Hello all,
I was diagnosed last March and since then have had a catalogue of errors - I won’t go into it all as it’s very negative. The good bit of it was that the treatment I received seems to have worked 
and I am starting to feel physically better.
But - the big but - was that I had to chase up everything from the beginning to the end which left me in a very bad place so that in the end I received support from the psychology service. Every time I raised an issue it was brushed off and put back on me “oh it’s because you’re not sleeping” “it’s because of the steroids” “it’s because you are looking after your elderly mother.” And then was asked brightly “oh do you want to make a complaint?” So after the breast nurse specialist told me at an appointment (having asked how I was ) “if you don’t stop talking we’ll run out of time and you’re using emotive language and do you want to make a complaint” I thought ‘well yes I will then.’
Cue 14 pages later of the timeline of my treatment - miscommunications and plain bad practice later.
So then meetings with the matron of the unit, senior sister, breast nurse specialist nurse, breast care lead nurse, and oncologist. I have received a reply.
22 apologies (yes I counted) in six pages. But they have changed their practice and implemented changes - which I have seen. So I count this as a victory.
So my thought is - if you are unhappy with things do raise it. It hasn’t changed what happened to me but perhaps better treatment will be given to those who follow me. It was exhausting to do, mentally and physically but now, at the end, I do feel it was worth it.
I so feel for you and share some of your experience. Well done you for having the courage to stand up to them and make that complaint.
I have a friend who is doing the same in relation to a catalogue of disasters during her treatment for bowel cancer.
I haven’t finished treatment yet but am documenting my own journey so I can tell my hospital my experiences when I’m ready to. These include being shouted at by a staff nurse when I asked to change my chemo chair so I wasn’t sitting under a blinking light that would give me a migraine, not getting my chemo injection because the oncologist didn’t send off the prescription (so it was a week late in the end), having an admin person tell me that I should “consider yourself lucky” to have been offered Kadcyla because “it’s very expensive you know”, constantly receive denials that the treatment was causing some side effects (until I showed them the relevant info from Macmillan that said such side effects were possible) etc etc etc. And of course no consideration for one’s mental health through all this despite my GP flagging it up with them. When I challenged one specialist why they don’t see the importance of mental health in their patients recovery and never ask how people are mentally, she replied “well I always ask people how they are when they come in” as if this is enough to start a conversation about someone’s mental wellbeing rather than the general greeting question we all know it is. Insulting to say the least.
I wish you all the very best. Xx
It’s good that you feel your issue has been addressed and practices have changed. We had a similar experience with my husband who was nearly discharged from hospital with a pulmonary embolism. My friend who is on the board of governors for the hospital advised us to put in a formal complaint otherwise they aren’t made aware of any problems that are occurring. It’s important to be heard and like you said it doesn’t change your experience but you hope that it will change someone else’s
I understand exactly what you mean. It wasn’t that my treatment was bad in that I was given the wrong drugs or they cut into the wrong bosom but the attitude and communication was dire. My husband said to them “we’ve had a lot of National Health but not much the Service.” He was right.
We put the point across and , in the end, they were, I think, grateful.
It was my GP who asked why they hadn’t referred me to psychology. I said to him I didn’t even know it existed. So he referred me on. At my meeting at first they tried to brush me off with “well you would have been given a leaflet about that at your first appt” I replied that I may have been given a leaflet - it would be in my ‘cancer cupboard.’ And perhaps that if staff knew I was struggling mentally it would have been good for a staff member in the unit to acknowledge that and offer the referral. So, no , in spite of all the talk of looking after you nobody actually does look after your mental health for what is an illness that has a huge emotional impact.
So I think it will be worthwhile you giving any feedback when you are in a place to.
Yes it’s true, when I first met with the PALs team I left it as an informal investigation. Having got a reply and not being totally satisfied with it and another unsatisfactory consultation with the oncologist and a visit to the unit I upped it to a formal complaint as I thought the Chief Executive needed to know what was going on in her hospital - so it couldn’t be swept away.
Just wanted to say well done. It takes courage and a lot of energy to stand up for what is right when one is seriously unwell.
I was diagnosed during lockdown and basically was told to go away and die by medics who didn’t give a damn. For hospitals lockdown was like Christmas; few pesky patients, no nuisance relatives asking why their loved ones were receiving poor care, and no need to worry about complaints because you’d been given the George Cross. I ended up funding most of my treatment privately which means I have a cash-strapped old age to look forward to
The NHS has been pretty terrible for many years but their reaction to Covid gave them carte Blanche to do as they pleased with impunity. I fought the system all the way, mainly for the sake of others. However, things will never change until our health care prioritises patients over the wishes of medics who like things just the way they are. We have a communist-style system in a capitalist country and MUST move to a customer facing insurance scheme if we are to get the health care we are already paying for.
You will have made it so much better for others- what an achievement when you were going through what you have. Well done.
I made a complaint of my treatment inside and Outside of hospital, during my diagnosis, chemotherapy and aftercare of breast cancer.
