Commissioning Guidance: Thames Valley & Milton Keynes Strategic Clinical Network. Cancer. September 2016

Commissioning Guidance: Thames Valley & Milton Keynes Strategic Clinical Network Cancer September 2016

Contents Of Guidance The Patient Pathway Cancer Prevention Screening Saving Lives Early Diagnosis & Assessment Living with and Beyond Cancer End of Life/Palliative Care Patient Experience

The wider guidance System working as core We trust you will find this commissioning guidance for the Cancer agenda in Thames Valley and Milton Keynes for 2016/17 useful. This year there are two main differences in our approach: We heard from you that it was a valuable resource which would be made more valuable by bringing together the advice from our partners as well. This now includes support and guidance from PHE, the Oxford AHSN and HEE. This year as well as bringing you this guidance as a web portal which aims to be intuitive, convenient and more detailed - we are able to provide pdf copies of the guidance which should aid accessibility and provide an opportunity to print and share should you so wish. While the Guidance is segmented by the clinical areas covered by the SCN, we would like to stress some underlying principles: Prevention is a key priority for all and is everyone s responsibility. We are pleased to partner with PHE and bring their message to you with ideas for what needs to be addressed, examples of how it can be done and the potential gain from the initiatives. The integration of mental and physical health is key to providing holistic patient-centred care. This is gaining traction in clinical areas such as perinatal mental health, cardiovascular disease and serious mental illness, the entire long term condition agenda and end of life care. With the significant proportion of health care burden on patients and the system related to long term conditions, the importance of the TV LTC transformational programme cannot be overemphasised. The traction that programme has gained in primary care now needs to be firmly embedded and systematised. The current push for system working gives us all the opportunity to contribute in different ways and at varying levels towards the same aim. We hope this guidance will provide an opportunity to connect widely and pose questions, share good practice and offer practical solutions. Your SCN leads contact details can be found at the end of this guidance (alongside your other clinical network leads)

The Patient Pathway - Cancer Primary Care Secondary Care Patient Experience Prevention Screening Assessment & Diagnostics Management & Treatment Recovery/ Survivorship End of Life Care Patient Experience Psychosocial & Palliative Care

Constitutional Standards The Timed Pathway for Cancer

Prevention Primary prevention has a key role to play in reducing the number of people who are diagnosed with cancer.

Prevention Many factors are influential including: Smoking is the most important preventable cause of cancer in the world. It is a causal factor in at least 14 cancers; lung cancer and the upper aero digestive tract cancers have the highest proportions of cancer cases caused by smoking. Less healthy diets cause nearly one in ten cancer cases in the UK. Diets high in fibre and fruit and vegetables may reduce cancer risk whilst a diet high in salt, saturated fats and red or processed meat can increase cancer risk. Overweight and obesity has been identified as a causal factor in over ten types of cancer including breast and bowel cancer. Physical Activity can help to prevent cancer, it has been estimated that 3400 cases could be prevented in the UK each year by keeping active. Alcohol causes 7 types of cancers including breast, mouth and bowel cancers. It is thought to be responsible for around 4% of UK cancers, about 12,800 cases per year. HPV Vaccination is offered to girls between the ages of 11-14 and will prevent at least 70% of cases of cervical cancer in future years. Supporting actions in Prevention Web resources Work with local providers, such as Solutions 4 Health to refine approach Rationale and evidence for giving Very brief advice Ask, Assess, Advise, Assist, Arrange NICE guidance (and wider pathway) Smoking Cessation in secondary care services

Supporting actions in Prevention Web resources Work with local providers, such as Solutions 4 Health to refine approach Rationale and evidence for giving Very brief advice Ask, Assess, Advise, Assist, Arrange NICE guidance (and wider pathway) Smoking Cessation in secondary care services Investment in evidence based stop smoking services - ensuring that these are promoted widely to all smokers and particularly those in priority groups e.g. pregnant women, people with long term conditions Very Brief Advice - Ensuring all local health care professionals/practitioners are trained in delivering on smoking and provide up to date/immediate information to refer or signpost people Secondary Providers identification and support to smokers who are in secondary care presents a good opportunity to drive the stop smoking message. Integrating Stop Smoking services in these settings should be considered with opportunities to access NRT and other pharmacotherapeutic aids. This includes ensuring that all health care facilities (including grounds) are smokefree, with staff committing to stop or abstain while at work Cancer Symptoms - Ensuring that individuals presenting with cancer symptoms and those receiving a cancer diagnosis are supported around smoking behaviours and access to support to enable stopping or taking steps to stop

