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We hear time and time again on the hub about the lack of joined up care and communication within and across organisations. Patients and their families and carers not knowing who to contact to chase up a referral, having to travel miles for appointments, missing appointments because the letter didn’t arrive on time, or having to repeat the patient’s history and medications to every new healthcare professional they see because the notes haven’t been shared or clinicians "don’t have time to read them all". These issues are widespread and urgently need to be addressed if we are to prevent people falling through the gaps and suffering worse health outcomes. In this blog, Sue* shares her and her husband's experiences of trying to coordinate the healthcare system and highlights the challenges and frustrations they continuously face. Difficulties getting a diagnosis My husband Neil* has a very rare chronic condition that means unfortunately he is not managed in the area we live at as it’s a regional centre some miles away. We live in North Yorkshire, one of the largest geographical areas in the country, and we feed into various health economies. It took over 4 years and three different healthcare organisations before Neil got his diagnosis. Every time we see someone new we have to go through all of Neil’s medical history again, and then they often say that it’s not their area of expertise because they only deal directly with one area or speciality; they don't think of the patient as a whole. Whilst waiting to get the diagnosis, Neil had a heart attack so he was initially treated more locally to us but it was still over 40 miles away from where we live. When we called an ambulance for a second time he was taken to a different hospital from the first one he was treated in. So he was taken to two different geographical areas not even under the same trust. To add to this, Neil is also under lots of different specialities, i.e. rheumatology, general surgery, dermatology, respiratory and lipids. So he is being treated and has appointments in numerous places. Coordinating appointments and results With all these different specialties, even if they are within the same regional centre, none of the information is joined up or accessible, including blood results from the GP. We find that things are incorrect all the time and we spend a lot of time trying to coordinate Neil’s care and following up on test results, appointments, etc. Neil receives appointments in various ways—emails, phone calls, texts, letters, messages left on his answer phone. You might get a phone call followed by a letter, or you could get a message to say ignore the letter. You may miss a call but you don’t know which department to ring back because it usually comes up as an unknown number. Recently, Neil received a text message which said he was on a waiting list, but it didn’t say what it was for or what specialist department it was from. It said in the text that if you no longer wanted the appointment and wanted to cancel it, to follow a link, but we had no idea what the appointment was referring to or where it came from! As a patient you want to have some control over your health and be able to see all blood test results, scan results and letters from the hospitals. For example, it would be so much easier to look at Neil’s medications and patient letters if they were all in one place but you can't look at the medical records to see what's been said. The only way we can get it is waiting for the letter to be seen by the GP and then, eventually, added on to their system, but it's not always quick because again it's a different geographical area and systems that are disconnected. As a patient with a new disorder, you’re not familiar with the system. Neil was referred to other specialities from rheumatology. Unfortunately, the treatment plan. including tests or length of wait for appointments, isn’t shared directly with us. We rely on my note taking to ensure everything is completed and followed up. Often we end up going to an appointment without the tests Neil needs to have done due to the length of wait for the test, or the test being triaged and cancelled but this not communicated either to us or the referring doctor. The waiting for test results at the moment are long for some of these tests but if it was in your capacity to be able to seek or understand when you might possibly get them, you wouldn't then end up wasting an appointment. You would wait until you've had the results back or know when it might be. It could take us over two hours travelling time for a wasted appointment. We don’t want to waste our time and the time of others. Lack of communication Neil has radiotherapy coming up shortly and we've had no communications regarding it. I ended up making a phone call to inquire and was given a date. But we’ve still not received a phone call, no email, no letter or anything about it, even though they've got the date and time in their books. You can’t make plans, for example if you are trying to go away for the summer. If you’re waiting for a treatment, which on the NHS may take a while, you want to know when to expect the appointment. It’s a lot easier to manage your condition or diagnosis if you have the knowledge of when something's going to happen and you can manage your own expectations. Navigating the various healthcare apps To try and help with all of this we’ve been really keen to try and find a way to get all of Neil’s medical information, from many different organisations, together in one place and to rationalise appointments. We signed up to the NHS app which then put us on to System Online and then Neil was directed to AirMid UK. We've also found the Patients Know Best app which has been set up and says that you can access all your records but it seems to be only if an organisation has signed up to it. So we’ve got four apps to supposedly access the information but not one of them has all of Neil's information. We are actively looking for an online place which has all the information but none of it ties up. None of the apps give you the same information. We’ve asked our GP but he couldn’t help and hadn’t heard of some of the apps we’d found. A system that isn't working These are just a few examples of what we’re dealing with. I’m lucky as I have some medical knowledge so I know when we're missing something or waiting for something and I will chase up, but not everyone will have this knowledge. If it’s an older patient, or someone who hasn’t got family to support them, then they are on their own to navigate a very complex system. A system that isn't working. *The names in this blog have been changed to ensure anonymity. Are you a patient, relative or carer frustrated with navigating the healthcare system? Or is your GP practice or Trust doing something innovative to make it easier for patients? We would love to hear your stories. Please add to our community forum (you will need to register with the hub, it's free and easy to sign up) or email us at [email protected]. Related reading The challenges of navigating the healthcare system: David's story The challenges of navigating the healthcare system: Margaret's story Navigating the healthcare system as a university student: My personal experience Lost in the system? NHS referrals "I love the NHS, BUT..." Preventing needless harms caused by poor communication in the NHS (DEMOS, November 2023) Robust collaborative practice must become the bedrock of modern healthcare Robbie: A homeless patient’s struggles with the system Digital-only prescription requests: An elderly woman sent round the houses Lost in the system: the need for better admin Digital-only prescription requests: An elderly woman sent round the houses

From coughs and sneezes to mental health apps, these tips from the MHRA will help you stay safe during the festive season and beyond.

