Developing plans to address patient experience and inequalities

1. Developing plans to address patient experience and inequalities Final plan submitted 12th April 2019 Project leads: Amelia Randle, Clinical Lead Nicola Gowen, Transformation Project Manager Somerset, Wiltshire, Avon and Gloucestershire Cancer alliance

2. We plan to gain a better understanding of patients with mental health conditions so that we can improve access, experience and early diagnosis Executive summary • Patients with mental health (MH) conditions are an understudied cohort whose access, early diagnosis and experience of cancer pathways is not comprehensively understood. There is very little data on MH patients on cancer pathways, although academic studies demonstrate that those with diagnosed conditions have higher mortality rates for cancer than the general population, and interviews with clinicians and patients have indicated that patients with mental health conditions have a poorer experience along cancer pathways.* • This could be due to a combination of factors including: patients with MH conditions not being a target audience for public health campaigns; a reluctance amongst the patient cohort to see their GP; physical difficulty in attending appointments; and mental health conditions masking cancer symptoms. Problem Vision • Our vision is to reduce health inequalities experienced by cancer patients with mental health conditions across SWAG in order to ensure that this group of patients benefit from earlier and faster diagnosis initiatives. We would like to contribute to a growing awareness of the patient voice for those with mental health conditions so that we perceive qualitative and quantitatively measured improvements to their access and experience of cancer pathways, as measured by clinicians and patients. Patients with mental health conditions should be fully informed and engaged in their treatment and clinicians should be aware of their specific needs and how they can best support this group. • Our plan provides a structured approach to gaining an improved understanding of patients with mental health conditions, and turning these into deliverable interventions. Patient input is central to the understanding of the problem and the design of the solutions, and the first phase of the plan will be focused on gathering patient feedback. • Evaluation methodologies will be developed based on the interventions identified. They will include a combination of qualitative and quantitative measures, focused around improvements in access, early diagnosis, and patient experience. Our plan *Chang C, Hayes RD, Broadbent MTM, et al A cohort study on mental disorders, stage of cancer at diagnosis and subsequent survival BMJ Open 2014;4:e004295. doi:

3. Contents Delivery plan contents

4. 1. The problem Patients with mental health conditions report poorer patient experience along cancer pathways and studies suggest that they have higher mortality rates than the general population (1 of 2) Context • The alliance has been tasked, as part of planning guidance, to develop a plan for 2019/20 to improve access, early diagnosis and experience for patients with protected characteristics, and SWAG have chosen to focus upon a cohort with mental health conditions • In the past six weeks, we have engaged with clinicians and mental health patients, but have faced challenges in accessing this seldom-heard cohort in such a short-timeframe. This analysis has been useful in establishing the patient voice, which is why the alliance team are keen to expand upon this before considering delivery of interventions. We have, therefore, developed a plan for a suggested extended three month discovery phase to engage further with patients, followed by a period of co-design of interventions and a longer evaluation piece. • Improving experience of care, achieving earlier diagnosis and reducing health inequalities are key parts of the NHS Long Term Plan and core components of SWAG’s transformation plans. The alliance has chosen to focus on a cohort with mental health conditions to build upon previous work undertaken to understand the patient voice for those with learning disabilities. Building a more comprehensive picture of the experiences of those with mental health conditions in accessing cancer services will allow specific interventions based upon rigorous patient engagement to be implemented in 19/20. Context *Chang C, Hayes RD, Broadbent MTM, et al A cohort study on mental disorders, stage of cancer at diagnosis and subsequent survival BMJ Open 2014;4:e004295. doi: 10.1136/bmjopen-2013-004295

5. 1. The problem Patients with mental health conditions report poorer patient experience along cancer pathways and studies suggest that they have higher mortality rates than the general population (2 of 2) Problem definition • National studies have shown that those with diagnosed mental health conditions have similar incidence rates for cancer as the general population but significantly higher mortality rates.* • Clinician feedback suggests that patients with mental health conditions have poorer access to cancer services and poorer experience once they are on cancer pathways. Qualitative evidence also suggests that patients with mental health conditions tend to be diagnosed later than the general population for a number of potential reasons including later presentation. • Once on the pathway, clinicians report that they are more likely to miss appointments or drop off the pathway due to poor early experiences influencing their perception of healthcare, or inadequate support for their additional needs from clinical staff. Problem Definition *Chang C, Hayes RD, Broadbent MTM, et al A cohort study on mental disorders, stage of cancer at diagnosis and subsequent survival BMJ Open 2014;4:e004295. doi: 10.1136/bmjopen-2013-004295

