Kingston Cancer Strategy

Transcription

1 Kingston Cancer Strategy

2 Kingston Cancer Strategy Steering Group Dr Naz Jivani (Chair of Kingston Governing Body, Kingston CCG) Dr Atin Goel (Cancer Lead GP, Kingston CCG) Dr Catherine Millington-Sanders (Macmillan GP, Kingston CCG) Livia Royle (Cancer Lead Public Health Consultant, Kingston Council and Kingston CCG) Dr Sarah Evans (Clinical Director of Cancer Services, Kingston Hospital NHS Foundation Trust) Nichola Kane (Associate Director of Nursing for Cancer & Clinical Support Services, Kingston Hospital NHS Foundation Trust) Simon Selo (Partnership Quality Lead, Macmillan) Public Health and GP Registrars on rotation: Dr Emma Bramall, Dr Andrew Cross, Dave Leeman, Dr James Moore, Sarah Shanks, Dr Vidhiyaa Sivajee, Dr Neha Varma Acknowledgments Kingston Adult Social Services Kingston CCG Kingston Council Kingston Hospital NHS Foundation Trust Kingston Voluntary Action Cancer Research UK 2

3 Contents 1. EXECUTIVE SUMMARY INTRODUCTION PREVENTION AND PUBLIC HEALTH IMPROVE PROVISION AND UPTAKE OF SCREENING ACHIEVE AN EARLIER DIAGNOSIS BUILD ON EXISTING HIGH QUALITY SERVICES SUPPORT PEOPLE LIVING WITH AND BEYOND CANCER IMPROVE ACCESS TO HIGH QUALITY END OF LIFE CARE IMPROVE PATIENT EXPERIENCE SUPPORT FOR FAMILIES AND CARERS AFFECTED BY CANCER REFERENCES

4 1. EXECUTIVE SUMMARY Cancer is the biggest cause of death from illness or disease in every age group in England 1. The number of people diagnosed and living with cancer is increasing, approximately 280,000 individuals are now diagnosed with cancer per year and this number continues to grow 2. More than half of people who receive a cancer diagnosis will now live ten years or longer, however 130,000 people still die from cancer each year. Increasing numbers of cancer diagnoses, advancements in treatment and improved survival rates mean that demands on health and social care services are now greater than ever. In July 2015, an independent Cancer Taskforce published a strategy, Achieving world class outcomes for patients with cancer, determining how the best outcomes for cancer can be achieved for England by In response to the strategy, Cancer Alliances are being developed to lead changes in cancer pathways and will provide cancer-specific leadership for the new Sustainability and Transformation Plan (STP) footprints. In addition, three Vanguards have been established: The Royal Marsden NHS Foundation Trust (FT) and partners, The Christie NHS FT, and University College London Hospitals NHS FT and partner s cancer collaborative will be working to deliver the ambitions outlined in the taskforce, including testing new funding models, new workforce models and new IT infrastructure models. Cancer services are being transformed across London through the Pan London Transforming Cancer Services Team (TCST), the National Cancer Vanguard and voluntary sector partnerships. This document identifies priorities for Kingston against key themes which are in alignment with the priorities identified by the cancer taskforce. This report focuses on adults, we propose that the seven strategic priorities for Kingston over the next five years should be: 1. Prevention and public health 2. Improve provision and uptake of screening 3. Achieve an earlier diagnosis 4. Build on existing high quality services 5. Support people living with and beyond cancer 6. Improve access to high quality end of life care 7. Improve patient experience 8. Support for families and carers affected by cancer It is recognised that for Kingston to make a demonstrable improvement in cancer services, both in improving outcomes and patient experience, joint working and a coordinated effort will be required across all services, including primary and secondary care, public health, clinical commissioning groups (CCGs) and the voluntary sector. This strategy outlines the steps required to drive this effort forward successfully over the next 5 years. 4

5 2. INTRODUCTION Cancer is a major cause of premature death in the United Kingdom. There are currently over two million people living with and beyond cancer in the UK and that number is expected to double by Cancer survival is improving and approximately half of the people diagnosed with cancer in the UK now survive their disease for ten years or more, however these survival rates are below those of other European countries Background in Kingston Approximately 650 people are diagnosed with cancer each year in Kingston 6. In 2014/15 there were 3158 people registered as living with cancer in Kingston, which accounts for 1.6% of all people registered with a GP. This is similar to the regional average for London (1.5%) but lower than the overall average for England (2.3%). This variation is due to a number of complex and interrelated differences between different geographical areas such as lifestyle, socioeconomic and environmental differences. 2.2 Survival Cancer survival rates in the UK have doubled in the last 40 years 7. This can generally be attributed to faster diagnosis and improvements in treatment. Cancer survival rates are a good indicator of whether cancer is being diagnosed early and whether there is access to appropriate treatment. Table 1 shows one year cancer survival rates for Kingston compared to the regional and national averages. Table 2.1 One year survival index (%) for all cancers combined: all adults (aged years), Kingston London England One year survival rate 69.2% 68.5% 68.2% Source: ONS One year cancer survival in Kingston is slightly higher than the London and English averages; however this is still below the best in Europe 9. 5

6 2.3 Mortality There were 223 deaths considered to be preventable from all cancers in those aged under 75 in Kingston from , which is equivalent to a rate of 68.2 per 100,000 people v. This was lower than the rate for England (83.0 per 100,000 people). The cancer mortality rate is higher in the male population in Kingston (72.2 per 100,000 people in ) compared to the female population (64.6 per 100,000 population); this is a trend that is seen across the country. 2.4 Inequalities Cancer research UK s report Cancer and Health Inequalities: An introduction to current evidence acknowledges an inverse correlation between socioeconomic status and cancer incidence and mortality. It also presents evidence of different cancer rates amongst harder to reach groups, Black and Minority Ethnic communities and the general population 10. Black, Asian and Minority Ethnicities (BAME) BAME groups make up 30% of the Kingston population 11. Cancer Research UK s Reduce the Risk survey found BAME communities and lower socioeconomic groups had lower cancer symptoms awareness and uptake of health services 12. Gypsies and Travellers Nationally, it is estimated that there are between 200,000 and 300,000 Gypsies and Travellers in the UK, two-thirds of which are settled in housing. In Kingston there are a number of English Gypsies and Irish Travellers residing in the borough. According to recent statistics (2015/2016) 0.1% of Kingston s school children are Gypsy Roma, lower than both London at 0.14% and England at 0.3% 13. In terms of health, Gypsies and Travellers are amongst the most deprived in England; they continue to suffer from poor health and lower life expectancy. They have some of the worst health outcomes of any ethnic minority group in the UK. They have poorer general health and higher rates of limiting long-term illness (even after controlling for socioeconomic status). They have low level use of services particularly by men e.g. of use of GP, national screening programmes, sexual health, and dental services. The Department of Health, Inequalities in Health Research Initiative report entitled The Health Status of Gypsies and Travellers in England report found that there was a deep-rooted fear of cancer amongst these groups hence avoiding health screening. Illness was often seen as inevitable and medical treatment seen as unlikely to make a difference, particularly for cancer. There was more trust in family carers rather than in professional care 14. 6

