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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.  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 [email protected] to share your insights.

Patient safety and healthcare information are inextricably linked. But how can you be certain the content you’ve produced, or information you have received as a patient, is indeed ‘safe’? The sheer volume of information available is staggering – be it a leaflet about skin cancer, a poster about vaccines in your GP waiting room, a YouTube video about healthy living or a consent form for a surgical procedure. The list goes on and on and, without professional review, there really is no knowing how safe that information is. If you work in the healthcare sector, and especially if you work in the creation of healthcare information, you will probably be familiar with the Patient Information Forum and their ‘PIF TICK’. The PIF TICK provides reassurance that what is being given to patients is: safe reliable accurate accessible.   At EIDO Healthcare, we were awarded our first PIF TICK in October 2020 and have had it successfully renewed every year since. In this blog, I will talk about my experience of receiving and maintaining a PIF TICK for our library of information leaflets for patients needing surgery. The PIF TICK is awarded following a thorough review of the steps an organisation takes to produce, review and maintain patient information. Questions are asked about a wide range of things, including author selection, patient involvement, accessibility, file management, and version control An area that I found particularly useful to focus on was that of documentation… Are all your processes clearly defined? Do you have a clear filing system for documentation? If you were to win the lottery and jet off to the Bahamas, would someone else be able to seamlessly step in and manage the content? That last one may seem flippant, but these are all important patient safety questions. If your information is visible to patients, and may influence decisions they make about their care, it must be gold standard. If your processes are disorganised, only truly known by one person or inconsistent, can you guarantee that your information is safe for patients? The PIF TICK really motivated me to streamline our documentation. The processes stayed much the same, but now we also have a comprehensive structure that is easy to follow. This in turn simplified the onboarding pathway for new colleagues. We just have to point them to our process documentation, which explains exactly what it is we have to do and how it has to be done. The PIF TICK process is now fully online with a clever programme that allows you and your colleagues to complete sections for each criteria as and when you are ready to do so. This means you can divide the application, depending on who is responsible for which steps in your workflow. The PIF TICK team then review your responses and go through them with you on a video call. A report is produced and, once they are happy, you will be sent a certificate. This means you can include the PIF TICK logo on any of the information produced using those processes. The PIF TICK team will also give you advice and actions around any areas of weakness that you will need to work on to maintain the accreditation. I can say with absolute certainty that having a PIF TICK (and more importantly, going through the application and review process) has improved both the way we manage our health information and the content itself. It also offered the opportunity to identify and fill any gaps, streamline existing processes and introduce new ones. My initial nervousness around having a magnifying glass held up to our work quickly turned into genuine excitement about the positive difference it would make. Working with my team on it this year, I also noticed how much we were all enjoying talking about our every-day tasks and the effort that goes into them. Sharing the detail of how we take care of our content was affirming and served as a reminder to us that what we do supports patient safety. We produce content that is easy to read, up to date and accessible. This is endorsed by the Patient Information Forum and so we feel reassured that our content contributes to patients making safe and informed decisions. As well as being hugely constructive, the whole PIF TICK process is great for morale and it’s always really exciting when PIF send us our renewal certificate. As I finish writing this blog I have just received an email confirming our PIF TICK has been renewed for another year. I can’t wait to share the news with my team! Visit the Patient Information Forum website for more information about the PIF TICK.