Recently diagnosed and blowing a gasket at the NHS

Diagnosed with breast cancer Recently diagnosed with breast cancer
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Why is nobody shouting about the NHS? Are you kidding - some of us have been howling from the treetops about this terrible organisation that takes all our money and provides very little except total inefficiency.

Your anger is at least positive in some ways. I have been pointing out that UK health care is PANTS for more than ten years but until Covid, very few people would hear anything bad about it and somehow they became immune from criticism. However, this attitude is changing fast as people have started to realise just how terrible the NHS is and that our treatment and outcomes across all areas are much worse than virtually anywhere else in Europe. Until a couple of years ago, the NHS got away with it by playing politics and claiming they didn’t have enough money, but people now understand that if we all handed over our entire salaries each month, they would still claim poverty as it is so badly run. For a capitalist country, quite how we have ended up with communist-style health system is a mystery; we need urgently to change to an insurance-based system and I had hopes that Wes Streeting understood this. He made all the right noises whilst in Opposition but has now reverted to type and is chucking more money down the black hole.

I was diagnosed with cancer at quite an advanced stage in November 2020 and the NHS threw me under a bus because they had become the Covid only service. BUPA saved my life and although I am not well off, I will scrub floors before I give up paying the premiums as without their excellent care I probably wouldn’t have made it.

I cannot think how to advise you other than to say that just when you are in need of care and support, you are going to have to become a dragon and shout and push and shove for the treatment you need. Not nice, I know, but its your best bet.

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@itbird66 I am so sorry you are having such a rough time getting your treatment started. It’s a time when even the bravest of us is at our most scared, once treatment begins we tend to just plod on, one foot in front of the other, trying to see light at what seems a never ending tunnel. I was due to have my breast cancer surgery on January 3rd this year but then the junior doctors went on strike and it was postponed until the 31st. Just last week I had a major thoracic surgery but prior to it I needed a PET scan - the appointment for which was cancelled on the day of the scan on three occasions until I finally got the scan on the fourth try. Yes it’s been hard, frustrating, disappointing and downright just blooming awful and yes the best thing is for patients to kick up enough fuss to try and make the NHS a better and more efficient service but there are so many causes and so many factors involved it seems an impossibility. One thing I refuse to do though is to let it add to the stress already placed on my mental health. I do hope you can get your treatment sorted and started quickly and I hope you kick some butts along the way and let them know that you aren’t for messing with. Please go to your GP and get all the help you can - whatever will help you through this - but please look after yourself too, you are the important factor in all of this. Sending you love and quick results, with you in my thoughts xx

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Hi itbird66

I am so really sorry that you are going through this horrendous experience The NHS is broken and this has been going on for years and the only solution on offer is to throw more money at it I sometimes think the we patients are more of an inconvenience and shoud’nt be bothering it with our health problems.
I had DCIS in 2010 with the removal of my left breast and the treatment was fast and efficient and my experience was a positive one In 2018 my cancer returned HER positive ER negative this time round there were delays in starting treatment and less face to face consultant appointments but my breast care nurse was great. This year after 6 years on letrozole with only 1 face to face consultant appointment the cancer has returned and it has been a nightmare. Firstly the cancer was misdiagnosed as stage 4 lung cancer so refferral was made to a different hospital in July 24 who didnt bother to tell my breast cancer consultant I had to keep phoning to let his team know what was happening after scans and 3 biospsies over 2 months to find out the grade of lung cancer so that a treatment plan could be decided by another team A yearly letrozole review in September 24 with my beast cancer consultant where I asked about the latest biopsy results revealed it was stage 4 breast cancer and not lung he immediately took over and drew up a targeted treatment plan which started in Oct 24 with monthly dates one of which was for boxing day a chance meeting with a chemo nurse revealed the unit was closed on that date. I have had a battle to get a Dec date being told 3 different reasons as to why I dont have a date I eventually contacted my consultant and within 3 days had my appointment Christmas eve without an appointment I have no medication for the next month.

I used the NHS predict tool which rated a return of breast cancer as 80% if I kept taking letrozole

The only advice I can give you is go directly to your consultants team be a pain the more you are in their face the more likely you are to get action or answers it takes a lot of energy and time to do this but what option do we have

I wish you all the luck in the world

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Thank you for sharing - its really useful to know all this stuff isnt it - the idea that the treatment will be patient focussed is very misleading - its not so much the cancer that you end up in a battle with but the NHS and the so many people and teams that have to be involved with. its exhausting , thank you again for the advice x

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I really hope not. Those of us with metastatic cancer, who don’t already have health insurance or very deep pockets, would be truly stuffed. You only have to look at an American support site such as Share to see how truly awful this is for cancer sufferers to navigate. Even those with good health insurance have to argue and fight their insurer for everything they need and deal with a lot of expensive deductibles. That’s not to say there isn’t need for transformation of the NHS.

