the system is especially hard for me
I need holistic support
The right support makes a world of difference to me

I don’t feel believed or listened to

People with long term physical and mental health conditions say they’re often not listened to or believed when looking for NHS support.

It can be a fight to get a GP to refer them for treatment, or even acknowledge there’s a problem. Some are even told they’ve made up their symptoms and experiences. This makes them less likely than most to get the health and care support they need.

A disjointed system only makes this worse. Doctors not communicating properly means as they go through the system, people have to explain their conditions over and over again. At each stage, they face not being listened to or believed.

Our large-scale survey shows half of people with long-term mental health conditions (47%) and two in five with long-term physical health conditions (38%) have recently been dismissed or not taken seriously by a doctor.

And people with chronic conditions usually need support several times a year, so often have to deal with these feelings of being dismissed. For some, this can mean reliving trauma. Others fear they’re seen as “melodramatic” or “doctor botherers” by health and care staff.

In an annual NHS survey, over a quarter (26%) of people with long-term conditions said they didn’t get enough support to help them manage their condition and one in three (37%) said they did to some extent.

Many people with long-term conditions say not being taken seriously or long waiting times means it takes years to see a specialist who understands their condition. They often really have to fight to get help. This delay usually leads to conditions getting worse.

And lots of people have to start from scratch every time they need another round of treatment or surgery. This takes a real toll on their ability to work, their private life and their mental health.

I need holistic support

Many people with long-term health conditions have multiple physical and mental health conditions.

Lots say it’s hard to find anyone to treat them holistically. Those with mental health conditions caused by a long-term physical condition say they’re often treated as if the two aren’t linked. Poor communication between doctors from different hospitals or departments can make this worse.

The right support makes a world of difference to me

A few people with long-term health conditions say encounters with the right health professionals, or other support, had drastically improved their lives.

This could be a person well-placed to help them navigate the health system like a GP. It could be a doctor or nurse who empathises with and understands their condition. Lots of people say peer support groups or voluntary organisations really help them.

For people with long-term conditions, being seen by the right person, being listened to and being supported can genuinely transform their life.