NHSCANCER                                                     NHS ImprovementDIAGNOSTICSHEARTLUNGSTROKE              Adult...
National Cancer Survivorship Pathway                                                                                      ...
Living with and beyond cancer: The improvement story so far   |   3ForewordS     ome cancers are born chronic, some cancer...
4 | Living with and beyond cancer: The improvement story so far   Introduction   The purpose of this document is to give  ...
Living with and beyond cancer: The improvement story so far |     5Elements of new models of care                         ...
6 | Living with and beyond cancer: The improvement story so farNHS Birmingham East and North Health EconomyThe impact of a...
Living with and beyond cancer: The improvement story so far   |   7                                                       ...
8 | Living with and beyond cancer: The improvement story so farBournemouth Test CommunityCancer survivors exercising their...
Living with and beyond cancer: The improvement story so far    |   9                                                      ...
10 | Living with and beyond cancer: The improvement story so farBrighton and Sussex University Hospital NHS TrustImproving...
Living with and beyond cancer: The improvement story so far   |   11Non elective emergencies appear to bereducing compared...
12 | Living with and beyond cancer: The improvement story so farNorth Bristol NHS TrustSelf management programmes and diff...
Living with and beyond cancer: The improvement story so far   |   13  Lung Big Clinic evaluation results                  ...
14 | Living with and beyond cancer: The improvement story so farObtaining user’s and clinical teams’           Client Rela...
Living with and beyond cancer: The improvement story so far   |   15• Some sessions found not relevant to  all participant...
16 | Living with and beyond cancer: The improvement story so farThe Christie Test CommunityThe importance of establishing ...
Living with and beyond cancer: The improvement story so far   |   17  submitted questions was the  patients’ idea and gave...
18 | Living with and beyond cancer: The improvement story so farClatterbridge Centre for OncologyMoving forward (or initia...
Living with and beyond cancer: The improvement story so far   | 19Learning so far                               We are als...
20 | Living with and beyond cancer: The improvement story so farEast Kent Hospitals University NHS Foundation TrustPatient...
Living with and beyond cancer: The improvement story so far   |   21  minutes with an average of 35              • The pat...
22 | Living with and beyond cancer: The improvement story so farGloucestershire Test CommunityA real life example of partn...
Living with and beyond cancer: The improvement story so far   |   23How are clients referred to a Village Agent?
24 | Living with and beyond cancer: The improvement story so far   Assessment and signposting
Living with and beyond cancer: The improvement story so far   |   25Next steps• Continue to collect data to evaluate  serv...
26 | Living with and beyond cancer: The improvement story so farGuy’s and St Thomas’ NHS Foundation TrustSurviving cancer ...
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Living with and beyond cancer: The improvement story so far
Upcoming SlideShare
Loading in …5
×

Living with and beyond cancer: The improvement story so far

786 views

Published on

This publication features the learning and improvement stories from the assesment and care planning; adult test communities who have piloted elements of care and support to inform potential new models of care (Published July 2010).*

Published in: Health & Medicine
0 Comments
0 Likes
Statistics
Notes
  • Be the first to comment

  • Be the first to like this

No Downloads
Views
Total views
786
On SlideShare
0
From Embeds
0
Number of Embeds
4
Actions
Shares
0
Downloads
10
Comments
0
Likes
0
Embeds 0
No embeds

No notes for slide

Living with and beyond cancer: The improvement story so far

  1. 1. NHSCANCER NHS ImprovementDIAGNOSTICSHEARTLUNGSTROKE Adult Cancer Survivorship Initiative Living with and beyond cancer: The improvement story so far
  2. 2. National Cancer Survivorship Pathway Remission Inpatients Remains Symptoms Well Screening Ambulatory Care Consequences MDT of Treatment Survivorship Straight Decision Assessment Investigations to Test to Treat Care Plan Primary Care RecurrenceAssessment Primary (Living Referral Diagnosis document End of Life Treatment setting out Care aftercare) Primary Care 2nd/ Subsequent National Awareness and Early Treatments Diagnosis Initiative (NAEDI) Inpatients Patient Chooses Active/Advanced Not to be Treated Disease Survivorship - Living with and Beyond Cancer
  3. 3. Living with and beyond cancer: The improvement story so far | 3ForewordS ome cancers are born chronic, some cancers become chronic,some cancer patients have chronic illness thrust upon them by treatmentand some are not chronic at all(apologies to W Shakespeare)The cancer landscape has changed butthe public and professional view is National Cancer Survivorship Initiative (NCSI) five key shiftslagging behind. Cancer is seen in simpleterms - completely cured and ‘back to • a cultural and attitudinal shift to focus on health and recovery;normal’ or incurable disease and • a shift towards improving information;‘terminal’. Reality is different. Some still • a shift towards assessment and care planning;die within a year of diagnosis. Others • to shift towards providing tailored care pathways based on risk ofwith incurable cancers live years with future problems associated with the type of cancer, the type oftheir illness or experience treatment treatment and the particular circumstances of the individual;consequences directly after cancer • a shift towards improved measurement through patienttreatment or years later, with similar reported outcome and experience measures.illness patterns to a long term condition.Traditionally, the focus of cancer services Evidence is also emerging that The cancer story continues to developis on cancer as an acute illness treated opportunities are being missed for with many more people living well withand followed up by hospitals. There are secondary prevention of new primary cancer whether truly cured or not.already two million patients in the UK cancers and other long term conditions, Measures to support recovery andliving with a diagnosis of cancer and this which are more common in cancer transition to self management need tois expected to rise by around 3% a year. survivors. Given the above, current go hand in hand with the developmentRecent work suggests that up to 70% follow up practice will become of the new anticancer treatments (drugs,of recurrence for common cancers could unsustainable and no longer fit for surgery or radiotherapy) that will increasebe detected by patients noticing purpose. There is already evidence that life expectancy and quality for thesymptoms themselves with or without it does not adequately address the individual. The focus of the Nationalautomated test surveillance. Many needs of patients. Where appropriate, Cancer Survivorship Initiative is livingpatients have indicated that they would moving from traditional, hospital based with and beyond cancer.prefer this type of self management as follow up visits - to alternative modelslong as there is a fast, reliable route offers many benefits to the quality,back to the specialist team if needed. safety and effectiveness of care. The test communities within this Professor Jane Maher programme are testing a number of Dr Alastair Smith approaches that reflect the National 31 National Clinical Leads, Cancer Survivorship Initiative (NCSI) NHS Improvement five key shifts
