I’ve been rageful for so long and it’s exhausting. It’s time for me to get even. I can’t turn back the clock. I can change nothing about the delays in getting my cancer diagnosed. But I can pass on the lessons of my experience, and I find some solace in that, enough to soothe my impotent rage.
I believe delays and lack of coordination of medical intervention led to the diagnosis of my cancer at a stage when it had become incurable (though for the time being at least, it is treatable). Late last year, I described at length my experience to my local MP Warinder Juss asking him to ensure any lessons learned would be incorporated into whatever reforms the Secretary of State Wes Streeting is proposing. I made it clear that I didn’t wish to pursue a formal complaint or take a litigious route. I told him: “I don’t want what time I have taken up in this way. But if my experience is of use in shaping the future of cancer care, I can take some comfort.”
Questions
Just before Christmas I received a reply from Mr Juss’s office (which I publish here) stating that my ‘long story’ had been logged with the Black Country Integrated Care Board ‘for information purposes.’ I’m left wondering whether the questions I raised will ever be answered. Will those who run our NHS ever learn the lessons from my experience?
Mr Juss has, of course, discharged his responsibility to me as one of his constituent’s. Job done a far as he’s concerned. But I’m left underwhelmed by the response. In a way, I’m grateful he didn’t waste words on faux empathy. But I want more than a commitment to log my experience ‘for information purposes’.
I have decided to share the questions that remain for me about how my diagnosis was managed in the hope that they might empower my readers to be determined, persistent and utterly single-minded in pursuit of a diagnosis for troubling or life-altering symptoms. I put too much faith in people and systems. I was reasonable and patient in requesting my share of a rationed health service, even as I became weaker, more distressed and struggling for every breath. I suspect more uncompromising self-advocacy of my needs might have secured the attention I needed.
The systems that govern our health delivery failed me. But so too did my niceness.
This is what happened to me…
Despite being declared cancer-free in January 2024 – for a cancer that had been diagnosed back in 2018 – I presented with troubling symptoms to my GP in February. Given my history of cancer, she agreed we should be aggressive in pursuit of a diagnosis. In the space of a few months, I went from being a lively 65-year-old running my own business, to being bedridden, in need of care and struggling for every breath. I could get no answers despite four GP consultations, two visits to A&E, two chest X-rays, three blood tests, a home visit from a respiratory team and a private health consultation with a cardiologist. A chance meeting with the consultant who had previously cared for me eventually revealed that my airways were 70 per cent blocked by an aggressive cancer – and admitted me for emergency surgery that saved my life.
These are my questions:
- Should patients who have already had cancer demand faster tracking to diagnosis given the greater likelihood of their cancer returning? At the very least, shouldn’t their prior experience of cancer warrant earlier access to scans?
- Why did the radiology department decide against pursuing whatever was showing up on my final CT scan in December 2023? Given my history, shouldn’t they have been more cautious? Why was my discharge from care not delayed if something was showing up on the scan? Why was I told my final scan was clear if this was not strictly the case? (I learned much later that something had shown up on my final scan).
- Why was the cause of the breathlessness – which showed up on the x-ray – not acted upon the first time I was x-rayed at A&E in April 2024? The evidence was clear to see, so why wasn’t it treated?
- Why was I not offered relief for my breathlessness by any of the medical staff I saw despite the (obvious) distress this was causing me?
- Why was the diagnosis of my condition not coordinated? I saw doctors who specialised in different areas but who appeared not to work together in any meaningful way. What coordination existed came in the form of my increasingly desperate requests for treatment from whoever would listen to me.
As for the lessons I have learned? It is to become a more active advocate for your health:
Don’t be afraid to ask questions, trust what you experience as changes in your body and don’t let a medical expert – however well-trained – dismiss or invalidate your experience;
If you don’t feel strong enough to advocate for your own needs, recruit some support – a friend or relative, someone who believes you, who trusts in your experience and who will be tenacious on your behalf.
Hi Mel.
Your story resonates with me. I’m interested to know what Hospital you used.
The Royal Wolverhampton Hospital formerly NewCross have really gone down the pits in patient care. My husband died because of them.
They admitted responsibility to both myself and my daughter but as soon as lawyers got involved they close ranks, lose paperwork and just play the waiting game rather than reply to any communication. 3 year rule. It’s heartbreaking.
My own recent spell as an inpatient left me traumatised to the extent I will never go there again. I will travel to a different city rather than be treated by them. The tales I can tell are scary beyond belief. I’m currently trying to write a book about it but that in itself is traumatising as I’m having to re-live it all. I really hope and pray you get answers that will bring you peace but in all likelihood you won’t. Not from them. Perhaps as a mental healing process you too could consider writing your story in detail. It doesn’t have to be for anyone else to see unless you want that but it may help you make sense of it all. Who knows, it may eventually help someone else too.
I am so sorry to hear of your experiences of the Royal Wolverhampton NHS Hospital Trust (I still call it by its old nane, New Cross). It must have been so hard to have lost your husband – and not to have had justice must have made matters even more painful. And your recent traumatising experience must have made you lose trust and faith in our health service. I have had a different experience of New Cross. The first time I was diagnosed with cancer, I experienced exemplary care. But delays in the second diagnosis have motivated me to press health leaders – and my local MP – to see what lessons might be learned. My issue is less with individual doctors and nurses, more with systemic failures, the lack of coordination between doctors and medical departments. I didn’t lack for attention either. I have written a full and detailed account for my MP which he says is now logged for ‘information purposes’. My hope is now to share my experience and to raise awareness of the need to become a confident and assertive advocate for ones own health needs. Support from you and others means a great deal to me. I don’t expect to get any satisfactory answers for my own case. But if my sharing my experience empowers another, that is probably as much as I can hope for. Many thanks again for your support- and I hope your future health care experiences are more positive.