New NICE GP guidelines have huge ambition and potential

We must thank Henry for his detailed response which is welcome and insightful.
Anybody who has been thru the system (and no doubt their families) will be aware of that delays kill; I do not know of one cancer where delayed diagnosis benefits outcomes!! From my experiences I would say that the wasted resources caused by delay in treating people presenting with symptoms indicating a high propensity far outweigh the dubious savings… THE REASON THAT OTHER COUNTRIES ARE GETTING BETTER OUTCOMES IS BECAUSE THEY ARE DOING THINGS DIFFERENTLY; COPY THEM FOR GOODNESS SAKE. The game is up; stop trying to justify thing that are failing people and causing premature deaths.

Sorry for the delay in responding to your questions.

A few people asked whether these guidelines apply across the UK. Officially, NICE guidelines only apply in England. But Wales and, to some extent, Northern Ireland uses them too. Scotland uses guidelines produced by the Scottish Intercollegiate Guidelines Network (SIGN) and we hope that SIGN will also try to give GPs more flexibility to refer their patients. Sorry for not making this clearer in our blog – we’ve now clarified this in the intro.

NICE’s guidelines are publicly available, including a version produced for the general public. There’s also information on the signs and symptoms of cancer for the public on our website.

We hope that the new guidelines lead to more cancer patients getting diagnosed early. But cancer is a complicated disease to diagnose, and unfortunately it’s inevitable that some patients will still be diagnosed at a late stage. So medics such as GPs and dentists must review how they responded to those patients, to ensure they learn from any missed opportunities. And research needs to continue to develop ways to detect cancer more accurately.

A number of you expressed frustration that NHS resources are still being raised as an issue, and we very much sympathise with those comments. There’s no doubt that diagnostic services are facing issues such as staff shortages and a need for more investment. This is partly down to the fact that, as a population, we are living longer and are therefore more likely to develop several conditions, including cancer, in our lifetimes. But also improvements to NHS services like bowel screening are already resulting in more people being referred for cancer tests. These trends, along with an increased focus on the early diagnosis of cancer, led to a 50 percent increase in the number of urgent referrals for suspected cancer between 2009-10 and 2013-14. To make the most of the resources available, it’s essential that there’s continued innovation and improvement in how NHS and connected services are run and organised – but in some areas that must be backed up by more investment.

Overall, these guidelines are a very positive step, and it is encouraging that they now include specific recommendations for ensuring that patients who aren’t immediately referred are still followed up if their symptoms persist or change. However, as Anthony says – and research shows – patients want symptoms investigated at an even lower threshold.

It’s true that further lowering of the threshold would lead to some cancer being diagnosed more quickly. But NICE’s decision not to lower thresholds further will be based on their desire to balance any potential benefits, against the potential harms associated with carrying out tests for these patients (e.g. overdiagnosis of conditions that aren’t actually life threatening – leading to unnecessary treatment – and side-effects of tests). It is also likely that NICE did consider whether diagnostic services would be able to cope with larger increases in referrals. So to understand whether those decisions provide the best possible patient care, it must now monitor the guidelines’ impact.

It’s important to point out that cancer survival in the UK has doubled in the last 40 years thanks to considerable improvements in the diagnosis and treatment of the disease. And while the UK continues to lag behind the best performing countries in the world, we also have fewer doctors, nurses, radiographers etc and diagnostic resources per 100,000 patients than those countries.

So Cancer Research UK will also be keeping a close eye on the effects of the updated guidelines. And we hope that the report from the independent cancer Taskforce, due soon, will help tackle some of the issues too. Earlier diagnosis of cancer is one of the most effective ways to increase cancer.

It appears from some of the comments that even more resources are required.

As someone who was diagnosed after 30 months of bleeding I do not think it was lack of resource that caused the delay but lack of judgement… The previous guidelines had been in for years and the outcomes must have indicated a link between late referral and poor outcomes. The British people are not daft. If people are remotely suspected of cancer the medical profession has a duty to tell them; even if they do not have the capacity to treat them… THEN THE MONEY WOULD BE DEMANDED and no doubt found?

Since I am someone for whom it took over 18 months to get a referral for my breast lump (and in fact I am only alive today because I had private health insurance which eventually paid for the mammogram), I welcome the new guidelines. I think there needs to be a change of culture among GPs because one of the things I can’t forgive is how I was patronised and made to feel really small and stupid because I was afraid that I had cancer (as indeed I did).

