When Branwen first began to feel unwell following a minor operation in 2017, it wasn’t until 18 months later that she finally received a confirmed diagnosis of lung cancer. In sharing her story, she highlights serial inefficiencies and challenges, all stemming from a lack of joined-up care. It is stories like Branwen’s that demonstrate just how vital true person-centred integrated care is, and why the work of collaborative programmes like OneLondon, is so important.
“I was born in north Wales and am a teacher by profession. I worked in different schools across London, and was a head teacher for four years. I’ve always loved teaching – having contact with lots of different people, and making a real difference in the lives of families and children. Harking back to my childhood, I love being outdoors: walking on the cliffs, feeling the wind on my face, swimming in the sea and lakes (what’s now called wild, but used to be just going for a swim!).
“Three years’ ago, in June 2018, I was diagnosed with lung cancer. This confirmation had been a long time coming – 18 months to be precise – after a series of delays, missed diagnoses, and continual back and forth between different hospitals and healthcare specialists. Multiple inefficiencies stemming from a complete lack of joined-up care.
“I first began to feel unwell following a minor sinus operation in January 2017. It should have just been a day surgery – in, out, no problem – but I ended up being monitored overnight after my heart rate and breathing became tricky. I never really recovered after the operation, and I kept going to and from my GP, saying ‘I’m breathless’, ‘I’ve got a cough’, ‘I don’t feel well’. My GP ran all the checks and balances that she could, and concluded that my body was just reacting differently to the operation.
“Then in March that year I ended up in A&E and spent a couple of days in hospital with a possible diagnosis of heart issues. I was put on bisoprolol – a medicine used to treat high blood pressure and heart failure – with a view to having further investigations. This was around Easter and unfortunately, I missed the letter posted through my door confirming my appointment. Because I had not attended, I was taken off the list for the heart specialist.
“I decided to get myself checked out by a private specialist, and was fortunate to be financially able to do so. They confirmed my heart was healthy, but I was referred to a chest and lung specialist, and then a rheumatologist, who also worked in the NHS in south west London. Following two CT scans in January and March 2018, my consultant suspected a tumour. Unfortunately the hospital wasn’t able to bring me under their oncology department because I lived too far away to receive further treatment. So it was back to my GP to request a referral to my local hospital for lung cancer on the two-week pathway.
“Because there was no way for my information – including evidence of the CT scan – to be shared between the hospital with my GP in order to get the referral I needed (and avoid having a third CT scan at my local hospital), I had to arrange for my scan to be copied onto a disc, which I then walked over to my local hospital and dropped off at the oncology department. It was a lot of time, a lot of energy – all whilst I was still working, running a school of 450 kids, and living with an indefinite diagnosis of lung cancer.
“When I was finally able to see the oncologist at my local hospital, she suspected lung cancer although thought it would be a straightforward operation with no follow-up treatment needed. To make sure, she recommended I have a PET scan to produce a more detailed 3D image of my body. This referral should have only taken a week, but when I didn’t hear anything after a fortnight, I started to make phone calls to try and find out when my PET scan would happen. I kept calling and leaving messages, but was unable to speak to anyone, so I visited the hospital in person. The Patient Advice and Liaison Service (PALS) said my referral should have been sent to the specialist cancer hospital, but when I called them, they had no record whatsoever of the referral being made. As it tuned out, the faxed referral had never been received.
“In the end, I waited a whole month to have the PET scan. I’d gone through a whole half-term at school, knowing that I might have cancer, but nothing more than that. I was walking on the cliffs of Pembrokeshire that May Half Term when my oncologist called. I had a very aggressive cancer, and was ‘lit up like a Christmas tree’. 18 months on from when I’d first started to feel unwell.
Personal impact and long-term implications
“I have no idea how my partner and I kept body and soul together during this time. I’d gone from somebody working 70-hour weeks, cycling six miles each way to work, and enjoying a busy social life, to becoming more and more tired and unwell, and not understanding why.