Supporting actions in Screening Web resources Evidence of how combined, tailored approaches can have an effect on increasing bowel screening uptake (CRUK) National awareness weeks in Cervical Cancer/Screening take place every six months (January/June) free resources and tools can be accessed here For people with learning disabilities a strategy document and toolkit has been developed in the South West (including letter templates to be used) by the National Development Team for inclusion Make every contact count in all healthcare settings to support people to reduce their risk of cancer through healthy choices through Implementing NICE guidance on smoke free NHS trusts (PH48), ensuring access to smoking cessation services for staff, patients and visitors with clear pathways for referral to services As part of the STP s prevention plans, address cancer risk factors including smoking, alcohol, excess weight, diet and physical activity as identified through your local Joint Strategic Needs Assessment. Work closely with local government through joint planning and/ or commissioning. Promote breast, bowel and cervical cancer screening programmes, and ensure local services are well placed to respond to Be Clear on Cancer campaigns. CCGs and LAs commission providers to establish multidisciplinary alcohol care teams in all acute hospitals. This is proven to be a cost-saving intervention that coordinates the care across departments and enables rapid access to personalised brief advice and referral to specialist services in other settings. CCGs and LAs facilitate local agreements with GPs to screen patients (e.g. Audit-C scratch card), with medical staff trained to offer and provide very brief advice and refer to local specialist services as required. This is proven to lead to reductions in alcohol consumption and related hospital admissions Improved approach to food and catering in health and care settings and the implementation of the Government s forthcoming Childhood Obesity Strategy. Investigate opportunities, including STPs, to work in partnership with other Commissioners and Provider services to invest in public health interventions

Commissioner Recommendations - Prevention Make every contact count in all healthcare settings to support people to reduce their risk of cancer through healthy choices through Implementing NICE guidance on smoke free NHS trusts (PH48), ensuring access to smoking cessation services for staff, patients and visitors with clear pathways for referral to services As part of the STP s prevention plans, address cancer risk factors including smoking, alcohol, excess weight, diet and physical activity as identified through your local Joint Strategic Needs Assessment. Work closely with local government through joint planning and/ or commissioning. Promote breast, bowel and cervical cancer screening programmes, and ensure local services are well placed to respond to Be Clear on Cancer campaigns. CCGs and LAs commission providers to establish multidisciplinary alcohol care teams in all acute hospitals. This is proven to be a cost-saving intervention that coordinates the care across departments and enables rapid access to personalised brief advice and referral to specialist services in other settings. CCGs and LAs facilitate local agreements with GPs to screen patients (e.g. Audit-C scratch card), with medical staff trained to offer and provide very brief advice and refer to local specialist services as required. This is proven to lead to reductions in alcohol consumption and related hospital admissions Improved approach to food and catering in health and care settings and the implementation of the Government s forthcoming Childhood Obesity Strategy. Investigate opportunities, including STPs, to work in partnership with other Commissioners and Provider services to invest in public health interventions

CERVICAL BREAST BOWEL Screening - saving lives Bowel Cancer 3 rd most common cancer in UK 2 nd leading cause of cancer death Over 16,000 deaths per year National Bowel Screening programme Offered every 2 years to men and women aged 60 74 Thames Valley Roll-out of new bowel scope screening test for 55 year olds across Thames Valley Regular Bowel Screening; Risk of dying by 16% 20,000 deaths can be saved over the next 20 years IF; 60% of those eligible take up the offer of screening Breast Cancer National Breast Screening programme Regular Breast Screening; Most common type of cancer in women Over 12,000 deaths a year Offered every 3 years to all women aged 50 to 70 National extension (via randomised control trial) being trialled age ranges 47-49 and 71-73 Risk of mortality by20% with 1300 deaths prevented annually Cervical Cancer Regular Cervical Screening can prevent; Most common type of cancer in women under 35 Mainly affects sexually active women aged 30-45 3,100 women diagnosed each year National Cervical Screening programme Women aged 25-49 = 3 years Women aged 50-64 = 5 years 45% of cases in women in their 30 s rising to 75% of cases in women in their 50 s & 60 s Programme has saved over 8,000 lives in the last decade