7 LGBTI Gender identity and sexual orientation Lesbian, gay, bisexual, trans and intersex (LGBTI) people are usually grouped for various purposes, but represent a very diverse population who face different challenges. A common concern, however, is the stigmatization and discrimination they face in everyday life (often referred to as minority stress). Sexual minorities in European countries report substantially worse physical and mental health than their same-gendered heterosexual counterpart. Direct exposure to sexuality-based discrimination has been shown to be inversely linked to self-rated health and subjective wellbeing among same-sex couples in Europe. Women in same-sex couples also seem to have greater risk for fatal breast cancer and face mortality rates that are significantly higher than for women with a male partner. Mortality rates for transsexual people are about three times higher compared to controls Cancer services The responsibilities for delivering cancer services in Kingston are shared across a number of agencies as per the NHS England Cancer Commissioning Strategy for London 16 : Royal Borough of Kingston Public Health department works with voluntary and community groups to deliver healthy lifestyle and cancer prevention services Cancer services at Kingston Hospital are run in partnership with the Royal Marsden Hospital (RM) Kingston CCG commission services for patients with common cancers with the exception of radiotherapy, chemotherapy and specialist interventions; NHS England has responsibility for the direct commissioning of these specialist services Primary care have a significant role in prevention and achieving early diagnosis of cancer, as well as long term care of cancer patients with a shift towards integrated care pathways Kingston also has a vibrant voluntary and community sector, supporting people across the life course. The Sector is recognised for its role and contribution to shaping and delivering services that communities want and need across a diverse range of activities, working with communities to address health inequalities and ensuring engagement is undertaken in an appropriate way. 2.6 Strategic planning Cancer services are being transformed across London through the Pan London Transforming Cancer Services Team (TCST), the National Cancer Vanguard and voluntary sector partnerships. This local Cancer Strategy has been developed in line with the key national and London cancer priorities and is delivered in a framework that targets the specific needs of the 7

8 Kingston population. It has been a collaborative development between: clinicians directly associated with each area providing clinical expertise, CCG representatives, a recognised GP cancer lead, Royal Borough of Kingston Public Health and representatives from the voluntary sector. This strategy follows the patient pathway from prevention, early diagnosis and awareness including screening, treatment at diagnosis and recurrence, through to end of life care. The key areas of focus are presented in the following chapters. Chapter 3. Chapter 4. Chapter 5. Chapter 6. Chapter 7. Chapter 8. Chapter 9. Chapter 10. Prevention and public health Improve provision and uptake of screening Achieve an earlier diagnosis Build on existing high quality services Support people living with and beyond cancer Improve access to high quality end of life care Improve patient experience Support for families and carers affected by cancer Improving patient experience and supporting families and carers are central to the development of all parts of this strategy and have been considered at every stage of the development of this document. In addition, patient experience and supporting those around patients are discussed in Chapters 9 and 10 to ensure these remain a priority as cancer service developments move forward. This strategy will be monitored and updated by the lead agency, Kingston CCG and its partner stakeholder organisations. 8

9 3. PREVENTION AND PUBLIC HEALTH Evidence has shown that there are a number of preventable or modifiable behaviours that may reduce an individual s risk of getting cancer and increasingly these behaviours are starting earlier in life. It is estimated that 43% of cancers are attributed to lifestyle and environmental factors, meaning there is great potential to stop people from developing cancer in the first place 16. This allows delivery of a better patient experience and financial savings for the NHS. Credit: Cancer Research UK 9

10 3.1 Smoking Lung cancer is the fifth most commonly diagnosed cancer in Kingston, but more people die from lung cancer in Kingston than any other type of cancer. From , the under 75 mortality rate for lung cancer in Kingston was per 100,000, this was lower than the rates for London (31.65) and England (33.59) 17. Smoking is the main avoidable risk factor for lung cancer, linked to an estimated 86% of all lung cancer cases in the UK 18. It is also a factor in health inequalities, accounting for half the difference in mortality between the most and least deprived areas in society 19. In 2015/16 the current smoking prevalence in Kingston was lower than London and England as shown in Table 3.1, despite this comparatively good performance, there still remains roughly 25,000 current smokers in Kingston 20. Table 3.1: Smoking Prevalence in adults: Smoking Prevalence Kingston London England 16.2% 16.3% 16.9% Source: Public Health Outcomes Framework The local Stop Smoking Service provider has a focus on training a diverse range of community advisers who can offer support to people locally who want to quit. They also work with local GP practice staff and community pharmacists. Stop smoking support is offered as part of the pre-operative assessment at Kingston Hospital NHS Foundation Trust and a new service is also being offered to people attending outpatient departments. The CCG intends to continue supporting Kingston Hospital in their bid to become a Health Promoting Hospital and has included tobacco control and support to stop smoking as part of their commissioning for quality and innovation (CQUIN) targets (CQUIN targets 9a, 9b, 9c). The local smoking cessation outreach service, provided by Kick It, is targeted at communities in greatest need, ensuring it is accessible to all. 3.2 Obesity and physical activity Physical inactivity, dietary factors, obesity and being overweight are some of the most prevalent risk factors for cancer in the UK 22. There is a link between overweight and obesity to many types of cancer including bowel, breast and kidney. The proportion of adults classified as overweight or obese in Kingston from was similar to the London average but lower than the average for England 23. The proportion of adults classified as inactive in Kingston in 2015 was below the regional and national average

11 Table 3.2: Obesity and Physical Activity: ,26 Adults classified as overweight or obese Adults classified as inactive 2015 Kingston London England 58.2% 58.8% 64.8% 20.8% 28.1% 28.7% Source: Public Health Outcomes Framework Maintenance of a healthy body weight and regular physical activity will considerably decrease the risk of cancer. Dietary changes, including greater consumption of fruit and vegetables and reducing high consumption of meat and salt can prevent the development of diet-associated cancers. This approach for cancer control would also substantially reduce the burden of other non-communicable diseases, particularly cardiovascular, diabetic, renal and hepatic disease. Clinical guidelines produced by the Royal College of Physicians (RCP) 27, National Institute for Health and Care Excellence (NICE) 28 and Scottish Intercollegiate Guidelines Network (SIGN) 29 recommend a provision of tiered (1 to 4) treatments offering different levels of care and tailored support to manage obesity. In Kingston there is a lack of specialist weight management multi-disciplinary team (MDT) services across the community and secondary care; this needs addressing in order to meet the needs of the population. Physical activity has been linked to decreasing cancer risk and Cancer Research UK (CRUK) suggest that around 3,400 cases of cancer in the UK each year could be prevented by keeping active. Physical activity can reduce a person s risk of bowel cancer and the evidence shows that people who do the most physical activity can cut their risk of developing cancer of the colon (large bowel) by roughly a quarter 30. As with bowel cancer, physical activity has been demonstrated to reduce the risk of breast cancer in women with one analysis showing that those who did the most activity had a 12% lower risk of developing breast cancer compared with the least active women 31. CRUK also highlight research showing that if a woman is physically active following the menopause breast cancer risk can be reduced by 10% no matter their previous fitness, weight, or waist circumference 32. Other cancers have also been investigated and it has been shown that physical activity may also reduce the risk in lung and prostate cancer 33. Despite this evidence around physical activity, 20.8% of Kingston adults undertake less than 11

