Julie EIDO Healthcare

We all have a right to receive information about our own health in a way we can understand. There is no excuse for poor-quality, inaccessible, information that excludes people. In this blog I will consider how these needs can be met and the implications for patient safety if they are not. I have written about accessible information in the past but in this blog, I will dig deeper into some specifics, namely: Special educational needs, learning difficulties and disabilities. Visual and hearing impairments. Dominant language.  If you’re interested in accessible information, I’d strongly recommend you familiarise yourself with the Accessible Information Standard – this is a standard that the NHS and adult social care have to adhere to by law when it comes to communicating with the general public. This blog will give some tips on how you can make sure you meet this standard.  Special educational needs, learning difficulties and disabilities It isn’t always easy to explain complex healthcare information in a clear and accessible way. This is particularly true if the reader has special educational needs, learning difficulties (such as dyslexia) or disabilities (‘additional needs’). But these people have the same right as everyone else to access information that enables them to safely manage their healthcare needs. If a patient is unable to read a letter inviting them to a hospital appointment, can’t make sense of a complicated leaflet about their medication or finds pre-operative advice confusing, their safety is compromised. Easy Reads It's important to consider whether you can make one version of the content you create accessible to all, or if it is more appropriate to create ‘Easy Read’ versions. This is what my team do with our information library about surgical procedures. We recognised that the content we create for the purpose of supporting informed consent can be quite complex. While, of course, we make sure it is written in plain English, the level of detail needed for consent is still often not appropriate for someone with additional needs. The content in our Easy Reads: is significantly shorter uses lots of pictures and photos uses a larger font. Important information that can impact on patient safety, such as what you should and shouldn’t do before and after the procedure is highlighted. Having Easy Read versions of our leaflets (that have been worked on by a specialist in Easy Read information) helps to reassure clinicians, patients and carers, that patient safety has truly been considered. Dyslexia-friendly information One in ten people in the UK are dyslexic[1] If you are creating written information, the learning difficulties faced by someone with dyslexia need to be accounted for. There are some simple changes you can make to your content such as font type, size, layout and use of white space. The British Dyslexia Association has a free-to-use style guide on their website.[2] Visual and hearing impairments We all consume information every day, be it on our phones, our computers, our TVs or even good old-fashioned books, newspapers and leaflets. For most of us, the standard delivery of information is suitable, and we don’t need to give it a second thought. For many, however, these formats simply do not work for them. According to the Royal National Institute for the Blind, more than 2 million people in the UK are living with a level of sight loss that impacts their daily lives.[3] According to the Royal National Institute for the Deaf, 12 million people in the UK are deaf, have hearing loss or tinnitus.[4] Those are not small numbers. Fortunately, technology can be a great help and quickly resolve accessibility issues people for with visual or hearing impairments. Unfortunately, this is not always used, and people often get forgotten or excluded. Again, it may seem obvious to say, but the risk this can present to patient safety is huge. Sending someone who is blind a letter about an urgent hospital appointment that is not written in braille or any other accessible format could literally mean the difference between life and death. Leaving a voicemail for a deaf patient about a new date for their procedure could result in lengthy delays to, potentially critical, treatment. Formatting options It is the duty of the organisation supplying information to know what needs their users have and provide for them accordingly. In my line of work this means making sure all of our written content is available in accessible formats. For example, our library can be downloaded in large and giant print. We make sure our content can be read by screen-readers. All of our video content comes with a voiceover and captions and all of our illustrations include alt text (this is ‘alternative text’ that describes the image). Most computer programmes come with this technology inbuilt and as AI develops at speed, automated captions, screen readers and alt-text generators are getting better and better. For face-to-face or video content, the use of sign language for deaf patients could make a real difference to how they engage with their care. Dominant language Around 8 in 100 people in the UK do not have English (or Welsh in Wales) as their first language, according to the 2021 census.