Screening - saving lives Cancer Screening Statistics Summary (Chosen Month = Dec15) No. of eligible people on last day of review period No. of people invited for screening in previous 12 months Bowel Cancer Screening 60-69 60-74 No. of No. invited % invited eligible % invited in 2.5 year for in on last previous 12 Uptake % coverage screening in previous day of months % previous 12 12 review months months period Uptake % 2.5 year coverage % National Target 60 60 NHS SWINDON CCG 22429 11899 53% 54.3 55.5 30508 15443 51% 55.2 53.5 NHS MILTON KEYNES CCG 26500 14030 53% 54.6 55.9 34871 17733 51% 54.9 55.3 NHS AYLESBURY VALE CCG 23061 12186 53% 58.4 60 31666 16042 51% 59.2 59.4 NHS BRACKNELL AND ASCOT C 13749 7045 51% 55.6 57.9 18601 9657 52% 55.6 59.1 NHS CHILTERN CCG 36173 18928 52% 58.2 59 50491 25347 50% 59.5 59.2 NHS NEWBURY AND DISTRICT C 12859 6534 51% 59.9 60.9 17687 9121 52% 60.3 62.4 NHS NORTH & WEST READING 11101 5626 51% 60.7 63.2 15407 7876 51% 61.4 64.4 NHS OXFORDSHIRE CCG 71565 35646 50% 58.4 59.5 99457 50367 51% 59.2 57.8 NHS SLOUGH CCG 10234 5342 52% 38.8 41.1 13241 7009 53% 39.1 42.5 NHS SOUTH READING CCG 8776 4521 52% 46.7 49.6 11834 6207 52% 46.9 51.1 NHS WINDSOR, ASCOT AND M 15076 7748 51% 52 55.1 20770 10787 52% 53 56.8 NHS WOKINGHAM CCG 17048 8508 50% 62.7 65.4 23617 11935 51% 63.2 66.7 Bowel Screening data in Thames Valley highlights uptake rates are performing above average in only two CCG areas in the region

Screening - saving lives Cancer Screening Statistics Summary (Chosen Month = Dec15) No. of eligible women on last day of review period No. of women invited for screening in previous 12 months Breast Screening 50-70 47-73 % invited in previous 12 months Uptake % 3 year coverage % No. of eligible women on last day of review period No. of women invited for screening in previous 12 months % invited in previous 12 months Uptake % 3 year coverage % National Target 70 70 NHS SWINDON CCG 27140 16451 61% 75.6 75.7 34926 18556 53% 75 66.2 NHS MILTON KEYNES CCG 31710 10620 33% 77.8 76.1 40425 11747 29% 77.5 66.5 NHS AYLESBURY VALE CCG 27414 12415 45% 76.8 76.9 35351 14116 40% 75.9 67.9 NHS BRACKNELL AND ASCOT C 17386 6679 38% 75.6 75.6 22208 7534 34% 74.9 65.9 NHS CHILTERN CCG 43035 15447 36% 75.8 76.3 55542 18092 33% 74.9 67.8 NHS NEWBURY AND DISTRICT C 15034 6323 42% 77 78 19300 7190 37% 76.5 69.1 NHS NORTH & WEST READING 13223 6212 47% 77.3 75.9 17059 7111 42% 76.6 66.9 NHS OXFORDSHIRE CCG 84517 28192 33% 75.2 76.2 109148 31470 29% 75 67.1 NHS SLOUGH CCG 13022 7193 55% 67.3 67.3 16737 8370 50% 66.1 59.1 NHS SOUTH READING CCG 11081 3168 29% 68.4 68.4 14393 3618 25% 67.4 59.2 NHS WINDSOR, ASCOT AND M 17822 3226 18% 73 75.4 23069 3677 16% 72.7 66.6 NHS WOKINGHAM CCG 20633 6907 33% 78.7 79.7 26520 8178 31% 78.3 71.6 Breast screening data highlights strong performance in all but two CCG areas in the region