12 30 minutes of physical activity a week Alcohol Alcohol use is a risk factor for many cancer types, including bowel, breast and liver. The risk from heavy drinking for several cancer types substantially increases if the person is also a heavy smoker 35. Approximately 85% of the adult population in Kingston drink alcohol; of this group 67% are estimated to consume alcohol within lower risk limits and the remaining 33% drink at levels which may result in alcohol related harm. The under 75 mortality rate from liver disease considered preventable in Kingston from was 13.1 per 100,000 population; this was lower than the regional (15.1) and national (15.9) average 36. Local GP and pharmacy services are commissioned by Public Health Kingston Public Health to offer information and brief advice (IBA) about alcohol consumption; this is to be further developed so that screening and brief interventions can be offered in a wider range of settings. A combined service model offers a number of treatment options locally, including the e-drinkcheck an online screening and information site. Further work is needed to raise awareness amongst health professionals and the public of the treatments available. 3.4 Skin Cancer Incidence rates of skin cancer have been increasing over the last 40 years. Malignant melanoma, a sub-group of skin cancer, is the fifth most common cancer in the UK and is currently the 18th most common cause of cancer deaths 37. Kingston experiences more hours of sunshine than most other areas of England and as a consequence the population within Kingston is at increased risk of developing skin cancer. Conversely, in Kingston the number of sunbeds per head of population, another marker of risk of skin cancer in the local population, is low compared to England. CRUK report that in the UK more than 8 in 10 cases of malignant melanoma could be prevented through enjoying the sun safely and avoiding sunburn38. Whilst we know that cases can be prevented it is often difficult to quantify this due to effects of awareness and prevention campaigns being seen over protracted periods of time. Nationally, SunSmart, a skin cancer campaign is run by Cancer Research UK in collaboration with several different partners whilst Skcin runs a national accreditation scheme around the issue of sun safety in educational establishments and workplaces. 3.5 Human Papilloma Virus (HPV) infection HPV is one of the most common sexually transmitted infections; persistent infection with some types of HPV can lead to the development of cervical cancer. HPV vaccination is offered routinely to females aged 12 to 13 years in Kingston, as part of the national immunisation 12

13 schedule. The vaccine protects against two types of HPV, between them responsible for more than 70% of cervical cancers in the UK 39. Coverage of the HPV immunisation in in Kingston is above the London region level; however it is below the national average. Table 3.3: Population vaccination coverage of the HPV vaccine: 2014/15 40 HPV Vaccination Coverage Kingston London England 88.5% 83.8% 89.4% Source: Public Health Outcomes Framework The HPV vaccination course was originally 3 doses, but following the recommendation of the Joint Commission on Vaccination and Immunisation (JCVI) in 2014 it has been reduced to 2 doses. The number of people who completed the full course of vaccinations dropped in 2013/14 however this increased again to expected levels in 2014/ Public awareness A research study conducted by Ipsos MORI Social Research Institute measured cancer awareness amongst residents of South West London in A total of 5,009 interviews were conducted on behalf of the South West London Cancer Network. The results of the study suggest that residents in South West London believe that lifestyle makes the greatest contribution to developing cancer in the UK, with 53% ranking is at the most important factor; followed by genetic inheritance (29%). Avoidable lifestyle factors, especially smoking, were the most commonly cited cause of cancer. Only 5% of those interviewed did not know of, or mention, any factors that affect a person s chance of getting cancer. A local Patient, Carers and Public forum Avoiding Cancer, Detecting Cancer early was held in Kingston in April Kingston residents attending the forum showed good awareness of lifestyle factors that are risk factors for cancer. 3.7 Recommendations Prevention offers the most cost effective long term strategy for the control of cancer. Implemented systematically, the evidence suggests prevention programmes can be important enablers for reducing acute activity and capacity over the medium term, but currently only about 4% of the total NHS budget is spent on prevention 22. Kingston commissioners (of primary and secondary care and voluntary services), providers and other stakeholder partners continue to prioritise cancer in line with London and national strategies for preventing cancer in the Kingston population 13

14 For prevention programmes to be effective, local clinical commissioners, local government, schools, providers, employers and others will need to work together to optimise the full range of resources there are available. Kingston commissioners and NHS England consider commissioning evidence-based primary prevention programmes focussed on the key risk factors linked to cancer, including smoking, diet and alcohol with particular focus on vulnerable groups. Local public health teams need to work in partnership with key stakeholders, to explore how to reduce the difference in risk of developing cancer. Kingston stakeholders must ensure that the key cancer prevention messages reach people with learning disabilities, ethnic minorities, the elderly, and other groups where inequalities may arise. Local public health teams need to work in partnership with key stakeholders, to explore how best to address the inequalities that exist in the survival of cancer. Kingston stakeholders must ensure that messages reach people who due to inequalities may experience a worse cancer prognosis. 14

15 4. IMPROVE PROVISION AND UPTAKE OF SCREENING Population-based cancer screening detects approximately 5% of all cancer cases annually in the UK, including 30% of breast cancers and 10% of bowel cancer. There are currently three national cancer screening programmes in England: breast, bowel and cervical cancer screening. These programmes have contributed to improving survival rates for those patients whose cancers can be treated at an earlier stage. The bowel and cervical screening programmes also act as cancer prevention programmes through the detection and removal of pre-cancerous lesions. There is considerable variation in uptake of cancer screening across England; this both reflects health inequalities whilst also contributing to them. In Kingston the uptake of all national screening programmes is higher than the average for London but below the national average, as shown in table 4.1. Table 4.1 Cancer screening coverage: 2016 Kingston London England Breast 42 Bowel 43 Cervical % 68.3% 75.4% 55.5% 47.8% 57.1% 70.4% 68.4% 73.5% Source: Public Health Outcomes Framework 4.1 Bowel Cancer screening There are two aspects of the bowel cancer screening programme, the guaiac faecal occult blood test (FOBt), offered every two years for men and women aged 60 to 74 in England, and the bowel scope screening programme which is a one off test offered to 55 year olds. Uptake of the FOBt is poor, approximately 50% of people don t respond to screening both in Kingston and across England. A new bowel cancer home testing kit, the faecal immunochemical test (FIT) has been approved by the UK National Screening Committee; this new test is easier to use than current home testing kits with only one stool sample being required instead of two samples from three separate stools with the current test. This is expected to improve uptake of screening by approximately 10% 45. FIT is expected to be rolled out in Kingston in the next two years. 15

16 The rollout of the national bowel screening programme (flexible sigmoidoscopy) has commenced. This is now being offered across London to people aged 55. It is a priority for Kingston to offer this screening to local residents. 4.2 Breast Cancer screening Women aged are invited for breast cancer screening every 3 years. The South West London breast screening service is currently participating in a national trial to examine whether the age of screening should be extended from 47 to 73. As part of this trial, the screening service is selecting women aged and to be invited for screening. 4.3 Cervical Cancer screening Cervical Cancer screening is offered to women between the ages of in GP practices but can also be undertaken at local family planning and sexual health clinics. Women are invited to be screened every three years until age 49 and then every five years until age the age of 65. When abnormal or pre-cancerous cells are identified women will be invited to attend the colposcopy clinic at Kingston Hospital for further investigation and treatment, if required. In addition vaccination against two forms of HPV, causing 70% of cervical cancer is offered to females aged 12 to 13 years in Kingston, as part of the national immunisation schedule and this is discussed earlier in this document. 4.4 Optimisation of screening To maximise the impact of new and existing programmes, it is essential that uptake of screening is optimised so that more people are diagnosed at an early stage or prevented from developing cancer through the identification of pre-cancerous conditions. Primary care has a significant role to play in maximising the uptake of screening, both through client education and following up of non-responders to invitations to screening. 4.5 Recommendations 1. Commissioners and providers must take steps to improve public awareness of the benefits of screening and thus able informed choice of participating in screening 2. Commissioners and providers must ensure that there are seamless pathways from screening to treatment and that new programmes are rolled out efficiently across the borough. 3. Commissioners and providers must make a concerted effort to increase screening coverage and uptake within the local population, in line with The UK National Screening Committee s best practice guidance. 16

17 a. Commissioners to incorporate performance indicators in primary care contracts and consider incentivising schemes to improve screening uptake. b. Commissioners and providers must continue to work with the voluntary sector and the wider community to improve engagement with high risk and/or hard to reach groups. these groups include those individuals with learning disabilities, ethnic minorities, men, those from a deprived background and those with existing health conditions. 4. Seek opportunities to incorporate screening recall systems at a GP practice level. 5. Implement bowel scope screening (flexible sigmoidoscopy) for Kingston registered patients at the earliest opportunity. 17