[5] This amounts to around 5 million people. Of that 5 million, the top two nationalities represented are Polish and Romanian.[6] These countries have their own national languages and so it is likely that most Polish and Romanian people did not grow up speaking English. While it is not always practical or feasible to have all information in all languages, it is important to consider the demographics of the people receiving healthcare information. You may wish to translate your information into those most common dominant languages as a starting point. It is also useful to monitor events that may impact that demographic. For example, following Russia’s invasion of Ukraine in February 2022, we translated our most common procedures into Ukrainian and Russian. This was to make sure that refugees fleeing the war had access to safe, up-to-date information if they needed surgery while living in the UK. Again, technology can help with this, especially if you are a small organisation or charity with a limited budget. The advancement of AI and machine translation means that information can quickly and cheaply be translated into most languages to a fairly high standard. However, I would urge anyone using AI technology for this purpose to involve native speakers of that language with relevant clinical expertise to review the content. Simply putting it through machine translations and then sharing with patients is not a safe option. Human translations should always be the first option if your budget allows. For face-to-face patient interactions, a professional interpreter may be needed. This requires forethought and planning. Health professionals must, where possible, familiarise themselves with those patients who are likely to need interpreters so they can be organised in advance of appointments. Simply relying on a family member or friend is not advised. This could present a serious risk to a patient as the dynamics of that relationship, or the ability for that person to accurately interpret information, are likely unknown. Summary There is so much that can be said about accessibility challenges and solutions and it’s impossible to cover it in a single blog post. The key point that I’d like you take away from this, though, is that without patient engagement, we do not have patient safety. Information needs to be accessible in order for patients to understand it and make informed decisions. There is a wealth of resource and support available and most of it is free. I’ve listed just a handful of these below. Useful resources/further reading Mencap resources for healthcare professionals Easy Ready UK Easy Read Facebook Group The Accessible Information Standard Making it Clear Sign Health resource The British Dyslexia Association style guide RNIB guide to large and giant print Patient Information Forum ‘Accessibility Matters’ poster Patient Information Forum web accessibility guide Read more blogs by Julie Smith References British Dyslexia Association (accessed online, 14/02/24). British Dyslexia Association, Creating a dyslexia friendly workplace (accessed online, 14/02/2024). Royal National Institute for the Blind (accessed online, 14/02/24). Royal National Institute for the Deaf. Prevalence of deafness and hearing loss (accessed online, 14/02/24). Office for National Statistics, 2021. Language, England and Wales: Census 2021. Statista, 2021. Non-British population of the United Kingdom in 2020/21, by nationality (accessed online 14/02/24).

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.