6. 1. The problem Clinicians raised a number of themes around access for mental health patients including behaviours of patients and staff, information and additional support Patients do not feel confident going to their GPPatients may have had a negative experience of the health system in the past or are worried they may experience stigma because of their condition. They may not have continuity of GP, requiring information to be repeatedly shared. Patients do not make appointmentsThey may struggle with planning ahead or being persistent enough to make an appointment for weeks in advance. Patients need greater attention than the GP can offer themMH patients may want to be the only focus for the person they are talking to. They may need longer than a typical ten minute GP appointment. GPs are also better at detecting physical health issues than mental health ones which may require a longer appointment and more sustained engagement with the patient. It is difficult to maintain contact with patients along the pathwayPatients may experience stigma from healthcare professionals (HCPs) or other patients which puts them off the health service. They can struggle with a high stimulation environment and repeating themselves to different HCPs. Medication for Mental Health conditions can mask cancer symptomsCancerous symptoms described by the patient may be mistakenly attributed to their medication. Information about MH patients is not transferred from primary to secondary careThis requires GPs to actively make free text notes about the mental health conditions of their patients and requires a simple system to support this transfer of information. MH patients can be time consumingThey need to be followed up by GP, hospital staff, which means they can miss out because they are ‘hard work’ or lack of time. Clinician view of the key issues facing mental health patients with cancer

7. 1. The problem Patients raised a number of themes around access including perceptions of the pathway and a need for greater support Desire not to use NHS resourcesPerception that there are far more important/deserving cases to take up NHS resources and that GPs are busy and should only be contacted in an emergency. Reluctance to follow up‘They will tell me if there is something I need to know’ is a prevailing attitude rather than phoning to follow-up appointments or test results. Need for consistent supportChanges in support staff are particularly unsettling for this group. This requires them to build new relationships which is time-consuming and may influence their interactions with healthcare professionals. Length of appointmentsMental health patients need longer appointments because they need more support. Low awareness of other support servicesThey are interested to know what other support might be available but are hesitant to specifically ask for this support. Need to get back to work as quickly as possible/can’t take time offDue to their conditions, they may have had more time off work than most and may not go to hospital or the GP because of this. Access to reliable informationWord of mouth of poor experiences may influence their treatment choice (e.g. refused chemo as didn’t want to go through it) Key issues highlighted by patients (so far*) – more feedback required * 5 patients interviews were completed – all 5 with patients with mental health conditions, 1 of whom also has cancer. Challenges in accessing patients are detailed in the next section.

8. 1. The problem Analysis of patient and clinician feedback showed common themes Main theme identified: More support required Longer appointments needed (identified by both clinicians and patients) Need for consistent support i.e. person they get to know and trust (from patient feedback) Need more attention than GP can offer (clinician feedback) Would like to know what other support services are available (patient feedback) Need for specialist knowledge/awareness of MH signs in Primary Care (clinician) Secondary theme: Not making contact with the health service Don’t want to be a burden on the NHS (patient feedback) Don’t make appointments because of difficulty or lack of confidence or fear of stigma (clinician feedback) Don’t follow up for results as expect to be told if it’s important (patient feedback) Common issues shared by clinician and patient feedback