  4. 4. 4 | Living with and beyond cancer: The improvement story so far Introduction The purpose of this document is to give • The 2007 survey explored the views of ‘the story so far’ and includes the work 3,000 participants who included that NHS Improvement, through the specialists from hospital care, cancer adult survivorship improvement professionals from primary care and team, has been undertaking on behalf of patients. The objective of the survey was the National Cancer Survivorship Initiative to find out the perceptions and (NCSI). The main focus is to present preferences for follow up practice. The improvement stories from the test findings showed there was consensus communities who are piloting elements of between the groups as to the care and support to inform potential new perceptions for current follow up models of care. The learning and practice; to monitor early complications, improvement stories from the assessment to detect recurrences early, and to detect • Supporting and coaching national test and care planning test sites will be late effects of treatment. With regard to communities to pilot elements on included in the final report of the pilot preferences for the future, respondents potential new models of care for people phase of testing in the winter. were more likely to prefer approaches living with and beyond cancer. they had experienced, as opposed to It is necessary to understand the context those they had not experienced. As our knowledge and learning has and baseline work that has been This article is now in press as: Frew,G. developed and the demands on the happening prior to and during the testing et al., Results of a Quantitative Survey to service have changed particularly through work and the flexibility that has been Explore Both Perceptions of the Purposes the QIPP agenda, the test communities required to respond to the challenges of Follo..., Clinical Oncology (2010), have risen to the challenge with flexibility facing an ever changing NHS. Traditionally doi:10.1016/j.clon.2010.06.008 and professionalism. We would like to cancer services have focussed on cancer as • The patient consensus meeting in 2008 thank the national test communities and an acute illness with the emphasis post concluded that patients are not adverse the clinical teams who have put an treatment on surveillance and monitoring to new approaches to follow up care enormous amount of work and effort into for further disease or recurrence for a and support but need to have good testing new elements of care and support period, usually up to five years. Primary quality information, rapid access to for individuals living with and beyond care providers have therefore seen cancer specialist care as needed, and a care cancer. care as the province of specialists, at least plan which is agreed by all those until ‘discharged’ from secondary or providing care and is owned by the For those of you who are not currently tertiary care. There is increasing debate individual patient. A copy of the notes part of this work we would recommend regarding traditional follow up in the from the meeting can be found at: you seek further information from the outpatient setting and whether it meets www.improvement.nhs.uk/cancer national team supporting this workstream patients’ needs following cancer • A rapid review of current follow up or the test communities direct. The key treatment, especially for those who practice, in three tumour sites, took contact for individual test communities experience problems more than five years place across the cancer networks in can be found on their improvement stories post treatment. There is a suggestion that England during the summer of 2009. and the contact details for the national 70% of people living with and beyond The findings showed a mainly medical team can be found at the back of this cancer could self manage their symptoms model of care where one size fits all was publication or online at: with support, information and access back the norm. There were, however, pockets www.improvement.nhs.uk/cancer in to the ‘system’ should they need it (see of good practice around the country but the suggested model of care pathway on this had not spread to other tumour page 56). areas, clinical teams or across Gilmour Frew organisations. Director: Cancer Improvement NHS Improvement has been supporting The full report can be found at: NHS Improvement the National Cancer Survivorship Initiative www.improvement.nhs.uk/cancer or (NCSI), working with clinical teams and www.ncsi.org.uk patients to better understand the current service and the potential for the future:
  5. 5. Living with and beyond cancer: The improvement story so far | 5Elements of new models of care Client Relationship Management System: Bristol - Page 12 Survivorship Living System Enablers Well Courses Patient information development sites: Hillingdon** Christie* Hull** Bristol - Page 12 Mount Vernon* Mount Vernon* - Page 38 Hereford - Page 28 Ipswich** Guys* South of Tyne & Wear - Page 43 Risk stratification: Clatterbridge - Page 18 Taunton** Birmingham* - Page 6 Community Telephone Primary Care Support Management Led Services Gloucester: Guys & St Thomas’ - Page 26 Luton - Page 31 Village Agents - Page 22 Birmingham* - Page 6 Birmingham* - Page 6 Medway - Page 36 Worcester - Page 53 Birmingham* - Page 6 Velindre Cancer Centre: (Herceptin pathway) - Page 50 Exercise/ Workforce Education Rehabilitation Development Day/Session Sheffield - Page 41 Sheffield (Health Needs Bristol - Page 12 Bournemouth - Page 8 Assessment) - Page 41 Worcester - Page 53 Royal Free Hospital and Luton (Oncology Sheffield - Page 41 Marie Curie Hospice - Page 39 Awareness) - Page 34 Christie (user Mount Vernon* (e Learning) engagement) - Page 16 Velindre Cancer Centre Velindre Cancer Centre (Breathlessness pathway (Breathlessness pathway professional education self management) - Page 47 package) - Page 47 East Kent (User focus UCLH - Page 45 groups) - Page 20 Herefordshire - Page 28 * Indicates that additional improvement strories are available online at: www.improvement.nhs.uk/cancer ** Indicates that additional improvement strories will be available online when testing is complete Those test communities currently testing assessment and care planning and treatment record summaries will have their improvement stories online once testing is complete.
  6. 6. 6 | Living with and beyond cancer: The improvement story so farNHS Birmingham East and North Health EconomyThe impact of a community Macmillannurse in curative careSummary Improvement stories about progress in definition of services the MPCCNPan Birmingham Cancer Network and each of the five projects are available devised clinical outcomes, measuresNHS Birmingham East and North online. and a patient evaluation questionnaire.(NHSBEN) have worked together The measures are captured on thethroughout the testing process to The following story focuses on patient administration system (PAS)develop five projects within the NCSI specialist nurse care, testing the database including the number ofprogramme of work, targeting breast Macmillan Primary Care Cancer Nurse contacts and interventions with eachcancer patients within the PCT treated (MPCCN) service, a unique service patient.at Good Hope Hospital. A focus group within NHSBEN and Macmillan. Thewas held to test out the ideas that role steps away from the traditional role The MPCCN was integrated into thecame from some gap analysis which of the community Macmillan nurse in breast cancer multidisciplinary team atgave valuable feedback to each of the end of life care. It is an innovative role GHH (MDT) and she attends the weeklyindividual services which were involved which aims to provide complex, expert meetings.within the Cancer Awareness and assessment to identify and address theRecovery Enhancement (CARE) project problems faced by patients living with To raise the profile and develop anand what became clear was that breast cancer. It also helps deal with the understanding of the role, the MPCCNfurther definition of services was complexities and adverse effects of presented the service to the breast MDTrequired to prevent overlap of the five acute oncological treatment whilst and oncology nursing team. Patientwork streams involved in the project. maintaining (where possible) the information leaflets were also devised patient in the community setting. which would be made available to theThe five projects taken forward were: breast care team and oncology team to• Bridges Care - Testing the use of a What was the problem? be given to appropriate complex charity organisation offering Patients with breast cancer face not patients at time of referral. Clinical individual needs assessment only the dramatic impact of their letters are sent to individual GPs facilitating a bridge between health, cancer diagnosis but also prolonged following the initial and any social and community organisations multiple modalities of treatment which subsequent holistic needs assessments• Own Health Care – A partnership can have a profound impact on them, including information on each patients with Pfizer Health Solutions, testing a physically, psychologically, sexually, individual care plan. telecare model to provide support, spiritually and financially. If complex assessment, signposting and referrals needs of breast cancer patients are not What difference has the testing• Hospital Care - Ensuring addressed early this can affect how work made? consistency of access to post they cope with their breast cancer Since testing began the MPCCN has a treatment services irrespective of treatment but also how they cope with caseload of 35 complex patients who treatment aim their transition from cancer patient to require Macmillan level 3 and 4• Specialist Nurse Care – Testing a cancer survivor. intervention. Every patient who is primary care based cancer nurse case assessed by the MPCCN is given an management model for those What was done? individualised care plan which is patients within Macmillan level For the purpose of this project the role reviewed at each subsequent visit; 3 and 4 of the MPCCN was re-designed to The MPCCN has prevented 11 accident• Self Management Care – testing a provide support in primary care for and emergency admissions and over six week post treatment self patients undergoing their cancer 100 outpatient attendances. management course entitled HOPE treatment for breast cancer. (helping overcome problems In response to the need for clear effectively).
  7. 7. Living with and beyond cancer: The improvement story so far | 7 clinical supervision by giving the Did the specialist report reduce the number of times you needed to MPCCN the opportunity to discuss visit your GP or oncology unit? clinical issues with the team therefore reducing the effects of isolation on the 5 post holder. 4 A clear patient need has been identified for the majority of referrals with only Frequency 3 one patient opting out of the service. 2 Next steps 1 The next steps for the MPCCN are to 0 continue with the testing, providing Strongly Agree Agree specialist advice, assessment and care- Reduce Appointments planning to complex breast cancer patients, their families and carers in their homes within NHS BEN. The MPCCN will demonstrate the quality ofEvaluation forms are given to patients the findings to nurse managers and the care provided through the measuresfour months after referral to the education and training department in data captured on PAS, and from theMPCCN. Improvements currently being the PCT. clinical outcomes also identified in theappraised by this evaluation include patient evaluation.improved symptom management and Learning so farself-management of treatment induced So far we have learnt that although Contactsside effects. patient’s can be referred at any point from diagnosis the majority of referrals Kelly Fisher,The MPCCN utilises expert are received from the oncology team. Service Improvement Facilitatorcommunication skills to assess and Evaluation will determine if patients Pan Birmingham Cancer Networkexplore the psychological impact on feel that they were referred to the Kelly.Fisher@westmidlands.nhs.ukeach patient, anxiety and depression service at the right time; the majority ofscores are undertaken where referrals are from nurses. However, Jayne Breen,appropriate and to date there have oncology nurses reported that when Macmillan Primary Care Cancer Nursebeen seven referrals to the clinical they are busy or short staffed referrals jayne.breen@benpct.nhs.ukpsychology service for specialist may be missed and they found theintervention. referral forms too time consuming. To overcome this it was agreed thatSpecialist support, training and telephone referrals would be acceptedsupervision have been provided to and the MPCCN would aim to meetdistrict nurses to enable them to with the oncology team at least once amaintain patient’s central venous week.catheters at home throughout theduration of their chemotherapy Attending the MDT has proved verytreatment. The MPCCN audited the beneficial. Attendance enables thetraining needs of district nurses caring identification of potential new patientsfor breast cancer patients disseminating and provides a forum for informal
  8. 8. 8 | Living with and beyond cancer: The improvement story so farBournemouth Test CommunityCancer survivors exercising their way back to healthSummary stamina, self esteem, poor sleep and What difference has the testing• The Bournemouth After Cancer weight gain work made? Survivorship Project (BACSUP) is an • These could potentially impact on the The implementation of robust innovative collaboration between survivor, their partners and significant assessment and care planning practices Royal Bournemouth and Christchurch others. BACSUP used a range of tools is essential to assess and meet the Hospitals NHS Foundation Trust, The and one to one assessment with health needs and support the delivery Littledown Leisure Centre specialist nurses to measure these of individualised care for cancer (Bournemouth Borough Council), health issues more accurately survivors. It can also improve Bournemouth and Poole Primary Care • Focus groups were held with communication and manage the Trust, Macmillan Cancer Support, representatives from each of the transition from secondary to primary Dorset Cancer Network and three tumour sites and interviews care. Bournemouth University to deliver an with representatives from each individualised three-month physical multidisciplinary team and primary Some staff identified personal activity programme; Living Active & care to ensure the project was education needs to improve their Well Programme, to 200 cancer focused, relevant and timely. delivery of the survivorship agenda. survivors (breast, colorectal and Within the project this was mainly melanoma) following treatment What was done? addressed by the sharing of relevant• The aim was to promote physical, From the focus groups and interviews research material. Preliminary results psychological, social, and spiritual with survivors, health care, and leisure from the QOL tools suggest a trend health and wellbeing and include services staff, the following issues were towards improvement between pre and strategies to promote self care for incorporated into the planning and post intervention scores in keeping with living with and beyond cancer delivery of the project: the objective scores from the physical• Provisional outcome results (69:200) fitness assessments. from objective and subjective • Monthly multidisciplinary, multi measures suggest the project has organisational steering group ‘The teams knowledge successfully achieved its aims. It also meetings established with dedicated aims to improve communication project management support and expertise was between survivors and health • Assessment and care planning astounding and I felt professionals by introducing • Assessment tools – quality of life, assessment and care planning, and fitness etc energised to pursue.’ between secondary and primary care • The issue of ‘safety’ in relation to by reviewing current processes and physical activity post cancer exploring the potential of the care treatment. ‘The team were plan being a live document that • Weight management wonderful… very facilitates the transition from primary • Nutrition education treatment in secondary care back to • Improve communication between encouraging. I got primary care. primary and secondary care. enjoyment and noticeable • Identify and/or create documentationThe project can be viewed on YouTube: and assessment tools to support the improvements from thewww.youtube.co.uk/activehealthlink projects aims such as various relevant programme.’ quality of life toolsThe issues • Development of a project database• A local test project identified a range • Identification of important issues for of health issues reported by breast tumour site teams e.g for the breast cancer survivors included reduced team, shoulder function and the physical function (e.g. range of colorectal team, weight shoulder movement), levels of fitness, management.