18 5. ACHIEVE AN EARLIER DIAGNOSIS Supporting the early diagnosis of cancer is a national priority. Recent studies have found that cancer survival in the UK is lower than the European average for many cancers, and achieving earlier diagnosis has been identified as having the greatest potential for improving the outcomes and survival of cancer patients 46. The National Awareness and Early Diagnosis Initiative (NAEDI) was launched in 2008 to provide leadership in the support and coordination of work that promotes the earlier diagnosis of cancer. The initiative is led by the Department of Health, NHS England, Public Health England and Cancer Research UK and works in partnership with other public and voluntary sector organisations. One year survival estimates for Kingston are similar to the national average, as shown in table 3.1 below; however, research has shown that lung, breast and bowel cancer survival in the UK is worse than in other European countries with comparable wealth and healthcare systems, therefore there is room for improvement. Table 5.1 One year survival statistics for breast, bowel and lung cancer 47 Kingston England Breast 1 Lung 2 Bowel % 96.4% 34.5% 33.4% 78.1% 77.3% Source: ONS 1 Number of patients, one year age standardised net survival (NS, %), women (15 99 years) diagnosed with breast cancer in England, Number of patients, one year age and sex standardised net survival (NS, %) and 95% confidence interval, adults (15 99 years) diagnosed with lung cancer in England, Number of patients, one year age and sex standardised net survival (NS, %) and 95% confidence interval, adults (15 99 years) diagnosed with colorectal cancer in England,

19 Table 5.2 One year Survival Statistics for breast, bowel and lung cancer combined, by age group 48 Kingston England % 77.0% 65.6% 63.5% 73.4% 71.5% Source: ONS Cancer Research UK note that nationally across all cancers the age for the best survival rate is whilst those aged have the lowest survival. Outcome data from 569 patients was used to calculate the one year survival estimates for different cancers in Kingston. These estimates will be influenced on an individual level by many different factors and will vary between individuals. 5.1 Emergency presentation The potential for a successful outcome is much lower for cancer diagnoses which occur in A&E. In 2015/ patients in Kingston were diagnosed with cancer through emergency routes 49. This is equivalent to a rate of 396 per 100,000 population, which is lower than the regional (410) and national (539) averages for cancer diagnosis through emergency routes. A percentage of these will enter A&E as a result of direct referral from the GP to enable fastest access for the patient into secondary care. 5.2 Achieving earlier presentation Public Health England runs a national public awareness campaign, Be clear on cancer, which explains the symptoms of a range of cancers and encourages people with symptoms to see their GP. The campaign has been promoted within the borough to encourage patients to visit their GP for assessment if they have symptoms which could be related to cancer. So far these campaigns have focused on cancers with the largest number of avoidable deaths compared with countries with the best survival rates. Fear at what the doctor may find, concern about wasting GP time, lack of knowledge about specific signs and symptoms of cancer and inability to make a doctor s appointment at a 19

20 suitable time can all contribute to delay in seeking medical attention. In April 2015, Kingston CCG and Public Health services held a forum meeting to hear the views of service users and members of the public. Key objectives taken from the forum to progress as part of the strategy included improving education for the public about general lifestyle support and empowering people to present their symptoms early. Kingston has an ageing population and this can create inequalities in accessing services. Kingston public health is working with a voluntary action group to improve user engagement in this population. The Black, Asian and Minority Ethnic (BAME) population is growing in London, and this is also true in Kingston. It was estimated that BAME groups made up 30% of the total population in Kingston. 50. A recent survey found that ethnic minority groups in England are less aware of cancer symptoms and are more likely to report reasons for not going to see the doctor, even if they suspect they have a symptom of cancer 51. In order to achieve earlier diagnosis within the BAME population a number of promotional activities and presentations have been made to local community groups as well as information being presented in local community newsletters. All health care information is provided in multiple languages across Kingston to ensure minority groups are not excluded. 5.3 Achieving earlier referral Reducing GP delay of referral for suspected cancer cases allows diagnoses to be made at an earlier stage of the cancer, therefore improving patient outcomes and patient experience. Supporting GPs to be able to detect the signs and symptoms of cancer and refer appropriately and in a timely manner is key to reducing delays at the GP surgery. In 2010 the National Audit Office identified that there is almost a four-fold variation in the urgent cancer referral (two week wait [2WW] between GP practices 52. The two week referral rate for suspected cancer in Kingston in 2015/16 was 2,143 per 100,000 population 53. The regional and national rates for this period were 2,539 and 2,975 per 100,000 respectively. The conversion rate (percentage of two week referrals resulting in a diagnosis of cancer) for Kingston was 6.6%; the regional and national conversion rates were 5.9% and 8.2% respectively. The detection rate (percentage of cancers detected via the two week pathway) in Kingston was 41.6%, this was lower than the average for both London (47.7%) and England (48.4%). There is no conclusive evidence that increased use of the urgent referral pathway leads to lower cancer mortality, however studies have shown that practices with a high referral ratio and those with a high percentage of cancers that were detected via the two week pathway have improved survival rates of their patients with cancer

21 In 2015, NICE introduced new guidance (NG12) 55 for the management of suspected cancer on the urgent 2 week wait (2WW) cancer referral pathway; the updated guideline has reduced the positive predictive value of symptoms for diagnosing cancer from 5% to 3% 56. This is hoped to lead to earlier referral and subsequent diagnosis. There is variation between GP practices in Kingston of both two week referral rates and the results of the referrals, meaning there is potential for improvements within primary care. Kingston CCG has a GP lead and Public Health lead for Cancer, linking into London and other wider activity and leading local programmes of work. A Macmillan GP has also been appointed to promote primary care awareness of, and engagement with national cancer care initiatives, particularly the drive for earlier diagnosis. The CCG has also worked with the Cancer Commissioning Team to encourage education sessions for GP practices in the borough using practice profiles to highlight areas where there is variation from the norm. The use of practice profile programmes that highlight referral patterns and cancer incidence within a practice have been well received in Kingston. Clinical audits at the practice level are also being encouraged and the use of nationally developed risk assessment tools will be supported in all practices. 5.4 Diagnosis Demand for diagnostics has been growing across London as a direct consequence to the increasing number of two week wait referrals following the revised NICE 2015 guidelines (NG12) 57. The new guidelines have not only lowered the threshold for referral for suspected cancer, but also recommended direct access for diagnostics, including: MRI brain for suspected Central Nervous System (CNS) malignancy, and upper gastrointestinal (GI) endoscopy for suspected oesophageal or stomach cancers. Kingston Hospital is currently meeting waiting time targets but continued review of diagnostic demand and capacity will be required as the demand for diagnostics continues to rise in the future. 5.5 Recommendations 1. Continue to support national awareness campaigns such as the be clear on cancer campaign and deliver these locally, within Kingston general practices, pharmacies and various community locations. 2. Commission and deliver cancer services in line with best practice guidelines developed for the early detection of cancers (breast, bowel, lung and ovarian) and for investigating vague abdominal symptoms and blood in urine. 3. Ensure endoscopic capacity is sufficient to cope with the increasing demand due to increasing need for colonoscopy and flexible sigmoidoscopy. 21

22 4. Ensure that other cancer diagnostic/imaging capacity is sufficient to cope with the increased number cancer referrals including direct access diagnostics in line with NICE recommendations. 5. Integrate the 2WW referral system into primary care IT systems. 6. Support staff training and education (primary care teams, pharmacists, dentists, social workers etc) to promote early diagnosis of cancer. 7. Improve 2WW appointment patient compliance (e.g. enhanced patient referral information, verifying patient contact details and ensuring availability to attend specialist appointment within 2 weeks). 22