It eventually got passed onto PALS, as the concerns casually got brought up in a breast care appointment.
After a 12 week wait to hear back from PALS, they didn’t even bother to investigate the most important and serious mistake that happened on the ward, which was giving me two conflicting medications, that led to my kidneys becoming dehydrated and spending 4 days in hospital.
Its good that there was a positive outcome for the OP in the end.
As for me, I wouldn’t go through PALS again, if anything else happened. I would seek external medical advice and action and just copy PALS in.
In my case, they ultimately marked their own homework, no real apologies or answers, so shouldn’t have led the investigation.
NHS doctor here
Massive props to the OP for mustering up the resilience to complain and actually seeing it through and getting an excellent outcome of changed practice. As someone else said, without complaints we don’t know what’s going wrong.
BUT
@Teddy271
Your assertion that “For hospitals lockdown was like Christmas; few pesky patients, no nuisance relatives asking why their loved ones were receiving poor care, and no need to worry about complaints because you’d been given the George Cross” is so unfair and inaccurate.
I get that your treatment was not as you’d have wished it to be, and I’m sorry. But, no, lockdown was not like Christmas. I recommend watching Dr Rachel Clarke’s documentary “Breathtaking” which is based on the diaries she kept at the time
I did make the lady from PALs cry, as she read through the litany of disaster - she was a similar age to me - and I think it really sunk home “this could be me, or my sister.”
Yes PAls do ‘mark their own homework’ - that’s why I went to official complaint because at least then more than the staff in the unit or breast team would be aware. I can’t say my actual treatment was bad or in error it’s the procedures and practices that are appalling and that there are no systems in place. Sometimes I think we will be given a scalpel ourselves soon and told to get on with our own surgery! I had to chase up everything and I think if I hadn’t been so driven, or articulate - or just a plain old mouthy cow I’d still be waiting. So for others who can’t say anything for whatever reason, things need to be better. However I remain adamant that should I require further treatment it won’t be at this trust so I guess I’ll never know!
The sad thing was that I didn’t want to make a complaint - I had raised the issues I was experiencing with staff and they were just brushed aside so I felt there was no option. It seemed to me that no one was willing to take any responsibility to make any improvements so I had to ‘go formal.’ And that, to me, was a great shame. One of the outcomes is that now when a patient raises issues they will offer a meeting with senior staff first.
I am truly grateful for the treatment - it was life saving and given timely (when I had pursued and chased it up!). My Daughter in law is from the USA and I know the cost and debt they have to go through to get treatment. But I expected better. It’s true that very little consideration is given to the mental health aspect - it is an illness with hue emotional impact. Far greater than I expected or realised. And I think that is something that still requires a great deal of input and work.
I saw the diaries some time ago. They are written from a doctor’s perspective. Here’s mine:
I spent time in both NHS and private facilities 2020 through 2022. They were both pretty terrible but the NHS won hands-down for uncaring de-humanising treatment to patients, all of whom were to be sacrificed on the altar of ‘only Covid matters.’ No other health service in the world closed its doors to anyone except Covid patients. No other health service chose to tell people with serious illnesses, including cancer, to go away and come back when lockdown ended. No other organisation could have survived callousness on such a grand scale. The two people diagnosed at the same time as me are both dead because they couldn’t raise funds for private care.
And, thanks to the NHS, even that route was difficult as our good old caring NHS commandeered most of the private hospitals and then left them standing empty. All those thousands of people who could have been treated if the NHS wasn’t more concerned about territory. I saw teenagers diagnosed with cancer without anyone with them to share the news. I saw very elderly people nearly fainting after standing for several hours to see a doctor because some idiot decided chairs spread disease. I was kicked out of my private hospital 6hrs after my mastectomy because the NHS commandeered the place. I had to ring somebody to collect me in the middle of the night. Later, the drain came out, and days later the seroma burst and I was blue-light to another hospital where I was dumped in a men’s surgical ward with incipient septicaemia.
Luckily for me, like the original OP, I am a vocal person who, despite being weak from surgery and running a fever, managed to insist on being cared for. So, please don’t preach to me about the NHS which is the worst run organisation probably in the world. It gobbles our money which it then wastes on an industrial scale whilst providing inferior health care. I now beggar myself on a limited pension to keep my BUPA contributions going. The other way is probably death. The NHS should hang its head in shame over the way it treats people, particularly during lockdown. Instead, it got the George Cross. I have never been so angry.
Oh and don’t lets even bother to mention the GP’s who spent their time barricaded behind their desks in case sick people should try and seek their help. Whoever heard of a national health emergency anywhere in the world where doctors decided they were exempt from dealing with it? Unbelievable. The doctors who ministered to the sick during the 1918 flu epidemic would not believe this could happen
Rachel Clarke’s little film is a diary of her perspective, necessarily skewed to represent the doctors point of view. Because in the world of the NHS it is only the medics who matter. Patients are merely a nuisance. Lockdown is long past now but my memories of the inhumane way I was treated have certainly scarred me. And the more I read on this website of what women are putting up with just beggars belief. And it will continue that way until the NHS is dismantled and we move to an insurance based system where patient care is the benchmark.
