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

I am so sorry that this is happening to you. Please do all you can to get seen ASAP. It’s appalling that people are having to resort to paying privately (I know lots of people who have). My mum was not so lucky and after a year of being told she has long COVID, it turns out she has a terminal cancer.

I know the NHS are under pressure but they should absolutely not be cutting services from cancer referrals and wards. In my opinion the is a scandal in the making and I feel so sorry for all those whose families are affected!

@BobISMyUncle

Gosh. TILFA.. Your attack is misdirected, I think. I hope. My family is not without cancer. I am not your enemy. I don't know you. You do not know me. I don't know the battles that you have. You do not know the battles I have.

I know that I have empathy for the people of Afghanistan who are fleeing for their lives. I also know that a huge number of NHS staff are from outside the UK.

Your initial private appointment will be in the region of £250. Do this initially as the reality is whoever you see may possibly push you through the NHS quickly especially as your already know to them.

Here are some stats …Rather contradictory of the bullshit you are spouting. I’m not vaccinated. That is my choice

Interesting you dragged the stats from the Wales Online piece (telling because of the asterisk) but omitted to include the following, also written in that piece

Dr Giri Shankar, an incident director for Public Health Wales said: "Hospitalisation data needs to be interpreted very carefully and should be looked at with other information before any judgements are made. This data alone is not a suitable indicator of vaccine effectiveness”.

”It is important to note that no vaccine is 100 per cent effective however. People who have received two doses of the vaccine can still get Coronavirus, but when they are admitted to hospital the duration of their stay will be shortened and they are less likely to require admission to an intensive care unit (ICU), and less likely to die."

Get the vaccine, or don’t. But if you are going to choose not to, do so with the knowledge that you are risking being someone who ties up a hospital bed /ICU bed for a couple of weeks or more, rather than for maybe a couple of days. And own that decision instead of using carefully snipped stats to pretend you aren’t part of the bigger problem.

Are you in a position financially to go private?

Have you contacted PALS?
Their involvement resulted the very quick scheduling of an appointment for someone I know.

You said you’d written to your MP but I’d worry that an email or letter wouldn’t be read for a while or whoever is responsible for triaging correspondence doesn’t pick up on the urgency. I would phone and speak to their PA and see if they can get hold of the MP quickly.

As much as I hate SMS and going to the press I damn well would in your case. I am so sorry you are having to fight for the treatment you need at an already horribly stressful time.

I agree with PP who suggest sitting in A&E until you are seen. You would probably be referred to Oncology once you actually get seen. A&E seems now to be the only way to see anyone at all.

For all those saying “this has to stop” and the NHS needs to treat things other than covid, it’s not the staffs fault. The NHS has been stripped and defunded for so long.
Doctors and nurses, hospitals and GPs are exhausted due to covid. They all want to treat you, they are not sitting there saying ah it’s not covid so I’ll put my feet up. Someone coming in with covid is dying in front of you and needs your attention then, someone with a cancer diagnosis needs seeing but they won’t die that night.

It’s not a concise choice, it’s a treating those dying first, it’s a war zone, it’s shit it’s due to covid.

Do you know how you can help the OP? All those people saying they refuse the jab, don’t want to do LFTs, open everything back up and will be hugging and licking every relative if there’s another lock down, these are the people still spreading covid and putting pressure in the NHS. Stamp out covid and other services can return.

OP, you GP sounds lovely. I also recommend doing a go fund me, I’d be happy to send you a fiver. I know MNHQ always say don’t send, you don’t know, but in this case I’m happy to risk that.

Absolutely dreadful op. Im angry for you. This is an awful thing to face in the best of times with all the fantastic nhs treatment normally available free of charge. I can’t believe they are doing this. I’d get a 0% credit card. Good luck.

Hi op there are some great lymphoma support groups on Facebook full of people who have dealt with multiple cancers and different degrees of NHS effectiveness. Please consider joining.. if anything it's just a great space to vent and talk with people who have been in your shoes. Good luck

P.s. we also are dealing with a cancer diagnosis during covid, delayed medical care and possibly affecting life span delays, as much as I know it’s shit I know the medical staff aren’t sitting there saying fuck you it’s not covid, it’s just this shit worldwide pandemic and I want people to stop spreading it so care can resume and schools can stay open.

Yes it’s definite not the staff’s fault. It’s the government’s woeful, long term underfunding.
Why did we build the Nightingale hospitals?

They were to keep normal hospital’s running weren’t they?

@changeyourname11111

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

Also for your sister @ghostyslovesheets.

