What the fuck do I do?

[Bakewellisntjustacake]

I have suspected lymphoma but they can't rule out breast cancer because after my MRI which showed 3 big lymph nodes in my neck and chest, I did a breast exam and found a sizeable lump that I hadn't noticed previously . My issue is my referral to the breast clinic has been cancelled because the hospital I have been referred to has been inundated with covid patients and they've moved staff from out patients to covid wards.

They have cancelled my Wednesday appointment and rebooked me for November, all the rapid access appointments have been cancelled and my county won't allow my GP to refer out of area. My Gp is beside herself because she's so angry, but says there is nothing she can do other than write me a letter I can take to other hospitals. I have 4 hospitals near me but none can accept a direct referral from my GP because they're not in the same area.

I've written to my MP to complain but it just feels like an absolute death sentence

Go to the media.

I am not a fan of "sad face" in general but sometimes its justified and this is one of those times.

Make a MASSIVE fuss

I borrowed money to see a private surgeon after no help from my GP for a painful condition. I was seen fast, mri, operation all in two weeks. Remortgage, borrow, get a loan, all private health care offer interest free loans. The NHS was slow before covid now it’s ground to a halt. The private hospital was ultra busy - all people who were unable to get NHS help at all!

Media and MP also tweet the hospital or NHS trust repeatedly

My sister had an initial diagnosis of lung cancer on the 30th June and has yet to see a Dr or have her twice postponed biopsy- PALS are getting no where so we are now going to the press - good luck x

@ZednotZee

That is shockingly awful. I'm so, so,.sorry that you are being treated in this way. You need to get that letter from the GP and then go to the out of county hospitals and sit in A&E until the medics see youand very likely will refer you to the oncology team at their hospital. This may mean a few hours sitting around but I guarantee that the doctors you see will be appalled at your predicament and will do everything they can to cut through that fucking red tape and get you seen ASAP.

This must be so scary but its time to be proactive. I amnsure your GPS letter will be as emphatic as possible that you be afforded the medical care in a timely manner that is your absolute right.

This has got to be worth a try, surely?

Have you been referred under the two week wait? If so, they need to see you. Contact the Pals department at the hospital.

So sorry OP, yes, as others say make a MASSIVE fuss and also, go private. My dad has had to do the same with first one, then two tardy cancer diagnosis and STILL no treatment months on... Has now developed a heart condition which seems to be related to the second cancer.. Fucking great. 😠
He resisted going private for months having some kind of mis-placed faith in the NHS...

It’s scary how people can’t get medical help when they really need it. This has to stop. What can we do to get other illnesses a higher priority? I’m so so sorry you shouldn’t have to fight to be seen

Id get a loan and then hope someone can set up a go fund me page (or even do it yourself ) to help pay back the loan. So sorry this is happening to you. Dont give up.

You shouldn't have to but go to your local radio station/newspaper.

I'd also be in touch with the CCG and put pressure on them as it sounds like they are also stopping you moving on in the process.

I was under the impression that patients have the right to choose where they are treated? www.nhs.uk/NHSEngland/patient-choice/Documents/patient-choice-leaflet.pdf

If you are in England your GP is allowed refer out of area, it depends and is worth ringing the cancer office at the hospital you're thinking of to check they accept out of area referrals. You dont have a legal right to choice of hospital for suspected cancer but it doesnt mean you cant choose.

The reason I know this is I recently looked into someone being referred out of area for suspected cancer in my NHS job.

Contact your Clinical Commissioning Group asap to tell them about this. Cancer diagnosis and treatment is always high priority.

Please read point 4 on this webpage www.gov.uk/government/publications/the-nhs-choice-framework/the-nhs-choice-framework-what-choices-are-available-to-me-in-the-nhs#section-4 .. it confirms that you have a legal right to change hospital if you are going to wait more than 2 weeks for suspected cancer.

I know things dont always work in reality as they're supposed to, but push hard for what you are entitled to. The health service is struggling, but there is no excuse to delay cancer diagnosis or treatment.