23 6. BUILD ON EXISTING HIGH QUALITY SERVICES Clinical effectiveness, patient experience and safety are the foundations of our approach to ensuring our cancer pathways deliver excellent patient care, and are linked to the 5 domains 4 in the NHS outcomes framework 58. Ensuring high quality care for patients both referred with a clinical suspicion of cancer and confirmed cancer is a key priority for Kingston Hospital and is one of the quality goals in Kingston Foundation Trust Quality accounts. The hospital priorities are aligned with NHS England s response to the 2015 Cancer workforce strategy Achieving world class outcomes for patients with cancer and will be delivered nationally through the cancer transformation board which will be taking on the recommendations from the Royal Marsden (RM) partners Accountable Cancer Network (ACN) vanguard in which we are involved. Cancer Vanguard Kingston is one of the partners involved in the RM partners vanguard alongside 9 other acute Trusts and 13 CCGs in northwest and southwest London. The key priorities of the cancer Vanguard for 17/18 and 18/19 will be to focus on the earlier diagnosis of cancer particularly in lung, prostate and gastrointestinal and to deliver the recovery package and stratified follow up. It will be looking at ensuring patient experience is enhanced at each step in their pathway. Through successful bids the cancer transformation funds will enable pilots to explore new diagnostic delivery models but also developing optimal digital infrastructure to support new integrated models of care. 28 day faster diagnosis pilot Kingston was chosen as the pilot site for London and is one of five pilot sites in England. They are testing the metric that 95% patients who are referred with a suspicion of cancer should have cancer excluded or confirmed within 28 days and 50% within 2 weeks This work will continue in 2017/18. 4 The five domains are: Preventing people from dying prematurely Enhancing quality of life for people with long-term conditions Helping people to recover from episodes of ill health or following injury Ensuring that people have a positive experience of care Treating and caring for people in a safe environment and protecting them from avoidable harm 23

24 Faster optimal pathways are being explored by working closely with primary care, Macmillan GP leads as well as Cancer Research UK (CRUK) and the clinical teams and patient users in each of three tumour sites: upper GI, endometrial cancer and colorectal. 6.1 Clinical effectiveness Support and feedback will be given to primary care to ensure the NICE guidance for 2WW referrals (NG12) are used as the referral criteria are designed to increase detection of cancer and therefore earlier diagnosis. Direct Access to imaging and endoscopy will be facilitated through the development of new referral pathways: Computed tomography (CT) abdomen for vague symptoms of cancer in people over the age of 60 and rapid access to Ultrasound Scan (USS) in patients suspected of having cancer. New NICE guidance referrals for suspected gynaecological cancers and upper GI cancers have been introduced, and work is in process to replace the current walk in CT headache service with MRI brain direct access. Processes and systems are in place to ensure all patients are referred and managed within the mandated cancer waiting times; these have been consistently met in the last year. 2WW, 62 day and 100 day breach reports are prepared with 100 day breaches having a Root Cause Analysis (RCA) and presented to Clinical Quality Review Group (CQRG) with action plans. Each tumour site has developed or is developing a timed 62 day pathway with appropriate escalations and optimising the pathway with service redesigns: The colorectal team is introducing straight to test by August 2016 The prostate team has already introduced same day MRI to risk stratify prostate biopsy and will continue to work with primary care to ensure referrals are appropriate The Gynaecological cancer team are looking at same day hysteroscopy for people referred with a suspicion of endometrial cancer A suspicious chest X-ray is fast tracked to CT and directly into a 2WW clinic if likely cancer Endoscopy services follow the BSG guidelines for polyp management and Barretts oesphagus surveillance An endoscopy expansion business case will allow the introduction of bowel scope to people in Kingston provided locally 6.2 Reducing unwanted variation If a cancer diagnosis is made it is to be expected that the patient will receive standardised 24

25 evidenced based best practice whether it is surgery, chemotherapy or radiotherapy and if required palliative and end of life care. This practice is supported through integrated pathways by named key workers mainly specialist cancer nurses. Furthermore they should have the opportunity of entering clinical trials and be actively involved in all decisions about their treatment. All tumour sites have robust operational and effective MDTs to transform service models and improve quality of care across the cancer pathway. They all participate in peer review, have a yearly work programme and compliance with Quality Surveillance Team (QST) measures, or have actions to address gaps and improvement plans. 6.3 Maintaining quality External peer reviews in 2015 /16 were conducted for cancer of unknown primary origin (CUP) and paediatric oncology with good overall results, since then concerns have been addressed and action plans put in place. All tumour sites have clinical leads attending RM partners cancer vanguard fora; they are implementing the best practice guidelines for the tumour sites and have action plans to address any gaps which are reported to the cancer board. All tumour groups have pathway performance metrics, which are reported to clinical forums and will be replaced by metrics being designed by the cancer transformation board and reported to the RM partners clinical oversight board. Lung, colorectal and prostate cancer teams collect data for the national audits such as Lucarda and NBCOP and PC and benchmark favourably against other Trusts. Patients who are admitted as an emergency admission as their first presentation or with a complication of treatment receive consistent, high quality care. A consultant led acute oncology service with engagement in clinical teams ensures prompt referral onto the best pathway for all patients. Clinical Protocols guide patient s journeys on the cancer pathway. A seven-day day specialist palliative care service commenced in 2017 and with increased palliative care consultants a delivery plan is being developed for 17/18 to avoid hospital admissions where possible. Kingston Hospital will be continuing to expand the acute oncology service specialist cancer nurses to enhance quality of care in patients with cancer and to reduce length of stay. Modernising informatics and electronics, referring, requesting and reporting is a key requirement for 2016 and ongoing aligned with the informatics programme being developed by RM partners and our cancer informatics system has been upgraded. In the past the collection and management of data has been identified as being challenging. Despite this, year-on-year improvements have been achieved on metrics both in cancer outcomes and services dataset data and also health need assessments, staging information 25

26 and performance status data. 6.4 Promoting and actively involving patients in research This is an important goal in 2016/7 and there is an aim to double the number of patients who are recruited into cancer trials. The Cancer research team has been expanded and through good clinical leadership more patients are already being safely recruited into trials. There is access to molecular genetic testing and the hospital is partaking in the 100,000 genomes project through the Royal Marsden Hospital (RMH) working on site. 6.5 Patient safety The cohort of patients with cancer are getting older and are at more risk from comorbidities and treatment. Policies and procedures are in place to ensure treatment follows best practice, including compliance with NICE improving outcomes guidance or the development of action plans to address gaps. Robust clinical governance and incident reporting mechanisms are followed and there is shared learning across the trust. Transparency and honesty are key, following the Duty of Candour. Patient safety alerts are implemented, for example alerts to an imaging or pathology cancer diagnosis, or safety netting so that results are communicated and acted upon promptly. Compliance with chemotherapy safety through the Marsden chemotherapy unit or haematology day unit is carefully monitored as this is known to be a high risk area. The National Cancer Registry service and COSD data sets provide information to clinicians and to benchmark across organisations. Analysis of avoidable cancer breaches and complaints with action plans are presented to the CQRG and the relevant tumour site management teams. However complaints we receive from our patients with cancer and the National Cancer Patient Experience Survey (NCPES) survey tells us that communication needs to be improved. There is robust clinical governance in the organization from frontline workers to board level with external monitoring and regulation. Supporting and developing our workforce who have expertise in managing patients with cancer is important to us. Schwartz rounds have been started to enable staff to share experiences, these have proven been very popular. 6.6 Recommendation 1 Ensure that all people with a suspicion of cancer are referred to specialist cancer services. 2 Ensure that all people with a clinical suspicion of cancer are referred using the new 2WW referral pathway and advised at the time of referral that they are on a rapid diagnostic pathway. 3 Ensure that cancer is confirmed or excluded as early as possible with an aspiration 26

