Signs and symptoms are important for doctors but sometimes they present too late. Clinicians and health managers in London have designed a collaborative cancer system which could give many patients a chance of a longer life – and save the NHS much-needed cash. Peter Blackburn reports
Ambitious building projects surround the UCLH (University College London Hospital) Macmillan cancer centre, tucked in between the consumer chaos of Tottenham Court Road and the literary and cultural hub of Bloomsbury.
The cranes dominating the skyline mark the soon-to-be arrival of a pioneering underground facility for proton beam therapy, state-of-the-art operating theatres and wards for cancer patients and a new throat, nose, ear and dental hospital.
But the innovation extends within the walls of the cancer centre too. In a series of rooms, which look over the works, a handful of clinicians and managers have set to work on an equally impressive, if slightly smaller scale, project – a new way or diagnosing cancers which could benefit patients, clinicians and the taxpayer.
The project is an MDC (multi-disciplinary diagnostic centre): a new pathway for patients who could have an often hard to diagnose gastro-intestinal cancer.
The system, in simple terms, sees GPs in the area covered by the MDC told to refer patients where a troubling, or confusing set of symptoms have been identified, but would not normally elicit an immediate referral to hospital. In many circumstances those vague symptoms would rumble on for some time, over many GP appointments, before, understandably, resulting in any sort of referral. It could hardly be more important.
David Graham, consultant gastroenterologist at the trust, and the leader of the project, says: ‘In the [lower GI] normal pathway 85 per cent of patients once symptoms and signs develop have T3 or T4 symptoms that are incurable. The data tells is that in 85 per cent of cases it’s too late. That prognosis is that 12 per cent of people have a five-year survival rate. The entire system is based on signs and symptoms that we know can’t help us. We have to find a better way.’
The MDC aims to replace the existing system for diagnosing cancers which suggests patients with suspected cancer should all get an urgent referral within two weeks once a GP has identified potential cancer.
While that system sounds sensible enough, the reality is that it simply does not work. Research suggests only 40 per cent to 45 per cent of patients are diagnosed through this pathway and many others are diagnosed in A&E or in other hospital wards, possibly after many GP appointments – a scattergun approach which is costly to the NHS finances and the quality of life of patients.
Where there is failure, there is opportunity – and that is where the MDC comes in.
The inspiration for change came from Denmark where rapid diagnostic centres and multi-disciplinary diagnostic centres – essentially hubs for diagnosing and rapidly treating potential cancer patients – have had a major impact on quality of care and outcomes.
The service has seen a ‘rapid diagnostic pathway’ introduced with a five-part referral criteria, replacing the prior system which would see patients returning to the GP on many occasions before getting anywhere. The criteria for referral are: new unexplained abdominal pain, unexplained weight loss, painless jaundice, new and persistent unexplained nausea or loss of appetite or GP gut feeling or concern that there is underlying GI cancer.
Those patients are now fast-tracked to the MDC for diagnosis – with expedited slots available for scans and treatment packages ready and waiting if the diagnosis is positive. It is a hugely hastened process – and a much more personal, tailored system, with just a few clinicians involved. The aim is for all patients to be diagnosed and have seen their consultant within 28 days of the referral.
Alongside the hastened diagnosis and treatment – patients’ data for various risk factors is collected and samples taken to advance biomarker trials which could help drastically speed up diagnosis in the future.
In theory, faster diagnosis means saving lives, saving money and saving patients a period of uncertainty and worry.
And in London – where the service has been in development for several years – the impact is beginning to show.
So far, around 5 to 10 per cent of patients attending have been diagnosed with cancer and the number of patients has grown from around five a week to up to 30. Every patient, regardless of diagnosis, is either discharged back into the community with a plan for treatment, or admitted to hospital.
Gudula Khan from Hampstead was one of growing number to experience the MDC.
‘I had a routine blood test for diabetes at my GP surgery and then received a call from the practice to say I was very anaemic,’ Ms Khan says. ‘My GP was concerned that it could be something serious, even though I felt fine, and she insisted on referring me to the multidisciplinary diagnostic centre at UCLH for a fast diagnosis.
‘At the MDC I met Vicky, the nurse, who asked me some questions and arranged for me to have a CT scan as well as an endoscopy and colonoscopy the following week. The consultant told me that I had bowel cancer and I would need an operation. The operation was successful –
‘I was lucky that the cancer hadn’t spread to any other parts of my body and I didn’t need chemotherapy afterwards.’
Ms Khan adds: ‘I had no outward symptoms of bowel cancer and feel incredibly lucky that a routine blood test flagged that there could be a problem to my GP. I am so grateful to the MDC service at UCLH for being available to make sure I could receive a speedy diagnosis and get my cancer treated quickly.’
It is a positive story which will be similar to that of many patients thanks to the work at the centre. For clinical nurse specialist Vicky Megias who has helped set the service up the process has been ‘very satisfying’.