  9. 9. Living with and beyond cancer: The improvement story so far | 9 ‘Top tips’ Living Active and Well Programme outcomes Before the project starts: • Clearly identify suitably qualified Outcomes of those who successfully completed 12 weeks administrative support. (numbers shown out of the total for whom the outcome was relevant for): • Appropriate IT support. • Staff ‘buy in’ before the project Tested starts. Is it realistic to expect them to Improved CV fitness: (93%) add this commitment to their current Improvements to BP (of those with starting BPs >130 SBP and >85DBP): (90%) work load? Weight loss (59%) • Are there contingency plans to Self reported sustain the project if a key member Improved feelings of wellbeing: (97%) of the project team is absent for a Less fatigue: (94%) period of time? Improved shoulder function: (77%) Improved lymphoedema: (66%) Next steps Improved self-image: (100%) • A package of information will be Improved flexibility: (94%) developed for treatment side effects Will continue to exercise after the 12 week period: (100%) and self care strategies for insertion Number of partners also engaged in the programme: (25%) into the care plan to promote safe, consistent advice from professionals • Completion of two research projects identified in response to issuesThe learning so far • Participants that wanted a partner or identified during focus groups on• Mutually beneficial, strong, significant other to take part found nutrition and shoulder function. collaborative relationship has that they both achieved health developed between the health and benefits Contacts leisure services staff • Some survivors of breast cancer Layne Hamerston,• Shared learning has changed reported that body image concerns Partnership Development Manager attitudes and raised awareness and the open plan design of many layne.hamerston@bournemouth.gov.uk among health service staff of the swimming pools prevented them benefits of physical activity. It is now from returning to swimming after Dexter Perry, more routinely raised in treatment. A suitable pool was Consultant Surgeon, consultations. Media events and identified and exclusive classes set dexter.perry@rbch.nhs.uk word of mouth have raised up. The experience was rated as awareness amongst other cancer highly successful by those who survivors participated. A survivor representative• Teams who were not undertaking on BACSUP is planning to take this formal assessment and care planning forward as a survivor-led swimming prior to BACSUP, recognise the level group. of undiagnosed unmet health and social needs is significant and requires action• Greater success was achieved where ‘The programme was tailored for me and I am weight loss management was targeted with both physical activity pleased to be invited to participate and am happy and diet, involving a lifestyle coach with the results.’
  10. 10. 10 | Living with and beyond cancer: The improvement story so farBrighton and Sussex University Hospital NHS TrustImproving quality for patients with lung cancerSummary • Inadequate time with the patient for Local measures were set to ensure thatA process mapping exercise highlighted a detailed assessment of all their these changes were monitored both inareas for improvement in the care of needs terms of their effect on the demand onpatients with lung cancer and led to a • Lack of access to other services the service and quality of care provided.newly designed pathway. A weekly particularly psychological support.multidisciplinary Combined Cancer An Access® based electronic databaseClinic (CCC) within the Sussex Cancer What we did? for the completion of the TreatmentCentre at BSUH has now been We held a process mapping exercise Record Summary and the ACP wasestablished where patients at any stage attended by all healthcare workers developed as completion of paperin their treatment pathway post- involved in the lung cancer service. A based records during consultationsdiagnosis have a holistic assessment detailed map of the current service was proved to be very time consuming. Thiscarried out. The clinic has been reviewed and areas of potential risk replaced the previous standard letter todesigned to be more flexible to suit were identified. An ideal pathway of the patients GP.patients’ needs, allowing them to care was designed/agreed by the MDT.trigger an appointment or cancel if not As part of the improvement, a Local measures included:required and rebook for a later date. combined cancer clinic with • Change in distress thermometerDuring the consultation a Treatment multidisciplinary input was established scores (using DT) recorded at eachRecord Summary (TRS) is produced and held in the Sussex Cancer Centre. attendance in outpatientswhich is given to the patient either at • A local questionnaire assessingthe clinic or sent to them and their GP This clinic was designed for follow up patients’ experience of the previouswithin 24hrs. The patient also has a of anyone known to have lung cancer system of care with plans to reassessdetailed assessment and care plan (i.e. at any point beyond the the effect of CCC on their(ACP) completed by the specialist consultation where the bad news was experiencenurses. All documents are given to the broken). Patients could be seen by • The number of lung cancer patientspatient to be kept in their own patient- respiratory physicians, palliative admitted monthly as unscheduledheld record. Early feedback from both medicine specialists and the Macmillan attendances via A&E compared withpatients and staff has been very cancer nurses, with input from the same time frame in previouspositive. Results from local and national oncology. The duration of the yearsmeasures are still awaited as the study appointment was extended to • The number of outpatientperiod is not yet complete. Further acknowledge the amount of additional appointments triggered/cancelleddevelopment of the CCC will see the work created by carrying out the and DNAinclusion of a dedicated oncologist and Treatment Summary Record and ACP. • Referrals made to services outside thea thoracic surgeon. These documents were given to the MDT (e.g. psychological support/ patient in clinic once complete where dietician/physiotherapy etc).The problem possible and kept in a dedicatedA few issues were noted with the patient-held record. This enabled access What difference has thecurrent lung cancer patient pathway: by the patient/carer, GP, community testing work made?• Multiple clinics where patients services to vital information regarding Early indications are that the new service were seen ongoing treatment plans, side effects model is working. The ability to tailor• Multiple sites where clinics were held and complications, as well as signs appointments to suit the patients’ needs• Suboptimal Macmillan nurse which may need further assessment by has been noted both by patients and availability a health professional. Patients were also staff as beneficial and has led to a sense• Periods when care passed between given the option of cancelling/delaying of better quality care. Overall, although different services with the risk that their appointment if not needed, or the number of questionnaires given out patients could be lost self-triggering a consultation if has been a little onerous only one required. patient has declined to complete one.