I second the Go Fund Me page and will contribute. Happy to help set it up if you need.

Also for your sister @ghostyslovesheets.

@Mumblechum0

Autocorrect 🙄 Beg, borrow or steal.

I did wonder how getting pregnant would help the situation🤣 🤣 🤣

Pre Covid I knew something was wrong and went to see a surgeon privately, who on viewing my scan transferred me immediately to a hospital bed in an NHS hospital for urgent surgery, which he performed. Three weeks earlier I’d presented myself at A&E and told there was no way I needed surgery snd it must be something else. I left A&E in the end as I was just sat waiting when I knew they were wrong and went privately.

I’m not saying it will always happen in this way. I paid for my last major surgery as I was fobbed off again by the NHS and I wanted a specific surgeon as the surgeon, who operated on me apparently hadn’t sewn me up properly.

It's all very well say go private but the cost can be exorbitant. The initial consultant with a cardiologist cost DH around £400, and was incredibly helpful but he then faced a 6 month wait for diagnostics if in the NHS system. So he then ended up paying out around £4.5k for all the tests that he needed as well. And 18 months on, he's still only partially diagnosed and that is holding up an urgent hernia repair that's making life very difficult. He can't have that done privately because of the risk of going under a GA in a hospital without intensive care facilities due to his cardiac issues. He's completely and utterly trapped in the system with no seeming way out.

I won't say what I would like to about the NHS and Covid prioritisation. Far more are going to die from lack of medical care during this pandemic for other conditions, and it will be a huge scandal in the coming years.

Have you been referred under the two week rule?

There are considerable waits for private where I am, as everyone who can afford it is trying to get their diagnosis there due to NHS waits. If you find that is the case, I wonder if the suggestion of getting the GP letter and just sitting in A&E till you are seen is worth it? Maybe with a journalist sitting with you!

My brother is now terminal because 2 operations to remove a cancerous tumor were cancelled in July and Aug (‘cos Covid) and the tumour has now travelled to an inoperable place. I cannot stress enough how much I wish he’d gone private (I don’t know if he knew that was possible or recommended - he is an optimist and probably thought the docs knew best).

Go private, sell your soul if you have to. Live.

If you’re in England, call your local Clinical Commissioning Group first thing on Monday morning. They have overall responsibility for healthcare in your area.

@exLtEveDallas

My brother is now terminal because 2 operations to remove a cancerous tumor were cancelled in July and Aug (‘cos Covid) and the tumour has now travelled to an inoperable place. I cannot stress enough how much I wish he’d gone private (I don’t know if he knew that was possible or recommended - he is an optimist and probably thought the docs knew best).

Go private, sell your soul if you have to. Live.

I am so sorry, that is awful.

A private assessment at a breast clinic is only around £300, and you can get an appointment usually that week.
It’s annoying and frustrating but it’s an almost inevitable consequence of what happens when a totally free health care system experiences a pandemic.

I’m in London btw - there may be longer waits elsewhere. I’ve had a couple of moles checked out privately during the pandemic and there are multiple places to choose from with a next day appointment

I’m so sorry OP.

I would try and find an area that has not cancelled fast track cancer services. Choose a private doctor in that area who also has an NHS practice. They should be able to refer you to their own NHS practice.

Alternatively, go to an A&E in that area. If you have to exaggerate the pain you’re in to get seen, I think that’s perfectly ok given the circumstances. 20% of people have their cancer diagnosed in a and e anyway.

PALS, Chief exec and local media. This is awful!!

My heart goes out to you OP, this is appalling

I can only second what others have said.

If you can get a private consultation, please do. Although you shouldn't have to.

Either way, start complaining very loudly to anyone and everyone. PALS, your MP, local newspaper, twitter etc.

I hope you get seen very soon

Contact professor Karol Sikora, his Twitter handle is @ profkarolsikora, he is an oncologist who has been tirelessly campaigning about his concerns about missed cancer diagnosis during the pandemic.