She says: ‘It’s nice having a small team, we can communicate between the two of us, see what’s working and what isn’t, where we need to improve and what GPs think. We work quite closely with practices so we get feedback regularly.
‘If you go to a GP and they say they are going to refer you, you often don’t hear for weeks or months so the speed of it is something people are really pleased with.
‘Because we contact them so quickly and see them so quickly the feedback has been excellent. Previously on other pathways they might have heard nothing or gone back to their GP and them not had results etc. I’ve not had any bad feedback yet.’
She adds: ‘They’re really simply just grateful to get an answer, to be seen and be told something. Otherwise you can constantly feel you’re going round in a loop.
‘Every patient gets my number and for a patient that’s hugely reassuring. They can speak to someone who’s not a switchboard, might know them and will be able to sort something out for them. For the patient that alone is quite reassuring.’
Dr Graham – who stresses keenly that the small scale and person-centred nature of the scheme is key – agrees. ‘It’s a tremendously frustrating patient and GP experience – going back with the same symptom and there could be a cost implication,’ he says.
‘If they come in via the emergency room it’s a huge economic burden too especially if they are presenting with a late stage cancer.’
He adds: ‘There’s patient benefit, GP benefit, and potentially economic benefit – that’s part of the work we are looking at. There are potential benefits everywhere.’
Become the norm
The hope for the project is that a period of evaluation – currently being undertaken – will confirm the benefits of the project, both in terms of patient care and clinician experience and cost to the NHS. If that is the case the service’s manager hopes it will be commissioned as a ‘business as usual’ pathway next financial year.
And while it is a revolutionary service – it’s not a vastly expensive or difficult to replicate one. Funding is required to cover the cost of a full-time clinical nurse specialist and service manager who join a consultant already employed by UCLH, and a few other small costs – and the cash has come from funding from charities and an NHS England vanguard scheme, as well as the trust setting money aside.
If the evaluation proceeds as expected it is likely to show both significant benefits in the short-term, but also major opportunities in the long-term. The collection of data – and identifying biomarkers – could potentially make a very big difference to diagnosis in the future. The data would allow doctors to identify patients at a much earlier stage – before the classic signs and symptoms all present. With rapid diagnosis can come vastly increased survival rates.
Consultant gastroenterologist in pancreaticobiliary medicine Steve Pereira said the study could improve the diagnosis of pancreatic cancer – suggesting the emerging blood and urine biomarkers found could be accurate up to 90 per cent of the time.
He says: ‘We can actually see a biomarker signature up to one or two years before general diagnosis.
‘For most cancers there has been real strides taken in terms of improving early diagnosis and survival rates but we haven’t seen that to the same extent in pancreatic cancer.’
The study, which runs alongside the project by collecting the data of patients who come through the service, is building on previous studies which have identified biomarker molecules in blood and urine that could be used as a new diagnostic test to detect pancreatic cancer earlier or at a pre-cancerous stage.
The MDC is part of a wider project being run by the hospital trust called the UCLH cancer collaborative, which is piloting MDCs in total – at Barking, Havering and Redbridge University Hospitals NHS Trust, North Middlesex University Hospital NHS Trust, Royal Free London NHS Foundation Trust as well as UCLH itself. The trust is also supporting the development of an MDC at Southend University Hospital NHS Foundation Trust.
The project is part of the national Accelerate, Coordinate, Evaluate Programme jointly funded by Cancer Research UK, Macmillan Cancer Support and NHS England.
Kathy Pritchard-Jones, UCLH Cancer Collaborative chief medical officer, says: ‘Our biggest opportunity to save lives is sorting out early diagnosis. We’re asking: “what does a high-quality diagnostic and treatment pathway look like and how do you get the whole thing moving more quickly?”.’
BMA consultants committee deputy chair Gary Wannan recently visited the UCLH MDC. He says: ‘‘The cancer collaborative and vanguard projects are exciting insights into what clinicians and health managers can do to integrate services and make pathways smoother and more efficient – while potentially saving the NHS money and also reducing the often frustrating and confusing wait for symptoms to be accurately diagnosed.
‘Staff involved were united in their mission, dedicated to patients – even going so far as to give a mobile phone number to each person diagnosed with a cancer – and used their expertise, access to facilities at UCLH and ability to provide one-to-one care effectively.
‘The project is led by clinicians but heavily focussed around patients and both of those features are absolutely crucial if new models of care and transformation in the NHS are to succeed, whether on a small scale like this project or over larger pathways and services.
‘With the future of transformation in the NHS unclear; whether STPs, accountable or integrated care or smaller, more local changes are taken forward, putting patients at the heart of care with clinicians designing services that work for everyone has to be the right approach.
‘It is also vital that any redesigned pathways consider the needs of all parts of the health system not just those of the acute provider – and the cancer collaborative seems to have really considered the needs of primary care as well as hospital staff. In an NHS struggling for resource getting these things right first time is of huge benefit – and it is a badge of honour for the project that it may not only improve care but potentially also save money.’