9. Contents Delivery plan contents

10. 2. Vision Our vision is to improve access, early diagnosis and patient experiencefor those with mental health conditions Vision • Our vision is to reduce health inequalities experienced by cancer patients with mental health conditions across SWAG in order to ensure that this group of patients benefit from earlier and faster diagnosis initiatives, improved access and patient experience. • We believe that better awareness of mental health issues among clinical staff in both primary and secondary care will reduce the number of patients dropping out of the system and improve their general interactions with healthcare services. We believe that improved knowledge and awareness of mental health conditions and the symptoms will help with diagnosis of cancer in primary care. We also believe that better communication about the individual from primary to secondary care will positively impact experience and outcomes, for example, flagging a patient who has pre-existing mental health conditions in a GP 2-week wait referral. What success will look like: Early diagnosis Patient experience Patient access Diagnosing cancer in patients with mental health conditions earlier to improve their outcomes Improving the experience for those with mental health conditions who frequently report a need for greater support Ensuring that access through the pathway is equal and that patients with mental health conditions do not face undue delays

11. Contents Delivery plan contents

12. 3. Delivery plan We will use a ‘double diamond’ methodology to understand patient experience, define the problem and prioritise solutions Double diamond methodology In the third phase, we aim to expand our focus, gathering best practice and running co-design workshops with patients and clinicians to understand the range of ways we can improve In the first phase, we aim to expand our focus, gathering patient input from different sources and using different methodologies to gain a nuanced understanding of mental health patients’ experience In the second phase, we aim to narrow our focus, presenting back key themes to the alliance to agree on which problems to prioritise In the fourth and final phase, we aim to narrow our focus, prioritising the interventions that will have the greatest impact and moving to delivery Prioritise delivery planning for most impact Talk to patients, interviews, engagement Focus on themes and define problem Best practice, co-design April 2019 July 2019 August 2019 September 2019

13. 3. Delivery plan We suggest that the next six months will focus on discovery using the existing questionnaire and holding two workshops to develop interventions Discover Agree whether to focus on a broader cohort of all mental health patients (which will be more accessible via voluntary organisations like Turning Point), or a more specific cohort, (eg. schizophrenia, which could require a more time-intensive Cancer Patient Experience Survey driven approach to identify those with diagnoses) Use the existing patient questionnaire as the starting point for the collation of more qualitative data for MH patients Define Hold a clinician workshop to assess patient feedback, gather staff feedback, consider alignment with current plans and to brainstorm and prioritise potential interventions Develop Collect best practice around the chosen interventions and develop plans further, including further testing of interventions with patients Deliver Hold a second clinician workshop to agree how to deliver interventions, by scoping out roadmaps, resourcing, target impact and the evaluation approach Outline activities The Alliance has prioritised identification of resource to both deliver this plan and initiate immediate engagement activities with stakeholders in the region. The first 6 months of the plan will involve the following stages:

14. 3. Delivery plan Our potential plan for the next 12 months starts with three months of ‘discover’ focused on patient engagement and experience 2019/20 roadmap for delivery of interventions (1 of 2)

15. 3. Delivery plan As we begin to deliver our co-design interventions in Sep 19, we will implement a rigorous evaluation approach 2019/20 roadmap for delivery of interventions (2 of 2)

16. Contents Delivery plan contents

17. 4. Discover We will engage with more patients in this phase through the online questionnaires already available to NHS Trusts and Turning Point Possible routes for patient engagement, with recommended routes highlighted The following routes to engage with patients have been attempted as part of the current work, and we suggest continuing to access patients through the online questionnaires provided to Turning Point and to acute and mental health trusts

18. 4. Discover The method by which ongoing patient engagement should take place is through online questionnaires as these are readily available and resource neutral Possible methods for engagement, with recommended methods highlighted The following methods of patient engagement have been considered and attempted, leading to a prioritisation of the online patient questionnaire for the next stage of Discovery

19. 4. Discover Online questionnaires do not require significant resource, given that the system is already in place and there is a patient engagement lead who could engage with analysis Resource impact of patient engagement methods; recommended methods highlighted