27 to reach a conclusion within 28 day from referral. 4 Undertake demand and capacity analysis for endoscopy and imaging, and address capacity shortfalls as required. 5 Extend direct access to diagnostics in line with cancer commissioning intentions and TCST quality indicators. 6 Implement best practice guidelines for each tumour site, in line with cancer commissioning intentions and TCST quality indicators. 7 Modernise cancer informatics and data collection as part of the vanguard work stream. 27

28 7. SUPPORT PEOPLE LIVING WITH AND BEYOND CANCER There are more than 200,000 Londoners living with and beyond cancer, and this is estimated to double by 2030, leading us to think about cancer not only as an acute problem but a longer term condition with specific consequences and needs, with 70% of people with cancer having at least one other long term condition 59. Similar trajectories are predicted for Kingston, with 4,400 people registered as living with and beyond cancer in 2010, and this is estimated to reach 8,500 by The increasing survival rates are a reflection of earlier diagnosis accompanied by advances in treatment and we expect these figures to continue to rise with further advances in medical research. This ever increasing cohort of patients have specific needs that need to be addressed and the evidence shows that some areas are currently unmet, particularly regarding the end of treatment and the side effects of treatment that could either be managed or avoided. Research by the Nuffield Trust has shown that 15 months after diagnosis these patients have 60% more A&E attendances, 97% more emergency admissions and 50% more contact with their GPs than a comparable group 61. Ongoing psychological support has also been highlighted as an area of need and is vital to promoting physical and emotional recovery and should be embedded within clinical teams. As people live longer there will also be an increasing number of carers, who will also require physical and psychological support to provide care for their family members and loved ones. To improve the care and support of people living with and beyond cancer the Department of Health in partnership with Macmillan Cancer Support, published the National Cancer Survivorship Initiative: Living with and beyond cancer: taking action to improve outcomes in March Recommendations for the delivery of these services includes a combination of assessment and care planning, with the aim of improving patient s wellbeing and a subsequent reduction in demand for services if they get the support that is relevant to their particular needs, and which promotes healthy lifestyles and independence. These are outlined below. 7.1 The Recovery Package The recovery package consists of three key elements: Holistic needs assessment and care plan Treatment summaries Health and wellbeing events 28

29 Holistic Needs Assessment and Care Plan The holistic needs assessment (HNA) is recommended to be completed at diagnosis and at the end of treatment. It is estimated to take an hour of nursing time to complete each HNA and this is time well invested as it reduces unplanned contacts with medical services. The completed HNA is used to formulate the patients care plan and address specific concerns raised during the assessment, giving the patient a clear plan of how these concerns will be addressed. The completion of a HNA may be expedited further, if the electronic version which is currently being piloted is implemented 63. Treatment Summaries Treatment summaries are communicated to the patient and their GP following the patient s primary treatment. The summaries document the care provided in the hospital, details of prognosis, future treatment plans and consequences of treatment, as well as highlighting the signs of potential recurrence. The summaries include the read codes used by GP IT systems to highlight that the patient had cancer, their treatments, and whether they are at risk of developing any further conditions as a consequence of their treatment such as diabetes, osteoporosis or cardiac disease. The provision of this information empowers patients and primary care professionals to manage the consequences of treatment in the community, but in cases of concern it should highlight who to contact. Discussions are currently taking place at Kingston Hospital regarding treatment summaries and their implementation. Health and Wellbeing Events These are patient education and support events that aim to enable patients to have the confidence to take control and participate in their recovery by providing information on the consequences of treatment, signs of recurrence, financial support, local services, as well as promoting healthy lifestyle choices. Kingston patients are treated at various hospitals within South West London, and as such their ongoing care is provided in conjunction with these hospitals. Within the different tumour sites a variety of health and wellbeing events are provided to support people living with and beyond cancer. 29

30 Local Delivery Kingston Hospital provides aspects of the recovery packages for five of the main tumour groups. Treatment summaries are currently in development and discussions are taking place with the local tertiary centres prior to their release. Breast Cancer: Kingston Hospital are rolled out the recovery package for breast cancer patients in early 2016 through a variety of workshops, where different aspects of life with and beyond cancer is addressed. Lung Cancer: Patients are invited in to clinic setting where they will have the opportunity to discuss their health and wellbeing needs with a CNS, this will include completion of an HNA, following which they will then be signposted as necessary to the relevant services. Colorectal Cancer: The majority of Kingston patients with colorectal cancers are treated at the Royal Marsden Hospital (RMH) and St Georges Hospital (SGH) therefore ongoing patient care will be co-ordinated with London Cancer Alliance, which Kingston Hospital will then participate in. Gynaecological Cancers: Kingston Hospital manage a small number of gynaecological cancers, with the majority being treated at RMH. Patients will undergo a HNA with the Gynaecological Clinical Nurse Specialist (CNS), and they will then link in with the team at RMH. Urological Cancers: The majority of Kingston patients with urological cancers are treated at the RMH. 7.2 Stratified pathways for the follow up of cancer patients Supporting patients to self-manage their own health and wellbeing can help meet unmet needs, reduce demand on services and hence lessen costs by reducing the number of follow up appointments. It has been recommended by the National Cancer Survivorship Initiative, that following initial treatment, patients should be assessed for their risk of further disease and consequences of treatment to help determine their follow up. Variables, such as the location and type of cancer, and the individual needs of the patient means that they can then be stratified for follow up according to need, therefore reducing the number of unnecessary hospital based follow up appointments for some, whilst freeing up services for those with more complex needs. 30

31 At the beginning of 2016 Kingston Hospital appointed two new Nurse Practitioners to promote and implement the use of stratified pathways for follow up for patients within Kingston. They are going to be setting up the stratified follow up clinic for breast cancer patients initially, which will mean women have annual telephone follow up appointments, in addition to their annual mammograms and run a one stop clinic for women who have had breast cancer and have any concerns. It is anticipated that by having more follow up appointments made over the phone this will increase capacity for new patients referred under the 2 week wait. This will bring Kingston in line with other local trusts which are already providing this service. It is hoped that this transition of follow up will either be cost neutral or cost saving over the long term. The following stratifications have been proposed based on individual needs 64 : Supported self-management When patients are given information about self-management support programmes or other types of available support, clinical signs and symptoms to look out for and whom to contact if they notice any, scheduled tests they may need (such as annual mammograms), and how to contact relevant professionals if they have any concerns. A pilot in 2009/10 by NHS Improvement 65 looked at risk stratified pathways for the follow up of patients with breast, lung, colorectal and prostate cancer across seven sites in the UK, and they concluded that an increased number of patients could be supported through a selfmanagement pathway. In January % of Kingston hospital patients with breast cancer were currently being managed through open access with a delivery plan of 70% by end 18/19. Shared care When patients continue to have face-to-face, phone or contact with professionals as part of continuing follow-up. Care is commonly shared between primary and secondary care. A shared care stratified follow-up pathway for prostate cancer model is under development in Kingston. The new model will enable patients to receive personalised clinical follow up until their disease is deemed stable, at which point those deemed eligible for entry onto a supported self-management pathway will be discharged into primary care. The model was developed by London Cancer and has been piloted in a London borough. The implementation of the model across London is being led by Transforming Cancer Services Team for London Complex case management When patients are given intensive support to manage their cancer and/or other conditions. 7.3 Consequences of treatment Lymphoedema 31