Screening - saving lives Cervical Screening 25-49 50-64 25-64 Cancer Screening Statistics Summary (Chosen Month = Dec15) No. of eligible on last day of review period 3.5-year coverage % No. of eligible on last day of review period 5.5-year coverage % No. of eligible on last day of review period 3.5/5.5- year coverage % National Target 80 80 80 NHS SWINDON CCG 40919 70 17666 77.8 58585 72.4 NHS MILTON KEYNES CCG 53388 70.7 20990 78.1 74378 72.8 NHS AYLESBURY VALE CCG 34766 74.4 18413 80.9 53179 76.7 NHS BRACKNELL AND ASCOT C 24548 74.8 11779 80.6 36327 76.7 NHS CHILTERN CCG 56303 72 28792 79.9 85095 74.7 NHS NEWBURY AND DISTRICT C 19654 73.8 9840 79.2 29494 75.6 NHS NORTH & WEST READING 19444 73.1 8778 79.1 28222 75 NHS OXFORDSHIRE CCG 122211 69.3 57210 78.7 179421 72.3 NHS SLOUGH CCG 30916 62.6 9383 78.5 40299 66.3 NHS SOUTH READING CCG 27658 62.8 7741 78.6 35399 66.2 NHS WINDSOR, ASCOT AND M 26863 70.2 11947 78.7 38810 72.8 NHS WOKINGHAM CCG 27324 74.9 13713 81.4 41037 77.1 Cervical screening data for the 25-49 age range is poor across Thames Valley and reflects the national performance. Oxfordshire CCG has been working nationally to produce guidance on possible interventions to encourage uptake locally

Supporting actions in Screening Web resources Evidence of how combined, tailored approaches can have an effect on increasing bowel screening uptake (CRUK) National awareness weeks in Cervical Cancer/Screening take place every six months(january/june) free resources and tools can be accessed here

Commissioning Recommendation - Screening Ensure pathways & interfaces between symptomatic and screening services are robust to enable screen detected patients receive timely treatment Ensure adequate capacity in symptomatic services including endoscopy and mammography to mitigate the risk of screening diagnostic capacity being utilised for symptomatic patients Make every contact count in the primary care setting to maximise the proportion of eligible patients who take up the offer of screening Investigate opportunities to work in partnership with other Commissioners and Provider services to minimise the variation in screening uptake at GP practice level. If you would like further information about local commissioning arrangements for NHS cancer screening programmes and opportunities to work in partnership to improve screening uptake please contact england.tvatpublichealth@nhs.net

Early Diagnosis & Assessment Earlier awareness, detection and assessment is crucial to enable a greater prospect of survival and improved quality of life for those experience cancer symptoms or a diagnosis. Awareness & Support Societal and behavioural norms can delay in getting medical help when faced with possible symptoms; fear of what a doctor may find, worry about wasting practitioner s time, lack of knowledge about specific cancer signs and symptoms and an inability to book a GP appointment can all contribute to presentation at a GP. Electronic Cancer Decision Support Tool (provided by Macmillan) is a free to use, fully IT compatible system which works with existing IT systems to log combinations of symptoms that patients present with, for them to flag where cancer is a possibility. For further information email preventionanddiagnosis@macmillan.org.uk

Detection A dual focus on primary care education and appropriate/prompt referrals from primary care are key to driving this agenda

While under 75 mortality rates across Thames Valley are average, early detection remains a high priority as 1 year survival rates could be much improved (click for data)

Improvement in staging has been seen across the whole TV region, with South Reading and Wokingham CCGs seeing the biggest improvements in staging coverage (click for data)

Case mix of cancers being detected at an early stage will have an impact on the proportion of early cancer detection. Breast is more likely to be detected at an early stage, vs Lung so areas with higher proportion of breast cancers will have better outcomes than those with higher proportion of lung (click for data)

Insufficient Capacity for Diagnostics in Thames Valley Rising demand for referrals in secondary care is playing a role in the increasing time it takes to reach diagnosis. England s rates of endoscopy for lower gastrointestinal cancers per 100,000 population lag behind comparable countries. Endoscopy services themselves, also vary in quality with many not JAG accredited (the marker of a quality service) and some patients experiencing 6+ and 13+ week waits for endoscopy. The impact of this is felt in England s poorer cancer outcomes for bowel cancer than in comparable countries.