The NHS has been ‘marking its own homework’ since it was created. And it will never change until it is broken up. Most medics will work in the NHS for their entire professional lives which means they are imbued at an early stage with the ‘doctor knows best’ philosophy. They nothing of customer service or satisfaction and underneath think the peasants are lucky to get any treatment at all. They are never taught about waste or customer satisfaction and so the deterioration continues. Until fairly recently they have been able to rely on the public championing them but that is changing now and changing fast.
I understand that different people have different experiences. On this basis I wish to say, as a contrasting viewpoint, that my ongoing breast cancer treatment has been amazing, under Worcestershire Healthcare Trust, efficient, kind, professional and effective. I cannot thank the NHS staff and facilities enough for continuing to save my life. I feel very lucky indeed, at so many levels.
I also know from 1st hand experience how demanding and tough the covid pandemic was on all the NHS and felt disappointed to read inflammatory comments to which the NHS medic responded so reasonably.
Dear Edithrose,
So nice to read a positive comment, I was at Guys Hospital last week my consultant and the nurses were outstanding
Well done to the NHS we need you.
Wishing you well going forward
Hugs Tili 
I am genuinely sorry for the poor treatment you received Teddy I know the system wasn’t working as it should have been. I was battling it too though as a relative of sick and dying parents rather than as a patient myself . Some of the rules made no sense and Mum’s Consultant came over to me as somewhat callous. I feel for everyone who lost a relative or had a diagnosis missed during that time .
I am a Nurse however and I would like to report that my Hospital was full to bursting during lockdown. Most of our wards were full of nothing but people suffering with the effects of COVID during the first wave and part of the second. Thanks to the Government handing off PPE production and Testing and Tracing to their incompetent mates we didn’t have the right equipment or enough of it to protect ourselves and we didn’t know for a long time who had the virus and who didn’t as not everyone had symptoms. When we reported symptoms that we felt might indicate a COVID infection eg loss of taste / smell the powers that be initially declared those to be irrelevant.
I am not aware of anyone having asked for a medal or similar recognition. I heard that Boris Johnson was considering it at one time - I would not have taken anything that came from him. None of us asked for the Thursday handclap - it helped some of us but made others feel uncomfortable . We were very grateful for the gifts of handmade scrubs as otherwise we would have run out of uniforms. I still keep a set just in case . I have an industrial facemask with extra filters which I bought at my own at my own expense and still keep - just in case . One lady sent cake every day for months - she wouldn’t take payment even though we offered . We will remember these acts of kindness for the rest of our lives - they helped.
A lot of NHS workers left or retired and some died. Things were so bad in some areas that there were suicides among the staff. Of those of us that remain 10% have suffered long COVID and some are now unable to work. It is just as impossible for me to forget my anger in regards to this time as it is for you to forget yours.
I think that some sort of change in the system is inevitable - I’ve had to look outside it myself but if you are advocating completely private health care you might wish to consider the following. In America personal medical debt is the leading cause of bankruptcy . The majority of staff I work with who come from overseas report that healthcare in their country of origin is very expensive and many are working extra hours within the NHS to pay for a sick relative still living there to have treatments that would be free on the NHS here. I have looked after people with private insurance who have asked to be transferred to the nearest private hospital only to be be rejected . The cost of medical insurance goes up with age and each medical condition that you have . New conditions that develop as a consequence of a pre- existing /previous one may not be covered .
I understand that you have good reason to be angry and bitter and I’ve felt the need to reply - to not turn the other cheek for a while now . I know you like a debate and a healthy argument but I think I’ve said more than enough so you won’t get one from me. I’ve got it out of my system now so if you don’t read this or reply to it that’s fine and I won’t answer you.
Apologies to the people whose thread I have hijacked.
Omg… YES, YES, AND YES! All of which I have been going thru is exactly how you decribe it. And good on you for following thru. I have given up talking with the medical world about all my slights. Been happening to me for 5 years, and with 3 different insurance and several medical providers over those 5 years. I am currently in radiation treatment and will begin hormone blockers in a couple months. Ive alteady decided that in my own community, we need a center of some sort that people can be referred to. Where there is other cancer survivors, where answers to all questions can be resolved or at the least give some sort of lead to look into. What questions do i ask of which doctor has been one of my biggest frustrations. I’m always being told, "you’ll need to talk to obgyn about that…"are you seeing a psychiatrist? Therapist?..“oh i dont know anything about that…”
Well said Joanne, Tili
Dear Joanne,
Just wanted to say thank you for your courteous, intelligent and finely tuned response which is certainly food for thought. I will respond in kind. Thank you again. And thank you for what has obviously been dedication in your job.
I just re read my post - I was attempting to be concise which is not a talent of mine. I may have given the impression that I personally was being considered for medal but this was not the case . The RCN reported that the Johnson government were considering issuing a medal to NHS staff who worked through COVID . This idea was rightly shelved .