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We shouldn’t always look to the US - more models throughout the world where healthcare is provided, as and when needed by the patient rather than as and when the system can cope with treating a patient .

We are where we are and have this frustrating system to battle with as well as cancer. I will give you an example - the NHS app - my trust have an additional app that you access either via the NHS app or standalone, i still cant figure out how is the best way to access it , its hit or miss. anyway this app has some old appts uploaded, the cancelled one is missing, there is no scans, test results etc on there no diagnosis, all these areas are empty.

That tells me that some areas of the service are not uploading the information - maybe they dont know how to , dont have the equipment to upload , no management advice to staff that they should be using this - i dont know what the problem is . This reliance on old working practices, post, leaflets, phone calls is so so frustrating .

Phoning the PALS number and asking questions and again they dont have the information . Concerned that they accessed my information with no checks as to who i was - these are a couple of things i have experienced in the last week, it worries me . she suggested that she can email the oncologist team to tell them that i wanted to be referred else where - i was really concerned that an admin person could have this level of control over my treatment. had to ask her and get her to confirm that she would not do this. I only called them to ask where i could find the cancer waiting times for the trust and end up pleading with this person not to email and remove me from the list - couldnt believe that someone from a patient liason team could suggest this .

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It is a mystery to me why people automatically defer to the American model when they want to protest about changing our woeful NHS to an insurance-based system. There is no evidence at all that any country in Europe, let alone the UK, has ever contemplated such a change. It is, however, a fact that every European country has better health care than we have here. And we are paying through the nose for an abysmal standard with poor outcomes and nil patient consideration. It must be changed to a system where those who can pay what they can. For those living on very limited incomes, the only thing that would change would be they would get better care. I am not remotely wealthy but I prioritise my BUPA contributions because they are now absolutely essential. I don’t begrudge the money because I believe it is right and proper that I provide for myself BUT I DO resent having to pay twice.

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I understand that a lot of European countries have mixed models. They also in general pay higher taxes than we do. I for one would prefer to pay higher taxes and have a better health system. I don’t care whether it is all fully publicly funded or not but however it is set up, I don’t want to see those in need denied health care because they can’t afford it. The reason people look at the US model is because that’s where a low tax, low state model eventually takes you - and that seems to be the sum of the ambition of some of our politicians.

I don’t have private health care, although I did when I worked. I am however prepared to pay for private treatments if I need them and don’t feel I am paying twice for the privilege.

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An interesting discussion. Funding is not the NHS problem. It now receives more money per patient than quite a number of European countries with far better health care. Its problem is that it is a socialist/communist system in a capitalist country. It has got away with it for years because the one thing it has been supremely good at is its public relations. Long waits for treatment were always the fault of whichever government was apparently starving them of funds.

The model worked adequately in the fifties but is no longer fit for purpose. It is badly run, far too big (second largest employer in the world) and has never been customer centric. There are too many vested interests, ie. doctors pretty much love the NHS since Covid as they can now earn full-time salaries for part-time work and conjure up any number of excuses not to see patients. This will never change until accountability is introduced. Most medics work in the NHS the whole of their lives so they never encounter the discipline of working to a budget. It must be dismantled and we must have an insurance-based system where those who cannot pay will be protected - just as they are all over Europe.

So, please, lets all work for the introduction of a patient-centric system. As long as we keep scaremongering about American health care, the longer it will take for the inevitable change to happen.

Oh and I have no problem at all complaining about paying twice. I budget for life expenses and have the right to expect that the NHS will not waste the vast amounts of money it receives. Pouring our gold into the black hole that is our health care system does not help anybody.

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I am not going to put any more more time into arguing. I am sorry your experience hasn’t been great but I can’t fault the experience I have had.

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The NHS has it’s fault but without it I may not be here to write this post.

The medics I have encountered on my cancer treatment have been committed and professional, yes some things went wrong and they listened and tried their best to make things right. At the moment there is the ‘quademic’ so that could be affecting staff numbers to be able to make appointments. In many Welsh hospitals they have reinstated masks to prevent the spread of flu.

Many cancers do not grow really fast so a few weeks wait should not be a problem. I was diagnosed with bilateral (both) breasts, so with extra tests I was not treated within the recommended timescales but the team were still confident with the plan. Some of my delays were due to summer holidays with staff and this could be the case for you over the festive period.

As already mentioned I would call and ask to speak to the consultant’s secretary to see what is happening and why, if you haven’t done already. Were you given a breast care nurse number, might be worth call to them. Or the BCN nurses on 0808 800 6000 ( closed 1 Jan), just to chat through what is happening. You may have already got a new appointment.