Insufficient Capacity for Diagnostics in Thames Valley - Report Between now and 2021, suspected cancer referrals will rise between 7 and 31% in the Thames Valley Thames Valley SCN completed a cancer diagnosis demand & capacity project in March 2016- full details and reports including the modelling tool can be accessed from the link opposite Gynaecology 10% Colorectal 17% - 31% Upper GI Lung 7% - 22% Urology 16% 26% 10% (via 2ww or direct access to test) Between now and 2021, suspected cancer referrals will rise between 7 and 31% in the Thames Valley

Insufficient Capacity for Diagnostics in Thames Valley Supporting Actions

Cancer Standards Preparation for implementation of the 28 day cancer standard (from 2020) highlights current performance across Thames Valley is poor (click for data)

Cancer Standards

Upper Gastroenterology & Urology (per CCG)

Lung & Skin (per CCG)

Head/Neck & Lower GI

Breast & Gynaecology (per CCG)

GP Direct Access requests increasing GP direct access requests only account for 1/4 of all tests used to diagnose or discount cancer. This will significantly increase once all pathways are developed in accordance to NICE guidance (click for access)

Supporting Actions to achieve Early Diagnosis & Assessment Ambitions Target areas of inequalities and high cancer incidence to reinforce positive messages and support. The London Get to know cancer campaign utilised empty retail space in built up shopping areas to deliver a pop up shop staffed by cancer nurses and supported by volunteer Cancer Activists to talk to people about common cancer signs and symptoms in a non-clinical environment. Evaluation by King College, London highlighted the shops function in promoting the message of cancer survival rates more than doubling over the last forty years and that earlier diagnosis can increase the chances of successful treatment. This approach set in a non-clinical environment, combined with the wider London Get to know cancer campaign, worked to target the fear and fatalism about cancer that can stop the public visiting the GP when they first notice something wrong Disseminating information and co-ordinating a local presence around national Be Clear on Cancer campaigns to GPs, pharmacies and other local healthcare settings Working with Provider Trusts to develop training to support GPs recognition and awareness of cancer signs and symptoms thereby improving the quality, number and timeliness of referrals

Commissioner Recommendation Commission locally-developed awareness campaigns to improver earlier detection of cancer, for example the London Get to know Cancer pop up shop and cancer activist programmes Contact Macmillan to access the free Cancer Decision Support Tool - preventionanddiagnosis@macmillan.org.uk Invest in CCG GP Cancer leads to provide local leadership and co-ordination for early detection activities. Request your Provider Trust stages at least 70% of all cancers Access advice & guidance for GPs from the Cancer SCN Primary Care Resource Toolkit on: http://tvscn.nhs.uk/networks/cancer/resources/projects/ Commission sufficient capacity to manage national Be Clear on Cancer campaigns see details of current and upcoming campaigns at: http://www.cancerresearchuk.org/health-professional/early-diagnosisactivities/be-clear-on-cancer Commission additional endoscopy capacity for lower gastrointestinal cancers ensuring only JAG accredited providers are used Request your Provider Trust books the 1 st Outpatient appointment for 2week wait referrals within 5 working days Commission in accordance with the pathways agreed by the Thames Valley Cancer Network

Living With & Beyond Cancer There are 2 million people living with or beyond cancer (anyone who has had a diagnosis of cancer) in the UK. This figure is set to rise to 4 million by 2030. Supported aftercare should be in place to improve the lives of people affected by cancer (often people who have finished treatment report having life difficulties financial, medical, emotional, practical etc); Recovery Package key interventions when delivered together can greatly improve lives Holistic Needs Assessment identifies the individual needs of the person affected which contributes to a consultation, with care plans developed and onward referrals to be made Treatment Summary developed by a multidisciplinary team to inform health services and family of the care and treatment received. This can also inform emergency/unplanned admissions Cancer Care Review 6 month GP practice review following diagnosis to enable self-management Health & Wellbeing Clinics educational sessions to provide holistic information to enable rehabilitation and self-management

