Lost in the system? NHS referrals

Summary

Demos is Britain's leading cross-party think tank, working on different policy areas, from improving public services to building a more collaborative democracy.

In this blog, Miriam Levin, Director of Participatory Programmes at Demos, tells us about their recent report, “I love the NHS but…”: Preventing needless harms caused by poor communication in the NHS.

She argues there is an urgent need to improve NHS communications for patients and staff if we are to prevent people falling through the gaps and suffering worse health outcomes. Miriam highlights key issues with NHS referrals, disjointed computer systems and gaps in patient information, and offers some potential solutions. 

Content

The report

“I love the NHS but…” Preventing needless harms caused by poor communication in the NHS

The focus of our report was informed by a Citizens’ Assembly we ran to find out which of the many problems facing the NHS and social care should be tackled first. The Citizens’ Assembly was made up of 100 people drawn at random from across the UK, representative of the population by gender, ethnicity, geography, and political view. They decided that poor communication between the NHS and patients was vital to tackle because they said that it was a problem that affects everyone, including staff.

The report looks at everyday harms caused to people as they move through the NHS and try and get the care they need. We spoke to 2000 patients and staff about their experiences of health and care, and the problems that people face with poor communication from the NHS came out as a significant issue for many people. They highlighted that simple communications around appointments or referrals don’t work as well as they should do and how this has a direct impact on patient care and safety, mental health, trust in the system, as well as increasing the burden on already overworked staff.

Poor communication: a widespread issue for patients

What I found most worrying about our findings was that everybody had a story to tell about poor communication. Whether it was not knowing who to contact to chase up a referral, missing critical appointments because the letter didn't arrive on time, or having to repeat their story to every new doctor because the notes hadn’t been shared. The issue is so widespread.

The below statistics from our work help to illustrate the poor communication experienced around referrals:

• 17% of people said they hadn't known whether a referral that had been made for them had been lost.
• 18% didn't know who to contact about care or treatment once a referral had been made.
• 26% had to chase a referral themselves to make sure they got seen.

People also talked about referrals going astray, that they just never received the letter. Many didn't know whether the referral had even been made. If you're waiting for a referral to a consultant in a hospital and it’s been a long time with no communication, you can understandably feel like you've been forgotten. Even when people did manage to find out how to chase a referral, the information given was patchy and they were often none the wiser about when they would be seen.

People understand there will be a wait, but just want some idea as to how long it will be and who they need to talk to if anything changes in the meantime. The associated worry, stress and delay can of course impact both a person’s mental and physical health.

“My GP practice seems particularly bad at referring people properly. There have been numerous instances where I've personally had to chase radiology referrals that never reached the radiology dept, despite being assured by the GP that they would "personally do the referral". Many times I've been assured the referral would be "urgent", only to find it has gone through as "routine" and there's nothing anyone can do." Participant.

Impact on staff

We also heard from frontline staff about the impact that admin problems and system failures had on them too. Often clinical staff have to pick up the backlog of communication tasks because there's been such under investment in administrative staff and systems.

Our report isn't about bashing the NHS and saying it's failing. It is doing its best. We’re just trying to highlight how important it is to support and invest in those back-office administrative staff who keep the system functioning.

That means nurses and doctors can get on with the job they’re so brilliant at – patient care. They’ll be able to work more effectively, knowing their patient will turn up to their appointment, and the clinician will have the information necessary to give them the care they need. Missed appointments waste money and staff time.

“I work for [an] NHS hospital and every day lack of communication affects patients and staff. I think it is the biggest problem. Not being told where to go or staff not being told what is happening. We have had a problem with incorrect letters for more than 4 years and nothing is done.” Participant.

Computer systems that don’t talk to each other

Communication within the NHS is particularly bad at the join between primary and secondary care. Hospitals and GP practices within a single Integrated Care Board area can have different computer systems that don’t talk to each other. This is inevitably going to lead to patients falling between the cracks, and information getting lost and being missed which is a huge patient safety concern. Even if a system works most of the time, it’s not ok that such a huge number of people are not receiving the letter or referral information they need.

Just a few months ago there was a lot of media coverage around the failing of an IT system and 24,000 letters that were not sent out as a consequence. A similarly shocking story emerged at around the same time, revealing how 400,000 digital healthcare letters had not been sent.

The Health Services Safety Investigations Body (HSSIB) says computer failures consistently feature in their investigations and that it has found evidence that IT system errors have led to patient death. It just highlights the urgent need for safer communication systems to be in place and more investment in this area.

Avoidable harm

Poor communication can affect people in a range of ways, from causing the relatively minor inconvenience of making a few phone calls, to having a serious impact on patient safety and health outcomes. We had examples where referrals weren’t made or letters weren’t sent, leaving patients without the care they needed. In some cases that care was critical.

“I went for an urgent appointment for an ultrasound on my abdomen, to be told there was no record of me on the system for that day. When I explained the booking team had called me two days earlier and asked me to come down I was told there was no record of this and the clinic was full. As it happened the sonographer did scan me [and told me] I had a mass in my gall bladder and needed to contact my GP ASAP as it needed further investigation.” Participant. 

There is also a huge mental and emotional strain that cannot be ignored when we are talking about needless harm. Worrying about what's happening with your appointments, whether you're going to get it, when it is going to be, and whether the letter will turn up, is so stressful for people.

Calls for action

There’s no easy and quick fixes. But we wanted to start by looking at examples of good practice with a group of patients, staff and members of the public, including those with complex health needs. Our participants identified what would make the a difference to the communication issues between the NHS and patients.

These discussions were drawn up into three calls to action:

• An expansion of the system of care coordinators and improving access to clinicians with oversight of all the care received by people with complex conditions.
• An expansion of the system of care navigators in GP surgeries across the country, helping people to navigate complex systems and linking people up with the right services.
• Improvements to the uptake and use of the NHS App through improved functionality and greater publicity.

The calls to action highlight the need for a better ‘map’ of the NHS and easier access to information, so patients can understand what’s going on and get the care they need. But ideally the system should not be so overly complex that a ‘map’ is required. For longer, sustainable change, I believe there needs to be urgent investment into administrative resources and back office functions so that all systems can function well.

Final thoughts

Poor communication systems within the NHS are widespread and have an impact on the health and wellbeing of patients, and the ability of staff to function effectively, as well as resulting in declining confidence in the NHS. These issues don’t paint the picture of a crisis as readily as ambulances queuing outside of A&E do, but they matter to patients and also carry significant risk.

NHS communication needs to be better for everybody, but particularly for people who aren't able to make those phone calls, know who to call or who feel they have no right to challenge or chase. These are often people who already face multiple barriers to health equity; good communication could help break some of those down.

The thing that we heard over and over again from the people that we talked to, is “I love the NHS, I'm so grateful that it's here, the care I received from my doctor was amazing”. Followed by all the things that don't really work. I love that people are so proud of the NHS as an institution, but I think we can be too fearful to challenge the things that are not working well and are instead undermining the really wonderful person-centred care.

When it comes down to it, people weren’t telling us that they wanted the NHS to cure cancer, just that the letter about their next appointment was sent out correctly. 

Share your experience

What are your thoughts on the issues raised in Miriam's blog? Have you been affected by a lost or delayed referral, or poor communication? What are the risks to patient safety and what action do you think would help improve things? We would like to hear from anyone with insights to share; patients, carers and staff.

Please comment below (sign up first for free) or contact us on content@pslhub.org to share your insights.