Yvette Greenway-Mansfield experienced complications relating to the vaginal mesh that was used to treat a uterine prolapse. Those complications were not listed on the consent form she signed. Fortunately, she kept her copy and was able to prove this. Yvette has recently been awarded £1 million because it was found that her form had been doctored after she had signed it.   Her successful medical negligence claim was also based on the fact that alternative treatment options were not considered when they should have been. These alternatives came with fewer risks, and it was agreed that they would actually have been more suitable in her case.  In this blog, I reflect on the levels of harm caused to the patient and how digital consent forms could help protect others.  “I felt utterly vindicated. If I hadn’t kept that documentation, I could be standing in court, being subjected to a grilling, being made out to be a liar. It breaks my heart for women who have to go through that.” Yvette Greenway-Mansfield. When I read about Yvette’s experience, I was stunned. Anyone who follows healthcare news, and especially readers of the hub, will be familiar with the vaginal mesh scandal and the horrors experienced by so many women. Yvette is one of these women. But what stopped me in my tracks was that not only did she have to endure debilitating physical pain, she then had to prove that she had not been warned of those complications. Standing her ground when a trusted healthcare professional had doctored her consent form must not have been easy. If she had not kept that copy, she would most likely have been perceived to be lying, confused or ignorant, or possibly all three. It is often assumed that patients don’t read the information given to them about their care. This is why the healthcare professional in question, I assume, must have hoped they would get away with falsifying her consent form. Not only does it show a flagrant disregard for integrity and decency, but it is also an extraordinary act of disrespect towards the victim. It also raises the question of whether this happens more frequently but cannot always be proved if the victim is unable to produce their copy. One way to avoid this is to make sure everyone is offered a digital version of their consent form – something the NHS is moving, albeit slowly, towards. A paper trail (preferably digital) evidencing the information patients have been given and the forms they have signed is achievable in this day and age and something all healthcare providers should be aiming for. The implications of this story are far reaching: Yvette’s trust in her healthcare team was completely destroyed. She was harmed by a treatment that was later deemed unnecessary. She had her consent form altered without her knowledge. She finally had the mesh removed following a private referral. To this day, she has to live with urinary and faecal incontinence and chronic pain. How can we expect someone who has been through all of that to trust the healthcare system? If and when she experiences health problems in the future, who will she turn to? I cannot speak on her behalf, but I suspect she will be reluctant to engage with the NHS. Cases like Yvette’s are, fortunately, few and far between. However, it is important that healthcare professionals and organisations learn from them and take steps to ensure they do not and cannot happen ever again. I am passionate about patient need and expectation when it comes to informed consent. My team and I work with clinical consultants to create patient information about surgical procedures, so this story really hit a nerve. Digital consent forms can ensure that everyone has a record of the information sent to the patient and, if they go ahead, the consent form for that procedure. That way there is simply no option or opportunity for anyone to change or lose it. I hope to see the option of digital consent being rolled out across all healthcare organisations in the UK in the very near future. Related reading: Woman who suffered complications from vaginal mesh implant awarded at least £1m What does pelvic mesh do and why are women suing over it? – explainer The difficulty of medical negligence cases and why financial redress from the Government is so important for mesh victims Using digital pre-op information to support informed consent (by Julie Smith) Accessible patient information: a key element of informed consent (by Julie Smith) Informed consent: what is it? When will the Government take responsibility and meet the needs of all mesh patients? A blog by Paula Goss Doctors’ shocking comments reveal institutional misogyny towards women harmed by pelvic mesh First Do No Harm. The report of the Independent Medicines and Medical Devices Safety Review (8 July 2020) Share your thoughts What did you think about the issues raised in Julie's blog? Have you ever had to sign a consent form in healthcare for yourself or on behalf of someone else? How was the process? Did you feel well informed to make a decision? Could anything be done to improve the consent process? Perhaps you're a healthcare professional who can share good practice or some of the challenges that might exist in making sure everyone is able to make an informed decision before undergoing medical treatment or surgery. Please comment below (sign up first for free) or get in touch with us at [email protected] to tell us more.