Supporting actions for Living with and beyond cancer ambitions

Commissioner recommendations Continue the roll-out of the Recovery Package, expanding coverage and uptake, moving from Holistic Needs Assessment, Care Plan and Treatment Summary, to include all aspects of the Recovery Package Commission stratified pathways, recognising their dependency on the availability of the Recovery Package Ensure that all MDTs have referral pathways in place for lymphoedema services, pelvic radiation disease, sexual dysfunction support and psychological support Consider how cancer support and follow-up can be integrated with the on-going management of other long term conditions Work together with Primary Care to improve the quality and delivery of the Cancer Care Review

End of Life/Palliative Care Palliative care can play an important role at all stages of the cancer pathway, particularly for people with active and advanced disease. It should be seen as an essential component of management, not something that commences when active treatment ceases. Commissioner Recommendation Explore the potential for personalised outcome goals, to be developed by patients in partnership with clinicians, to focus care on what matters most to patients.

Patient Experience The result of the National Cancer Patient Experience Survey for Trusts and CCGs was published in July 2016. It is not possible to directly compare data from the 2015 survey to findings of the previous CPES survey even for identical questions due to the changes made in the questionnaire and its administration to take into account changes in patterns of service use, policy and the regulatory landscape. The 2015 survey adopted the CQC standard for reporting comparative performance, based on calculation of expected ranges. This means that Trusts/CCGs will be flagged as outliers only if there is statistical evidence that their scores deviate (positively or negatively) form the range of scores that would be expected for Trusts/CCGs of the same size. Across Thames Valley the performance of each CCG against each of the 12 sections that make up the survey was average with the majority performing within the expected range for a CCG of similar size. Across the range of questions, there were 16 instances where some of the Thames Valley CCGs were positive outliers and 41 instances where they were negative outliers. The table below provides a summary: Performance Rating Rating 1 = Higher than the expected range "+" Positive Outlier Rating 3 = Lower than the expected range "-" Negative Outlier TVSCN NHS NHS NHS NHS NHS Windsor, Ascot NHS Wokingham NHS South Reading NHS North & West NHS Swindon CCG NHS Chiltern CCG NHS Oxfordshire CCG Milton Aylesbury Bracknell Slough and Maidenhead CCG CCG CCG Reading CCG Section No of Qs "+" "-" "-" "+" "-" "-" "+" "-" "+" "-" "-" "-" "+" "-" "+" "-" "+" "-" "+" "-" Seeing your GP 2 1 3 1 1 1 1 Diagnostic Tests 2 Finding out what was wrong with you 4 2 5 1 1 1 1 1 1 1 Deciding the best treatment for you 5 6 1 5 Clinical Nurse Specialist 3 1 2 1 1 1 Support for people with cancer 4 1 5 1 1 1 2 1 Operations 1 1 1 Hospital care as an inpatient 12 6 3 1 1 1 1 1 1 2 1 Hospital care as a day patient/outpatient 6 2 5 1 2 1 1 1 1 Home care and support 3 3 1 1 1 Care from your General Practice 2 2 1 1 Your overall nhs care 6 2 7 1 1 1 2 1 2 1 Total 50 16 41 5 3 1 4 1 4 1 10 9 1 3 3 5 1 1 1 2 2

Patient Experience As indicated in the chart on the left, overall within Thames Valley the majority of CCGs performed within the expected range for their size although they also performed lower than the national average. As shown performance for Q59 within the Your overall NHS care section, Oxfordshire CCG was a negative outlier as it performed lower than the expected range for a CCG of similar size.

Patient Experience Performance for Question 2 within the Seeing your GP section, both Milton Keynes and Aylesbury CCGs were negative outlier as they performed lower than the expected range for a CCG of respective size.

Patient Experience Performance for Question 8 within the Finding out what was wrong with you section, Winsor, Ascot and Maidenhead CCG was a negative outlier performing lower than the expected range for a CCG of respective size. Both North & West Reading and Wokingham CCGs were positive outliers performing higher the expected range for a CCG of their respective size.