The second part of a roundtable where primary care leaders joined Pulse PCN editor Victoria Vaughan to discuss challenges and progress in early cancer diagnosis
Victoria: This year there was an added focus on improving referral practice, particularly in disadvantaged areas where early diagnosis rates are lower. What work have you done on this?
Dr Binodh Chathanath, CD at Bexhill PCN, East Sussex
Our cancer care co-ordinator is working with our learning disabilities care co-ordinator and we’ve got another care co-ordinator who looks after people who are vulnerable and in care homes. We have produced a leaflet, which is really straightforward, so that people with learning disabilities and their carers can understand about cancer screening programmes.
We are using cancer co-ordinators to contact carers and introduce themselves, asking permission to visit and talk to them in person. We’ve worked with our integrated care system (ICS) lead because this is one of our programmes to improve health inequalities and increase cancer diagnosis in people with learning disabilities, serious mental illness, and people from ethnic and Asian and African backgrounds. These are the main areas we are concentrating on.
We are working with public health in our area too. It gives us loads of information about pockets of deprivation.
Dr Shanika Sharma, CD and cancer lead at Barking and Dagenham PCN, east London
There are loads of research studies. Locally for lung cancer we’ve got SUMMIT, an early cancer detection and lung cancer screening study from University College London run by University College London Hospitals NHS Foundation Trust. As part of this, people are being offered a low-resolution CT scan and we’ve caught quite a lot of cancer diagnoses through that because we have an area of high lung cancer prevalence.
Also, we’ve been working closely with local voluntary sector organisations to tackle health inequalities. As part of our health inequalities bid, a chunk of funding was given to our voluntary sectors organisation lead and they’ve developed a programme of locality leads. There is a health inequalities lead in each of our six PCNs in Barking and Dagenham. Their role is to map the assets in the community and bridge those gaps between different workers – care co-ordinators, social prescribing link workers and all the other wider members of the PCN team.
Whatever we do in primary care, some people won’t come to us so we need to go to them.
Dr Bal Dupa, CD at Oldham East PCN, outer Manchester
One of the most amazing successes – which has been a sea change – is the ability for PCNs and practices to employ care co-ordinators. The amazing thing about the PCN DES is being able to locally look and get these ARRS roles on.
Shanika, Baldeep and Binodh are six or seven months ahead of us but I’ve got the ambition to get there. For me as an old GP that’s an amazing legacy for the PCN DES – to be able to employ some of these care co- ordinators in practices. We’ll get the dividends of that as time goes by. We’ve just done a piece of work to get people on board with that.
Dr Kanchan Sanikop Cancer lead for Brierley Hill PCN, Dudley, West Midlands
We have a designated cancer care co-ordinator who’s taking the lead on this. We support her. But from what I’m hearing today, I think our services are a little bit disjointed. I’m only involved in our PCN part and not in the wider Dudley area.
It would be helpful to co-ordinate care more with other PCNs because there’s always something to learn from other areas to increase our uptake of screening.
Our cancer lead is doing a lot to increase the uptake of breast cancer. We are sending out messages to increase our first breast screenings because we found that our rates were really low – maybe about 40% when nationally they are about 70%.
I also find that secondary care and primary care in our area are not working together at all. Even if we see more patients face to face, our secondary colleagues are still doing telephone triage.
So for two-week cancer referrals, secondary care would first do a telephone consultation. The upper GI referrals do well, as do referrals for obstetrics and gynaecology.
But others like neurology are getting appointments after two or three months.
I feel we all have to work more together, not just in primary care.
Victoria: So in some cases the two-week referral results in a secondary care phone call rather than a face-to-face appointment?
Kanchan Yes. So we are not in any way guaranteeing a patient will get whatever investigation they need within the two weeks of referral.
Victoria: Is this something others are experiencing?
Shanika We looked at this with our SEAs escalated it to our local trust. We said look, GPs are sending people for scans. The trust did an internal enquiry and found problems. We were able to troubleshoot through this but it’s really important to keep the process going. I completely agree about the two-way conversation. Unless we have that relationship [between primary care cancer leads and secondary care], it’s not really happening. That integration is pivotal to move this forward.
Bal When we talk about health inequalities, some are in accessibility and pathways. Shanika, you say you’ve got access to scans. We don’t have that in Oldham. There is variation nationally in diagnostic access, irrespective of diagnostic centres. And the elephant in the room is why have you got access to CT scans, Shanika, and we have not? The conversation about health inequalities [is not just] outcomes; it’s also diagnostics. We’re lucky in Oldham, we’ve got a rapid diagnostic centre. We put a bid in and we’re very proud of that.
