London hosts several world-renowned centres of excellence for cancer care, staffed with some of the most skilled and experienced clinicians. Yet there is huge variation in quality of care and the city has some of the worst clinical outcomes for cancer in the country.
A particular problem is late diagnosis, and one-year survival rates are poor. It is estimated that every year there are 1,000 avoidable deaths from cancer in London. Although this is an area where the UK overall lags behind other European countries, it is exacerbated in the capital by an ethnically diverse and mobile population, with pockets of extreme deprivation and the associated high levels of chronic disease.
In a 2010 NHS London report outlining the case for change, recommendations were made to address inequalities in access to and outcomes in cancer care through the setting up of pathways across organisational boundaries, with treatment and care standardised across the capital.
One of the biggest weaknesses highlighted by the report was the general organisation of services, especially between primary and secondary care. Professor Kathy Pritchard-Jones, chief medical officer of London Cancer, says the real ‘eye opener’ was the results from the National cancer patient experience survey, for which London was the worst performing area.
Only two-thirds of patients reported being given easy-to-understand information about their cancer, 62% said there were enough nurses on duty when they were admitted and only half received information on financial help and benefits.
‘Even in centres of excellence, patients were reporting poor experiences of care when compared with the rest of the country,’ says Professor Pritchard-Jones.
Payment by Results, she points out, had pitted hospitals against each other, quashing any attempt by providers to work together for the benefit of patients.
‘As the North London Cancer Network, we had had a decade of very good clinical expertise setting standards – but we were not catching up with the rest of the UK or continental Europe,’ she adds. ‘We knew we had to do something different.’
London Cancer is a new governance arrangement bringing together GPs, secondary and tertiary care providers, academics, charities and patients to try to overcome the ‘disjointed and fragmented’ services of the past.
The London Cancer board will oversee committees charged with designing specific pathways for 11 cancer subtypes; a team looking at research implementation and education; expert reference groups in areas such as radiotherapy, nursing and psychosocial support; and specialist groups for children and young people and sarcomas. There are also three workstreams:
• living with and beyond cancer
• clinical information
• earlier diagnosis.
The solution London Cancer is tasked with delivering is a hub-and-spoke model, where specialist surgery and other, more complex, procedures such as radiotherapy will be centralised, with local centres carrying out chemotherapy and other common treatments.
More care – including diagnostics and follow-up – will be carried out closer to home, but with all patients following centrally agreed best-practice pathways.
There are precedents to setting up services in this way – one highlighted by London Cancer being the experience of Boston in the US, where top-class cancer centres and research institutes such as Dana-Farber provide care, research and training within a network of local hospitals.
A similar model can be seen with changes to stroke care in London. In 2009 there were 35 hospitals looking after stroke patients, but none doing a world-class job – as a system, it was distinctly average. But starting in 2012, anyone with a suspected stroke is taken immediately to one of eight hyper-acute stroke units, where they stay for the first 72 hours before being transferred to their local hospital for any ongoing rehabilitative care.
The result has been shorter hospital stays than elsewhere in the UK by an average of five days, improved mortality and more than a third of stroke patients returning directly home after specialist treatment.
‘Cancer is, of course, more complicated,’ says Professor Pritchard-Jones. ‘It is a series of different diseases all needing treatments of six to 12 months – sometimes more. But there are things we can do differently.’
She adds that in her field as a paediatric oncologist, they have done this for decades: ‘A child is diagnosed at their local hospital, then everyone comes to the specialist centre for a treatment plan. They then go back to chemo and supportive care, then come back for radiotherapy. We can’t do that for all adult cancers because it’s not as complicated, there are a hundred times more patients and experts exist in local hospitals for many common cancers. We want to ensure patients will always have the best treatment and clinical research.’
There are three main tasks facing the new integrated cancer model: drastic improvement in patient experience with a seamless, patient-centred service; better early diagnosis with the gold-standard pathway whenever and wherever a diagnosis is made; and better care throughout the system with fewer specialist teams, equitable access to clinical trials and faster adoption of new technologies.
‘If you look at patients who present as emergencies with a first diagnosis of cancer, the proportion who have not been through their GP is not great. We have to find a way to work with that to improve the efficiency of local healthcare resources, but also to get people diagnosed quickly,’ says Professor Pritchard-Jones.
‘We want to improve one-year survival and the patient experience. Then we want to get patients at the centre of a continually improving service, at least a third in clinical research and give virtually every cancer patient the opportunity for their tissue to be used in research. We should be standing out as a beacon of good outcomes.’
