Can NHS workers explain delays with cancer follow-up and 2WW referrals?

[France8857]

NHS workers, please help me to understand what is going on!

References to cancer and the 2 WW

I would like to clarify that this is not an NHS bashing message. I truly believe that there are so many wonderful individuals that are doing their very best.

My background: I had breast cancer at a (relatively!) young age (45) and needed a mastectomy and radio. I have annual mammograms for 5 years.

I had my 2nd year, routine mammogram recently. At the appointment I was told that it would take 8-10 days for me to receive the results. Waited patiently, no results. My husband reassured me that if I haven’t heard anything it is good news but I am, by nature, rather less trusting! I managed to get the number for the breast team at the hospital and call to be told the consultant hasn’t written the letter but she will chase him. Told to wait for a week which I do but still no results. Repeated the above twice more and finally receive the result (which was clear -hurrah) 4 weeks after the initial 8-10 day wait.

Now, clearly, it was all ok but what if it hadn’t been…. This kind of delay is crazy for a cancer appointment. The ‘you’re ok’ letter was also sent by post (not uploaded to the NHS APP) which again is crazy in this day and age. The first breast cancer diagnosis was the same with letters
Coming every 2/3 weeks for appointments for further scans and biopsies. In all it was over 6 weeks to go from initial mammogram to sitting down with a consultant to be told it was cancer.

It all feels far too long and inefficient.

Third example. I went to the GP (who was excellent) a few weeks ago with another lump on my body. I was put on the 2WW immediately and given assurances that the 2WW would mean that I was seen within 2 weeks as I was high risk because of my previous cancer. I have just received an appointment through which is 4 weeks after my GP appointment.

I am just really trying to understand what is going on. Clearly, these kind of waits for cancer are not acceptable. Is it just the sheer number of appointments and the lack of doctors? Is it just hugely inefficient and despite more and more money being pummelled in things are not improving or is it something else completely?
I’m really hoping that NHS workers can help me understand.

Some of my closest friends work for the NHS, I know how hard they work, this is not a thread to bash them. Neither do I want it to descend into politics. I just want to understand how all of my experiences in the past 2 years have been so slow and involved me pushing and chasing so much.

Many thanks for reading this far!

Shortage of staff is the main reason- breast Radiologists in particular, but also mammographers and advanced practices radiographers ( who are also trained to perform biopsies and report mammograms) Whether the department is working efficiently and effectively is impossible to say without seeing how they are using their funding, but they will be held to account for any breaches to national targets. I’m surprised about the 4 week wait for your initial appointment, less so about the delay with the results- not saying either is acceptable.

I've had an "urgent" referral made to rule out cancer, my appointment is in
12 months time! I get that's it's ruling out something they don't think it is, but on what planet is a year for an urgent referral in the least but acceptable?

Hope everything goes ok for you OP

2WW doesn't exist anymore. The government removed the requirement. www.england.nhs.uk/long-read/changes-to-cancer-waiting-times-standards-from-1-october-2023/

Lack of staff. Many more are ending up on the pathway than before as routine/urgent are often years wait so too long for intermediate risk

2ww rules were scrapped in 2023 btw
https://news.cancerresearchuk.org/2023/08/17/breaking-down-nhs-englands-changes-in-standards-for-cancer-care/

Struggling to find you links that explain the new version that aren't in medical journals needing Dr logins but if you Google it the ai thing explains the changes

Its crap. Noone is happy with it x

Thanks @Yellowundermarine - I had no idea about this!

Not cancer related but my endocrinologist told me there was a huge backlog on all paperwork. As they lost so many secretaries and administrative staff in cost cutting measurement. And their best one retired, with not enough money to hire a replacement.

Which meant when my endocrinologist said he will write to my gp to ask for a new prescription for me. It took months and I had to ask his secretary for the letter and there was months delay in starting the medication.

Our local hospital has a 3m+ backlog for scan reporting.
My dad had a scan in July and died in the November without the scan results. Id like to think they were bottom of the pile because there was nothing wrong.
But my friend with stage 4 cancer had quarterly scans and monitoring appointments . At her appointments they never had the scan results from her previous scans so all treatment was based on data which was 6m old. She used her right to choose and opted for a different hospital trust.
I think there just aren't the people to interpret and report on the number of scans going through.
And quite frankly, I'm not sure I would want to work in such a high pressure environment and I imagine stress levels and staff sickness are high, impacting on those staff who are still trying to hold the service together.