Digital delivery of information is the new normal and it’s important that healthcare providers adapt quickly. Informed consent in the UK needs to be backed up by the BRAN principle: Benefits, Risks and Alternatives including the option of doing Nothing.  In this blog, Julie Smith, Content Director at EIDO Healthcare, will use the same principles to consider the use of digital solutions for patient information. This blog is not exhaustive but will hopefully provide some food for thought around the patient safety considerations relating to digital information.  Benefits Patient experience A study published in the World Journal of Surgery[1] earlier this year assessed digital delivery of informed consent information. The authors concluded that the system reduced the number of hospital appointments needed and improved the quality of in-person consultations. Most importantly, participants felt empowered to make an informed decision: ‘The information was felt to be “easy to read and navigate”, and made users feel that they were a part of the shared decision-making process. One user stated that, “The process makes me feel responsible for making a good decision about my own health care”.' Digital delivery of information offers accessibility features to help those in need. Screen readers can read content out loud and font style and size can be adjusted for better visibility. Importantly, these are features that do not rely on patients having to specifically request the format that meets their requirements. They can simply toggle it on or off. To enhance the written content, animations and videos can be embedded with voiceovers and captions in different languages. Risk rates, which are often difficult to communicate, can be better presented with data visualisations or pictographs. This flexibility is not as easy to achieve in printed information and all patients, regardless of need, will often receive the same version. Resources In terms of time and money, the savings potential of digital information is huge.[2] A paperless, digitised NHS has failed to materialise despite numerous policies and targets. Moving pre-operative patient information online would represent huge savings on printing costs and would help trusts get closer to those elusive paperless targets. It would also, of course, be better for the environment. Recording and reviewing Digital solutions offer a more accurate and reliable system of record keeping. Some platforms can actually track a patient’s activity. This means health professionals have an insight into how much time the patient has spent reading the information, right down to each section. In practice, this means the surgeon knows which areas the patient spent the most or least time on, and so can focus on those areas in the consultation. Health professionals can also quickly see what information has been sent to which patient and when. Most solutions connect to electronic patient records, allowing for seamless record keeping – something that paper-based solutions can sometimes fail on. Printed information has a shelf life. In some cases, it can become out of date within weeks. This was especially true at the height of the Covid-19 pandemic, when pre- and post-operative advice and information was changing regularly. If the information is kept digitally, it can be updated in real time. This means that when the health professional or patient visits the supplied link, they will be seeing the most up-to-date version. Risks Digital exclusion The Covid-19 pandemic catapulted many of us to a level of digital literacy that otherwise would probably have taken many years. Zoom calls, QR codes and online appointments became the status quo, and even though the pandemic is over, these, along with many other technologies, are here to stay. However, it is important to recognise that digital literacy and access are still out of reach for a significant percentage of the UK population. According to the 2022 Lloyds Bank Consumer Digital Index:[3] ‘Around 5 million (10%) cannot use an app and 4.5 million (8%) cannot turn on a device and enter login information by themselves. Overall, 5.3 million (10%) of the UK, lack both the digital basics and the essential digital skills for everyday life.’ There is a distinct difference in age groups, with 48% of 18 to 24-year-olds reporting using the Internet for managing their physical health. This number declined as respondents got older, with just 27% using it for that reason in the 60+ age bracket. This is important to note as the surgical population in England is ageing and at a faster rate than the general population.[4] So, those most likely to need surgery are also less likely to be digitally literate. This is an important consideration for health professionals supplying patient information. Accessible versions should always be made available and for a lot of people this will be in print. Focus should also be on education about and access to digital information to ensure no one is left behind. There is some great work being done in this area by organisations like the Good Things Foundation. At EIDO Healthcare, we continue to supply information in print and currently this is the most used format. However, we do expect so see a shift towards digital content in time. Connectivity and cyber attacks Internet connections must be stable in order to issue and access digital information and data privacy rules and regulations must be observed. Health providers have a responsibility to have contingencies in place for network outages and breaches. However, this cannot always be guaranteed so back-up systems must be in place at all times. The NHS has been a victim of a number of cyber attacks that present a serious patient safety risk. In 2017 a global cyber attack impacted GP practices and hospitals across England and Scotland[5] and in August 2022 another attack meant NHS staff in some trusts were unable to access patient notes for a number of weeks.[6] In 2021 Ireland suffered the largest ever attack on a health service computer system.[7] Some 90,000 people were affected. As a result of these attacks, healthcare organisations are investing huge amounts in preventative and reactive measures; however, this is still a risk that must be considered. Alternatives, including doing Nothing In this scenario, doing nothing would amount to sticking to the status quo. If the NHS and other healthcare providers chose to ‘do nothing’ and continue with current paper-based systems there would likely be no immediate or obvious adverse effect. Many trusts are still giving patients print outs and it will be some time before they move to digital. However, the indirect effect of never moving to digital will be the continued delays to treatment as time is spent on waiting for and carrying out lengthy face-to-face consultations. More than ever, the NHS is under pressure to find ways of saving time and money. Doing nothing will result in the opposite outcome. Final thoughts EIDO patient information leaflets all have the same final paragraph, and I think it can be applied here, with a few tweaks: Digital solutions are usually safe and effective but complications can happen. You need to know about them to help you to make an informed decision about using them. Knowing about them will also help to detect and treat any problems early. References Parsons SL, Daliya, P, Evans P. et al. Digital Informed Consent: Modernising Information Sharing in Surgery to Empower Patients. World J Surg. 2023. Brother UK. What's stopping the NHS going digital? 2021. Lloyds Bank. UK Consumer Digital Index 2022. 2022. Fowler A, Abbott T, Prowle J et al. Age of patients undergoing surgery. Br J Surg. 2019:8. Comptroller and Auditor General. Investigation: WannaCry cyber attack and the NHS. National Audit Office. 2018. Thomas R. Cyberattack: NHS staff unable to access patient notes for three weeks. Independent online. 2022. Health Service Executive. Cyber-attack and HSE response. Related reading Accessible patient information: a key element of informed consent Long surgical waiting lists: improving outcomes with patient information Informed consent: what is it?

