Overcoming the challenges of implementing the new NICE guidance for suspected cancer: recognition and referral

The aim was to share my experience of implementing NICE guidance for suspected cancer: recognition and referral, for the benefit of cancer professionals and patients.

The main objectives were:

• To implement the guidance and my locality and reflect on the process, successes and pitfalls
• To create a model that other professionals could utilise to fulfil the same agenda
• To facilitate transformation in my region by supporting change in other localities
• To disseminate my work nationally and have a positive impact for other health economies
• Improve patient care particularly with regard to early diagnosis of cancer.

I live and work in an area with high deprivation and some of the worst cancer outcomes for (high emergency presentations, late stage diagnosis, poor 1 year and 5 year survival rates  in the country (1).

After 2 decades of working as a GP I had first-hand experience of the devastating effects that cancer had on my patients and their families. My practice had an extremely high cancer incidence and death rates (2). I was determined to make a difference for my patients and started work on changing our approach within the practice to prevention, awareness and earlier diagnosis. This led me to develop to a particular interest in cancer care. I began to see a positive impact in my own patients but became ambitious to improve cancer care beyond my practice.

In 2014 I took on the role as a Macmillan GP which evolved into GP clinical lead for 2 CCG's with 89 practices, over 300 GPs and a population of approximately 540,000. I created a cancer strategy based on all the stages of a patient journey (3) and shared this vision with others. One focus was on assessment and management. I set up an action group in collaboration with my acute trust to transform urgent referral pathways and processes and enhance access to GP investigations.

Patient representatives were recruited to the meetings and became part of the governance procedures for cancer services. I was very much aware of the pressures place on both primary and secondary care and the potential conflict. Referrals for suspected cancer were growing at a rate of 7.7% per year and at this time were totalling over 15,000 per year. This was slightly lower referral rate than the England and North West average (1). The conversion rate of approximately 9% was comparable to other localities.

Patients fear cancer more than any other disease, and GPs are afraid of missing the opportunity to diagnose early. Hospital clinicians felt overwhelmed with the volume of referrals and the need to see, investigate and treat more patients in tight time frames. The launch of new NICE guidance for suspected cancer: recognition and referral (4) in June 2015 was a major game changer. I anticipated that implementation would prove to be a huge challenge not just for me but for every other professional with a responsibility to operationalize this improvement. However I could envisage the potential benefits of earlier diagnosis, improved survival, increased patient satisfaction and cost savings for the NHS and the national economy.

I devised a large formal NICE implementation group of influential professionals and set up 12 tumour specific sub-groups and a diagnostics team. Stakeholders were consulted and I sought advice from my GP colleagues. There was no additional cost in terms of job roles and responsibilities.

A major fear was the potential increase cost of implementing these changes mainly in terms of increasing referrals and tariff. The financial burden was estimated (5). I shared these projections at CCG quality and safety committees and financial boards who then committed to sustained funding.

From an acute trust perspective and risk analysis was undertaken which led to a clear plan of the pace that the changes could be executed. In November 2015 I organised, chaired and delivered a primary care multidisciplinary event on implementing the new NICE guidance for suspected cancer: recognition and referral. Over 150 primary care professional, mainly GPs attended. I planned the event in conjunction with Cancer Research UK and the Royal College of GPs to facilitate my resources  to be cascaded to and utilised by other cancer lead GPs (6). No services were discontinued as a result of this project.

The aim was to upgrade every pathway and create new ones. All referral forms were standardised, branded and translated into EMIS web format to enable all demographic data and relevant clinical information was captured (7). This enhanced patient safety, GP time management and consultant clinical insight. Patient engagement in the process was improved with a GPs providing written information about the reason for referral (8) recently updated by the cancer patient group (9). In all cases NICE guidance was strictly adhered too. However additional consensus decisions and practical suggestions were added in terms of local advice (10).

In some of the pathways the re-design speeded up the timelines by ensuring an essential investigation was organised at the same time the referral was made (11). Recognising clinical gaps, I designed novel pathways for jaundice (12) and iron deficiency anaemia. I commissioned GP access to urgent blood test and ultrasound scans and CT scans in for patients with symptoms or signs in accordance with NICE guidelines. Lower G.I. cancer has proven the most difficult area mainly due to challenges/limitations in endoscopy capacity. The new pathway and referral form will be launched in early 2017 to complete the whole implementation plan.

I have succeeded in 100% of practice engaging with the process and signing up my best advice for investigations and referral for suspected cancer for primary care (13).

The new referral forms and urgent investigation request are all integrated into the EMIS web practice system and available to all GPs in my locality. An audit of the quality of referral forms the showed improvement with summary and specific advice fed back to GPs (14). There has been a steady increase in referrals for suspected cancer in the last 5 years and this has continued since the introduction forms (15). It is too soon to fully evaluate the impact referral and conversion rates.

All practices are now coding all referrals and outcomes in a standardised way to take responsibility for their own patients and figures rather than rely on older national data. In 2015/16 all the local health organisations (2 CCGs and 1 acute trust) achieved all cancer waiting time targets for the first time (16) at a time when most others failed. There was an improvement in the overall result in the national patient cancer satisfaction survey (17). There is some evidence that there was greater patient engagement with fewer patients missing their first appointment for suspected cancer (18).

All practices have a plan to enhance patient engagement (19). In the pathways, where urgent investigations have been instigated at the same time as referral there is evidence that patients are seen and diagnosed sooner. Ongoing measurement and evaluation this whole project has resulted in the acute trust prospectively recording and sharing route to diagnosis and stage of diagnosis with every patient. This work was a major component to a cancer local improvement scheme and think cancer campaign I launched in Pennine Lancashire.

This campaign won the 2015 Macmillan Innovation Excellence Award in 2015 (20). Macmillan further recognised this work and the networking it involved with other organisations with The David Millar Award for outstanding achievements in influencing cancer care across boundaries and /or within primary care in 2016.

My cancer team won the National HSJ patient Safety Award in 2016 for putting patient safety at the heart of all our developments (21). A CQC report of my practice described this work as outstanding (22). In addition I was the NHS North West leadership award for living the values, partly due to how I have implemented the new NICE guidance for suspected cancer: recognition and referral.

My ambition was to influence positive sustainable change outside my locality. I reflected on my experience and carefully considered the challenges of implementing the new NICE guidelines.

I set up and chaired a series of regional event to help three other neighbouring health economies in which approximately 40 professionals and patients attended and benefited from (23).

I documented my thoughts and wrote a paper (24) to offer key pointers give to someone from another organisation facing similar challenges including successes and pitfalls. Macmillan wanted to disseminate this and it was edited and published on their web site (25). http://www.macmillan.org.uk/_images/top-tips-for-gps-nice-cancer-referral-guidelines_tcm9-295503.pdf

I prepared and delivered 2 workshops at the Macmillan Primary Care Conference 2016 directing other GP cancer leads on how to implement the guidance in their area. In addition to the whole implementation there was a specific reference to the topical challenge of access to diagnostics. I was recruited by Cancer Research UK and RCGP to offer some strategic direction on cancer care within my network.

These organisations supported me in producing a range of educational resources and an opportunity to share these nationally. These resources are available on the SCN website as an educational package to help other implement NICE guidance (26): http://www.gmlscscn.nhs.uk/index.php/networks/cancer/current-cancer-work/areas-of-work-we-lead-on-for-cancer#nice-guideline-on-suspected-cancer-education-package-for-gps-and-nurse-practitioners