As far as the NHS app, you should live in Wales, we can only order repeat prescriptions, look at medicines prescribed and GP appointments already made. We don’t see our medical notes, blood tests, can’t book appointments with GP and can’t see any hospital information at all. But that what you get from a devolved system, hopefully it will be improved soon. My local trust send texts for appointments and reminders but the cancer centre send letters by post. Not joined up! Even though things are not perfect, I have still been treated well within the NHS.

Earlier this year I paid to go private to see a menopause specialist, who I’d waited months to see as an urgent cancer referral, and that experience was far from perfect. Clinic over run with no updates, unfriendly receptionists who asked me to wait in the wrong place, poor parking, very high prescription charges and processing fees and a consultation that felt rushed as I was last and they’d run so far behind. I refused to go back and eventually got my NHS appointment 4 months later.

@itbird66 I noticed you are HER2+ and as our treatment lasts longer than chemo starters monthly threads you might like to join this thread of very supportive HER2+ buddies, it’s been running for a year this week.

I’m hoping you have some news nd are feeling a bit better.

:smiling_face_with_three_hearts:

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Interesting. I thought we were having a stimulating and informative debate about a subject of vital importance to so many of us and sharing different viewpoints

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I never really understood when people referred to cancer treatment as being a postcode lottery until now. Since my own treatment started and from reading what people put on this forum it’s really clear that where you live and which hospital treats you really affect the speed of treatment and what you are offered.
I live in a relatively low population area of the west country now, having moved two years ago from a big town on the south coast. The consultant I saw today once worked in that big town. He said to me that because we have a lower population here in my part of the south west my treating hospital is able to meet all the recommended timescales for each stage of treatment, whereas if I were still to be in the big town I lived in before I would have waited many months for each stage of the same treatments. It’s just a fact that hospitals, whether well managed or not, cannot cope with increasing populations as their staffing capacity, equipment and buildings can’t grow at the same pace. Sadly this has a huge effect on their patients.
I’ve had amazingly kind and compassionate care from my doctors and nurses (even though I feel that overall there is a lack of understanding of mental health issues from cancer treatment) and I cannot fault any of the individual practitioners I have come across. It’s the administration and lack of coordination and communication that is so frustrating at times and the fact that you have to constantly follow things up and make sure you haven’t been forgotten because you feel you can’t trust that they will be done. Just one example - 2 days after my surgery I was making phone calls to try and find out why my phesgo jab that was due at home that day hadn’t happened. Why? Because the person who should have signed off the prescription 2 weeks beforehand hadn’t done it! You shouldn’t have to be your own care coordinator 2 days after a double mastectomy. I made 8 calls that day to sort the problem out.
I now always follow up whatever I am told with an email to my breast cancer nurse and ask her to confirm she’s got it. I’m sure she must dread seeing my name! I do it by email so I have a trail of correspondence I can rely on should I ever need to (legal secretary for years so it’s habit I’m afraid) and I never leave anything to chance now.
I hope you soon get the appointment and answers you need and I wish you all the very best. Xx

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Good tip Jayesse i will try and get some email addresses for the BCN team so i can follow up similarly.

you know the staff are great mostly although you do feel like a specimen and i am starting to object to the amount of people that are in the various rooms . its like you are getting this terrible news at various stages and there are all these people staring at you , looking for your reaction, no-one actually saying anything just staring at you - should i be crying? fainting, laughing - i dont know but feel i am being expected to provide them with something . from here on in i will be asking who everyone is and the reason for their presence as its all too public for me.

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Its the same with the NHS app in england - the only people who seem to be uploading stuff is my GP and sometimes the outpatients appt team - the breast cancer team dont seem to be uploading anything at all - i wonder why ?

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Maybe on another day. Too many family here right now.

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Goodness. I’ve only once had lots of clinicians in with me and the consultant introduced them and explained why they were there and asked if I was happy with it. . You absolutely must tell them you are not happy and only want essential people there and expect to be asked re anyone else. X

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Hi @itbird66 sadly I can relate. My whole treatment has been delayed at every stage due to poor NHS communication. On the bright side, once your treatment starts properly, you will hopefully find that things move along more quickly and efficiently. Hope your new appointment comes quickly. Good luck x

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Good News i have had the Oncology appointment this week, was told yesterday that the chemo will start next weds so that is brilliant. Dreading it but am less anxious now i have the information and have a start date. Thank you all for your replies and lets hope we can all come out of this in one piece and carry on with our lives. xx

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I’m so pleased you know what is happening. As you are starting chemo next week you may like to join the monthly chemo starters group. They run every month so you can support, share and get support from others going through similar treatment to you.

As I mentioned before you are also welcome to join the HER2 buddies as your treatment will last longer than chemo starters group.

Be thinking of you next Wednesday. :smiling_face_with_three_hearts: