X Clinical Effectiveness Preventing people x Enhancing quality of life

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1 NHS IMPROVEMENT COVER SHEET This form should be used to capture ALL resources created or authorised by NHS Improvement to store or use across health care services and/or patient care pathways. Organisation Lead contact Ipswich Hospital NHS Trust Louise Smith Project Manager - Survivorship Louise.M.Smith@ipswichhospital.nhs.uk Date form completed Jan 2012 Key Improvement Domains (please indicate intended impact of your project) Quality and Outcomes X Clinical Effectiveness Preventing people x Enhancing quality of life dying prematurely for people with LTC x Helping people recover x Positive experience x Treating & caring in a safe from episodes of ill heath of care environment and protect them or following injury from avoidable harm Financial efficiencies \ Savings \ Productivity X Cash releasing Non cash Releasing x waste reduction or removal x Innovation Pathway (please select as appropriate to the case study) x Primary Care Referral x Diagnosis x Treatment x After Care End of life care x Social Care x Third sector Planned Care Unplanned Care x Secondary Care Tertiary Care Other please specify For NHS Improvement use only Reference Validated version/date V3 5/08/2011

2 NHS IMPROVEMENT CASE STUDY TEMPLATE 1. Title Living with and beyond cancer A model of care for survivorship at Ipswich Hospital NHS Trust 2) Summary The Survivorship project at Ipswich Hospital has focused on implementing a model of care for cancer patients and their loved ones/carers. This starts at diagnosis and provides them with relevant and timely information and support which will enable them to access care appropriately and have the confidence to self manage their condition following the acute phase of their treatment, wherever possible. We have tested the model on breast and prostate cancer patients, but access to our education programme and all occupational activities is open to all. One of our main priorities has been to encourage clinicians at all levels to place as much importance on assessment, information and support at the end of the treatment phase as they do at diagnosis, as this is when many patients tell us they feel most vulnerable and isolated. We also recognized the challenge for many cancer patients of being able to get their lives back on track after the emotional impact of a cancer diagnosis. So to support them we have developed an exercise referral scheme with five local leisure facilities, a swimming and cycling group and the opportunity to attend a local Care Farm which focuses on the therapeutic benefits of the outdoors. Within the care pathway we have focused on 5 key areas as outlined in the NHSI Survivorship Vision; Holistic assessment Care planning Treatment summaries Risk stratified follow up Access to education which supports self management. We have learnt that not all patients want or need this support so it should be encouraged and positively promoted but optional. Many nurse specialists do not have time within their current job plans to introduce this model of care. Involving primary care in the pathway has been challenging; difficulty in communicating with the appropriate people, attendance at meetings, correspondence being acknowledged or looked at. However the feedback we have collected from patients taking part in the project has been overwhelmingly positive. We recommend implementing this model of care across all disease sites within our Trust. See Appendix 1. 3) Context and Background Within our department our CNS team had already identified that survivorship was an area of our pathway that was not effectively considered or supported. In 2009 we set up a small steering group to consider how we could implement changes which would meet patient s needs and respond to the recommendations of the Cancer Reform Strategy. We work closely with Macmillan Cancer Support and were keen to explore the findings and recommendations of their survivorship research 2 Million Reasons. We were encouraged to be involved in the Survivorship project in 2010 by our Cancer Network, with testing of the care planning and treatment summaries. We then applied to be part of this current testing phase which involved testing stratified pathways of care. We were already aware from patient feedback that coming to the end of treatment was a frightening time,