It’s taken me 3 months to get the report back for an MRI I had on my heart. I didn’t ring them until this week because I knew they are busy but I’m going on holiday and was struggling to get insurance till I had the results.

The systems also don’t speak to each other easily and are outdated Both my nieces work in the NHS one is clinical and the other is a manager some of the systems they work with are decades old and to quote them ‘shit’.

Its also so postcode dependant. I needed urgent physio. I waited 10 days, my BIL who lives 200 miles away has been waiting for 6 months for his urgent physio.

As somebody who worked in a hospital for 26 years, at this time of year it is because key people are on holiday. Sad, but true. I worked in project management and we needed input from clinicians as to their needs, timelines, clinical requirements - all sorts. I soon learned that there is no point at all in trying to arrange any meetings or to get any responses over the summer holidays. Either the people we needed were away, or they were ultra busy coping with the work from other people who were away.

Too many patients/referrals and not enough staff/appointments.

The hospitals don’t have enough money to recruit more staff. Hence why there’s lots of unemployed nursing and medicine graduates, etc.

people are dying due to delays. I know someone who had to wait months to start chemo after getting a diagnosis. People are dying in a&e waiting rooms. Dd had to wait 30 mins for triage while screaming with chest pains a few days after being diagnosed with bilateral pulmonary embolisms (so high risk for a sudden cardiac failure).

my dh nearly died while waiting to see a consultant. Even privately was going to be a six month wait. I told him to go to a&e one weekend and he was admitted as an emergency.

and my local hospital has sacked all the secretaries and most admin staff now as well which isn’t helping

I received a letter mid February, relating to procedures I had in September, October and November. The letter was typed at the beginning of December, but clearly not posted. Exactly a week later, I had the same letter. It had obviously been lost and someone had realised and sent another.

The toll on mental health from having to wait a long time, is immense.

Not quite the same and im not nhs but I was told I was within time scale for starting treatment. It was around 60 days from gp referring me to starting chemotherapy for an aggressive breast cancer. I naively thought if you got a cancer diagnosis youd be starting within a fortnight or asap!

Shortage of radiologists. Pension tax cock up - led to many doctors taking retirement to avoid huge tax bills. For same reason many no longer keen to do backlog clearing sessions at weekend.

Too many patients and too many scans. Clinical judgement has gone out the window. Feels like every inpatient gets at least 2 CT heads and a CTPA. Reporting of inpatient and emergency scans will take priority over any routine FU imaging. And as said above - breast radiologists are particularly short in supply.

Ridiculous inefficiencies. Our clinic numbers are limited by clinic room space. We have enough staff to see more new patients, but can't because we don't have enough clinic rooms. Instead of looking at practical solutions - converting a storage room, office, moving clinic location- the solution is of course 'working smarter or spending thousands on AI solutions'.

Sense of 'giving up'. There has been a definite mindset shift since over the past 5-10 years. Not helped by endless media reports on the failing NHS . The feeling that long waits are inevitable and nothing can be done about it. It was like this when I first qualified as a doctor in 2000.

Having said this, I work with some amazing colleagues and we do try our best. It's just hard to do when you haven't got a desk, clinic room or secretarial support.

I manage the rapid access breast service waiting list in a hospital.

We still use the 2WW as guidelines and the 2WW pathway is still available for a GP to select when referring patients.

Reasons for delays are as follows:

1. GP or patient is not aware they need to defer to a particular hospital on the Electronic Referal System.
2. Lack of specialised radiographers.
3. Consultant and junior doctors strikes.
4. Sickness and leave without replacements.
5. Equipment failure.
6. Follow up patients taking up spaces in new patient clinics.
7. Patient holidays.

Most of the time we run 2 weeks and under, recently been running at 3 weeks plus.

It's heartbreaking.

Dh has still never had a letter or report relating to his full body mri two years ago to check for cancer which was recommended after he developed a rare autoimmune disease.

he asked the gp but they had no information. Dh thinks no news is good news. He has more faith than me in the nhs.

We are not allowed to replace our admin and clerical staff. I have several consultants literally sitting around twiddling their thumbs because there is no one to book clinics or pull the notes for the booked patients so they can’t be seen. For want of a just over minimum wage clerical support staff, I have doctors on hundreds of thousands a year doing nothing. You couldn’t make it up (we are not oncology, but I imagine it’s similar across the board)

I think the 2WW was England a it’s not UK wide

wow, thanks for all the replies and for educating me.

