Realistic NHS/private wait times for major treatments

[Perroquet]

[Posted previously under chat but didn't get replies, realised this is probably a better place; MNHQ please feel free to delete the earlier post]

Luckily I've been very healthy all my life and never needed any hospitalisation or serious medical treatment beyond being seen by a GP or urgent care centre for sprains and cuts. I've been hearing so much though about the huge NHS waiting lists and patients unable to access timely care for serious conditions. I haven't heard any such stories from my close friends here but that might be because we're all relatively young and healthy. I know I will sound naive but can I ask how bad the unavailability of timely treatment and appointments with senior doctors/surgeons really is, especially in London and other big cities? I need a reality check in comparison to the situation below.

I was just talking to a friend in a major city in America with excellent hospitals. Her parent (age 60) has been having major health issues. My friend described her parent's treatment timeline and it didn't sound great at all:

1. Parent went to hospital ER (A&E) with severe abdominal pain and fever and not sent home till 20 HOURS later. Blood tests were done quickly but huge wait time for scans. Scans detected abnormality, was referred to surgeon for followup after 2-3 days.
2. Surgeon determined surgery was needed to remove and diagnose the abnormality (suspected cancer); best done as early as possible but not immediately life-threatening; surgery scheduled 2-3 weeks later (after surgeon returned from holiday).
3. Surgery done and biopsy confirmed an aggressive form of cancer, referred to oncologist. But post-surgery complications arose and another surgery had to be scheduled (recovery from this was very slow), delaying cancer treatment by several months. In the meantime at home after the second surgery, the patient had no way to directly contact the surgeon or an equivalent expert when issues arose. Phone calls would be returned by a member of the surgeon's team, usually a very junior doctor or nurse who only gave general (and often contradictory) advice and wasn't specifically acquainted with the surgical details of the patient's case.
4. When patient finally recovered from two surgeries and was ready to start chemotherapy, hospital informed patient that an outpatient surgery was needed to insert a chest port catheter for chemo. The earliest date available for this port insertion surgery was one month later, delaying chemo again. PET scan booking was also extremely limited and had to be scheduled many weeks in advance.
5. Chemo sessions running on schedule but the oncologist rarely sees patient; the nurse manages everything.

All of this was at one of the best hospitals in America. I imagine NHS treatment timeline without going private might be similar or worse, but how does this compare to the private insurance route in the UK, especially in big cities like London?

DD waited 6 months on the NHS for major and time critical spinal surgery - this was actually good compared to a lot of other teenage girls we’d met who also had scoliosis. A close friend waited 2 years and one girl was forced to wait 5 years! In that time deteriorated to a point where it was putting pressure on her lungs - absolutely scandalous. Privately it would only be about a 6 week wait as in desperation we enquired. Unfortunately like most people we didn’t exactly have £50k sitting around..! Safe to say we learnt our lesson and she is now covered to the max with Bupa.

Well (without being trite), thank goodness my family member didn't live in the US.
Under the NHS:
Referred under the two week pathway, cancer diagnosed very quickly and chemo started within a fortnight of the consultant's appointment.
Chemo was to shrink the tumour prior to surgery which happened within 10 days of the reduced tumour size being reached.
Yes, there are many many failings of the NHS, but there is also much to recommend it.
However, I would say OP. that this sounds like a complex case

@Pebbles16

Well, your family member was treated a hell of a lot more quickly than me then. I doubt their situation is normal at all for the dilapidated NHS. Here is my timeline for cancer treatment on the NHS in a London suburb starting in 2022:

Two week cancer pathway referral

Over FOUR weeks later initial appointment finally allocated. I phoned PALs, GP etc to try to get it sooner.

At first appointment, clear this was a locally advanced or metastatic stage aggressive cancer: Stage 3c, grade 3 cancer (almost stage IV and highest grade, extremely fast growing)

A further THREE weeks wait till second biopsy deemed necessary. Highly aggressive subtype identified. This was necessary to determine certain treatments in my case type of immune therapies added to chemo.

A further TWO weeks for whole body CT to stage between stage III and stage IV. No evidence of metastatic disease, so stage III.

A further 2.5 weeks till a slot for my chemo to start could be fitted in.

From then on, there were no delays, but the NHS definitely increased my risk of this cancer returning by delaying my appointments and treatment for so long after my 2WW referral .

If I'd had PRIVATE INSURANCE, which I desperately, desperately wish I had, or lived in a country with faster health care (like most of western Europe) I could have had my initial appointment in about 2 days from referral, and I imagine treatment would have started 2 months earlier, which could ultimately still make the difference between this cancer coming back or not.