Consent to treatment such as operations and diagnostic procedures can only be truly informed if the patient understands the risks, benefits and alternatives. They also need to have considered what will happen if they choose not to have any treatment at all. A failure to obtain informed consent is not only unlawful, but can contribute to lasting physical and psychological harm. In this blog, hub Topic Leader Julie Smith looks at the different areas to consider when creating written information that is genuinely useful to the patient. Julie’s advice also helps readers understand how they can provide information that is medico-legally sound. One in 7 adults in the UK have the reading age of between 9 and 11 years old.[1] This is a significant proportion of the population, and likely to be over-represented in the hospital setting (there is a direct proven link between health and education status[2,3]). According to the National Literacy Trust, 1 in 5 people in the UK have ‘very poor literacy skills’.[4] So, it is imperative that we write patient information with this in mind. People with higher literacy skills will also appreciate the clear and simple approach. How to create accessible information Your information may be written by an expert health professional (if it is not, it should be reviewed by at least one, to ensure its clinical accuracy). Health professionals are not trained writers, and so their writing style may need work to make it accessible. The following techniques can help you with this. Use ‘Plain English’ Plain English must be used at all times. Some key facets of this are: Short sentences (UK government guidance recommends a maximum of 25 words[5]) No jargon. Where certain medical terms cannot be avoided, they should be explained Clear illustrations that add to/aid the patient’s understanding. If online, these should include alt text for patients with impaired sight Tables, flow charts and bullet points to break up chunks of text, but only when appropriate and useful Appropriate font (Royal National Institute of Blind People (RNIB) recommends Arial 14 point or bigger)[6] Accessible formats: large print, giant print, screen readers and translations Easy Read versions of the information[7] Consistent style, point of view (first or third person) and tone of voice Animated/video content where possible and appropriate. This format can be adapted with voiceovers and subtitles in different languages to increase its reach. Get expert support There are several organisations that offer a review service for patient information, including: the Plain English Campaign (PEC) the Patient Information Forum (PIF) Patients Association the RNIB Mencap Making It Clear. This not only helps you to create the best possible content, it also reassures patients and clinicians. Some offer accreditation based on a review of content and processes. By adding their logos to your content, you are reminding those reading it of the stringent processes it has been through. Sign up for training Anyone responsible for writing and/or editing patient information should also be trained appropriately. There are lots of great courses out there that can be done remotely and over a few days. If you go down this route, you and/or your colleagues should attend refresher courses at least every 2 years. Involve patients Where possible, patients should also be included in the process of creating information. This can happen while the information is being produced but it does not have to stop there. Once the information is out there, you can ask patients to give you feedback on it. How can we assess understanding? Demonstrating that patients understand information about a particular operation or procedure can be a challenge. People tend to only remember about 50% of the information given to them in a medical consultation[8]. Again, this is even lower for patients with limited education.[1] This is why written information is often provided, so patients can go home and read it in their own time, in a space they feel is safe and comfortable, and with loved ones, so they can talk it through. It is the responsibility of the information provider to produce content that meets all the requirements outlined above. It is the responsibility of the clinician to speak to the patient about it both before and after they have had a chance to read it. The clinician should ask questions to check the patient’s understanding and, more importantly, allow the patient to ask any questions of their own. EIDO’s digital informed consent platform can produce timing reports that show how long a patient has spent on each page or section of the information. This can help direct that conversation as the clinician is able to see how engaged the patient has been with the information ahead of the consent session. Final thoughts Producing patient information must be thorough, but it does