I was diagnosed with stage 3 breast cancer back in late August and require a double mastectomy and lymph node removal, however due to NHS backlogs the first slot for the operation in my area is Dec 7th. I had to have tests to check the rest of my body and those were slow to book too, I have complained and they promised to try and get an earlier date but to date nothing, they say still working on it. They may be able to get me another surgeon not mine but that would be end of Nov at the earliest
I am now suffering pain too. They know they are breaching all NHS deadlines but what else can I do?
I have contacted PALS this weekend and will write to complain to the hospital directly but it all takes time they say they will respond in 2 weeks
I am now thinking of going private but feel scared that private hospitals don’t have intensive care to the same degree as NHS
Any ideas?
I started this journey feeling positive and them telling me its treatable and treatment would be swift to this and knowing its spreading and now feeling so low and scared
I am so sad and angry after reading your message; you must be going through absolute psychological and emotional hell having to wait such an unacceptably long period of time for treatment after diagnosis. I can’t even imagine how it is affecting you to be honest, as this delay isn’t something I encountered and it was hard enough without a delay ! Frustration and desperation probably don’t even slightly cover the impact on you. Nobody should have to deal with this set of circumstances after the shock of a diagnosis, its scandalous covid or no covid backlog. I don’t know if you’ve taken advice anywhere else external to the hospital for example the advisors on here (I’ve added the link below with details).
I know you mentioned PALs, and they are the access point for the complaints procedure for your local hospital, and of course you have every right to make a complaint - but that doesn’t help you right now, does it, in dealing with your situation. Cancer research has an article about holding the nhs trust to account in various ways including contacting the CCG (clinical Commissioning Group), but yet again, as you rightly say it takes time whilst investigations are occuring and if the hospital are well aware of their failings already, and don’t have capacity, then…what is the way forward ?
I don’t really have much advice - other than to also try and explore with the hospital potential ways to get around this, which PALs should help with. They have mentioned possibly another consultant who is not your own consultant a little earlier, would you consider that ? - at this stage can you actually switch to a different hospital? It sounds to me like you need an advocate to keep pushing them to FIND an earlier appointment, and maybe the team at BCN might have some ideas on that.
I am hoping someone else comes along who has had a similar experience to you - well I don’t HOPE anybody has had a similar experience! but somebody who can has some understanding of any ways to resolve this.
A friend’s dad had a lung cancer operation delayed and delayed and ended up writing to his MP which got things moving. I appreciate some MP’s are better at assisting constituents but it might be worth a try?
What a horrible situation you face. You are entitled to ask for a referral to another hospital but, given the delays to date, I doubt it would resolve the delay in getting a surgery date. I wonder if you found the name of the chief executive and then directly contacted his personal secretary by phone, if that might bear results. A 3 month delay for Stage 3 BC is simply inexcusable.
I had my mastectomy and FAC done privately as I assumed it would happen faster. However, they do have access to all the required facilities and many of their clinical staff work within the NHS too. You MIGHT get your surgery done faster but it would depend on the consultant and his/her other commitments (that was my experience). Private hospitals liaise with their NHS ‘partners’ so, if an emergency were to arise, you would have all the resources available, just might end up back in your NHS ward! Unless you have insurance however, you would probably need to transfer back to the NHS for your adjuvant therapies, like chemo (hellishly expensive per treatment) and radiotherapy (few private hospitals have those facilities so you use NHS facilities but pay the private hospital provider for the privilege!). You definitely need health insurance for treatment!
In terms of the cancer, unless you have been told your cancer is triple negative or one of the aggressive forms of cancer, most cancer cells are remarkably sluggish so it’s unlikely your cancer is spreading unchecked. This is a very common fear most of us experience but it’s unfounded. I have Stage 4 Triple Negative which coincided with lockdown and diagnosis was delayed by over a year. However, my oncologist said that made little difference - the treatment would still be effective against everything. I don’t know if that helps?
On a further note, you are angry and frightened. These are both perfectly understandable and justified emotions you should allow yourself to feel. They are not negative or weak, they don’t change the fact that you have had a positive outlook. Tears, fury, frustration don’t undermine you. They are normal feelings and should be seen to have as much validity as ‘positivity’.
I hope this is resolved quickly for you. Wishing you all the best,
That is a really rubbish situation to be in…I am really sorry….when I needed an nhs dentist in covid ( I couldn’t start zolendronic acid infusions until I had had a dental check) , my oncologist was unable to help….I put in a complaint to NHS England and within a week I was contacted and referred on to a local nhs dentist ( who were basically told they had to take me on, I was later told) ……I also contacted my GP who took the same route…but I had already beat them to it……maybe worth a try? You can email them…. NHS England oversee much of the regional commissioning groups….so they have some sway….I hope you get sorted very very soon
Pearly 1960 so sorry to read how you are being treated by your trust. I have to say if it was me, I’d be phoning the national press and the local press and blowing the lid off this because it’s not acceptable in my opinion and I’d be making sure not just the press ran a story but that the government were held accountable too, but that’s just what I’d do. We’re here, please let us know how you get on Shi xx
please let us know how you get on 