Private waiting times are determined by how long it takes you to save up/ how rich you are

I am very sorry you had such a poor experience. I can only report my experience - which I realise was very lucky.

Just for comparison - one of smaller european countries (state health provision) :

• ultrasound done and few days later admitted to hospital to have bloods, MRI, CT and endoscopy, all done in three days
• a week after that admitted to hospital for stent insertion
• major surgery a week later
• 4 weeks after surgery - the appointment with oncology department to discuss further treatment
• a few days after that port inserted
• chemo started one week after

Very quickly and efficiently, all appointments made in advance by the team, so no need for any calls/follow ups. All test results, scans etc provided to GP and to the patient by default.

Thanks @Pebbles16

Yes it was torturous and terrifying waiting so long. It is seriously sub-standard with those waiting times and shows how the NHS is simply not good enough considering how wealthy the UK is and comparing it to the speed of cancer care in equivalently wealthy countries.

The actual treatment itself was generally very good apart from the odd blip here and there. I am definitely more scared of recurrence now though, after having had to wait so long - it could have spread in that time. A clinician told me at hospital that my cancer most certainly will have grown during those weeks' wait.

I'm glad your family member received treatment at an appropriate speed.

Exactly my point @user2207

I hope the patient is doing well (you or whoever it was). The speed of diagnosis and treatment sounds how it should be.

I know it's like that in several western European countries where there is also universal health care. The private vs NHS situation in the UK is really sad and desperately unfair - often enough it will mean the difference between survival or death.

@SummerCycling
I absolutely agree- sometimes the speed of diagnosis is extremely important and can mean the difference between the positive outcome/cure and prolonged treatment with uncertain results. I feel so sad for anyone battling the delays in the NHS (and I appreciate the reasons are multiple for this), but it seems so unfair to be unable to proceed with life saving treatment as soon as needed.

Cancer diagnosis is a waiting game. It involves multiple disciplines and each patient is discussed at a weekly multi- discipline meeting. Some tests take time, for example the oncotype test for stage 2 breast cancer has to go to US after surgery and the staging is determined. It plays an important role in further treatment planning.
So although it feels like the delays are likely to affect your outcome, without them the treatment plan may be ineffective.
The majority of breast tumours can take 2-5 yrs before they reach a size than can be felt ( 50-60% of breast cancers are first felt by the patient around 30% are picked up through screening). Not all cancers can be treated so there is no real impact on outcome by early diagnose.
There is a suggestion that we should move away from the use of the word cancer. Not because of the fear it causes but because even those that affect one area, such as breast cancer, are difficult to classify and treat as one single disease. Treatment is very much bespoke, and as a result everyone’s experience is different.
When I was diagnosed with breast cancer I had no idea just how many types there were, and just as many treatment regimes.

In the US you continue with treatments that your insurance company are happy to pay for. They are the gatekeepers and when the funding runs out it has a very personal impact. In the UK the system is very different. There can be funding ceilings, for good reason, but one of the downfalls of the NHS is that it is a product of its own success. The average age of death has gone from mid 60s to the upper 70s. Keeping people alive is an expensive business.

DH was found to have cardiac issues just before lockdown. Diagnosis took nearly 12 months as a result, medication didn't help and eventually he was referred to a regional specialist cardiac centre. From diagnosis to surgery (for atrial fibrilation and atrial flutter) took 20 months. Private wasn't an option due to the surgical technique and lack of ITU facilities in local private hospitals. It was certainly very eye opening, and we've both agreed that if either of us are diagnosed with something like it in future, we'll seek out a specialist unit in London at the start rather than try and manage it locally.

I can’t comment on fully private or fully NHS but my dad started off private and had a biopsy 2 weeks after seeing the consultant. It took over a month to get the results but that’s because they needed another opinion. Diagnosed with cancer and the private consultant had already booked him in to see the nhs oncologist later that day. All treatment nhs from then on, had a PET scan a week later and started his chemo within 3 weeks of his diagnosis. I’ve been so impressed with the speed of his treatment following diagnosis.

That being said he was referred on the cancer pathway about 6 months before but the nhs consultant didn’t properly investigate and basically told him to come back in 6 months. Luckily he could afford to see someone privately because you could tell there was something wrong! He had to spend about £2-3k to get the diagnosis.

Private treatment is usually quicker than the NHS but it’s not as quick as it used to be as so many more people are using it.

