John Baron MP, chairman of the All Party Parliamentary Group on Cancer talks to pharmaphorum about the drive to improve the UK's poor record in early cancer diagnosis.
Founded in 1998 to keep cancer at the top of the political agenda, the All Party Parliamentary Group on Cancer (APPGC) brings together members of the House of Commons and the House of Lords (MPs and Peers) to help improve cancer services for patients and their families. The APPGC website is hosted by Macmillan Cancer Support, which also provides the Secretariat to the Group.
The APPGC hosts and organises the annual Britain Against Cancer conference, the largest one-day cancer conference in the UK. This year's conference will be (was held) next week on 9 December at Central Hall, Westminster.
Britain Against Cancer brings together politicians, NHS leaders, healthcare professionals, patient groups, charities and patients to debate how further progress can be made against cancer in the UK.
The whole idea of the All Party Parliamentary Group on Cancer (APPGC) is to ask questions of Government and to ensure patients have a voice in decisions and during debates in Parliament. A cross-party group, we campaign hard on a number of issues, but over the last few years the importance of earlier diagnosis of cancer has been our particular focus.
The reason for this is very simple: the UK lags far behind comparable nations on cancer survival one year after diagnosis. Improving earlier diagnosis would have a big impact on survival rates across all cancers.
One-year survival rates in this country are about 68-69 per cent - whereas if you go to Sweden, it is 82 per cent. This gives an indication of the scale of the challenge the NHS faces, as well as an impression of the improvements we need to see.
When comparing our statistics with European neighbours – looking purely at averages – we see that around 5,000 lives a year are being lost to cancer in the UK every year compared to these countries. A recent OECD [Organisation for Economic Co-operation and Development] paper suggested that if you compared us to international averages, the figure could be nearer to 10,000 lives.
Whilst the NHS is as good as any other health system at getting patients who survive one year after diagnosis to the five-year survival point, it falls down badly in getting patients to the one-year point in the first place.
The reason for this is simple – many patients are being diagnosed too late, and this makes for poor one-year survival. As with many diseases, the later a cancer is diagnosed, the lower the chances of successful treatment.
One of the most shocking statistics is that one in four cancers in this country are first diagnosed as late as at A&E. This is a national disgrace, and one of the major reasons for our poor survival rates. So how should we encourage earlier diagnosis in the NHS?
One-year survival indicators
The obvious first step was to make the NHS focus on measuring one-year survival rates. Until recently, figures for one- and five- year cancer survival were not available, and were not listed as performance indicators for the NHS.
The APPGC played its role in bringing about this change, something we achieved in collaboration with the wider cancer community, including the Cancer Campaigning Group [a coalition of cancer charities].
In order to make the NHS focus on improving survival, we recommended that one- and five-year survival rates should be included in both the NHS Outcomes Framework and the Clinical Commissioning Group Outcomes Indicator Set (CCG OIS) – which monitor the performance of the national and local levels of the NHS respectively. The NHS accepted this recommendation in late 2012.
Although the NHS has since removed the five-year survival indicator at CCG level (there were valid concerns surrounding statistical robustness), the one-year figures are now built into the CCG OIS, which notes the performance of each individual Clinical Commissioning Group against certain indicators.
This is excellent news for cancer patients, and the first set of statistics was released in July this year. For the first time, MPs, health managers and the general public can see how each CCG is performing at earlier diagnosis.
However, the 2013 restructuring of the NHS has introduced a slight complication. Primary Care Trusts were replaced by CCGs, which, on average, have smaller population sizes than their predecessors. This may create problems around statistical significance when it comes to one-year survival rates. To compensate for this, we successfully campaigned for the inclusion of two proxy indicators to complement the one-year figures – the stage of cancer at diagnosis and the number of cancers diagnosed at A&E.
Taken in the round, the one-year survival rates, supplemented by these proxy indicators, should give a reliable indication of the performance of the local NHS at a local level. The complete suite of data should come on-stream early in 2015
The role of CCGs
Putting the one-year survival figures up in lights should encourage underperforming CCGs to promote initiatives to improve earlier diagnosis. Many CCGs will need to raise their game, and the Coalition's NHS reforms allow them the scope to tailor these initiatives to suit their local populations. It is up to CCG managements to get their act together and respond to local data and introduce an integrated system of care that looks right across the pathway to improve early diagnosis rates.
