Thanks everyone for sharing your experiences. It was very helpful to hear. All the best for your treatment Jaybro charlotte3112 grannyp.
Here's my round up so far:
From speaking to another friend who's mum has breast cancer it seems like what you receive from private care is very dependant on the hospital and where it is. I think private in London had not been disrupted with so much with Covid but it has been outside. I went to the The Royal Marlsden for a second opinion and everything runs like clockwork there, I spoke to a wonderful empathetic surgeon who referred me on to genetics. It was easy to get through to the BC nurse and speak to her.
I had my lumpectomy and will be getting the rest of my treatment on the NHS and all it went very well, I had a lovely medical team who I trusted with all the choices they made for me. My scans were all done quickly also the surgery.
Criticism is more from an organisation point of view. The hospital was not very covid-secure, the security let someone who had a covid test in to use the toilet when I was there. There was always some problem with information/booking systems, appointments not showing up on the systems so having to wait hours for every appointment or results. They didn't give me much info/explain what scans I was getting, just asked me to turn up. Even on the day of my op there was waiting and confusion, I had to tell them I needed a wire guidance via ultrasound because no-one had told the ward. There was no easy way of getting hold of the BC nurse, and I never meet the surgeon either (apart from on the operating table!). I had concerns about fertility and hereditary risks and was not referred on. I understand it was because with the particular hospital I didn't fit the specific criteria to be referred but I feel they should have at least advised me. In the end my GP referred me to the fertility clinic who have booked me an urgent appointment and I got genetic testing at The Royal Marsden - I fit their criteria for testing as they test everyone under 40.
I had my initial consultations and surgery done privately, without insurance, because at the time I felt I was more likely to get my mental health needs met than under the NHS. I was kept well-informed, I chose not to ask many questions and I was offered different options (which got removed as my diagnosis kept changing). I was very pleased with the speed, the way they accommodated my ‘special’ needs (eg I was allowed home the same day after a full mastectomy and axillary clearance). My only criticism was that I was never assigned a breast care nurse, rather a team of ever-changing part-time nurses, and I felt they were very tactless about the temporary prosthesis (softy) I had to ask for!
I saw the oncology consultant privately too and he persuaded me to move over to the NHS under his team because the hospital was a regional centre of excellence, radiotherapy would still be done using NHS equipment and the lack of insurance meant that, if things went wrong, the bills would mount up. I’ve only regretted moving to the NHS because of clinic waiting times. Everything else has been beyond criticism. Plus, he was right - I got neutropoenia ‘of unknown cause’, fever, then sepsis, so I reckon I’d have used up all my pension and life savings, and maybe my husband’s too by the end of treatment which is still going on 2 years later.
If you want some advice: you’re in the NHS system now and satisfied with it. Stay and keep the momentum going. My transition from private to NHS was slow and my first chemo was on a Christmas Eve so they could get me into the 90-day ‘deadline’ recommended by NICE. That was a LONG wait and I wouldn’t recommend it to anyone. If you go private, you may lose your place and then the delays may drag on and on till you are fitted back in. There’s no medical risk necessarily but psychologically, it’s not worth it for a principle.
All the best, whatever you decide x
Sorry to see you’re here after your diagnosis of BC. I was diagnosed privately (due to NHS false negative) however my consultant/surgeon works across both our local NHS hospital and private hospital, so I chose to have my actual lumpectomy and Axillary clearance done under the NHS with him because of the specialist team around him and it’s a Teaching hospital. I’ve had great care ‘post diagnosis’ with the NHS and tbh I’ve realised private or NHS there’s still lots of waiting between scans and treatments that makes your mind go into overdrive. Once you’re in the system you’ll find the positives/negatives for both, for instance the BC nurse at private hospital was amazing and ‘on the ball’ however I've no named BC nurses at my NHS so it’s ‘hit or miss’ on if I get a nice one or one that really needs to consider a career change ;). But fortunately I’ve learnt to question everything regardless of who I’m dealing with, I only see my consultant at appointments as you can ask for this as part of your care, at least until I see my oncologist.
Ive just had second surgery this week due to margins not being clear but also had PET-CT scan and pelvis x-ray so once you’re in the system things move quickly. Always make a list of what you believe will make you feel confident in your care I.e scans etc.
Good luck with what you decide take care 💕xx
Sorry that you find yourself here. I am in the same situation as yourself but don’t yet have a surgery date due to having to have a CT scan and my surgeon then being on two weeks’ annual leave. I spoke to my medical insurance company the other day. They were incredibly helpful but advised that in some areas of the country there is still little private medical work taking place due to the NHS not having ‘given back’ the hospitals after taking them over due to Covid. She also advised that over the summer she has dealt with several cancer patients who have withdrawn their claims, finding the NHS route quicker at the moment. My local private hospital is up and running again but my surgeon’s private secretary has advised me that there is still a reduced capacity. I have an appointment with my surgeon in a couple of days and need to see if he can obtain a theatre slot at a time when he is free. So all still up in the air for me.
Hopefully you will find that your private hospitals are operating normally. Good luck with your decision and your treatment
I’m 35 and was diagnosed with IDC 2 weeks ago. I have been with the NHS so far. In general I feel I have received good care. The communication was a bit lacking as they didn’t explain next steps after my diagnosis so I was left confused as to what was happing next. It was hard to get through to anyone if I tried to phone the BC nurse. But I am really impressed how quickly they have moved for me though, my surgery is in 2 weeks and my MRI was 2 days after diagnosis. I have private healthcare insurance with Bupa and it would be interesting to hear any advice on using it. Part of my also thinks if I can get the lumpectomy on private in the same or sooner timeframe, let them pay for it rather than the NHS.