Carers and patients with long-term health conditions are significantly more likely to experience issues with NHS admin and communication that impact their care, according to a new report from the King’s Fund.
The report written in conjunction with National Voices and Healthwatch England, Lost in the system: the need for better admin in the NHS found that nearly two in three (64%) patients and carers have experienced at least one admin problem over the last year, such as lost test results, inability to change or cancel appointments, or receiving incorrect information.
In addition, one in five (20%) people who used the NHS in the past 12 months received an appointment invitation after the date of the appointment. Of those who faced admin issues, four in 10 (42%) say they are less likely to seek care in the future.
The study found that 75% of patients with one or more long-term health conditions had experienced an issue with NHS admin in the last year, compared to 57% of those with no long-term health conditions.
Mencap said that it was deeply worrying to hear people are being deterred from getting medical treatment because of NHS admin issues, and this can be particularly harmful to people with a learning disability, who already face huge inequalities in getting the healthcare they need.
Jon Sparkes, OBE, Chief Executive at learning disability charity Mencap, said: “Having to chase test results, not knowing who to contact or how long you might have to wait for treatment is hard for anyone and it’s unsurprising that people end up with delays to care or treatment or feel like giving up. It is an even heavier burden for people with a learning disability who are struggling to navigate a complex health system.
“For people with a learning disability these barriers to healthcare form part of the picture where they die on average up to 23 years earlier than the general population with many of their deaths avoidable. Delays to accessing care and treatment are a key driver of these shocking inequalities.
“Poor NHS admin isn’t just an inconvenience; it actively deepens health inequalities. The Government’s 10 Year NHS Plan must fix these preventable admin failures and ensure the healthcare system meets the needs of people with a learning disability. This includes ensuring they are supported to access easy-to-understand information and are able to contact NHS services in a more accessible way.”
Ismail Kaji, from London, who has a learning disability, accidentally missed an appointment for an epilepsy check-up in 2024, which resulted in him being discharged and left him in the stressful position of trying to get back on his pathway of care – this was harder because he has a learning disability.
“When I got a letter to say I had been discharged I felt let down and then had to try to get a new appointment with my GP to start the process again. It was so stressful. It was so hard trying to get another appointment with the GP. I made so many phone calls and spent a lot of time on hold, only to be told there were no appointments.
“I found phoning the GP especially hard because of the phone system – it was hard to remember all the different options and what the right option was. Repeating myself over and over again to different people was difficult and it took a few months for me to get another appointment. I got a new appointment, only to have that one cancelled and have to chase up again.
“Making appointments should be made more accessible for people with a learning disability. A lot of the time when I try to make an appointment, I get directed to an online form, which I find difficult and uses jargon that I don’t understand. When I’m on the phone trying to make an appointment, I tell the staff I have a learning disability, but they just give me the same lines, and I feel rushed. They don’t give me other options or change the language they use. They just tell me there are no appointments or direct me to the form, which isn’t accessible. I know they’re busy, but I think they should stop rushing and try to come across a bit more supportive.”
The authors say poor admin also affects staff working in the NHS, who can bear the brunt of people’s frustration when patients have been given incorrect information, they do not know who to contact while waiting for care, or their test results have gone astray.
The common issues experienced include:
Of those who have experienced at least one admin issue in the previous 12 months, 42% said they are less likely to seek care in the future due to their experience, and 47% reported it made them think the quality of care the NHS provides is poor.
Julia Cream, Policy Fellow at The King’s Fund and co-author of the report, said: ‘The number of people affected by poor admin is stark. Today’s results lay bare the day-to-day dysfunction of an NHS that is too often not meeting people’s needs and highlights the deep inequalities people experience when they are trying to access and engage with health services. Behind these numbers are stories of people who are worried about their health and struggling to get through the NHS’s front door.
‘The government is trying to bring down waiting lists and improve access but these efforts will fail if the NHS cannot communicate effectively with people about when their appointment is or who they need to contact.
“Poor admin drives up perceptions of an NHS that wastes money and staff time and puts people off seeking care. Admin matters and it’s time that admin, and the staff that deliver it, are recognised for the value they bring.”
The King’s Fund, National Voices and Healthwatch England say they want the government and the NHS to focus on improving patient communication and admin, with the health service required to regularly report on patient experience of admin processes. They are also calling for admin to be prioritised in the upcoming government 10-Year Health Plan expected later this year.
The three organisations recommend that NHS leaders and policymakers ensure there is adequate training and development for NHS admin staff and that patients are part of the design, delivery and testing of new admin approaches.