32 Lymphoedema can be distressing and debilitating for the patient, and consequently have a detrimental effect on quality of life. The prevalence of lymphoedema is estimated to effect between 80,000 and 124,000 people in the UK 66, and can either be primary or secondary; for example following surgery or radiotherapy for cancer. A study conducted in 2003 across the South West London Community Trust found a prevalence of 1.33/1000 for all ages, however this number increased with age 67. Patients have been shown to see a greater reduction in their swelling when seeing specialist lymphoedema practitioners, which includes nurses, occupational therapists, physiotherapists and lymph drainage specialists compared to non-specialist services 68. It is estimated that the NHS saves 100 in reduced hospital admissions for every 1 spent on lymphoedema treatments that limit swelling and prevent damage and infection 69. Levels of lymphoedema care: Level 1 Supported self care management Level 2 Long term management (disease/specific management) Level 3 Intensive management (High complexity case management) The National Institute of Clinical Excellence published updated guidance in 2014 on the management of patients with or at risk of lymphoedema related to breast cancer. It stated that there was no evidence that exercise would prevent, cause or worsen lymphoedema, and it went on to say that exercise may have a positive role in improving quality of life in those affected or at risk. Currently Kingston Hospital CNS s provide level 1 care of lymphoedema, more severe cases are referred to RMH for ongoing care. Pelvic Radiation Pelvic radiotherapy carries a risk of long term effects on nearby structures, including the bowel, bladder and reproductive organs. Simple interventions for people who have received pelvic radiation therapy include: doing pelvic floor exercises, moderating dietary fat and fibre, and increasing people s awareness of the toilet card scheme and radar keys. All of which can allow some people to self manage, and potentially avoid more serious problems. For ongoing symptoms 6 months after completing treatment, or symptoms unresponsive to self management there should be local guidelines for referral to a named clinician who is the local lead for relevant consequences of treatment 70. Kingston residents currently receive their radiotherapy at RMH and subsequent side effects 32

33 of their treatment are managed by a team within RMH. Sexual dysfunction Sexual dysfunction is hard to define. Cancer treatments can result in functional changes, physical disfigurement, and altered relationship dynamics, all of which can affect an individual s ability to have and enjoy sex. Macmillan estimates that 350,000 patients in the UK experience sexual consequences of cancer and its treatment, however despite this, identification and management of effected individuals is often suboptimal 71. In one study 53% of men and 24% of women who received radiotherapy to their pelvic region reported difficulty maintaining a sexual relationship, with some reporting effects up to 11 years after treatment 72. In Kingston the Cancer Clinical Nurse Specialists currently offer support to patients affected by sexual difficulties after treatment, however London Cancer Alliance are currently in the process of developing pathways for these patients further. Fertility Male and female gonadal toxicity are common side effects of cancer treatments and some cancers themselves. It is estimated that around 4% of cancer diagnoses are made in people aged years, and as such it is necessary that there are agreed pathways for the management of fertility in affected individuals. London Cancer Alliance (LCA) produced a Fertility Guideline in 2014 with recommendations for fertility preservation for people with a cancer diagnosis treated within the LCA provider trusts. Kingston CCG currently offer men and women who are preparing to undergo medical treatment for cancer, which is likely to make them infertile, the option of cryopreservation. They will provide storage for either; up to 10 years, the woman s 43 rd birthday or a live birth, whichever is soonest. Following this fertility treatments are then provided in line with the Kingston CCG assisted conception guidelines. Psychological impact Around 1 in 4 patients with cancer will require psychological assessment following their diagnosis, and 1 in 10 will require care from a psychiatrist or a clinical psychologist 73. Levels of care can be divided in to 2 distinct categories; Level 1 and 2 provided by professionals who have been trained in the assessment and management of psychological problems, but are not specific mental health specialists, whereas Level 3 and 4 support is provided by mental health/psychological support trained professionals. LCA Psychological Support group have proposed a hub and spoke model of care for optimising the delivery of psychological services which would involve a Psychology Support MDT within 33

34 each of four central hubs (Royal Marsden Hospital (RMH), SGH, Guys and St Thomas and Imperial) who would provide a single point of access where referrals would be triaged and signposted to the relevant speciality. Social impact The social impact of cancer is considerable, not only for the individual but for family, friends, carers, employers and work colleagues. Taking an integrated approach to health and social care for an individual is essential for easing the social implications of living with and beyond cancer. In 2004, following the publication of Improving Supportive and Palliative Care for Adults with Cancer by NICE, Kingston Hospital and Kingston Council jointly appointed a specialist social worker to work within the cancer and palliative care teams at the hospital. Their role involves helping patients with issues around housing, finance, employment and/or childcare or caring roles; areas which may often lead to a lot of anxiety following such a life changing diagnosis. Their work provides help and support to patients, as well as providing a link with ongoing care needs in the community following discharge. Referrals to the service can be made by the patient themselves, or the more frequent route is via the CNS s who work alongside the social worker. The majority of the referrals come via the Oncology CNS s, although patients can also selfrefer and are given contact details in their information packs. Kingston is in a unique position, having a social worker who covers not only the needs of palliative patients, but those with a diagnosis of cancer, setting Kingston apart from other local trusts. The help and support provided by this service will only continue to improve patient experience The current psychology service provision at Kingston Hospital consists of two psychotherapists who provide level 4 support. They are supported by an oncology CNS who is able to provide level 1 and 2 support to Kingston patients. In addition to this, they have access to a counselling service specifically for cancer patients. The psychology unit works in close relationship with the psychiatric liaison team for those who may benefit from specialist psychiatry input, the lead clinicians for each patient, as well as the palliative care team and the spiritual support, particularly for those in the terminal stages of their illness. All those diagnosed with cancer requiring psychological support and who are being treated at 34

35 Kingston Hospital or the RMH are eligible for referral. Patients can either self-refer to be referred into the psychology service by their doctor or nurse. There is usually an initial session where all referrals are seen at least once and have their psychological needs assessed. Depending on their needs, patients are then offered a package of up to 8 sessions (50 minutes each), which is followed up by with either a referral to their GP for ongoing support in the community, or referral to a tertiary psychotherapy service for further intensive therapy. Examples of common conditions seen in cancer patients include anxiety, behavioural disturbances, e.g. sleeplessness, loss of appetite, social exclusion/withdrawal, lack of rapport, depression, phobias, e.g. about receiving chemotherapy/radiotherapy, sexual difficulties, body image dysmorphia and issues around dying/loss of functionality. The psychology unit also offers services for spouses, couples and carers. 7.4 The Cancer Care Review The Cancer Care Review (CCR) takes place within Primary Care, between the primary care professional and the patient, usually following the primary treatment but within 6 months of diagnosis. It is a holistic assessment which aims to cover psychosocial as well as physical needs of the patient and their carers, as well as aid self-supported management in line with other long term conditions. However despite CCR being part of Quality and Outcomes Framework (QOF) both patients and healthcare professional s expressed a dissatisfaction with the CCR due to the lack of guidance surrounding its completion. Much work has gone in to trying to improve the CCR, which will in turn increase its use and result in improved outcomes and a more positive patient experience. A four point model has been proposed by TCST which includes: 1. Patient added to the cancer register defining a cohort of patients with a condition or risk factor 2. First contact after diagnosis inviting the patient to the practice for a holistic conversation or telephone appointment 3. Second contact following primary treatment Holistic CCR to be completed 4. Cancer incorporated and reviewed at an annual long term conditions(ltc)review Macmillan have also developed a CCR Template which is compatible with GP IT systems in line with other chronic condition templates to ensure consistency and quality between clinicians. Following the development of the template, patients and GP s reported positive feedback on its use, in particular prompts for reviewing medication and noting carers contact details In Kingston there is currently variation in practice regarding CCR s and minimal data regarding its use within Primary Care. With the assistance of our Macmillan GP, we are hoping to 35