I have been referred to the colorectal team for this lump so not another breast lump but obviously concerned about spread.

I’m a teacher so really, really understand the issues. Thank you for explaining so clearly why the delays might be occurring. It helps to understand what is going on. I will keep chasing and pushing.

The other problem is that the 2WW pathways were designed for rapid access but with a low pick up rate. In colorectal cancer the diagnosis rate used to be 3% i.e for every 100 people undergoing only 3 will have cancer. That is a lot of colonoscopies to get through to find 3 cancers. Patients then get frustrated becsuse they then get discharged with a letter saying cancer x exluded, but no explanation for their symptoms. But that's the only way they can get through the volume of referrals.

Just email/phone the consultant's secretary. They are responsible for getting the result to you.

Well I'm here to bash the NHS. It's not fit for purpose. It is shambolic. The service they provide is no longer good enough. A lot of the clinical staff are absolutely excellent and are trying to do their best with extremely poor resources but we can no longer continue with this pussy footing around and keep pretending that most of the NHS works because it doesn't.

I had a very similar experience to you. Had a biopsy and was told results would take a week or so. No results. I spent a week or so feeling increasingly anxious and trying to get through to someone to get results but the phone lines kept ringing out and no one returned my messages. I called the GP and was told they had no results through. Finally managed to get through to someone at the hospital to be told my results were with the GP. Several calls and online e-consults later and it turned out the GP did have my results they just hadn't opened the email.

Another example: I was invited to a follow up appointment via the NHS app for the results of a genetic test before my results arrived in the post. Spent two weeks basically knowing my result would be positive because I had been invited for the follow up but couldnt get through to anyone to confirm it. Again phone calls were not answered. Finally emailed and got a response back saying my results must not have arrived yet but theu had been posted. They were positive.

Another example- was invited for a face to face meeting to discuss some results. I sat waiting for my appointment for 40 minutes. When I fi ally was seen the doctor said to me "right what can I do for you"? I said "I don't know you invited me!!!"

There are so many examples like this. Poor care. Abysmal communication. Old fashioned processes which aren't joined up.

It no longer works and we need to stop acting like this is good enough. Apart from anything else the stress and anxiety of all the waiting and delays is incredibly bad for our health and for productivity.

I agree it’s a national embarrassment and we ought to be protesting in the streets.

I’ve had to involve my MP over my lack of treatment.

The nhs is a total disgrace and needs to go. We need to accept it can never fixed. We need to look towards European models and how we can make them work for us.

I’ve spent £12000 on my care as not one fucker would do anything to help me or diagnose me. Now I know I have a serious illness - I think if I hadn’t spent this money I would be dead now.

Im a sonographer and we deal with patients under 2ww rules for gynae scans. Unfortunately qualified sonographers are difficult to recruit and retain so we have a staff shortage. Not enough people want to train to do the job. The demand for scans simply outstrips our supply. Every day of the week staff are working extra hours ( paid on the bank - im not trying to be a martyr here!) to try and fill the gaps. It's simply not possible even with some staff working 6 day weeks. If we do find anything concerning on the scan these reports are flagged as having significant finds and patients are contacted within 48 hours with a plan. For normal findings there may be a delay in these being communicated by the referring clinician simply because normality is not prioritised when there are people with cancers to be seen first. This isn't good enough of course - the stress and worry it can cause - but its the situation.

We’re also an aging population. I’m comparatively healthy, but since I turned 70 I seem to have had more contact with the medical profession for various minor issues than in the previous 20 years. My DH who is even older has so many orthopaedic and eye issues now and I consider us both intrinsically reasonably okay. My friends are the same. Throw in the hundreds of thousands with real issues like cancer, heart, respiratory, diabetes, dementia, MH, I don’t see how the system can cope, and it’s not. I don’t know the answer, more money? I think we’ll have to go the way of most other countries and have a taxation/insurance model although many are so against it.The transition stage would be horrendous though.

There’s no secretaries any more. All been replaced with a patient hub where people spend two days plus ringing trying to speak to someone and give up. I spent two days ringing trying to cancel an appointment for dd and gave up. That’s far from an isolated case.