not need to be arduous. If you set up the process at the very start, you just need to follow it every time you produce something new. There are many resources out there to help and I would urge anyone involved in patient information to use them. This is how you can contribute to patients making truly informed decisions about their care. References National Literacy Trust. What do adult literacy levels mean? Accessed online 15/03/23. Health Action Campaign. The role of education in reducing health inequalities. July 2021. NICE. NICE impact people with a learning disability. November 2021. National Literacy Trust. What is literacy? Accessed online 15/03/23. Government Digital Service. Content design: planning, writing and managing content. Updated 17 January 2023. Accessed online 15/03/23. RNIB. Understanding the Accessible Information Standard. Accessed online 15/03/2023. Easy Read information may not meet the medicolegal standards needed to support informed consent. However, it can be used to help a patient who lacks decision-making capacity to understand what will happen. In these cases, a health professional or legal guardian will likely make the decision on their behalf. Patient Engagement Hit. Patient Recall Suffers as Patients Remember Half of Health Info. Patient Data Access News. 26/03/18. Laws MB, Lee Y, Taubin T, Rogers WH et al. Factors associated with patient recall of key information in ambulatory specialty care visits: Results of an innovative methodology. PLoS ONE. 2018:13(2)

Julie Smith, Topic Leader for the hub and Content Director at EIDO Healthcare, takes a look at how patient information can be used to help improve outcomes for those on long surgical waiting lists. In a recent meeting a spinal surgeon based in Wales told me that some of his patients are expecting to wait 3 years for their planned operation. Other health professionals have told me their patients are waiting anything between 18 months and 2 years. Around 3000 people in England had been on a waiting list for more than 2 years as of April 2021, as reported by the Kings Fund [1]. More recently (October 2022), the BMA [2] reported that nearly half a million people in England are waiting over a year for consultant-led elective care. While this may come as a shock to many, for those working in the NHS, this is a grim and familiar reality. Even if you aren’t waiting for surgery, you will be aware of the waits for any level of NHS care, be it an appointment with your GP, a call to 111 or perhaps even a medical emergency. This clearly presents significant risks to patient safety and innovative approaches are being taken across every part of the NHS to mitigate them as much as possible. An area that is of particular interest to me, of course, is patient information. Lifestyle changes Strange as it may sound, while waiting months or even years can increase risks, it also presents an opportunity to improve outcomes. Patients are generally advised to maintain a healthy weight, quit smoking, reduce alcohol intake and exercise regularly in the lead up to their operation. If a patient has a long wait for surgery, they have more time to work on these areas. Studies have proven time and again that positive lifestyle changes can significantly reduce the risk of infection, cardiovascular and pulmonary problems, anaesthesia-related issues, longer hospital stays and more [3]. Recovery is also likely to be faster and smoother if the patient is healthy. Those responsible for supplying information to patients must take advantage of this time to properly educate them on these benefits. The NHS has some online resources that patients can be directed to. Knowing what to look out for while on a waiting list A long wait for an operation can be a worry. It can also exacerbate the problem as symptoms worsen with time. Again, information is key here. There is a risk that patients on waiting lists ignore their symptoms as they feel reassured that they are waiting for an operation to resolve them. However, there will be some red-flag symptoms that indicate the patient is in danger of deteriorating if they are not seen urgently by a health professional. It is essential that patients are fully informed of health-related red flags and what to do about them if they occur. It could mean anything from contacting their GP to calling an ambulance. Our leaflets, designed to support patients deciding about their care, have recently been updated to better inform those on long waiting lists. The leaflets are procedure-specific and so is the waiting list advice. Patients are advised on which symptoms, specific to their condition, to look out for and what to do if they develop or worsen. Information around lifestyle changes has also been elaborated on. Whether an EIDO leaflet is available or not, this is a really important consideration for all health professionals managing communication