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The new NHS online hospital launches in 2027, but what is it and how will it work? Join the Patients Association's free online event on 11th May at 2pm to learn more. NHS Online will give patients with certain conditions the option of having their hospital appointment online. Together we’ll look at what an online NHS hospital means to people, and will discuss the benefits, opportunities, risks, and concerns. Join us if you are a patient, healthcare professional, policy-maker, carer, charity worker, or simply anyone who wants to learn more about this new initiative. Speakers Chair: Rachel Power - Chief Executive, the Patients Association Jonny Brown - Programme Director, NHS England Jacob Lant - Chief Executive, National Voices Patient representative Register

There are many reasons why missed appointments happen, and some of the causes can be complex. ‘Missingness’ can have poor outcomes for patients and research shows that those who experience the greatest health inequalities are at highest risk. Join this Patients Association webinar looking at missed appointments, or ‘missingness’. Together, we’ll explore the reasons why patients might miss their health appointments, from practical barriers to emotional and systemic factors that can make healthcare feel out of reach. We’ll also discuss what can be done to ensure patients feel more confident in attending those appointments, and how services can make it easier for people to communicate when they can’t. This webinar will highlight perspectives that patients, and healthcare professionals, may not have considered, helping us all to think creatively about how to make visiting healthcare services as accessible as possible. Speakers: The session will be chaired be Sarah Tilsed, Head of Partnerships and Involvement, who will be joined by: Dr Susan Langridge, Deep End GP Andrea Williamson, GP and Professor of General Practice, lead for the missingness in healthcare project Caroline Norman, HARP (health access for refugees) Project Manager at Refugee Council. Register

After a recent visit to her local hospital for a routine blood test, Rita Gil reflects on her experience and the patient safety concerns she has around data privacy. I recently needed to go for some general blood tests to check on my health concerns. The process was relatively simple and smooth; however, it did uncover some flaws in patient safety regarding data privacy that go far beyond the seemingly harmless waiting room, and could put patients unknowingly at risk of fraud and scams. After my GP had approved the blood tests, I was asked to book a slot using the Swiftqueue website, which is linked to my local hospital. To book a blood test, the steps are simple: selection of date/time and login to my NHS account that has my name, age and other details. On the 30 September, I went to the hospital and the signs were showing the phlebotomy clinic had moved from where it had previously been located. Around the corner, I was greeted with a large room that had been split—to the left, they were drawing blood with what seemed to be temporary bi-fold walls, and to the right, there was a seating area with the check-in tablet. As I sat waiting for my name to be called (which previously would have been a name on a screen), I became very aware of how many vulnerable people were around me. As each name was called, I was able to see who the person was standing up and going in for their blood test. As each person went for their bloods, I could hear the nurse asking the person to confirm their full name, date of birth and first line of their address. Of course, I understand that they need to ensure who they are seeing matches the details on their systems. However, as someone in the waiting room able to hear all this information, and working in tech as my profession, where data protection is key, I couldn’t help but think how exposed the patients were. I could now not only be able to identify the person by their ‘looks’ and name, but I could also know their full name, date of birth and first line of their address (which, knowing most people are local, wouldn’t be too difficult to figure out the full address). Exposing all this information to an unknown audience makes the patient a target. In a world where cybersecurity and fraud are real problems, protecting private personal information is imperative and mandatory by law. It’s easy to forget how a simple overheard conversation might affect patients later with fraud scams and other threats. In a room where the same process occurs each day, the pattern of information that is obtainable is easily identifiable and exposes a risk. Now, I can only assume most people in the waiting room are there and not thinking too deeply about all of this—the truth is we don't know who is in a waiting room, and scammers and fraudsters are becoming incrementally more clever. Personal information—as complete as the one described above—should not be this accessible to an unknown audience. Regardless of whether the new phlebotomy clinic location was a temporary set-up, protecting patient safety goes beyond safe care given by professionals. Personal data protection should be embedded into the planning of the hospital care set-up, as the most vulnerable people are known to be found in these spaces and fraudsters are actively looking for new and clever opportunities to prey on them. It would be utopian to believe that we are surrounded by people with good intentions only; the reality is that data protection exists due to a real threat from fraudsters, and everyone is at risk. Making private information accessible in communities can cause harm to patients outside of the seemingly safe and harmless waiting room.

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