The benefits of giving patients a central role in developing healthcare solutions have been widely demonstrated, but meaningful engagement is still far too rare, particularly in digital healthcare. In this blog for World Patient Safety Day 2023, Clive Flashman, Chief Digital Officer at Patient Safety Learning, looks at the benefits and barriers to engaging patients in developing digital healthcare solutions. He looks at why healthcare innovators struggle to include patients at an early stage of development and suggests some ways that NHS England could help facilitate coproduction through its existing patient engagement and innovation structures. If you saw a news item announcing that you could now book online to have a face-to-face meeting with a person from your bank, or to visit a kitchen showroom, you’d find it bizarre. You’d be asking, “Why is this newsworthy?” Yet week after week I see headlines trumpeting how wonderful it is that patients can now make an online booking for an outpatient appointment, or something similar. These new technologies have misleading names such as ‘patient engagement platform’[1] when actually they are simply an online appointments application. Why do organisations use terminology that is so misleading? It’s a problem because many patients really do want to be engaged in their care, yet find the whole system opaque and generally impenetrable. Headlines like this make the promise that patients can have more involvement in their own care, then fail to deliver on that promise. The NHS has even got a way of scoring how involved patients are in their own care, called the Patient Activation Measure (PAM)[2]. It is the top rung of a ladder of patient involvement that starts with patient engagement, then moves up to patient empowerment. Sadly, the PAM seems to be almost invisible when one looks at NHS plans and progress reports—perhaps this is illustrative of the fact that so few parts of the NHS really manage to involve their patients adequately. Many papers have been written on the benefits of involving patients in the own care, generally pointing to the better health outcomes, better care experiences and reduced use of healthcare resources of engaged patients (Hibbard and Greene, 2013)[3]. Patient engagement in digital health attracts no fewer benefits and potentially has even more. ‘Co-design’ and ‘co-production’ are terms used very heavily these days to explain how the end users of a solution ought to be involved in its early design, development, prototyping and pre-launch testing. Despite NICE mandating this through its Evidence Standards Framework[4], it still happens far less than it should. Why is this? Digital health innovators are in a catch-22 situation. They want to pilot their solution to gain access to patients and show evidence of impact, but often they are not given that opportunity unless patients have already been involved in the genesis of the solution. That is not always possible as these innovators (many of whom are originally from outside of the health and care domain) have no knowledge about how to find and engage with patients or end users. In my opinion, one of the key things that NHS England ought to be doing via Health Innovation Networks (HINs, formerly called AHSNs [5]), is helping digital health innovators access appropriate patients who can help them to design and develop their solutions. By working in a collaborative way, these patients are not only going to be potentially supporting their own wellness journey, but that of thousands of other people too. The patients involved should represent multiple sectors of the population and embody the principles of the Core20PLUS5[6] programme in terms of reducing healthcare inequalities and improving access to digital therapeutics. NHS organisations have recently been encouraged to recruit Patient Safety Partners (PSPs)[7]. This is a new and evolving role developed by NHS England to help improve patient safety across the NHS as part of the new Patient Safety Incident Response Framework (PSIRF). The NHS Patient Safety Strategy includes the ambition for all safety-related clinical governance committees (or equivalents) in NHS organisations to include two PSPs by June 2022, and for them to have received the required training by June 2023. Anecdotally, this seems to be running around a year behind schedule. From a review of the job description, the PSP appears to be a policy and governance oversight role. PSPs might have been a much more valuable addition to the NHS if they had been asked to become involved in the creation of safer tools and therapeutic services that patients would eventually use. An opportunity missed, but NHS trusts could change this themselves in the future if they wished to. From my recent interactions with the NHS as a patient and carer, I can honestly say that patients and their needs are not at the centre of the services provided. It is really centred around staff–their availability, skills and capabilities, and their ability to effectively communicate with each other and their patients. We are a long way from value-based care,[8] in which health and care providers are incentivised to give their patients the best outcomes possible. Until the financial levers of the NHS are aligned with the interests of patients, and the huge benefits of digital solutions are factored into that, patient care in the NHS will sadly remain sub-optimal. References 1 Gateshead Health NHS launches innovative digital patient engagement service. Gateshead Health NHS Foundation Trust website, 29 August 2023 2 Patient-centred intelligence: A guide to patient activation. The Strategy Unit, 18 November 2019 3 Hibbard J, Greene J. What the evidence shows about patient activation: better health outcomes and care experiences; fewer data on costs. Health Aff (Millwood). 2013;32(2):207-214 4 Evidence standards framework (ESF) for digital health technologies. National Institute for Health and Care Excellence, 9 August 2022 5 NHS and Government back AHSNs to continue to lead innovation, under new name. The AHSN Network, 26 May 2023 6 Core20PLUS5 (adults) – an approach to reducing healthcare inequalities. NHS England, 10 November 2022 7 Appendix 5: Patient safety partner role description. NHS England, 24 June 2021 8 Hurst L, Mahtani K, Pluddemann A et al. Defining value-based healthcare in the NHS: CEBM report. Centre for Evidence Based Medicine, 2019