There are so many examples in the comments about people suffering from a lack of early diagnosis and treatment. We need more diagnostic facilities, staff to use them, specialists and access to treatments. Many people say the NHS has a lot of money and wastes it. Certainly, a lot of money is wasted on things like Commissioning and tendering, but otherwise, it is difficult to find leaner organisations almost anywhere. Perhaps we need to look at other countries like Germany. Aside from income tax which is largely similar to ours (although progressive) (i.e. between 0 – 45%), people have to pay for health insurance e.g. 400 euros/month. This gets them access to probably more than we get. It is about time we bit the bullet and started paying as much as our European cousins do for healthcare in order to get the same levels of access and treatment.

my mum had the same experience as Karen Patterson’s dad. She was told it was a stomach ulcer, and she is not here with us now. Previously she had been going to her GP complaining of a lump in her breast, for years she continued to do that (10 years to be exact) she was diagnosed with breast cancer after 10 years, she went through chemo, surgery, the lot, she would have been 5 years all clear last year, but then this ‘stomach ulcer’ which turned out that the cancer had spread to her spine and liver. By the time her useless GP referred her, it was too late. (she would have been only 52 had she made it to her birthday, she left behind me and my 4 younger siblings, the youngest of which is only 14)
Most GPs are useless these days, only seem to care about the money… well thats what they are like here in Basildon and Wickford anyhow and its not the first time that the GP mum was seeing has misdiagnosed and the patient meeting their maker due to the misdiagnosis.

I have read Matt’s response to Maggie and make the following observation…

The NHS has a huge amount of investment every year and politicians and clinicians have been promising improvement for as long as I can remember. The constant ‘resource whinge’ would have more credibility if we didn’t have to read about the extortionate cost of agency staff.and other wasteful practices such as treating the more advanced stages of curable cancers…

I have supported Cancer Research UK for 25 years but I cannot help wondering about the huge disconnect between those who promote the idea of early diagnosis and treatment and the reality that some GPs appear to be fearful of referring.

Peoples ability to detect a discrepancy between what the medical profession says and what it does should not be underestimated

Excellent – at last. My dad was very ill for months and was eventually told he had a stomach ulcer when in fact he had cancer. After a huge operation and six months of recovery, he tried chemo which he couldn’t get away with, only for his cancer to return. Sadly he is not here now. I can’t help but feel if an earlier diagnosis was made, he would still be here.

The new guidelines are long overdue and most welcome but come too late for my husband. He saw his GP because of back pain and was initially prescribed paracetamol. The pain continued and he was sent for X-ray which showed two of his vertebrae were crumbling. The GP suspected cancer and ordered test after test and various scans which obviously took a considerable time. None of the tests indicated cancer so the GP did not know to which specialist to make a referral so eventually an appointment was made with a rheumatologist. More tests followed, all the while my husband was becoming more ill. He was eventually told in the most uncsympathetic way that they knew he had secondary bone cancer but as the primary was not known the only treatment would be palliative. He was naturally devastated and as lay people we could not understand how this could be possible. We had never heard of cancer with an unknown primary. My husband could not accept that he had not seen an oncologist and had basically been told to go away to die. Through a work colleague(a nurse,) we saw the oncology matron at our local hospital and she, to use her own words, asked a favour of an oncology consultant friend who saw my husband. The consultant was sympathetic and caring and managed my husband’s case until he died. I know now that the outcome for my husband would not have been different but his psychological and mental health could have been better had he felt that he was he was not being fobbed off.

This is well overdue and it is a reflection on how poor early diagnosis of cancer is… This view is reinforced by the fact that so many people are diagnosed as a result of A&E presentation and the poor outcomes across the board for cancer.
I cannot help wondering whether this is a result of downright incompetence or a blithe acceptance that a certain number of premature deaths are inevitable. Why wouldn’t an experienced GP refer someone (with even a 1/100 chance of cancer) for tests early rather than late? The shameful overuse of the resource excuse is not acceptable to those who will die!!!.

What about dentists? Our dentist of 33 years diagnosed my son with an infected impacted wisdom tooth which turned out to be stage 4 mouth cancer with lymph node involvement. 2 years later he has metastases in his lungs. Apparently, because my son was 18 years old and a non smoker at diagnosis he didn’t fit the criteria for this type of cancer so it’s understandable said ‘professional’ missed it. GPs and dentists just need to accept that cancer can’t be compartmentalised and the so called governing bodies who are allegedly in place to protect patients take stronger action against those who drop such gargantuan clangers while still enjoying a fat salary. Thanks for nothing General Dental Council.

It’s disturbing to read story’s of people dying from misdiagnosis of cancers having to wait too long throughout the process and late referrals. When the system works it gives people their life back. I pray these updated guidelines make a difference. I myself found a lump 4 years ago in my breast on Christmas Eve. My doctor got me into the breast clinic within 2 weeks; I had my 1st appointment within 2 weeks after that, each part of the journey took no longer than 2weeks. And I had to have 3 biopsy to get the right diagnosis at the breast clinic (having been told I did not have cancer after the first test). Everyone at the clinic (Peterborough hospital) were caring as where the nurses at Adenbrookes in Cambridge where I travelled every day for 3.5weeks for my radiotherapy.
Throughout this whole terrifying process I pushed and questioned every move/decision/test to understand and make sure I was understood. You have to take some control, this is your life, don’t let the system swallow you up.