The key, she says, will be getting providers to think collectively, something that has not worked well in London in the past. It will, like any transformational redesign, involve some difficult decisions. And some services, such as specialist surgeries, will move to one centre making outcomes easier to monitor.
But the model is set up in such a way that those who will be affected by the changes – including 12 hospital trusts in north and east London – will hopefully have been involved in their design.
‘One of the strengths of working in a big system is we don’t have to restrict conversations to cancer,’ says Professor Pritchard-Jones. ‘So while there may be a shift of care in one direction, there may be other services being moved in the other direction. And we want to see more activity at all hospitals around early diagnosis and that generates income. Hospitals may do less in one area, but more in another.’
The CCG role
Those involved admit it is not yet clear exactly what role CCGs will fill in the integrated cancer model, although primary care will be central to discussions.
Dr Tony Brzezicki, a GP in Croydon and lead for commissioning for Croydon healthcare consortium, is one of the first GPs to step up to the plate as a non-executive member of the London Cancer board.
He says there is still a lack of detail on how exactly commissioning decisions will be handled, but that CCGs will still have much to do on commissioning diagnostics, initial treatments and the follow-up work that will be done locally: ‘Services will move and some units and wards will shut because we are centralising the specialist bits of care. Before now, commissioners have tried to raise standards in all local units, but they didn’t provide the range of care a specialist unit could – so that model was limited. It’s also very hard to raise standards across 15 or 16 hospitals at the same time. The integrated cancer model is now tasked with that role and to raise standards using peer review to change practice.’
A cancer clinical advisory group tasked with carrying out an annual review of the model of care, supporting the development and communication of priorities for commissioning and ensuring implementation has recently asked for expressions of interests for members, including for five GPs – ideally one from each of the emerging CCGs in the north and east of the capital.
At various other points in the formal governance structure, there will be GP involvement in decision making. This is especially vital, says Professor Pritchard-Jones, given that one of the main objectives of joining up planning for delivery of cancer services is to do better on early diagnosis.
The idea is to have GP representatives from the five CCGs in the north and east of the city, both on the board and in the executive structures of the cancer pathways.
But many of these committees are not yet in place, and Professor Pritchard-Jones points out that they may have an uphill battle getting already swamped GPs on board: ‘What we’re doing is only possible because we have all the chief executives of the hospitals – 12 in London – on board, and have a good relationship with commissioners in the emerging CCGs.’
Empowering primary care
One proposed solution to the problem of late diagnosis is to empower GPs to make more accurate referrals.
‘GPs want to know what to do with patients who have vague abdominal symptoms for which they can’t find a cause,’ says Professor Pritchard-Jones. ‘GPs are telling us that although there are red-flag symptoms, what makes them send a patient in is a gut feeling. They want something between guesswork and straight referral.’
With GPs often unclear which department to even send patients to and a low hit rate through the two-week wait referral pathway, with just as many patients diagnosed through other routes, it is clear a better system is needed. The solution is likely to be a specialist hub to aid GPs in referral decisions.
‘We are trying to set up, in partnership with primary care, a secondary care diagnostic triage system, a hub you can connect with and we’ll decide what test the patient needs to have before an outpatient appointment is booked that they don’t need,’ says Professor Pritchard-Jones.
GPs are also likely to take on a greater role in managing follow-up of cancer patients who have been through their treatment and given the all clear. Having them visit the consultant for regular ongoing appointments is not a good use of NHS resources, says Dr Brzezicki.
All these changes could dramatically change the involvement primary care has with cancer services and their patients.
This initiative – which has been in the pipeline for more than three years – is fairly radical in its scope and plans and seems a reversion to the ‘top-down’ way of working.
Dr Johnny Marshall, interim partnership development director at NHS Clinical Commissioners, says the London Cancer model represents a challenge many CCGs will face – to carve out the CCG role in initiatives that have been in the making for years: ‘We are going from the old way of commissioning to a new way, and we do not even have CCGs fully organised yet. So it is no surprise that at the moment, projects such as this may feel very “top down”.
‘We do need to move away from commissioning just for our population and the best way to do that is to work with other CCGs – this is a good example of that. What we need now is full ownership by the CCGs, rather than having a leadership team with a GP on every committee and CCG input. We need CCGs right at the very heart of it. Because CCGs have got so much to do, I think we are going to have a hiatus of two or three years before we will be able to judge whether we are working in a new way.’
The plan in London is that patients will experience improved services and outcomes while the dynamic between the new London CCGs and the radical new cancer model simultaneously pans out above them.
Emma Wilkinson is a freelance journalist