  11. 11. Living with and beyond cancer: The improvement story so far | 11Non elective emergencies appear to bereducing compared to data in previous A&E admissions relating to lung canceryears. Of those patients admittedbetween February and May 2010 none 14were patients who had received care 2008 2009 2010 12through the new service suggesting Number of admissionsthat we are helping to avoid 10unscheduled admissions. 8Because of the setting of the clinic and 6the increased time allotted to eachpatient, we have been able to carry out 4certain procedures in the cancer centre 2(e.g. pleural aspiration), therebyavoiding need for emergency admission 0 Jan Feb Mar Apr May Junor re-attendance at a later date for an Monthsoutpatient procedure, all of whichpatients have found distressing.The baseline CESU questionnaireindicated a high level of satisfaction Learning so far • The process of ACP is timewith the original service but also • Reviewing the whole care pathway consuming.suggested that 25% of patients felt for lung patients has provided atheir worries about their condition or sound baseline for sustainable Next stepstreatment weren’t discussed, that they improvements to the quality of care The study is ongoing. Furtheror their carers weren’t given enough • Sharing the issues identified by the development of the CCC will see theinformation about their condition or mapping event with the whole inclusion of a dedicated oncologist andtreatment (30%), that they would have respiratory team and jointly agreeing a thoracic surgeon. It is intended toliked to receive written information priorities for action has accelerated report individual case studies. A newbefore they left the OPD (25%) and progress A&E electronic tracking system will flagthat they were not told who to contact • The identification of baseline up any lung cancer patients admittedif they were worried about their measures and recording of data is and alert lung clinicians and cancercondition or treatment (50%). We providing valuable evidence to nurses by e-mail. There is a trainingawait the results of the second support improvements in practice need of further clinicians and otherquestionnaire assessing the CCC. and will help support the vision to staff for sustainability of the new establish a similar service on other system.Of the 20 patients contacted by the hospital sites and amongst otherCNS a week before their appointment, tumour groups Contact4 opted to cancel their appointment as • The appointment of a project Dr Sarah Doffmanthere was no need to attend. These manager, the development of an Consultant Respiratory Physician,slots were filled by either new patients electronic database, and the strong sarah.doffman@bsuh.nhs.uk,or patient triggered appointments. support of clinicians and nurses currently involved in lung cancer patient treatment and care are important steps in ensuring successful participation in this project
  12. 12. 12 | Living with and beyond cancer: The improvement story so farNorth Bristol NHS TrustSelf management programmes and differentmodels of follow-up care in cancer survivorshipNorth Bristol NHS Trust is the largest Big Clinics: Information and support The colorectal team were not convincedsurgical cancer treatment centre in the days 4-6 months post treatment of the benefits therefore only booked aSouth West. In recent years, teams have Uptake for all four tumour sites half day. They were surprised by almosttransferred responsibility for follow up between 60-70%. 100% uptake with an unexpectedfrom medical personnel to clinical nurse outcome of the group consistingspecialists (CNS); however they have Colorectal Big Clinic patient predominantly of men.been continuing to follow a medical feedbackmodel. • Good opportunity to review Big Clinics for prostate, kidney and current/future regimes bladder cancer had very similar resultsThe aim of this project was to explore • Exercise programme was useful and reporting of 70-95% relevance in topicsthe quality of support, information and the surveillance programme and covered. There has been such anfollow up for cancer survivor’s following symptoms to look out for were good interest in the success that the Lungtreatment. A health needs analysis • It has given me the incentive to do and Upper GI cancer teams approachedand focus group, inviting users to more exercise the cancer services team to run theirexplore unmet needs was undertaken • To review my diet and exercise own big clinic days. Due to thesein four tumour sites: breast, colorectal, • Change diet and exercise more tumour sites having patients withurology and haematology. This helped • To maintain regular exercise poorer prognosis at the outset we wereus identify gaps in service provision and • Look after my diet more keen to see the teams’ approach andto design a model that delivers • Feel more confident to engage in evaluations.supported self care and holistic needs physical exerciseassessment (HNA). • Sessions very informative.The Penny Brohn Cancer Centre and Feedback from evaluation formsUniversity of the West of England(UWE) have been workingcollaboratively with us on this project. Colorectal Big Clinic evaluation resultsLifestyle management 105The models of self management chosen Good and relevantto test were: 100 99.5• Big Clinic days run by the clinical 95 teams 90 92.85• 10 week course, one day a week run by Penny Brohn Cancer Care 85 85.7 85.5 85.73• Residential weekend course run by 80 Penny Brohn Cancer Care• Cognitive Behavioural Therapy (CBT) 75 Venue Diet Complimentary Fitness Recurrence course for breast and prostate cancer Advice Therapy & Exercise Symptoms patients run by clinical psychologists and CNSs.
  13. 13. Living with and beyond cancer: The improvement story so far | 13 Lung Big Clinic evaluation results Can you list two ways in which your life may change following today’s event? 120 • Being more positive • Try to be more active Good and relevant 100 • Start living normally again 80 • Do more exercise 60 • That I can exercise 40 • To stop using my cancer as an escape 20 • Exercise with confidence 0 • Not to make excuses and to Venue Patient Diet Physio Treatments Living Life start doing housework again Story to the Full • Go on holiday • More positive outlook • Don’t panic and give up.The lung team ran a Big Clinic and now Patient feed back from the Further comments:run them on a rolling three monthly Big Clinic day • Follow up sessions would bebasis. The evaluation highlighted some extremely helpfulpatients would benefit from more in- • Very worthwhile it would bedepth support from one of the more Can you list two things that good to have regular sessionsstructured courses. you have learnt from today? • Thought the venue could not • Meeting others that have the be bettered same problems • Very useful morning • Available support • Very useful knowing parking • I am not alone spaces were reserved • Diet and travel information • Very good day – thank you • To realise that I am not • We enjoyed the day, its been discarded very beneficial and was well put • Not to be concerned about together. shortness of breath • Physio info was good I have learnt you don’t have to stop when you feel breathless • Confidence and how important it is to work through anxiety • Not as gloomy and outlook is more positive • Allowances and benefits • Diet and activity • Feel there is support • You can do more than you think • Breathing.
  14. 14. 14 | Living with and beyond cancer: The improvement story so farObtaining user’s and clinical teams’ Client Relations Managementviews, and in setting up the lifestyle (CRM) systemmanagement programmes during CRM systems are used by largescoping, it became evident that companies to track importantdifferent models of follow-up care information about their customers,could be used dependant on level of so whenever contact is made with arisk of recurrence and levels of customer, they can have all of theintervention needed. These would relevant information to hand, and anyconsist of a combination of: actions can be initiated and tracked.• Supported self management with self referral back into system Client Relations Management System• Self management with remote follow-up through telephone clinics• Self management and face to face follow-up• One of the above plus appropriate surveillance tests.To increase confidence for clinicalteams to move away from a medicalmodel they needed assurance thatpatients would not get lost to followup. Equally, proposed changes, wouldnot impact on identifying recurrence ofcancer in any way.Therefore an information gatheringprocess began on how patients in each Having explored whether an ‘off the • Alert the CNS when the patient hastumour group re-presented with shelf’ CRM could be adapted it was felt not had any contact for a year inrecurrence: surveillance examination, that building a system to meet our order that action can be taken.OPA or self referral and this audit is still needs would be better.ongoing with results pending. Progress and learning so far The system will enable: • High level of administration forAdditionally we identified that there • Summary of episodes by linking to all lifestyle management - will improvewasn’t an information system that Trust systems This will include with CRM systemallowed collection of HNA, access to attendance at lifestyle management • Benefits have been recognised byself management and generally to act events and when HNA has been done other teamsas an alert system if the patient failed • Diary management of lifestyle • Tumour specific sessions provided tooto have the appropriate interactions. management events indicating when late in patient’s journey thereforeTherefore we are developing a new IT invites should be sent out to patients would not be included in futuresystem, the Client Relations • Holistic needs assessment via DistressManagement System (CRM), which is Thermometer recording care plansjointly funded by Macmillan and the and reports to help determineTrust’s IM&T department themes to target Big Clinic topics and other support needed
  15. 15. Living with and beyond cancer: The improvement story so far | 15• Some sessions found not relevant to all participants dependent on treatment, i.e. surgical, radiotherapy or hormonal. Courses redesigned so groups have core sessions as a whole then split into sub groups for more treatment specific relevant sessions• Analysis of evaluation of Penny Brohn courses in progress.Next steps• Qualitative analysis of lifestyle management approaches using focus groups in collaboration with UWE• Redesign of follow up protocols to adopt different model incorporating self management• Complete audit on recurrence presentation• Run and evaluate CBT courses in breast and prostate• Economic evaluation• Enable other cancer teams to replicate model• Write up of pilot, disseminate and development of commissioned service.ContactsDany BellLead Cancer Nurse and CancerManager – Project LeadDany.Bell@nbt.nhs.ukMarika HillsAssistant Lead Cancer Nurse – ProjectManagerMarika.Hills@nbt.nhs.uk
  16. 16. 16 | Living with and beyond cancer: The improvement story so farThe Christie Test CommunityThe importance of establishing peer groupsupport for survivors of pelvic cancersSummary • The lack of opportunities for user • The other breakout group discussedThe Christie is a tertiary centre treating involvement highlighted the need to ideas around the support group,over 40,000 cancer patients a year, host a user group meeting that specifically the organisation of when,serving a population of 3.2 million included clinicians and patients and how often to meet and whoacross Greater Manchester and • A date/time/venue to hold an initial would take on the key roles.Cheshire. Due to the nature of tertiary ‘user group’ meeting was agreed. However, these issues were carriedreferrals, 26% of the referrals are from The afternoon included lunch forward with a view to enabling theoutside the area. This project focuses /networking, some appropriate users to make these decisions onceon support for patients experiencing clinicians gave formal lecture style there is a core membership, to ensurethe late effects of radiotherapy presentations, chaired by the project’s ownership and purpose of the grouptreatment for pelvic cancers in a peer clinical lead is clear.support group setting. We have • Following this initial user involvementachieved greater user engagement and meeting, we established a database What difference has the testingare working on the sustainability of the of patients who have been identified work made or identified?peer support group. We are also by our clinicians as suffering from the • The feedback from attendees is goodlooking at patient information and the late effects of pelvic radiotherapy and they appreciate the group,oncolink web based care planning tool • Post meeting, a letter asking users to indicating a need to continueto help patients with supported self put forward ideas to include at the offering a framework for accessingmanagement and understanding the next session – including the peer support amongst the targetsign and symptoms of late effects. establishment of a peer support population group and a panel session where • The attendees present and thoseThe problem clinicians answer written questions approached to attend have helped toA lack of support for survivors of pelvic submitted anonymously by users establish a large number of engagedcancers experiencing late effects was • Questions submitted ahead of the individuals who could also be calledevident from concerns and problems event included: upon to participate in other aspectsidentified at the late effects clinics at • ‘does lifestyle influence cancer?’ of the project e.g. commenting onthe hospital. This coupled with the • ‘what is the risk to other members oncolink and patient informationprofessional’s desire to empower of the family and friends during booklet content.patients to self-manage their symptoms treatment with radiotherapy?’of late effects to improve their quality • One of two ‘breakout’ sessions asked Learning so farof life and establish an effective peer attendees to look at the ‘Oncolink’ • Good attendance, apparently wellsupport network for patients led to the online care planning system as a received sessions from verbal orfollowing testing and development. presentation and then try it at home. informal feedback, however, there Ten people tried this and sent back was no evaluation form for attendeesWhat was done an evaluation with mixed reviews. to fill in following the first few• Information was collated around:- One patient stated in answering the sessions – therefore it was difficult to • the prevalence of late effects question ‘how easy did you find quantify the event’s success, or which • the level of contact with healthcare generating your own care plan?’ ‘not parts were most useful professionals following the acute very easy, do not know which part is • A lot of feedback related to what treatment phase the care plan, would have to be told attendees would like in future • the provision of patient information a bit more’ highlighting the issues of sessions. This demonstrated the • how individuals share their care planning can be at a very basic enthusiasm for peer-to-peer thoughts, stories and advice with level networking and a keenness to be people in a similar position involved in the planning and delivery of future events. This will ensure we have a clear idea of what is required, the Q&A panel with pre-
  17. 17. Living with and beyond cancer: The improvement story so far | 17 submitted questions was the patients’ idea and gave patients a Did you have a chance to say everything you wanted? chance to be heard, (see the evaluation graph on the right) 8• The feedback received in relation to Number of respondants 7 the Oncolink care plan was very 6 7 useful and demonstrates the 5 necessity for patient feedback to 4 inform service developments 4• For the group to be sustainable, the 3 issue of its administration needs to be 2 2 addressed as it can be challenging 1 1 to engage patients in this work. At 0 present the group is being facilitated Yes, Yes, to some N/A No definately extent by the project team and this consumes a lot of time.Next steps• The establishment of a user-led support group that is self sustaining and with patients in key roles running the group, without reliance on trust led facilitation• Continue to host user group meetings during the life of the project and assess sustainability.ContactBen HeyworthProject ManagerTel: 07917 628 672
  18. 18. 18 | Living with and beyond cancer: The improvement story so farClatterbridge Centre for OncologyMoving forward (or initially backwards!): setting up asuccessful education programme for patients living withand beyond pelvic cancerSummary The problem mirrored those of the groupClatterbridge Centre for Oncology has The programme was aimed at pre- participants. 67 patients invited, 21an average of 50 patients treated on empting some of the problems that attended, six of whom turned upeach accelerator every day and over patients regularly encounter living with having not responded but brought7,000 new patients registered at the and beyond cancer which are identified SPARC with them, five returnedhospital each year. In the delivery of at the late effects clinic. We conducted completed SPARCs but couldn’tservices, the Trust works alongside a baseline case note audit for 45 attend the sessions.other hospital trusts within the patients (15 gynaecological, 15Merseyside and Cheshire Cancer prostate, 15 colorectal) looking for What difference has this testingnetwork, both as part of a joint multi- documented post treatment side effects work identified?disciplinary team approach to treatment e.g. sexual health issues, bowel and Positivesof patients and in the provision of out- bladder problems, to see whether there • Patient needs identified from thepatient and day care services within was any documented care plan or baseline audit and SPARCthose trusts. evidence of onward referral to assessments showed the same types appropriate agencies. The audit of emotional and information issuesThe aim of the project was to educate confirmed the results from the Picker being raisedpatients in a ‘Moving Forward’ group to baseline survey where patients • SPARC responses identified postlive with and beyond cancer. We indicated that they had concerns about treatment side effects e.g.completed a baseline case note audit to late effects and would have liked more psychological issues, fatigue, exercise,establish if patients who have had information regarding these and where getting back to worktreatment for pelvic cancers (colorectal, to access help and advice. • The casenote audit and completedprostate and gynaecological) identify SPARCs revealed that there were nocommon post treatment side effects What was done consistent onward referrals. This hasduring their medical review in the late • The baseline audit set the educational resulted in greater awareness withineffects clinic. The aim was to establish agenda to address the common post the Clatterbridge team and clearthe prevalence and management of treatment side effects for the first onward referrals pathways andsymptoms and identify existing primary programme. 67 patients were robust partnership workingcare services to which patients are invited, 15 phoned to confirm • Effective cross boundary working andreferred. attendance and returned a sharing of expertise. completed SPARC before the coursePatients were invited to attend the commenced. Some minor alterations Negatives‘Moving Forward’ group and to i.e. dietetic advice were added • If additional needs are identified aftercomplete a Sheffield Profile for following collation of the data from the agenda has been set, timescalesAssessment and Referral for Care the returned SPARCs can make it difficult to access other(SPARC) Holistic Needs Assessment • During this first session some Allied Health Professionals for their(HNA) to ascertain whether our signposting was done for identified inputbaseline case note data correlated with level 3 needs as defined in the SPARC • When SPARC is completedpatients’ identified needs. This tool i.e. a patient that feels that in anonymously only generalinformation then formulated the the past month they have been signposting for further supportcontent of the sessions and provided distressed or bothered by the services could be done as part of aevidence of need. problem ‘very much’ group session. A robust policy for the • Interestingly, some patients who use of SPARC in this setting is declined to attend still sent back the essential. SPARC and their identified needs
  19. 19. Living with and beyond cancer: The improvement story so far | 19Learning so far We are also liaising with highlighted• SPARC is easy to use, easy to services to establish whether there has interpret. Participants are happy to been an associated increase in number complete and appropriateness of referrals, e.g.• Format of the group sessions needs speaker from continence service has further exploration as small breakout highlighted the number of referrals groups were problematic, before the from programme session on group developed confidence in one continence. another• Group sessions were held in a very Contacts accessible community centre which Mhairi Hawkes offers a less formal opportunity to Cancer Nurse Specialist chat to health professionals mhairi.hawkes@ccotrust.nhs.uk• Having a run through of the each session prior to delivering it to Hannah Roberts participants would perhaps have Occupational Therapist identified issues i.e. more facilitators, hannah.roberts@ccotrust.nhs.uk different room placements, appropriate Health Care Professionals• Don’t change the day the group runs!! We changed the day due to the hall being unavailable and despite this being highlighted as much as possible, several patients still turned up on the wrong day.Next stepsIn the next course we will:• Pair sessions together where information follows a similar theme e.g. continence and sexuality, fatigue, exercise and work• Adjust times of sessions to cater for a wider range of patients e.g. run on consecutive evenings rather than weekly in the afternoons• Ensure availability of identified speakers, to co-ordinate with availability of venue and dates arranged.