3 and that many important needs were being left unresolved. This in turn led to anger, frustration and difficulty in being able to move on. We also considered the impact of a growing number of cancer survivors who would potentially have support and information needs. How could our team of CNS s cope with this potential increase in work load? Intuitively we felt that by bringing together all the support, information and signposting at the end of treatment, patients would be most receptive and able to think about future goals and priorities and the most appropriate point of contact for future support. We also recognized the importance of engaging with primary care, educating them about the patient s individual needs and future care, in order to encourage contact and ongoing support if required. We have a large Information Centre centrally placed within the department, run by a nurse and radiography specialist and patients are signposted here, or call in when passing to access support and information. Our first initiative was to set up an education programme which supported self management. This was open to all cancer patients once they had completed the acute phase of their treatment. For any patient attending the education programme a care plan and treatment summary was completed and one copy given to the patient and one sent to their GP. We named this the Moving On group and it is held in the Centre. Care plans are completed by the specialist who was also the project lead. At this stage we encouraged the CNS s whose patients opted to attend the programme to be involved in completing the care plans and summaries. This proved to be difficult as their clinical commitments (and possibly individual enthusiasm) meant that they were rarely able to support the project. They did however encourage patients and carers to access the Moving On programme. This in turn has grown from strength to strength and is now fully attended each month. A separate group looked at holistic assessment and introduced Trust wide guidelines for this process. We also explored the problem of follow up appointments. With an increase in new diagnoses and a growing number of survivors how would our services have the capacity to accommodate patients follow up appointments? Were they always necessary? Would the changing NHS and Cancer Commissioning mean that long term follow up appointments would not be funded? We also began to explore the potential commissioning role of GP s with regard to cancer pathways and follow up care and review. The hypothesis that the NCSI asked test sites to test was the following. By introducing risk stratified pathways of care and support packages across four tumour groups for people living with a beyond cancer we would: o Improve the patient experience o Reduce outpatient follow up outpatients appointments by 50% across all tumour groups o Reduce unplanned admissions for people with diagnosis of cancer by 10% Within this project we proposed that if the whole model of care was in place Holistic assessment, care plan, treatment summary, education programme, then not all patients would need to be followed up in the traditional way, but could be supported to self manage, always having the option to fast track back into the system if there was a suspicion of recurrence or late effects. By freeing up follow up appointments there would be the opportunity to accommodate new cancer patients, possibly re design the clinics giving more time to new appointments and pose the question to the commissioners of re investing tariffs saved into the enablers required to allow patients to self manage effectively. We also believe that by introducing an exit interview where patients have an opportunity to go through their pathway and follow up plan, assess and discuss their needs, and signpost to appropriate information and support, they are less likely to telephone their key workers, need additional follow up or re admission for poorly managed symptoms or late effects.

4 Effectively supporting those living with and beyond cancer is given high priority within our Trust. It has been widely acknowledged within our department that viewing cancer as a long term condition and acknowledging the shifts required in our approach to caring for these patients in order to meet their needs is a huge challenge but one which is potentially achievable in the longer term. Clinicians already have huge demands placed upon their time and whilst everyone we have spoken to can see both the benefits and the need, they are not always willing or able to change the way they work in order to introduce this new model of care. Whilst there has been much enthusiasm, our greatest challenge within this project has been to actually get clinicians at all levels to build this into their work plan and test the elements; the response on questioning was always the issue of time. 4) What did you do? And how did you do it? 4a). Holistic Assessment see appendix 2 Steered by Anglia Cancer Network Lead Nursing group, a sub group met at Ipswich and developed a Trust wide guideline for holistic assessment which was implemented in The key recommendations are that all cancer patients at key points in their pathway, particularly at diagnosis, treatment and at the end of treatment have a holistic assessment of their needs. This should be documented and any action/referrals taken recorded. We chose to use the Distress thermometer as our self assessment tool. Within radiotherapy use of this assessment tool and patient involvement has been high. This is partly due to the pattern of appointments - daily visits and the ability to follow up completion of the assessment in a timely manner. It is also due to the enthusiasm and commitment of our two radiotherapy specialists who devised the paperwork and have supported implementation and auditing of the tool. See Appendix 2a In other areas the nurse specialists have sometimes found it hard to collect the assessments back from patients when there is a time delay of several days or weeks between appointments, or when individuals forget to return the paperwork. Some CNS s don t always get to see their patients at every appointment. They also report carrying out the assessment as part of their general assessment without using the tool or documenting it. Whilst the benefit and importance of this assessment are recognized, sustainability according to the guideline is challenging for some areas. We recognize that every patient should have the opportunity to complete an assessment if they wish to, so we need to make sure they are well promoted and available. The recent DOH Patient experience survey indicated that they aren t always aware of the existence of an assessment, or that it is taking place. We need to ensure we explain to patients what we are doing and why. Evidence shows that when clinicians value the assessment and encourage participation patients and carers' do too. We are considering the role of our user group and trained volunteers to support these assessments in order for them to be more widely available. The information gathered can be used to inform the care plan. Development of Risk criteria see Appendix 3 Breast within our breast services we already have an established in house mammography service for cancer patient s yearly mammograms following treatment. Wherever possible all patients are discharged from routine follow up at 2 years, some earlier. The team were very willing to explore their pathways and see if with the introduction of this new model of care there might be more patients that could be safely risk stratified on to the Green supported self management pathway earlier. The breast team identified that all breast cancer patients are discussed at their MDT meeting where it would be possible to risk stratify each individual after discussion. The MDT chose to use the Nottingham Prognostic index. They would then inform the patient of this decision at their next appointment and forward a copy of the pathway form - (see appendix 3), to the project lead

5 The team reported that patients were happy with this follow up pathway and still had the option to remain in face to face follow up if they preferred. Following discussion with other teams at the second national workshop in London we decided to use just two pathway options in future 1 Green Supported self management patient led 2. Red Complex care and specialist led pathway. Prostate The prostate team were initially confident that with a remote surveillance system together with the other enablers that they would be able to risk stratify a large percentage of their patients to the green pathway. After deliberation and discussion at the consultants workshop in London they were happy to use the risk stratification tool developed by Roger Kockelbergh National Clinical Advisor. see Appendix 3a Again the team opted to remove the orange shared care pathway from the risk stratification tool. Not all prostate cancer patients have a key worker or are discussed at MDT, so the project required each clinician to tick a box on the pathway form to indicate which pathway they would hypothetically put them on if all the enablers were in place (awaiting remote surveillance system). The project lead requested that completed pathway forms be returned to the Information Centre weekly to facilitate collection of data. For the duration of the project, we only received limited data from the nurse specialists and the specialist radiographer, who reported weekly following the MDT all prostate patients discussed. During November, in an attempt to have a more complete picture of data most members of the team made a concerted effort to complete the pathway forms. For those patients attending the urology clinics and with the support of the urology CNS, we did a retrospective collection of data from the clinic lists. Care Planning and Treatment Summaries We had already developed a care plan and treatment summary template from our earlier involvement in the project, but had had limited success in enabling the specialists to complete them. The project manager and administrative support completed them and then sent them to the specialist for review and any additional information, prior to issuing them. All patients who attended our Moving On programme had a care plan and treatment summary completed. Breast For this next stage of the project we developed templates see appendix 4, for each of the possible treatment pathways, so that all the standard information about side effects, late effects, support etc were already in the care plan, in the hope that this would reduce the time the specialist had to spend on completing the paperwork. We chose to combine the care plan and treatment summary as people were finding the two documents confusing. We asked the breast team if they would be able to commence a care plan at diagnosis which would then be put onto a shared drive on our computer system. If the patient progressed from surgery, to radiotherapy and/or chemotherapy then the relevant key worker could then access their care plan on the shared drive and add the relevant information. The final stage of treatment would be that key workers responsibility, with our support to complete and issue the care plan and treatment summary. On a weekly basis the breast nurses delivered the hand written care plans to the project office, they were then put on to the shared drive by the project support. The breast nurses felt that this support would enable them to find time to start the plans. During this project we have completed 125 care plans and treatment summaries for breast patients. We discussed the possibility of using some of the project fund to backfill the specialists and enable them to set up an end of treatment review clinic where the holistic assessment, care plan and summary would be completed. Unfortunately the department was unable to provide anyone to backfill a post due to departmental and Trust financial pressures. All breast patients who attended the Moving on programme had their care plan and summary completed

6 as part of the programme. Prostate The prostate CNS and radiography specialist developed templates for their treatment pathways. The urology CNS opted to keep the care plan and treatment summary separate due to the complex nature of some of her patients. She also felt the treatment summary should be completed by the consultant. The prostate specialists felt that without backfill their already full job plans would not allow them to be able to carry out the assessment and care plans. Despite the project fund being available the departments were unable to provide backfill to allow these activities to be tested. Initially the urology CNS agreed to do 10 care plans during the project within her existing job plan, but due to time pressures/increased work load was unable to do so. The radiography specialist was paid from the project fund during July and August to work in her own time and managed to complete 11 care plans, see Appendix 5 and 5a In total for the duration of the project we completed 20 care plans and treatment summaries for prostate patients. Total care plans and treatment summaries completed this year Information Breast and Prostate We are lucky to have a large well established Cancer Information centre within our department, run by a nurse and radiography specialist. An information centre can have a pivotal role in supporting patients living with and beyond cancer, Support groups are run here, signposting, referrals, information prescriptions and care plans are generated and completed here. It is an ongoing job to promote the resources and opportunities for patients that the centre offers, and we regularly attend meetings and place articles in our Trust magazine to raise awareness Over the last 10 years we have developed a patient held information record folder which is given to all new patients and relevant information is added as they progress through their pathway. We have site specific sections for both breast and a prostate pathway, which informs on local services, contact numbers and resources and supports the national information which is also offered. We have been part of the NCAT pilot for information prescriptions. As part of this project we have developed a new section which helps patients to focus on survivorship issues, with information about all the local opportunities and schemes which are available to support patients and carers, optimize their wellbeing, improve their health and look positively to the future. Once the care plan and treatment summary is completed it goes in the patient folder and we encourage patients to take it with them to any future appointments and for clinicians to access and documents as appropriate. Throughout the project the manager has promoted the centre and our survivorship activities throughout the department, Trust and Network wide, in a bid to raise awareness, promote the survivorship agenda and encourage referrals. Education Breast and Prostate Information days Macmillan Cancer Support, through their Well being workshops, and the Expert Patient programme report, has given sound evidence that supporting cancer patients through education builds confidence, motivation and supports self management, as well as improving patient experience and increasing satisfaction with our services. This in turn can relieve some of the pressure on the acute service by reducing enquiries, outpatient appointments and admissions. We held two Living with and beyond cancer information days in June and Sept 2011 and worked closely with our neighboring DGH to share resources and cover as wide a catchment area as we could. See appendix 6 (poster and feedback) The information days covered a wide variety of common issues, concerns and information needs that our patients and carers have told us they would like addressed at

7 the end of treatment. They have proved popular and the feedback was extremely positive. We hoped that patients who might be reluctant to attend our education programme would try the information day as a way of accessing the resources or support they needed. We found that this was the case, but several of the attendees then went on to attend the education programme as well. 74 people attended in total. 22 breast patients 4 prostate patients Education programme Moving On course. Over the last three years the project manager with support from trained volunteers working in the information centre and colleagues at Anglia Cancer Network, has run a weekly education programme open to all cancer patients and carers once they have completed their acute treatment. (6-8 weeks after treatment) Places are limited to 12 per course. For those patients whose treatment may be ongoing i.e. myeloma or prostate, we advise that during remission or between treatments may be an appropriate time to attend. The course lasts for four weeks, with 2.5hrs per week. The programme includes self management strategies and goal setting, as well as covering many of the common issues and concerns raised by cancer survivors diet, exercise, body image, symptoms, reoccurrence, stress and anxiety, relationships and sexuality, returning to work, finance and problem solving. We make efforts to ensure that each group meets the particular needs of those attending that month and add education, information and visiting speakers as required. During this project we have encouraged the nurse and radiography specialists to be involved in sessions where appropriate. We also complete the attendees care plan and treatment summary as part of the programme and make sure that the specialists are involved in this process. As mentioned before this has proved challenging due to lack of time for them to complete care plans. However the project lead and assistant have completed them and sent a copy to the specialist to review as required, prior to giving them to the patient and GP. During this project 57 breast patients and 4 prostate have attended the Moving on programme. (Other cancers 54) Total The feedback has been overwhelmingly positive with the following comments and indication of the supportive effect and positive benefits this type of course can have on cancer survivors and their ability to move on and reestablish a new and fulfilling normality for themselves. This was just what I needed when I was feeling alone and abandoned. I now have new hobbies and a future to look forward to I thought I was the only one who felt like me this group has increased my confidence and given me a positive direction I didn t think I needed any more information, how wrong I was. I had my head in the sand. Now I feel confident to take charge and know where to get help if I need it Building on the feedback and positive impact of the course, we have plans to train more facilitators and run it in more venues over the next year, with evening and possibly weekend courses, to make it widely accessible. See appendix 6a and 6b

8 Exercise Referral scheme As part of this project and taking account of Macmillan Cancer Supports report into the important role exercise has in improving cancer patient s health, wellbeing, risk of recurrence and overcoming symptoms, developed an exercise referral scheme open to all cancer patients and carers as part of our survivorship model. We approached 6 local exercise facilities that span our geographical catchment area and discussed with them our particular requirements. One of these facilities was already operating a GP referral scheme for other long term conditions which didn t include cancer. Our experience and patient feedback told us that cancer patients are often confused as to when, what, and how much exercise they can do. They were unclear about the benefits, and often lacked confidence and motivation to get started and were daunted by joining a leisure facility. We wanted to ensure that the trainers recognized and understood the particular emotional and physical needs of cancer patients, so that they didn t just get a one off induction to the equipment/facilities but ongoing support and encouragement and that they were appropriately trained and educated. That access was given at a subsidized rate and that the patient s partners or loved ones could access at the same reduced rate. The project manager and assistant visited each facility to ensure engagement, understanding and motivation. We developed a referral form and put on a cancer specific level 2 education day which included motivational interviewing skills training. Appendix 7 We are now providing access to level 2 and 3 cancer exercise training. Appendix 7a We have our second education day at the end of this month which includes diet and nutrition, lymphoedema and communication skills. We are currently in the process of sending out questionnaires to everyone who has been referred via the scheme, to assess whether exercise has been sustained, the impact of the scheme on their health and wellbeing, any reduction in symptoms and the impact on confidence and self management. During the project 39 breast patients have had an exercise referral 5 prostate patients. 60 referrals in total this year. Care Farm Initiative One cancer patient who attended the moving on programme shared his experience of the therapeutic and life changing benefits he had experienced through becoming involved with a local Care Farm. There are several of these schemes operating across the country which have an established track record working with people with disabilities, mental health and behavioral issues. The farm utilizes its setting, with wide and varied animals and livestock, to involve clients in a range of activities. Learning how to care for animals, growing fruit and vegetables, cooking and crafts and at the same time supporting and building their confidence, motivation and self management skills. We felt that for some cancer patients and carer s to access this type of scheme could prove supportive and beneficial to their survivorship. Supporting them to overcome the emotional and physical impact of cancer in a positive and constructive way, perhaps providing them with new skills and interests which

9 would facilitate them to move forward to a more positive future. We set up taster days which were seasonally themed and included activities such as harvesting and making preserves, building/maintaining a chicken coop and poultry care. Other activities included seasonal crafts and animal care (for example pony grooming, feeding the pigs and even walking the ferret!) Individuals also had the opportunity to access a course at the farm for one day per week (for up to 6 sessions) Feedback was overwhelmingly positive for the enjoyment and benefit of the experience in supporting increased confidence, motivation and self management. Feedback included; This experience has turned my life around I feel so much more positive and confident This is now my new career. Between Oct-Dec 4 breast patients and 2 prostate patients have attended. Whilst testing this initiative the project fund was used to enable access to these days, which were at a cost of 45 per person, with no charge for carers. We are planning to apply for a Macmillan grant this year to support continuing access to this scheme and to use charitable funds. Due to limited resources referrals will need to be based on individual needs and circumstances. See Appendix 8 Swimming Group During this project we have also started a weekly swimming group based at one of the leisure facilities that participate in our exercise referral scheme. Feedback from patients informed us that whilst many would like to enjoy swimming and the experience of being in the water, lack of confidence, body image issues and poor motivation have been obstacles for many cancer patients. The opportunity to be part of a supportive group with other cancer patients has proved very popular and the motivation needed to start exercising and enjoying swimming again. See Appendix 9 Cycling group As part of the moving on programme and our Information days we make a point of exploring and promoting the wide range of groups, activities and opportunities that are available for people to access in their local community which may support them in their recovery, improve their confidence and their ability to self manage. One of these opportunities is funded by our Local County Council in partnership with Suffolk Sport, and is part of the Fit villages scheme. We have set up a monthly cycling group for cancer patients and carers. Suffolk Sport brings the bikes to the hospital and led a group of up to 10 for a 5-7 mile gentle ride into the local countryside. This is an opportunity for anyone who enjoyed cycling before their cancer, but has lost confidence or

10 ability, to give it a go with support on hand, or for anyone who thinks cycling might be a good and cheap form of exercise for them to try. Patients really enjoy this experience and are surprised by just how much they can achieve. Suffolk Sport will set up a free regular cycling group in any rural area where there is interest to make it accessible to as many people as possible. See Appendix 10 6 breast and 2 prostate patients have joined the cycling group Remote Monitoring Breast the Trust has an established system for referring patients for mammography screening following completion of treatment. At the post surgery MDT the decision is made to refer and a referral form completed (see appendix 16). Patients are booked for their next mammography scans and results sent by post to patients by the radiology department. Any suspected recurrence prompts a recall back to a diagnostic clinic. Prostate No system existed within the Trust for scheduling and monitoring routine PSAs on all prostate patients. In the absence of any internal IT solution the steering group agreed to implement the solution developed by NHS Improvement with colleagues from RUH Bath and North Bristol. The tool became available for use in Summer 2011 however a number of IT issues have prevented us from implementing not least the need for business case approval. At the time of writing this report the implementation was making progress and is expected to be available for testing in spring 2012 (for the business case see appendix 17) 4b) What resources/ investment were needed? Project management, CNS backfill, Administrative, kit, IT time Throughout the project our Cancer Information Centre with It s team of Specialists, Allied Health Professionals and volunteers have been the hub for many of our activities, information and support services for the wider team. Without which we would not have been able to establish such a wide and varied range of support and initiatives. For the duration of the project we used the project fund of 40,000 to fund the following WTE band 7 project manager Facilitating and running the moving on group. Establishing the exercise referral scheme. Care Farm initiative. Coordinating and running the information days. Completing care plans, treatment summaries and exercise referrals. Business case for testing of remote surveillance system. Attending meetings, giving presentations. Producing fliers, articles, info folder and promotional material. Coordinating steering group meetings and agenda. Monthly project report to NHSI. 0.6 WTE admin and project support band 4 and days per week project support data collection and input, stats input, patient feedback, audit and questionnaires, processing of IPSOS MORI questionnaires, clerical admin, communication, room bookings, catering, minutes for steering group meetings, support with exercise referral scheme fitness training and education days, motivational interviewing training. IT input/time 5,000 prostate remote surveillance system 2-3 hrs per month for support/meetings. CNS backfill 0.6 WTE offered. Only 4 days in total utilized Laptop requested by Breast team to facilitate commencement of care plans at MDT