36 promote its use further through training sessions within GP practices. 7.5 Active and Supportive Communities Strategy This is a joint strategy on behalf of Kingston Council s Adult Social Care (ASC), Public Health and Housing Departments, the Kingston Clinical Commissioning Group (KCCG) and voluntary and community sector (VCS) organisations. This strategy has three strands and sets of outcomes (for individuals and communities): 1. Building and strengthening resilient communities through engagement, involvement and local decision making 2. Providing a universal offer to people across the borough, such as enhanced information and advice provision and work that will target people who might have low level needs to enable them to access a variety of support through being active and involved in their community 3. Work that will target more disadvantaged and vulnerable people that might be considerably more at risk of social isolation and ill health. This includes reviewing existing commissioning arrangements and developing joint commissioning intentions (across service areas and organisations) and joint procuring where appropriate, to deliver shared outcomes For those living with and beyond cancer this includes: Information regarding employment after cancer High-quality information and the tools to help people support themselves throughout their cancer journey Advice and support to help people get back to work including volunteering opportunities Support for carers, including assessment of their needs Involving people living with or beyond cancer in the development of services (community voice) Health professionals, social care and voluntary organisations working closely together to help support people living with or beyond cancer. 7.6 Physical activity It is well documented that physical exercise can reduce your risks of developing cancer, however it has also been shown to have a positive effect on patients living with and beyond cancer. 36

37 It can improve experience of, and recovery from cancer treatment Reduce the rate of recurrence and mortality Reduce the risks of developing other associated conditions Maintain independence and wellness towards the end of life Reduce service usage Kingston Get Active team currently provide Kingston Health Walks in association with Macmillan, specifically for cancer patients and their carers or companions on a weekly basis. In addition to the benefits of physical activity there is also the added social element and widened social support. Kingston residents are also able to be referred to the Get Active Programme via their GP for a 12 week individualised exercise plan, comprising of tailored assessments, private consultations, and ongoing support and advice with an exercise specialist. 7.7 Social Prescribing Social prescribing is a mechanism for linking patients with non-medical sources of support within the community. Kingston Public health and CCG and working with Macmillan to pilot a Social Prescribing service which focuses on helping people who have, or have had, cancer to access a variety of holistic, non-clinical services. Rigorous evaluation of the pilot will be completed to ensure the model is sustainable and achieving the maximum benefit for patients. 7.8 Recommendations 1. Define cancer as a long term condition within integrated frameworks. 2. Support the delivery of primary care education about cancer as a long term condition. 3. Continue with the roll-out of the Recovery Package and to include treatment summaries across tumour sites. 4. Ensure that HNAs, care plans and treatment summaries are shared with primary care and that explicit consequences of treatment clearly outlined. 5. Design, implement and review stratified pathways for follow up, whilst also recognising the interplay between these and the implementation of the Recovery Package. 6. Provide post-treatment patients with optimal management for long term conditions and secondary prevention advice. 7. Provide training and education to primary care teams on increasing awareness of the recovery package and implementation of the Cancer Care Review. 37

38 8. Continue to commission specialist services for lymphoedema, sexual dysfunction, pelvic radiation and psychological services, whilst ensuring MDT s have appropriate referral pathways to access services. 9. Increase access of the psychology services, particularly increasing the number of staff available and working hours. 38

39 8. IMPROVE ACCESS TO HIGH QUALITY END OF LIFE CARE The GMC uses the following definition, People are 'approaching the end of life' when they are likely to die within the next 12 months. This includes people whose death is imminent (expected within a few hours or days) and those with: advanced, progressive, incurable conditions general frailty and coexisting conditions that mean they are expected to die within 12 months existing conditions if they are at risk of dying from a sudden acute crisis in their condition life-threatening acute conditions caused by sudden catastrophic events" 75 End of life care (EoLC) therefore describes the 12 months before death and encompasses the care given across all settings (including a person s own home). Around half a million people die each year, with around three quarters of deaths being expected, therefore approximately 355,000 people per year are in need of Palliative Care Services. It is estimated that 171,000 people currently receive Specialist Palliative Care Services and a further 50% of the remaining people have their needs met via non specialist services such as generalists (e.g GP s and social services). This means that an estimated 92,000 people still have unmet needs in their end of life care. 8.1 Local picture Kingston CCG has a GP registered population list of circa 195,000 with around 1,200 deaths per year viii. The average life expectancy at birth in Kingston is 80.7 for males and 83.7 for females, which is 2.8 and 0.6 years longer respectively than the UK average. The Office of National Statistics (ONS) projects that Kingston s population will increase by 22.8% between 2011 and As the population of older people in Kingston increases so too will the prevalence of long-term life limiting conditions such as dementia, leading to a greater demand on existing resources. With the Kingston population having a longer life expectancy and the increasing prevalence of chronic conditions, there is a need for greater partnership working between public, independent, community and voluntary sector organisations; to design, develop and deliver the cohesive services collaboratively. A Pan London End of Life Alliance was launched in November 2013 bringing together key partners from clinical commissioning groups, local authorities, NHS and independent 39

40 providers, the voluntary sector; and patient and carers groups to support and promote patient-centred, coordinated care commissioning and delivery across London. It is expected that this will be an important resource for commissioners in improving EoLC across the capital. Prior to July 2014 patients with terminal illness were often cared for using the Liverpool Care Pathway (LCP), however following a review of its use in 2013 this was withdrawn as it was felt there was a lack of personalised and tailored care for the individual, and the LCP was for some, a tick box exercise. In a system-wide response to the review One Chance to Get it Right was published which identified five key priorities to outline the best practice in caring for dying patients and their loved ones, which involves assessing and responding to the holistic and changing needs of an individual and their families 76. The five priorities were: 1. Identify: The possibility that a person may die within the next few days or hours is recognised and communicated clearly, decisions made and actions taken in accordance with the person s needs and wishes, and these are regularly reviewed and decisions revised accordingly. 2. Communicate: Sensitive communication takes place between staff and the dying person, and those identified as important to them. 3. Involve: The dying person, and those identified as important to them, are involved in decisions about treatment and care to the extent that the dying person wants. 4. Support: The needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible. 5. Plan and do: An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, coordinated and delivered with compassion. These themes echo the NICE Quality Standards, End of Life Care for Adults (QS13) xx and Guidelines and Care of Dying Adults in the last days of life (NG31) xy One of the aims highlighted in the South West London Collaborative Commissioning of Cancer Services was on improving patient experience; this includes patients having the right to decide where they would like to die and being supported in this decision to die with dignity in their location of choice 77. Current services are failing to meet patients requests to die in their preferred place, with around 70% of people preferring to die at home, but only 42% achieve this nationally and 35% within London 78. Estimates suggest that 90% of people s final 12 months are spent at home, 40

41 yet only a minority actually die there, with hospital deaths being more common in the poor, solitary women, people with long term illness and the elderly 79. As shown in figures 8.1 and 8.2 below, data from the National End of Life Care Intelligence Network show that the place of death for the majority remains the hospital setting, and this is consistent for all causes of mortality and cancer. Figure 8.1 Place of death (all causes) Source: National End of Life Care Intelligence Network data Figure 8.2 Place of death, cancer as cause Source: National End of Life Care Intelligence Network data Whilst it appears that Kingston has a significant difference in the number of people dying at home compared to the England average, it is worth noting that this difference is reflected in the greater proportion of patients dying in a hospice in Kingston compared to England, this is true of both all causes of mortality and cancer, but more significant in the cancer patients. According to the National EoLC Intelligence Network data (2014), the proportion of deaths in hospital is 55.4% of all deaths in Kingston (England average = 54.5%, with the best locality in England achieving 42.2% of deaths in hospital) 80. In Kingston we must therefore ensure that 41