NHS hospital staff spend countless hours capturing data in electronic prescribing and medicines administration systems. Yet that data remains difficult to access and use to support patient care. This is a tremendous opportunity to improve patient safety, drive efficiencies and save time for frontline staff. In this blog, Kenny Fraser, CEO of Triscribe, explains why we need to deliver quick, low-cost improvement using modern, open source software tools and techniques. We don’t need schemes and standards or metrics and quality control. The most important thing is to build software for the needs and priorities of frontline pharmacists, doctors and nurses. A study in 2018 found that 237 million medication errors occur each year in the NHS in England alone. Three quarters of these cause harm and there are 1,700–22,303 deaths from avoidable adverse drug reactions. Two things immediately strike me about these numbers: Medication safety is a huge issue. The breadth of the estimate suggests that data about the scale and impact of medication safety errors are incomplete and unreliable. I have not seen a similar published study since. My experience working with NHS hospitals since 2018 suggests slow progress. There are four reasons: The spaghetti medusa of data. Millions of staff hours spent to capture and store medicines data in a variety of legacy siloed hospital systems such as EPMA, pharmacy stock and EPR. The NHS employs 1.5 million people and at least the same number again work in social care. Yet there are almost no tools specifically built for either NHS or social care workers. Slow progress of clumsy digital initiatives that focus on the wrong thing, made worse by the fear of digital monsters. Lack of change and innovation. Lots of noise around schemes and gateways rather than actual solutions for real people. Layer the pandemic impact over these underlying issues and the position seems hopeless. It's not. “Data isn’t oil, it’s sand.” The tech industry has invested trillions of dollars and the time of millions of the world’s smartest experts. Much of this goes into solutions that capture and use epic quantities of data. Over the past 15 years, multiple standard, open source software tools and techniques have emerged that tackle exactly this kind of problem. Behind all the hype, hysteria and scaremongering, the current AI boom is just a manifestation of all this money and intellectual capital. It is outrageous that this is not used for the benefit of hard pressed frontline hospital staff. So what does this mean in practice? How can tools, like Triscribe, actually improve medication safety? Those 237 million errors include a lot of different things. Adverse drug reactions are just a small portion and the severe reactions are pretty rare. Using the existing data collected from a multiplicity of systems, we believe that more meaningful analysis is possible by: Reporting of adverse drug risks updated at least daily. Note: using a little AI, we can predict the risk of adverse drug reactions and give clinicians the information needed to stop at least some from happening. Much better than just reporting the incidents. Monitoring adherence key safety policies and guidelines. For example, VTE prophylaxis, allergy reviews and oxygen prescribing. Tracking and reporting late and omitted doses every day across all systems, including ward comparisons to identify learning and share better ways of working. Safe use indicators for specific medications; for example, early/ late administration of Parkinson’s medicines and opioid deprescribing. Reporting key compliance measures, including IV to oral switching for antibiotics, high dose prescribing of opioids and usage of methotrexate The possibilities are limitless. There is no shortage of data in the NHS. However, the ability to share that data between systems and organisations is something the health and care sector still lacks. It’s a solvable problem. Deliver quick, low-cost improvement using modern, open source software tools and techniques. We don’t need schemes and standards or metrics and quality control. The most important thing is to build software for the needs and priorities of frontline pharmacists, doctors and nurses. Keep learning and keep improving every day.

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This conference from the Westminster forum will examine the next steps for the use of patient records and data within the NHS and clinical research. The agenda also looks at the opportunities for improved patient engagement in their care, including through the NHS app which enables easily to access their own records. Speakers and other delegates will share experience, latest thinking on best practice, and views on the way forward for addressing key issues. Areas for discussion include: patient data use in healthcare delivery - the current landscape, and priorities for the future electronic health records - including their role in supporting integrated care systems clinical research - the next steps for utilising patient data, and developing best practice digital health - patient data collection, use and quality, and innovation priorities population health - achieving the potential of data collection to improve outcomes security - including transparency on patient data use public trust - digital health literacy and patient control of their own care plans the NHS app - its role in the future of patient-centred healthcare. Register