“The repercussions of such a late diagnosis meant that my treatment was much more extreme. I underwent an eight-hour operation and three months of chemotherapy. There’s permanent damage to my body, and some things I’ll never recover from as a consequence of having half my lung taken out. At the age of 44 I had to get my head around the longer-term implications – I didn’t feel useful anymore. I’m fortunate that I was able to see a therapist twice a week – the waiting lists are so long, and whilst you can see someone once a month through Macmillan and other cancer support services, that’s not enough when you’re facing the possibility that you might die at this point, or this point.
How could joined-up information have made a difference?
“When I look back, I’d gone to my GP on multiple occasions with coughs, colds, and sore throats – more so than the ‘average’ person. Having read about other people’s experiences of lung cancer, which is notoriously difficult to diagnose, there are similar patterns.
“Following my reaction to the sinus operation back in January 2017, I do wonder whether, had the doctors had access to my GP records, they would have noted this pattern, and carried out further investigations at that point.
“Or whether my referral for a CT scan could have been quicker if I’d received an email or text, rather than a letter through the door. If referrals were sent electronically, rather than by fax machine, so I could have had a PET scan within a week rather than a month.
“If the clinicians I was speaking to over the course of the 18 months, had access to ‘all of me’ – holistic, up-to-date, shared information about my medical history, previous appointments, and investigations.
“For me, it would have been life changing.
“When you bring your car to a garage for an MOT, the mechanics know all about the history of your vehicle. They know about the light switch change, the last time your tyres were replaced. If we can treat cars as a whole, surely, we can do the same for people? For me, that means allowing trusted practitioners working within a pressurised health service that I have huge respect for, being able to access shared information to support faster, safer, more effective care for individuals.”
How can we ensure that Branwen’s experiences aren’t repeated?
Dr Sanjay Gautama is Clinical Informatics Lead for London, a Consultant Anaesthetist, Chief Clinical Information Officer, and Caldicott Guardian for Imperial College Healthcare Trust NHS. We asked him how the work of OneLondon is helping to ensure that others don’t have similar experiences to Branwen moving forwards.
“Branwen’s story highlights just how vital it is that we join-up information safely and securely to support people’s individual care. Her experience is unfortunately reflective of an inefficient health and care infrastructure, where people’s information is held in silos across different organisations, rather than being joined-up and shared to support a person’s journey through the system.
“Thankfully things are changing, and in London and across the country, we are moving towards a position of being able to securely flow patient information across organisational and geographical boundaries. Achieving this is a pre-requisite of creating meaningful Integrated Care Systems (ICSs) and improving care and outcomes for our patients and populations.
“Three years ago, places like London started to pave the way, where our five health and care partnerships and London Ambulance Service, agreed to work together to achieve this vision of joined-up care, in line with the expectations of Londoners.
“This means that local care teams are starting to see more relevant summary health and care information about a person that is held by organisations in any of the other geographies. This join-up of information is enabled by the London Care Record – a single shared record that aims to provide an accurate summary picture of a person’s health and care over time and across organisations.
“As of October 2021 increasing numbers of acute hospitals across all five of London’s ICS geographies are connected to the London Care Record. Primary care services, including GPs, are connected in four of the five ICSs, in addition to some mental health, community care, NHS 111 and social care services; with the fifth ICS now rolling the record out to its primary care services. The aim for OneLondon over the next two years is to connect all London health and care providers and to achieve interoperability across the London Care Record, which will mean more meaningful information sharing at the point of care. We are also starting to connect with other NHS regional shared care records outside of London, for example, with Milton Keynes University Hospital.
“As a region, London is still very much on a journey towards achieving true person-centred, integrated care. It is important that we bring our citizens and health and care professionals on this journey with us, ensuring that we are joining up information safely and securely, in a way that is legitimate, trustworthy, and aligns with public expectations. How will we know when we have been successful? When experiences like Branwen’s are not repeated. When all Londoners can receive an equitable level of care based on consistent, secure access to information at the point of care. We’re not there yet, but we’ll get there.”