20. 4. Discover We will also link in with the ongoing work around screening and rapid diagnostic services which could target the issues raised by MH patients Key issues highlighted by patients aligned to current work Reluctance to follow up The alliance has resource to implement a programme to increase uptake of screening with Public Health England. Clinicians believe that MH patients present later and thus miss out on early diagnosis. Therefore, this project could focus some resource on advertising screening to those with mental health conditions and supporting them through the process to improve their rates of early diagnosis Need for consistent support The alliance has resource to implement Rapid Diagnostic Services across the region, to be focused on primary care networks with enthusiastic GP champions. MH patients have identified a need for greater support which could be partially fulfilled through Rapid Diagnostic Services. For example, they could be piloted in areas with high prevalence of mental health diagnoses, or the services could ensure that specific support is offered to MH patients in organising and managing their appointments and scans The alliance already has patient navigators in role across a number of tumour types, including colorectal and head and neck. These navigators could receive specific training in supporting those with MH conditions to improve patient experience and access along the pathway Length of appointments Patients with Learning Disabilities are routinely given double appointment slots at GP practices across the region. This similar support could be offered to patients identified on GP registers as having mental health conditions

21. 4. Discover As we gather patient feedback, we will establish a rigorous approach for information governance Information governance – SWAG approach for NHS Trusts/GP Practices

22. Contents Delivery plan contents

23. 5. Example ideas As we move into the design phase, we will gather best practice and co-design possible interventions with clinicians and patients Example intervention: GPs recording information about patients’ additional needs Case for change Clinicians report an inconsistency of information about patients and additional needs being transferred from primary to secondary care which leads to a poorer patient experience, particularly for those with mental health conditions for whom adjustments need to be made The big idea: What will be and feel different Patients across the alliance will be able to notify healthcare professionals of any additional needs they may have through inclusion of a new question on 2 week wait GP referral forms asking ‘whether there is anything that their health professional should know about them which could help with their further treatment?’ Patients will be more involved in their treatment which will make their experience more positive and make them more likely to attend appointments. Patients express a desire not to have to repeat themselves and to have more time. Healthcare professionals will have greater awareness of the specific needs of patients with mental health conditions and can plan for the additional resource/time necessary to support their needs Benefits Improved experience for patients along the pathway Earlier diagnosis for patients who should have improved appointment attendance, face less delays, and be less likely to be dismissed from the pathway due to missed appointments if their needs are met More patient co-design and input to cancer pathways leading to better ongoing engagement

24. 5. Example ideas As we move into the design phase, we will gather best practice and co-design possible interventions with clinicians and patients Example intervention: Training of patient navigators to support MH patients Case for change Clinicians report that patients with mental health conditions frequently find it harder to navigate the healthcare system than the general population which leads to poorer patient experience and worse early diagnosis rates if these groups miss appointments and are dismissed from the pathway The big idea: What will be and feel different Patients initially on prostate and colorectal pathways with additional needs arising from mental health conditions, will have access to a trained patient navigator as a point of contact during the pathway to diagnosis. Dedicated support for those identified as potential beneficiaries at GP referral stage, will improve experience for mental health patients and contribute to earlier diagnosis by reducing the number of DNAs and patients who are consequently dismissed from the pathway. Patients express a need for more support and to know who to contact to ask questions. Navigator training will help to identify those patients who would benefit from additional support and enable this support to be delivered virtually and in-person along the pathway. Benefits Improved training allows staff to deliver a better service for patients that effectively takes into account individual needs Improved experience for mental health patients along the pathway Earlier diagnosis for patients who should have improved appointment attendance, face less delays, and be less likely to be dismissed from the pathway due to missed appointments if their needs are met

25. Contents Delivery plan contents

26. 6. Evaluation As we move into the evaluation phase we will develop a set of metrics to understand improvements in access, ED and experience Metrics Early diagnosis Patient experience Patient access

27. Contents Delivery plan contents

28. 7. Governance The SWAG Cancer Alliance owns this delivery plan, with governance to ensure accountability and information sharing with other stakeholders SWAG Cancer Alliance Board (Lead: Amelia ) • Governs delivery plan • Reviews evaluation outcomes and agrees next steps • Agrees how this could scale up • Monthly call with other stakeholders NHS England (patient experience team) • Quarterly call to update on delivery progress and escalate key risks/issues • To share evaluation outcomes so far and discuss feasibility of scaling up/next steps • Supported by highlight reports NHS Trust leads & Other partners • Lead on implementation of the delivery plans, and hold initiative leadsaccountable for progress • Lead on evaluation and proposing plans for scaling up/sustainability • Monthly call with alliance and quarterly call with NHS England and alliance Initiative leads • Responsible for on the ground delivery of initiatives • Report feedback from staff and patients to initiative leads