11 Outstanding ( ) Exercise referral scheme Training/education Funding of clients to support access to scheme Care Farm Initiative Refreshments and visiting speakers Moving On programme 1888 Information days (X2) External Venue, catering, speakers Travel, training and expenses for the purpose of the project (including acupuncture training, breast team day, workshops) c) Patient/carer/public experience There has been a lot of valuable research and surveys undertaken by Macmillan, The Expert Patient Programme and many of the other site specific cancer charities around what support is required and where the gaps in service provision lie in supporting those living with and beyond cancer, These have informed and influenced our approach to the survivorship agenda as a whole, and the remit of this project. We are very fortunate at Ipswich to have a wide range of resources and support services available to refer or signpost our cancer patients to, however despite this, whilst managing our information centre I was made acutely aware of exactly when and where patients and carers felt they were not getting the care and support they needed. A recurring theme over the last five years has been a lack of care coordination and poor communication in some areas, and the perceived vacuum at the end of treatment..throughout our survivorship project we have endeavored to engage with both patients and carers through our patient satisfaction surveys and feedback forms which accompany each activity offered. We have patient representation on our steering group and our volunteers who have all had experience of cancer either as patients or carers, are encouraged to share their experiences and views as we develop our services. I feel extremely passionate about the survivorship agenda and place a high priority on face to face engagement, in order to get the message and enthusiasm across. During this project a lot of time has been spent attending meetings and support groups across our Network in order to understand our local needs, allow the public to express their opinions and to test reactions to our plans and services. We have a well established and enthusiastic patient user group who has the survivorship agenda as a key objective on their work plan; we have a representative on our steering group and are regularly involved in shaping the changes and developments of our project. Carers have been an integral part of our survivorship strategy. The vital role they play in supporting the cancer patient as well as their own needs is well recognized. We place as much importance on their views and opinions as we do those of the patient. Suffolk Family Carers are involved in our information days and we are currently exploring the possibility of running a support course for cancer carers at their headquarters. We have been invited to speak at all our cancer support groups and focus groups and these opportunities have given us valuable insight into what our patients want as well as the opportunity to promote the project.

12 4d) Staff engagement We have taken every opportunity to promote the project and encourage engagement and involvement. We have produced fliers and posters as well as a leaflet promoting the project and explaining its remit. This has meant presentations or informal talks at a wide range of venues and groups, including CNS, ward and out patient department meetings, within the social services and discharge planning department. At multidisciplinary team meetings, site specific away days, consultants meetings, GP practices, community AHP meetings, in our hospices. At our Cancer Network and commissioners meetings, lead nurse meetings and to our Trust chief executive and Nurse Director. Interest and recognition of the work we have been testing has led to invitations to share our experience and learning around the country, at Macmillan s professionals events, survivorship conferences and most recently an invitation to present on survivorship at the National BMA conference in Paris. 4e) How was the project led and managed? Describe the role of clinical leadership. Project set up and steering group The project steering group had our Clinical Director as chair which was important to help drive the project forward and take the issues to a senior level within the Trust. A project manager leading the project who had knowledge and understanding of the department and clinical teams to engage with. Support and direction from the NHS Improvement lead. Support and direction from the oncology Lead Matrons and Anglia Cancer Network Nurse Director. Support from the Trust Chief executive and Nurse Director. A monthly steering group was set up within the first two months which was chaired by our lead cancer clinician and had representation from patient users, commissioners, Network, PCT, Third sector, IT, AHP s, CNS and specialist radiographers and support groups. The project lead provided the agenda and a project update report. The steering group with its wide and varied scope and experience was pivotal to the success and development of this project. It s value should not be underestimated, without the enthusiasm and commitment of the individuals that attended and contributed their knowledge, skills and resources we would not have achieved any where near as much as we did. It was the project lead s responsibility to move the project forward with support, guidance and direction from the steering group. See Appendix 11 Having already been involved in the project during the previous year it was relatively straightforward to engage with key staff about its next stage. There was some reluctance and concern amongst clinicians about the purpose and benefit of reducing follow up together with confusion about how the remote surveillance system would be implemented and managed. Concerns centered on possibly missing recurrence or key issues and concerns if their was no face to face follow up. Also a belief that patients want to come to the hospital for follow up appointments. Key evidence countering these arguments was shared along with reassurance that if a patient chooses to remain in follow up that is acceptable. There were also concerns about the potential loss of income to the Trust that it may represent.overall there was enthusiasm and support for the aims and objectives of the project from the nursing and radiography teams along with willingness to be involved in the testing process. The first priority was to bring the breast and prostate teams together and map our current clinical pathways. Identify gaps as far as the survivorship agenda was concerned and establish base line figures