About time, most welcome. It took my gp far too long to be referred then the referral was standard not urgent. I am one of the lucky ones, but too many lifes have gone due to poor gp referral times.

I am welsh and very very upset about devolution. Without the English NHS we are screwed! Well done NHS England for listening and reacting. A cancer diagnosis is not unusual in today’s world and the sooner it is stopped in it’s tracks the better chance a person has of becoming cancer free. I have heard too many stories of people returning to their gp, time and time again before referral and diagnosis. I didn’t have symptoms, mine was found by accident and I am very grateful to NHS England.

It’s very interesting to read and a great step forward in early diagnosis. But you should make clear when sending your newsletters to a UK-wide audience, that this is only applies in England. There are other things happening in the Nations. Health is devolved!

I believe this refers to England only. The article makes no mention of this. Cancer Research should be clearer on the different parts of the UK.

I am pleased that the gps have been given new guide lines, but unfortunately it’s came to late for my husband, who died last year because it took months before his gps referred him for test at the hospital. Even when he was diagnosed with aggressive bladder cancer, he still had to wait three and a half months, before they operated on him.Also chemo that was needed wasn’t funded.
It is not only gps referring patients earlier, it is also operation being done quicker, before the cancer has chance to spread. What is the point of coming up with a drug that will help cure cancer, when a patient is denied it, because it is too expensive.

This is all well and good, but my GP simply refused to refer me for further investigation back in 2006, stating that ‘my symptoms didn’t warrant investigation on the NHS’. The symptoms were caused by cancer. I have heard that other patients had problems with her too. She is now with another surgery after I assume she blotted her copy book once too often. However, I’m sure that hasn’t stopped her being a negligent / incompetent GP.

Are these new referral guidelines publicly available?

I cannot speak highly enough of the GP’s nurses in my own clinic (weavers medical centre Kettering) . I became ill in mid November 2014, and was found to have liver, bile duct & gall cancer by mid December , I was booked for surgery in mid January 2015 @ Leicester general hospital ( who were fantastic ). The NHS is in a good state , and it is run by humans who will make mistakes ,and make errors , everybody does. These new early diagnoses plans can only be good.

My husband’s doctor was treating him for neuralgia pain for months before he referred him to hospital for an MRI scan as his pain levels were extremely high. He was then diagnosed with a rare form of Maxillary Sinus Cancer, which was stage 4 inoperable by the time of diagnosis. Unfortunately, despite a gruelling treatment regime, my husband passed away within 10 months of diagnosis. If his GP had referred him sooner, who knows what the outcome could have been.

I hope the consultants at hospitals take note!! They missed mine for 4 months I was in and out of hospital and saw the same useless consultant that keep telling me it was all in my head..4 months later I was diagnosed with stage 3/4 Iberian cancer – she had previously arranged for me to have my gul bladder out! Nice work! Let me in so long I am now at high risk!!

We’re very sorry to hear about your experiences, Maggie. If you’d like to talk to one of our nurses, they can be reached on 0808 800 4040.

The reason we think these new guidelines will make a positive difference is that they give GPs greater flexibility to send patients with concerning symptoms either to a specialist, or directly for tests such as CT scans and endoscopies. They outline the care patients should receive but work and investment is clearly needed to translate that into a reality within the NHS. As your story demonstrates, the way that patients are referred within the NHS needs to improve in many areas – GPs and specialists services across the country should use this as an opportunity to review and improve that.

We also know that NHS services are struggling to keep up with demand, and waiting time targets are routinely being missed across the UK. As Dr Roope says above, these issues will not just go away: fixing them will require innovation and, in some areas, more investment. These guidelines reflect the latest evidence on how patients should be referred – the NHS must now strive to ensure patients can benefit from them.

Matt
Cancer Research UK

I read with interest the article in the Times re GPs referring suspected cancer more promptly. I had a basal cell carcinoma removed from my face 5 years ago, and now I have a possible reoccurrence. My GP sent a Referral letter to Hammersmith Hospital, which ended up in Charing Cross. CX gave me an appt, then rang and said they’d made a mistake and I was to go to Hammersmith. The doctor I saw had no Referral letter. She said I needed a biopsy, and CX Hospital has given me an appt two and a half months from seeing the doctor! My GP sent me under ‘the Two Week Rule’. CX Hosp. won’t answer my GP, or my letter, and I now have to go private. So what is the good of sending even more people to hospital for a diagnosis if they can’t even follow the ‘Two Week rule’ now?!