These initiatives could include better awareness campaigns, encouraging screening uptake, increased GP referral or introducing better diagnostics at primary care level. It could also include persuading the local A&E to refer patients on to specialists directly, rather than dealing with the immediate problem in front of them (such as bleeding) and sending the patient back to their GP, as all too often happens.
There also needs to be an integrated approach across primary and secondary care. One current issue is that 'unnecessary' GP referrals to specialists are not encouraged by the system. We should see more referrals, even if there is doubt. An incorrect referral isn't necessarily bad medicine.
In other European countries, if primary care refers you to a hospital, you won't get sent back if it turns out to be an incorrect diagnosis. Specialists often refer onwards on their own initiative if the GP's suspicions turn out to be unfounded and if the specialist suspects another condition. This type of rapid action encourages earlier diagnosis, and is one example of the steps the NHS should be taking to achieve its target of saving an extra 5,000 cancer lives each year.
Britain Against Cancer conference
The 'Britain Against Cancer' (BAC) conference on 9 December will (was) be an opportunity for the whole cancer community to come together and raise current issues surrounding cancer care, particularly with NHS officials and Government. Speakers will include the Secretary of State for Health, the Shadow Health Secretary, Simon Stevens [NHS Chief Executive] and Sean Duffy [National Clinical Director for Cancer].
We will also be launching our latest annual report at BAC – Cancer across the Domains: A vision for 2020 – which covers the five 'domains' of the reformed NHS and which reports back on progress since our last major report in 2013.
In addition, the report includes recommendations on a number of key issues, such as earlier diagnosis, the National Cancer Patient Experience Survey and the future of the Cancer Drugs Fund, as well as the issue of better integrated care between the NHS and social services.
The danger of putting processes above patient outcomes
The APPGC is never afraid to be critical of decisions made by the Department of Health and the NHS hierarchy when required. In my speech, I will be expressing our dismay at the fact that, out of the mist, a new tier of accountability has recently emerged. This came out of the blue, with charities such as Cancer Research UK and Macmillan stating that they received no warning that this new tier would be introduced.
A new 'Delivery Dashboard' in the Accountability Framework has been added to the system, seemingly trumping the existing CCG OIS. Many CCG managements are now telling the APPGC they attach higher priority to this framework than the OIS. Suddenly we have an extra layer of overarching accountability containing no specific outcome measures, only processes. Experience has shown that processes alone do not necessarily translate into better outcomes for NHS patients.
If we are going to improve the experience of all patients – not just cancer patients – then we need to retain the focus on the quality of outcomes. That is what the NHS should be all about – for too long, patient treatment and care has resembled more of a 'tick box exercise' in terms of numbers of patients seen and how quickly.
By contrast, the reformed NHS' new focus on outcomes instead involves examining how well and how successfully patients have been treated. This requires a fundamental shift in approach but, if correctly maintained, could revolutionise the quality of care and treatment across all disease areas.
The APPGC has additional concerns that this extra tier of accountability may mean politics is unduly entering the fray. This might mean fraught exchanges at the Despatch Box in the House of Commons about two week waits, how many patients are seen, and so on. This is not necessarily in the best interests of patients, who are generally more interested in how effective their treatment is.
Diagnosing patients earlier is truly cancer's 'magic key' to improving cancer survival. We have got to raise our game in this area – and to do that we have to let the medical professionals and health managers focus on outcomes.
About the author
John Baron is the MP for Basildon and Billericay, and was first elected in 2001. Educated at Cambridge, John then joined the Army and served on several operational tours of duty overseas. Upon his return to the UK he became a Fund Manager in London specialising in the charitable sector. John's interests include charity fundraising, financial journalism and history.
A former Shadow Health Minister with responsibility for cancer, John has been Chairman of the All Party Parliamentary Group on Cancer since 2009