@Angrymum22 When you say the majority of breast cancers - I suppose you mean Grade 1, Luminal A, oestrogen positive ones? - yes, they are very slow growing aren't they, and usually need minimal treatment and have an excellent prognosis. They are the most common type and the public image of breast cancer.

However, mine was unfortunately not oestrogen positive and was grade 3 rather than 1. It grew astronomically faster than taking 2-5 years to be large enough the feel. In less than 2 years, it was already all over my lymph nodes (up to collar bone) and an enormous mass. My subtype can go from nothing to stage IV in a year. It used to be completely deadly until targeted therapies around 20 or so years ago which have made a very significant difference to survival, although it remains a super-aggressive type of breast cancer that often metastesises to the brain. Early diagnosis and treatment is vital and the delays the NHS forced me to endure put me at increased risk of recurrence.

I didn't have the oncotype test. Not for my subtype: my type needs chemo at every stage. There was no justification for the delays. The reason was that no staff were available to do the biopsy and the CT was fully booked. For WEEKS. As for my original 2WW appointment being so delayed, they never did explain why.

I agree with you completely about the complexity, and that breast cancer is a collection of various very, very different diseases with different drivers behind the cancer, different prognoses, treatments and outcomes. I think that applies to all body parts though: there are multiple diseases all called 'cancer' in each body part.

You said they were considering changing the name from cancer. I would support that. People are misled with breast cancer survival statistics because the majority have such a slow growing, easy to treat subtype, and the rest of us in the minority face far worse statistics and awful treatments with months of aggressive chemo, weeks of radiotherapy, etc etc and worse prognoses BUT the general public think breast cancer is simply a lumpectomy and possibly a pill for a few years. I wish they'd name each cancer according to the subtype, driver, grade, as well as body part.

@Snackpocket I hope your Dad will be ok.

Ct scan on the Friday, found tumour in colon, emergency op on Saturday night. Chemo started 8 weeks later. That was august, all cancer out and recovering well.

During a routine lung scan in hospital in my discharge day, they found a problem with thyroid. Invited for a ct and thyroid uptake on Halloween last year. 8 weeks later a few days before Christmas got a call there was a mass on my medistium area. They don’t know what it is. An option was to monitor it, which I have chosen. So got a ct scan on Wednesday to see if it’s grown.

first tumour was so quickly treated. Second slow and no hurry. Worried sick.

Thank you @SummerCycling - I hope you are doing well.

Dad has just finished his chemo and is now moving onto a maintenance regime. He’s been very lucky that his cancer was contained, caught early and has responded very well to the treatment.

Thank you all for sharing experiences, and my best wishes to those of you undergoing treatment or with family undergoing treatment currently.

I spoke to my friend in America again and she says that there was actually a whole MONTH between the initial consultation where the surgeon suspected cancer, and the surgery where the mass was removed. The biopsy took another week or more come back (no 2nd opinion needed), so in all there were 5-6 weeks (would have been 3-4 if the surgeon hadn't gone on holiday) between suspecting cancer and getting an official cancer diagnosis! The other main delay was another MONTH between the PET scan for staging and the insertion of the port for chemotherapy, due to fully booked port insertion surgery dates. Sounds like the 2 week NHS scheme here is THEORETICALLY better, but as SummerCycling's case shows, that's not always true.

Obviously I don't have enough statistics to make a sweeping generalisation, but it sounds like going private in the UK would be at least as fast as or better than in the US where private is default. It just sounds like there's so much doom and gloom about healthcare here in the UK now, with the NHS strikes (I fully support medics striking for better working conditions and pay) leading to uncertainty and cancelled treatments. But perhaps the US is really no better off; they don't have strikes so it's just not talked about as much!

@Shityshitybangbang I'm sorry to hear that, I completely understand your fear. I think your scan will have been yesterday. I hope you get the results soon and that they are what you're hoping for xxx

@Snackpocket I'm pleased to hear that about your Dad, and long may that continue.

@Perroquet Cancer survival statistics show that the US is far better than the UK at treating cancer. For example, take a look at the link below and scroll down to International Comparisons.

https://www.nuffieldtrust.org.uk/resource/cancer-survival-rates

Not only is the US better than the UK, but so are a lot of European and Asian countries. We are lagging behind in Britain. Forcing desperate patients to wait for diagnoses and treatment will be a big part of this, as will access to sufficient and timely checks at locations that people can get to. I have lived in several countries and can say that those other countries all had much better access to preventative health care including cancer checks than the NHS offers. The treatment itself once it started was good though, on the whole. Just horrific delays.