Branwen first began to feel unwell in 2017, it wasn’t until 18 months later that she finally received a confirmed diagnosis of lung cancer.
We first heard Branwen’s powerful story in 2021. Her experience demonstrates why sharing information and joined up care are so important, and why the work of collaborative programmes like OneLondon is so vital.
To help mark our 5th anniversary we would like to share Branwen’s story with you again, along with an update from her where she talks about the continued importance of joined up care (2 May 2023).
“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.
“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.
“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). Therefore 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 turned 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’. Eighteen 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. 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.
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.”
An update from Branwen (April 2023)
“The last few years been tough (Covid and lung cancer not a great mix), but I’ve just had my 5 year scan and am cancer free 😊😊. I’m still living in West London, loving exploring in our motorhome and supporting Harlequins and Wales rugby teams and learning the new skills of African drumming and golf!
“I very much hope that the joined up thinking hoped for in 2021 has come to fruition despite the additional stress that Covid has brought to the system as a whole. Through my volunteer work with a range of cancer groups, it seems that there is still a level of frustration and confusion that patients face when attempting to organise appointments, scans etc in a logical manner both within trusts and more so between trusts.
“This experience only adds to the likelihood of anxiety and increased possibility of late diagnosis. I very much hope that consistency and effectiveness of communication remain to be a key priority.”