Thank you x I hope it wont come to that :(

I've passed the info on here on to her - she's going to get on it asap - thank you for everyone who posted twitter links and information - it's been helpful.

Can I just say - my sister would NEVER begrudge a person fleeing from persecution and tyranny a safe place in this country and using refugees on a thread about cancer waiting time would frankly disgust her.

My DH died from cancer last summer. He couldn't get the diagnostics or treatment he desperately needed because of Covid 19.

He was turned away from A&E twice, GP would only talk to him on the phone. When the cancer was eventually diagnosed his consultant begged the Royal Marsden to take him as a patient, they REFUSED because of Covid.

He died alone, scared and in great pain. Macmillan and our local hospice couldn't help because of Covid.

My DS and DN both need urgent surgery but their operations have been cancelled until further notice by the NHS. So we arranged private surgery for them. Both have had their private operations cancelled until further notice as the NHS have commandeered the private hospitals because of Covid.

Make a huge fuss @Bakewellisntjustacake and everybody else who is struggling to get the help they need.

@lateSeptember1964

Your initial private appointment will be in the region of £250. Do this initially as the reality is whoever you see may possibly push you through the NHS quickly especially as your already know to them.

This is deffo worth a try. We did it in terms of fertility investigations and as pp said the dr then fast tracked us via the nhs as we were eligible. All we bypassed was the initial wait to be seen by a consultant and that cost us £250 plus about another £50 for some bloods.

OP this is so fucking awful and infuriating! I feel your pain. I discovered a lump in my leg in October last year. My GP did an urgent referral. I had an ultrasound in December, the sonographer said she couldn’t rule anything out as the lump didn’t really fit the criteria for a lipoma or a tumour. She was quite puzzled. To be on the safe side I was referred to plastics to have it cut out for testing. The referral was rejected because it was just under 5cm. The lump has now doubled in size and is causing issues with pain and weakness in my leg. The GP has said her hands are tied, the referral keeps getting rejected. She suggested I get it taken out privately but the surgeon refused because he said it’s too big to do it awake in his private clinic. I can’t afford proper private surgery. I’m only 34 with young kids. I’m so scared. I’m tired all the time and have night sweats every night. Something is very wrong and no one will help me.

So sorry to hear that stopgo x

Ask for a choose & book referral, they give you a list of hospitals, some doing NHS work in private hospitals, you ring around to see who can see you quickest & then book your appointment.

I had a stroke in January and a serious brain condition and have not once been seen face to face by a consultant. Still waiting to see a neurologist. I emailed PALS for help 3 times and got no reply. I emailed the clinical commissioning group for my area and got a reply within days. I know the NHS are under pressure but if I die it’s irrelevant to me. I have to be selfish right now.

@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.

That is dreadful and I am so sorry @exLtEveDallas. There are many of us who have suffered untold worry and avoidable tragedy as a result of the world focussing on Covid. I understand the Covid focus but people have no idea of the suffering of people and their families if you have another serious illness in the last 18 months. It’s an experience I’ve had too.

@Bakewellisntjustacake I am so sorry that you are having this extra stress at the moment. I don’t know what to suggest but my relative was treated for Lymphoma at a hospital outside his GP’s usual referral route though that process did start before Covid. I would agree with harnessing the media and I have found Twitter good for this because you can include MPs, CCGs, campaigners and journalists in the same tweet which can make it tricky for them to ignore or stop the retweets. Whatever you do I really hope you can get the timely treatment and support you deserve

@CovidIsADick sorry to hear that. That's a similar path I've been on, but I was extremely lucky to have seen an ex hospital consultant in a normal medical centre. It takes finding the right person and everything can change. Don't give up hope

*TatianaBis

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.*

This is untrue-a Consultant cannot refer you to themselves on the NHS from their private practice-primary care ie your GP has to initiate the referral for NHS funding to follow. A private consultant can write to your GP to request a referral be directed to them (DH generally phones said GP if urgent and gets something faxed over)

However it certainly should be possible for GPs to refer out of area for those patients who are prepared for this, although in practical terms I suspect the local CCGs can set their own rules on this...

Local CCG’s can’t set their own rules-they can try and block you but in the end they actually can’t. It is 100% your legal right to pick which hospital you want to be treated at and which consultant you want to be in charge of your care-you might not see that consultant, as you may see one of his team but you will be under their care. This is via the Extended Patient Choice Network (or choose & book)

Have you tried asking at some of your local private hospitals to see if they are taking NHS choose and book patients? Most are so that they can increase their bed occupancy and the wait in general is less than in NHS hospitals because not many people know they can do that.

Having said that-I would Chuck some money at it in the first instance.