with patients on waiting lists. Equally important is regular check-ins from their healthcare team to reassure them and discuss any concerns. This can be particularly helpful if the patient’s mental health is at risk. If patients are not having these check-ins, I would encourage them to ask for them. A longer lead time between being added to the waiting list and the date of surgery allows patients longer to get themselves ready. It also makes patients more vulnerable to deterioration. High-quality patient information could make the difference between a good and a bad outcome. References Waiting times for elective (non-urgent) treatment: referral to treatment (RTT). Kings Fund. 5 August 2-21. Accessed online 14/02/23. NHS backlog data analysis. BMA. Accessed online 14/02/23. Preparing for an operation with lifestyle changes. Cochrane UK. Accessed online 14/02/23.

Julie Smith is Content Director for EIDO Healthcare, an organisation that provides health professionals with resources and support around informed consent. In this blog, Julie explains what it means to give your ‘informed consent’ as a patient, and why it is so important to read the information given to you.  There are a few key phrases that we may hear or read if we are told we need a surgical procedure: ‘shared decision making’, ‘consent to treatment’ and ‘informed consent’ to name a few. A common reaction is to see these processes as the small print, not dissimilar to ticking a box to agree to terms and conditions we almost certainly haven’t read. We all know deep down we should read them, but really, what’s the harm? And who has the time? When it comes to a surgical procedure, the implications can be significant, and in this blog post I will attempt to explain why. I will describe what those terms really mean, and why, as patients, we must all take some time to familiarise ourselves with anything we are putting our signature to. Anecdotally, surgeons tell me that many patients defer to their expertise when it comes to making a decision about a surgical procedure. They are, after all, trained to a very high level and, by definition, experts in their field. We are right to trust and rely on them to give us all the information we need. However, we also need to understand any potential consequences so we can make a decision. While it’s appropriate to defer to the experts for information, they are not the ones making the decision to go ahead or not. Moving away from a paternalistic relationship This brings me to my first definition, ‘shared decision making’. The National Institute for Health and Care Excellence (NICE) defines it as: ‘…when health professionals and patients work together. This puts people at the centre of decisions about their own treatment and care.’ You can read the full NICE definition here. This means that the relationship between the health professional (in most surgical cases, this is the surgeon) and the patient should not be paternalistic. While it is accepted that the health professional is the expert in this scenario, it is not appropriate for him or her to tell the patient what to do. We now have the Montgomery ruling, which transformed the patient consent journey, shifting the power from the clinician to the patient. I don’t have the space to describe this in detail, but I would recommend taking five minutes to read about the Ruling and to watch the short interview with Nadine Montgomery. The resultant ruling of this case acknowledged the importance of ‘material risk’, stating: ‘Material risk is a risk that is deemed to be of significance by an individual patient rather than by a body of doctors.’ So, what does all of this actually mean for patients? Well, most importantly, it means the conversation about treatment has gone from largely being one way, to an open, two-way discussion. The result of this conversation should hopefully be ‘consent to treatment’ – my next definition. It really is what it says on the tin. But it goes much further than ticking a box or signing on the dotted line. Making a decision to have surgery may be the biggest decision you make in your life. You may not feel that you have a choice, and in many cases, if you don’t go ahead with it, the problem will continue, worsen and it may be life-threatening. This, however, does not mean you should just say ‘yes’ without giving it due consideration. Have you been told about alternatives to the surgery being offered? What about the risks and potential complications? What would happen if you said ‘no’, both in the near and distant future? What information should patients be given? This is where ‘informed consent’ comes in. Informed consent means the patient has been made aware of the Benefits, Risks, Alternatives and doing Nothing by a qualified health professional. This is known among health professionals as ‘BRAN’. BRAN is essential for equipping us to make decisions