13 upon which we could compare progress once the project initiatives commenced. See Appendix 12 The Clinical teams comprised the following individuals who supported the project; Breast Miss Caroline Mortimer, Breast Surgeon, Julie, Kim, Sue and Helen, Surgical Breast Clinical Nurse Specialists. Dr Liz Sherwin and Dr V Ramachandran Oncologists Dr A Hoodbhoy Staff grade in Oncology. Rachel Hockney Breast Oncology Clinical Nurse Specialist, Lisa Mann Macmillan radiotherapy specialist. Prostate Dr Christopher Scrase Oncologist, Mr. Rob Brierly Urologist. Charlotte Etheridge Urology Nurse Specialist, Debbie Holland Oncology Nurse Specialist. Amanda Ford Macmillan Radiotherapy Specialist. 5) Results After our initial pathway review and scoping exercise we identified the following gaps in service provision and recommended these changes- In the existing breast pathway Awareness of holistic assessment guideline and tool but not universally offered. Good areas of practice in radiotherapy where every patient is given the tool to complete. 20 surgical patient case notes audited March 2010 evidence of 4 holistic assessment tools completed (not clear if assessment offered and declined) No system in place to offer patients a care plan. No end of treatment summary which succinctly covers all treatment through the pathway. Clinic letters and discharge summary in radiotherapy. Appendix 13 Already evidence of reduced follow up pathway Discharge at 2 years to annual mammography recall Opportunity to develop this further and discharge appropriate patients at 1 year to green pathway. Some evidence of signposting to education programme and other support services. Actions taken; Promotion of the importance and value of holistic assessment to CNS team. As a minimum recommendation as part of the care plan and at end of treatment. Individual care plan templates developed for each treatment pathway, which include the assessment tool. Use of shared drive on IT system to pass care plan onto relevant specialist to complete, if progressing to chemo and/or radiotherapy. Risk stratified follow up decision at MDT some patients currently discharged at 2 yrs; consider discharge from follow up at 1 yr. If surgery only - Completion of care plan and end of treatment summary after treatment, care plan review at one year follow up appointment by CNS. Signposting to education programme, information day and exercise referral scheme at appropriate point in pathway. Box file and Information/ fliers provided for breast info folders to promote all support and activities on offer. Posters in clinics and outpatient areas. Presentation at Breast team away day, MDT and CNS meetings. Following the testing - Breast pathway Evidence of wider utilization of Holistic assessment at key points in the pathway to identify needs earlier and inform the care plan. 20 surgical patients case notes audited Dec 2010 evidence of 14 holistic assessments completed.

14 Commencement of care plan at MDT by surgical CNS, accessible via a shared drive if patient progresses to chemotherapy/radiotherapy. During testing period 125 breast care plans and treatment summaries completed. Evidence of risk stratification at MDT and earlier discharge onto green pathway. Increased evidence of referral to Moving on education programme, information days and exercise referral scheme during testing period. Increase in positive feedback from patients who have experienced the new model of care. In the existing Prostate pathway- Not all new patients have access to a CNS therefore signposting for holistic assessment; care planning and other educational and supportive opportunities are reliant on the consultant/registrar team. Awareness of holistic assessment guideline and tool but not universally offered 20 patient case notes audited March 2010 evidence of 1 holistic assessment tool completed (not clear if assessment offered and declined) No system in place to offer patients a care plan. No end of treatment summary which succinctly covers all treatment through the pathway. Clinic letters and discharge summary in radiotherapy. Acknowledgement from many within the clinical team that there was opportunity for earlier discharge from face to face follow up once remote surveillance system in place Some evidence of signposting to education programme and other support services. Suggest - Fliers and posters to all clinic areas. Macmillan trained support group volunteers present in clinic to promote services/signposting. Issues - CNS and specialist radiographer would like to carry out end of treatment reviews but their current work plans do not allow time to do so requires back fill to test. Large percentage? 60% currently in long term follow up could be put on remote surveillance once system in place thus releasing capacity to re design clinic templates and work plans. Urology CNS shortfall compared to national average for case load number. Only able to see new patients. Oncology CNS for advanced prostate disease, again limited time available within job plan to carry out assessment and care planning. Box file and Information/ fliers provided for urology info folders to promote all support and activities on offer. Posters in clinics and outpatient areas. Presentation at MDT and CNS meetings. Following the testing Prostate pathway Evidence of small increase in use of Holistic assessment at key points in the pathway to identify needs earlier and inform the care plan. 20 patients case notes audited Dec 2010 evidence of 4 holistic assessments completed. ( 6/7 completed when seen in radiotherapy dept) Care plan and treatment summary templates have been written. It has not been possible to widely test the use of these during the testing period due to the constraints already outlined... During the testing period 20 prostate care plans and treatment summaries completed. Whilst the project has raised the profile of risk stratified follow up in urology cancer care at the Trust, until the remote surveillance system is operational, we have only been able to hypothesize on our data collection forms those patients that could be put onto a supported self management pathway. Increased evidence of referral to Moving on education programme, information days and exercise referral scheme during testing period.

