Hi everyone,
Hoping for some reassurance/advice for the NHS logistical pickle I’m finding myself in.
Me and my partner moved to mid Wales last November, and in January I found a lump in my breast. Because I was still working in Hertfordshire (where we’d moved from) and was still registered with a GP there I ended up getting my breast cancer diagnosis there at the start of Feb. They offered me an operation date (18th March) when they gave me my diagnosis which I decided to take to avoid any delays in the process and with the intention of transferring my care closer to home after the operation.
My new local GP referred me to a hospital about an hour and a half away from me in North Wales, despite there being one much closer to us, I was told I wasn’t referred there as don’t have a breast clinic.
I healed well from surgery (WLE & ANC) but my histopathology results took three weeks to come back (clear margins, 3 positive lymph nodes). As I’d known that the disease had spread to my lymph nodes since before surgery I knew that the treatment would involve chemo next. I contacted the Welsh hospital where I had been referred, who I had not heard anything from, after getting my results, and they told me that they would discuss my case the following Tuesday. I contacted them again on the Wednesday after that and was told that the oncologist was on holiday and that they would discuss me the following week (today).
When I rang them this morning I was told that they were now referring me to oncology at the closer hospital after all. I spoke to the oncology secretary there today who told me their oncologist in on holiday this week and won’t be able to look at my case until next week and probably won’t be able to see me until the week after that. She also said that there was a chance that they couldn’t treat me at that hospital and would need to refer me to one further South which is much further away from me than the original hospital in North Wales. Throughout this process I have not received any single piece of communication from any care professional in Wales - every conversation I’ve had has been because I’ve called and chased it. I know how overstretched the NHS is, especially in more rural areas, but I’m absolutely exhausted at having to be seemingly the only one advocating for myself.
So right now, I’m five weeks post-op, looking like I won’t even get to speak to an oncologist for another two weeks and knowing that my prognosis is getting worse and worse with every new delay. I had been doing a lot better mentally since surgery but now I’m having panic attacks again and feeling utterly helpless.
Thanks for reading, apologies for the length of the post! X
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Just wanted to say how sorry I am that you’re facing these delays. I also had the misery of being diagnosed and initially treated within the Welsh NHS, and it was a tough experience. I’m 2 years on now and still dealing with the trauma caused by being left adrift with a life threatening illness. It was not how I imagined cancer treatment would go!
One of the problems with the Welsh system is there aren’t any targets beyond the 2 week wait for diagnosis. After that, they can take as long as they’d like to start you on treatment. At least in England they’re encouraged to keep people moving through the system once a decision to treat has been made.
If you don’t have access to a good BCN I highly recommend calling the Breast Cancer Now nurses. They helped me so much through that time, answering my questions, providing reassurance and just generally being amazingly supportive.
I had to wait 3 months after surgery to begin chemo and I moved my care to a hospital in England to get it started in the end. Hopefully you won’t have to do anything as drastic as that, but sometimes you just have to advocate for yourself - sadly no-one cares more about your life than you. It’s easy to fall between the cracks and it seems like no-one will notice unless you keep alerting them that you’re there 
Hi Briallen,
Thanks so much for your reply.
I’m so sorry for what you went through, that sounds absolutely awful. Hope you’re managing to put things back together for yourself two years on.
I spoke to one of the Breast Cancer Now nurses yesterday and to a Macmillan nurse today, they were so kind and helpful but there’s obviously nothing they can practically do to get things moving. For some reason I’d been reluctant to reach out for help until this week but that’s definitely gone out the window now!
It’s so demoralising isn’t it? I feel like so much of my energy has been taken up with just getting my head around the diagnosis and getting myself through tests and surgery and now having to spend my days trying to convince hospitals to treat me has completely wiped out any resilience I’d built up. I am doing my best to be the squeakiest wheel though.
X 
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I know complaining and generally advocating for myself isn’t something I’m very comfortable with, and it helped me to ask ‘if this was my child or a loved one, would I be more comfortable demanding they got the care they need?’ Sometimes we have to extend that same duty of care to ourselves, even if we’re at our lowest ebb and really shouldn’t have to.
Relocating is stressful enough without cancer in the mix, so I hope you are at least enjoying your new home and feeling comfortable and settled. Wales is a wonderful place to live, even if the NHS can be slow and clunky compared to the system in England
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This really doesn’t sound acceptable.
Under NHS Wales you - the patient have a right to select a hospital of your choice to be treated under (same under NHS England). If you dont feel you are getting the right response I would consider some of the following possible actions;
- write to the Chief Executive of the hospital you are currently under and explicitly state the “National Optimal Cancer Pathways” part of the “National Cancer Improvement Plan for NHS Wales 2023-2026” -by mentioning this in full it should get their attention and realise you know what you are talking about. each Chief Executive has signed up to this. You - the patient should be treated against these targets and by what you are describing this isn’t happening.
- For good measure copy in your local MP.
- If you don’t get a good enough response I would inform them that you will elect to move to the care of an NHS hospital with better response times - that’s your right under NHS Wales.
Don’t feel “bad” or “shy” about advocating for this . Firstly, it’s your health & life AND it’s your right under the NHS and indeed their obligation to meet these targets!
If you struggle to write letters in strong enough terms use AI to write one for you and to look up the above links!
Wishing you the v best
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Thanks so much for you reply. I wish I’d have known this useful information at the start of this mess!
I actually ended up getting in touch with patient services for the hospital trust of the latest referral (as advised by a great Macmillan nurse) and they’ve been brilliant actually. They’ve pulled a lot of string it seems and managed to confirm that I will be able to be treated at that hospital and that I’ll get the next available appointment when the oncologist is back next week. It’s all still less than ideal but I’m hopeful that I’ll have some answers soon.
Thanks again for the reply. Xx
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