about our treatment. But how is this information actually prepared and presented to us? In my role as Content Director at EIDO Healthcare, I am responsible for getting the written versions of this information from the surgeon who writes it to the health professional sharing it with patients. But what is that information, and what part does it play in shared decision making and informed consent? In short, it is written information about the procedure your surgeon has recommended. Many hospitals and/or surgeons write their own information, but at EIDO we maintain one version of each document that is used by hundreds of hospitals and surgeons both here in the UK and elsewhere around the world. Either option is fine, as long as the information is reviewed and updated regularly. Don’t be shy in asking your surgeon about how the information you’ve been given has been prepared. Helping patients access clear information At EIDO, all of our leaflets are written by specialists, reviewed by other clinicians and edited by experts in plain English. They are regularly updated and, because they are stored online, updates can be made almost immediately. We also have accreditation from the Patient Information Forum and work with the Patients Association to ensure they are accessible. We offer large and giant print versions, screen readers, ‘Easy Reads’ and a number of translations. Whether the leaflet you see is an EIDO one or not, it should contain relevant information relating to BRAN. This is vital in terms of patient safety. How can someone be expected to make a decision on something so important without knowing all the facts? Risks and benefits are subjective Arguably, the benefits will be of most interest to patients. There is a problem somewhere in your body and you need it to be fixed. But what about the risks? You need to think about how the operation will affect your life in the future. You need to measure the risks against the benefits. If you are a singer, for example, you may not want to risk an operation on your thyroid that could change your voice. Using the same analogy, if you’d like to protect your voice, are there any alternatives that would be preferable specifically to you? What if you did nothing, or waited for a few months, or even years? All of this information should be supplied by the health professional who is advising you to have the surgery. The pre-written information will go into general details, but this alone is not enough. It needs to be a two-way conversation with the opportunity for both of you to ask and answer questions. You can ask for a copy of any notes made about your treatment options, so you can refer back to that conversation. Some people find it helps to talk it through with a friend or loved one. You will have time before the actual procedure to digest this information before signing the consent form. Read the information You should be given information to take home (or it may be emailed to you). I cannot stress enough how important it is that you read this carefully, make notes if you need to, and think about questions you might want to ask your surgeon. The reason for this is twofold. The first, most obvious one, is that you need to know how to prepare for the procedure, what to expect afterwards, and how to take care of yourself in the following weeks. The second reason takes us back to those pesky terms and conditions… Legal implications When you sign the consent form, you are effectively saying you have read and you understand the BRANs for your procedure. This means that if something goes wrong and it was not mentioned or clearly explained to you, you are in a good position to make a claim against the hospital. It also means that if the risk was in the document, you will have a weaker claim. While it is hard to prove that someone has actually read a leaflet, and your signature is not the only consideration, signed consent forms have been used in such cases to dismiss claims made by patients. These documents exist to protect both the patient and the healthcare provider. Litigation against health professionals and providers has grown in recent years, demonstrating an increased understanding by patients of the care we should expect to receive. We are not merely recipients of care; we should also be involved in the direction it takes. The knock-on effect of this growing number of informed patients has resulted in better information. Many patients still choose not to engage fully, and some will even ask their surgeon to make the decision for them (although they will still need to sign a consent form). This is also perfectly acceptable, if that is their preference. The important thing is that they have been offered the information and have been given the opportunity to ask questions, digest the information and then make an informed decision. Julie Smith, Content Director, EIDO Healthcare.