Dr Binodh Chathanath, CD at Bexhill PCN, East Sussex
We’ve got two rapid diagnostic centres for East Sussex. We are still looking at governance structures. One problem is this – who is going to pick up the results?
Dr Baldeep Syan, GPSI oncology in Hammersmith and Fulham, west London
I’m the clinical lead for our rapid diagnostic centre at West Middlesex Hospital. We’ve got north-west London fully covered with GPs to access rapid diagnostic centres. We’re a two-week wait. It works well and supports our local GPs. They’re not worrying ‘does the patient have cancer or not, how am I going to investigate it?’ It can go down a vague symptom pathway if it doesn’t fit along another pathway. Binodh, you mentioned the issue of who picks up the results. Once the GP has referred a patient down a two-week wait pathway it’s the responsibility of clinicians at the diagnostic centre to pick up the results and carry out the necessary tests.
Shanika We have a rapid diagnostic centre. I find it helpful and valuable because, as you’ve mentioned, patients are getting more complex. They don’t perfectly fit into one cancer diagnostic pathway so it’s nice to have the rapid diagnostic centre. I’m a GP trainer and my trainees value it as well when they’ve got that sort of uncertainty, when they’re wondering is this upper GI, is this lower GI, where do I send this person?
Also, there’s an additional safety net. The other thing we’ve picked up on our SEAs was a couple of individuals who were referred down one cancer diagnostic pathway, and were found to be clear, but then ended up having a cancer in another organ which wasn’t followed up. How do we make sure these people are looked after and their care is streamlined and communicated between the different streams?
Baldeep For our pathway, we have a filter function test. Our referral criteria are vague – to accommodate that GP gut feeling. Then we have a requirement for function tests to be done – a FIT, a CA125, other blood tests. Usually in those you can pick something up. They help decipher where the patient should go.
Bal With the case Shanika mentioned, if you’re a gastroenterologist and the patient has vague lower abdominal symptoms, you examine them and if there’s a mass, you refer them. But you can’t do that in telephone triage. It is a reflection on secondary care – it seems to be behind us in moving back to the face-to-face consultation. Maybe we need to be more forceful to get them back on board with this.
Victoria: What would you like to see in next year’s DES and for the future in terms of cancer diagnosis?
Bal I’d like the whole system to be accountable for cancer outcomes, not just my part of the system for my cancer care. We need to be much more ambitious. Let’s put the whole pathway in the DES, cancer care for everybody involved in the pathway, not just a referral actioned in two weeks.
Baldeep There should be work linking primary and secondary care for cancer, and for diagnostics. I think early cancer diagnosis in the DES needs to span the breadth of patient education and diagnostics. And also treatment summaries and making sure treatment happens. We’re lagging behind all that. [The DES] needs to be a lot broader.
Sarah Forster, Strategic business and transformation manager at Medics PCN, Bedfordshire
I am a great believer in investigating the referral pathway. I assumed each practice would do each referral pathway differently but there’s even more variation than that. Actually each GP does it differently, and so do locums and other members of staff. From the data we’ve seen in our PCN, things aren’t being picked up in primary care any more. Cancers are being diagnosed with other presentations, and also not through screening. [The DES] needs to revisit what it asked in the first place because I would argue that many PCNs haven’t done that.
Shanika There should be a standardised approach up and down the country in terms of access to diagnostics, access to rapid diagnostic centres. It’s unfair if a PCN doesn’t have access to rapid diagnostics because it is not commissioned for the PCN and it has to be done at place level. Also we need to make sure cancer diagnosis is a priority for place-based partnerships and for integrated care boards (ICBs).
Kanchan My wish list is more integration pathways between secondary care and primary care. The other significant problem we have faced is coding. We depend on coding – being able to pick up how well we are doing. Coding is not being done properly and is a huge issue in our area. There’s no consistency in practices or even in different PCNs and how we pick up the referral rate and all those things.
Binodh The most important issue is stability. [We must]remove uncertainty about the DES and the contract. That’s a big risk for me as a CD – what’s going to happen in 2024? We’ve got so many people employed through the additional roles reimbursement scheme (ARRS), and I’m cautious every minute because I’m answerable to all these people.