29. Contents Delivery plan contents

30. 8. Next steps The next steps are for the alliance to agree the specific mental health cohort and follow up with organisations on the patient questionnaire Next steps

31. Contents Delivery plan contents

32. 9. Appendix Workshops and interviews identified other potential routes to patient engagement which would have additional benefits if the resource and funding were available Additional routes to patient engagement Engagement with patients through Turning Point has been identified as the course of action for this delivery plan due to the range of patients with mental health conditions accessible and the resourcing availability. However, with further resourcing, we could use alternative routes to further patient engagement that have additional benefits such as specificity of target cohort and access to groups who are not self-selecting.

33. 9. Appendix Our first workshop focused on staff and patient experience along cancer pathways and drew out some key problems (1 of 2) Staff experience Before patient decision to present GP contact Tests and cancer diagnosis Treatment and follow-up

34. 9. Appendix Our first workshop focused on staff and patient experience along cancer pathways and drew out some key problems (2 of 2) Patient experience Before patient decision to present GP contact Tests and cancer diagnosis Treatment and follow-up

35. 9. Appendix Our first workshop also focused on initial ideas for interventions that could address the key problems Ideas for interventions Information on additional needs being transferred from GP to secondary care • Include a question on 2 week wait GP referral forms which asks patients whether there is anything that their health professional should know about them which could help with their further treatment? • Best practice would be a cloud based cancer management information system between GPs and secondary care Public information campaigns for patients with mental health conditions • Current campaigns focus on one/a few symptoms and are quite blunt as a tool for those with mental health conditions who might have greater anxiety about their health • Questions around how this would be undertaken and how to target these groups? Mental health training for patient navigators • Patient navigators in colorectal and prostate currently undertake a more administrative role around organising appointments and scans and following up results • To be a consistent point of contact with patients, they could have training around mental health conditions so that they can offer additional support • This could then be rolled out to further tumour types once the resources for the patient navigators are in place Education for GPs re mental health e.g. using Symphony practices as a pilot site Reducing emergency presentation from care homes (spotting symptoms in elderly population)

36. 9. Appendix Patient interviews (5 patients) were focused on testing these ideas and understanding their broader view of MH support Patient feedback - Interventions 1 and 2 Comments related to intervention 1 – transferring information from primary to secondary care Yes, I would pass on information. They told me to call 999 and tell them if there was any information I wouldn’t pass on information - I don’t like to bother them unless it’s something urgent Comments related to intervention 2 – patient navigator role They told me to ring 999 any time if my pain got any worse Staff communicated with me really well, they helped me with paperwork, the legal side of things They listened to me and would come back with answers to my questions on the same day I’ve been kept well informed I learned more from other patients about my condition than from staff I had a biopsy, I don’t know the results yet and it’s 3 months later – I don’t know if I have cancer or not I don’t know who to contact (other than GP) but I wouldn’t contact them anyway, I don’t want to bother them unless it’s something urgent General points re MH support: I need a consistent point of contact, they keep changing and I have to build up relationship again – I take time to trust people Need longer appointments as I need support Don’t know what support services are available, they could have more information about other support services e.g. counselling I need to get back to work as quickly as possible, need support to do that

37. 9. Appendix Data shows that the majority of SWAG CCGs have below average rates of certain mental health conditions with the exception of Bristol, North Somerset and South Gloucestershire Data on the problem Estimated prevalence of common mental health disorders: % of population aged 16-74 using the estimate provided by NHS England to inform the 2014/15 IAPT planning cycle Long-term mental health problems (GP Patient Survey): % of respondents (aged 18+) - Percentage of all respondents to the question "Which, if any, of the following medical conditions do you have?" who answered "Long-term mental health problem". Depression recorded prevalence (QOF): % of practice register aged 18+ Severe mental illness recorded prevalence (QOF): % of practice register (all ages) Source: https://fingertips.phe.org.uk/