15 Remote Monitoring Conclusions The overall impact of the survivorship project for patients and staff at Ipswich hospital has been positive There is a guideline and recognized assessment tool in place for patients to be offered a holistic assessment at key points in their pathway. Further work needs to be undertaken to embed this process in the CNS and specialist work plans, allowing time for it to be undertaken effectively. Not all patients have access to a CNS and therefore the supportive elements of the pathway. These patients need to be signposted/refer to the information centre to access these resources if they want to. Following the results of the National patient experience surveys, Care needs to be taken to ensure value is placed upon the holistic assessment by clinicians and that patients and carers are aware of the process, its purpose and value. All patients and carers have access to an education programme, information day, exercise referral scheme and other activities, which support self management of long term conditions, promote wellbeing and future health, support an effective return to work, hobbies and a positive outlook on life. Uptake and referral to these services is reliant upon the positive endorsement of them by colleagues, encouragement of the benefits for patients and effective signposting. Regular advertising and reminders about the services on offer needs to be ongoing. Utilization of the volunteers and support and user group members to promote these services is vital. We are planning to expand our education programme so that it can reach a wider number of patients and carers over the coming year. Engagement within primary care and joint working on a number of these enablers remains a priority care planning review, education programme and the exercise referral scheme. As a result of the project between April and Dec 2010, all new breast patients had a care plan commenced. Prior to the project only patients attending the moving on group were offered a care plan and treatment summary. As a result of the project within the breast, urology and colorectal teams, work has begun to review current pathways and incorporate the key survivorship initiatives. Risk stratified follow up and the opportunity to reduce face to face follow up with remote surveillance, or nurse led telephone or out patient review clinics is under discussion. 5b) How was the improvement measured? How was the baseline established? How was progress against the baseline measured? Evidence (data/charts if available), number of patients affected and their levels of satisfaction (attach images if available) A number of quantitative measures were established at the start of the project to determine the impact on outpatient activity, the number and % of patients stratified to each pathway and at what point in the pathway this occurred and finally demand for support services. Data collected by front line staff following end of treatment reviews was recorded to a spreadsheet over a nine month period. A further one month

16 audit in November 2011 was undertaken specifically to test the proportion of patients in each pathway. 9 month data Results are shown below: BREAST The following data was captured on 204 breast patients during the test period April to December Risk Stratification The following identified the % of patients placed in each pathway following completion of treatment. The 72% on SSM pathway is slightly higher than the 70% suggested by the NCSI at the start of the programme. % of patients stratified to each pathway April to December 2011 % patients 80% 70% 60% 50% 40% 30% 20% 10% 0% 72% Green - supported Self Management 8% Amber - shared care 20% Red - Complex care Green self management pathway Amber or complex pathway April Dec 11 Based on 204 patients 72% 77% 28% 23% November Audit Based on 60 patients Point of referral The following chart shows the point at which the 146 SSM patients were actually placed on the SSM pathway. The proposed follow up pathway is discussed at the post surgical MDT. The decision is recorded on the CIS system and at the next appointment with the consultant or the CNS the proposal is discussed End of treatment is defined as the point when treatment is complete be it surgery only or surgery plus chemotherapy or radiotherapy. We found that 92% of patients were placed on SSM pathway at 3 months following completion of treatment (decision made at diagnosis MDT) and during the November audit this was similar at 94%

17 Breast - Time since end of treatment when stratified to green pathway no: patients months 6 months 9 months 12 months 18 months 24 months 36 months 48 months 60 months % of patients at: 9 month audit November audit 3 months 92% 94% 6 months 5% 2% 9 months 2% 4% 12 months 1% >1% 18 months 1% 0% Demand for specialist and support services Over the 9 month data capture period a total of 495 referrals to specialist and support services were made. Of these physiotherapy and district nursing referral relate to surgery and are part of the core pathway. The remaining service needs were mainly identified at the end of treatment review. Clinical Refs Non clinical Refs Physiotherapy* 130 Moving On Programme 99 District Nurse* 93 Complementary Therapies 43 Lymphodema Service 41 Exercise 32 Counselor 15 Breast Support Group 21 Psychosexual Advisor 6 Social Care 4 Dietician 4 Benefits & Finance Advice 3 Psychologist 1 Vocational Rehabilitation 2 Occupational Therapist 1 Family and support worker 2 Trust Palliative Care 0 Community Palliative Care 0 Stomatherapy 0