  20. 20. 20 | Living with and beyond cancer: The improvement story so farEast Kent Hospitals University NHS Foundation TrustPatient group involvement in shaping assessmentand care planning (ACP)Summary • 31% didn’t know who to contact in • A ‘wellness’ tool, based on theThe East Kent Hospitals University NHS hours and 74% patients didn’t know Velindre Cancer Centre breast cancerFoundation Trust (EKHUFT) comprises who to contact out of hours if they health questionnaire, was developedthree hospitals with a population of had a problem. and implemented. This prompts750,000 people. The cancer centre is discussion between the patient andbased at Kent and Canterbury Hospital A further local baseline assessment of breast surgeon in follow upwith further diagnostic and outpatient 100 sets of case notes for patients with consultations.services provided in Margate and a diagnosis of breast cancer identifiedAshford. The focus of the survivorship that whilst medical needs were Learningproject was to develop with patients documented there were few Generaland clinical teams an improved model psychosocial or support needs • Feedback from the focus groups wasof care for survivorship that listens to recorded. that patients were pleased to supportand responds to patient needs. the project, be ‘given a voice’ and the What was done? opportunity to influence care. ForA series of focus groups with patients • Patients were invited in via local professionals, user involvement haswho are living with or beyond a support groups to attend focus group provided a unique insight into thediagnosis of cancer over the last year meetings to identify service gaps and care provided and areas forhave identified ways to improve explore ways to help others move improvementservices across the cancer pathway forward following treatment • The development and review of thefocusing specifically on the survivorship • The team mapped the current and assessment tools within a CNSphase and to advise on the use of future care pathway for breast project group has created interest,assessment and care planning tools. patients treated with curative intent. enthusiasm and ownership, taking This work supported the emerging the project forwardThe problem ideas from the focus groups: • Feedback states the ‘wellness tool’ isFocus group participants reported that 1)To test whether a discussion at the a useful prompt for discussion.following treatment they experienced end of initial treatment and between during clinic consultation withfeelings of isolation, abandonment and first and second follow up visit would patients and professionals finding theanger, with little opportunity to discuss improve the patient experience. tool simple to usetheir needs. They didn’t know who to 2)To develop a tool for assessing the • CNS’s felt that an end of treatmentcontact and felt their GPs had limited overall ‘wellness’ of the patient at assessment identified needs that mayinformation about their condition and each surgical outpatient visit otherwise have been missed.treatment. They were confused about • A team of clinical nurse specialists However, both patients and staff feltthe role of the Cancer Nurse Specialist from across the Trust were convened the process should commence at(CNS) and key worker. to test this approach and test two diagnosis and be reviewed at key types of tools: points in the pathwayThe national Picker Institue baseline 1)The full NCSI ACP framework tool • Not all patients were willing tosurvey of 70 breast cancer patients was tested on 16 patients. It included complete a self assessment, manyreflected similar feedback and found a patient self assessment tool, an preferring the professional tothat: assessment record completed by the complete the checklist with them• 87% patients didn’t have a care plan professional and a management and • An assessment can be successfully• 34% didn’t know what to expect at support plan for the patient to keep. completed by phone. Assessment future appointments 2)The Distress Thermometer tool. This times ranged between 15 to 60• 58% received insufficient information was tested on 14 patients and advice • Face to face and telephone assessments were carried out by the CNS or oncology nurse
  21. 21. Living with and beyond cancer: The improvement story so far | 21 minutes with an average of 35 • The patient working group preferred minutes, however, they took longer the DT tool over the NCSI tool. They and were less productive where the suggested the thermometer be kept professional was not known to the but replaced with title ‘The stress patient prior to the meeting scale’ so it is less medical and more• Professionals and patients benefit if patient friendly. the assessor has completed advanced communication skills training Next steps• Testing suggested that a structured 1. Report user group views to CNS job plan with dedicated assessment team to agree an assessment tool time is required to enable roll out and that can be tested earlier in the sustainability across the organisation. pathway 2. Map the whole care pathway forLearning from using the NCSI each tumour to agree the key pointsassessment and care planning at which an ACP discussion shouldframework tool occur, the location, the tools and• Of the 16 patients asked to complete with whom the results are the self assessment section none communicated to ensure a opted to complete it. Reasons cited standardised approach to ACP across were: form too complex, difficult to the Trust use and not patient/user friendly 3. Review job plans for CNS staff to• Professionals felt the two assessment support implementation of ACP tools would be more useful as a 4. Test the NCSI Treatment Record baseline assessment at diagnosis. Summary for GPs to improve One patient said ‘I would have liked primary/secondary care interface this prior to treatment starting’ communication• Some staff felt the documentation 5. Work with network wide breast was too long and took excessive time group to use the ACP process as an to complete. It was difficult to enabler for stratifying patients into complete live and required flicking supported self management between pages. pathway as alternative to traditional follow upLearning from using the Distress 6. Undertake second national PickerThermometer Tool Institute survey for patients who• Patients and staff disliked the term have participated in the new ‘Distress Tool’ for patients in recovery pathway and several CNS’s felt that the 7. Test the use of ‘wellness tool’ with domain headings in the tool rather breast patients prior to attending than the thermometer itself provided follow up clinic. a better prompt for discussion. The CNS team proposed a more Contact professionally led ‘concerns tool’ Mary-Anne Lovett using tick boxes to identify key issues Lead for Cancer Survivorship Project with the patient mary-anne.lovett@ekht.nhs.uk
  22. 22. 22 | Living with and beyond cancer: The improvement story so farGloucestershire Test CommunityA real life example of partnership workingSummary • Can speak a number of languages to In terms of cost; there has beenThe Gloucestershire Survivorship project reduce barriers experienced by black concern that the Village Agent serviceinvolves cancer patients and carers, and minority ethnic communities may be viewed as an ‘add on service’employees from the 3 Counties Cancer • Have ongoing support to help them but the focus of increasing quality ofNetwork, Gloucestershire Hospitals NHS with this role. life as well as early signposting byFoundation Trust, Gloucestershire agents could have positive long-termCommunity and Adult Care, This project is therefore an exciting consequences. If this pilot was rolledGloucestershire Rural Community opportunity to work in partnership with out as part of health and social careCouncil and Macmillan Cancer Support social care providers to develop a across the country it would enable allall working together to support cancer distinctive service for cancer survivors people living with and beyond cancersurvivors. The local initiative is delivered and their carers in the county. access to timely support regardless ofthrough a pre-existing Village Agent the stage of the cancer pathway.service originally launched in 2006. This What was donepilot has expanded the remit of the • Recruited and identified eight Village Outcomes so farexisting Village Agent service to cover Agents willing to support this project • 27 people have contacted the VAall areas of Gloucestershire and to and work an additional 10 hours per service; 14 female, 13 male. Ofsupport anyone aged 18 and over who month which 19 have diagnosis of cancer;is living with or beyond cancer. • Developed training and support the remaining eight have a friend orGloucestershire has a population of package to undertake this role family member who has cancer582,600, a third of whom are classified through CNS, clinical psychologist • The cancer diagnoses have rangedas living in rural communities and and other health care professionals from prostate cancer to kidney cancer44,000 are recorded as experiencing • Development of a manual as a source with the most common beingextreme poverty. of reference to support signposting prostate and bowel cancers and contact details • Average age of contacts: 74; rangingVillage Agents: • Developed publicity materials such as 43 – 93 years• Bridge the gap between local GP, local community and bus • Seventeen of the contacts have been community and statutory and advertisements and leaflets self-referral with the rest ranging voluntary organisations • Developed learning sets/supervision from family referral to Police• Act as facilitators and provide high for continuing support. Community Support Officer referral quality information • The most common reason for• Are based within the community and Learning so far contacting an agent has been a need visit people in their own homes Whilst there is full support for the for home or practical help. Other• Are unique to Gloucestershire and added value of this project, we’ve reasons for contact include have been commended nationally experienced difficulties such as lower help/support with benefits and• Are employed to work about 10 numbers of referrals than expected transport and requests for hours per week accessing a Village Agent. The team information about respite care and• Can identify unmet needs (e.g. has worked hard on advertising support groups financial, practical, social, emotional) however; this largely depends on • The numbers of pre and post contact and signpost to a wide range of people self-referring and an local evaluation questionnaires services opportunity for people to become received have not been sufficient to• Offer help and support when familiar with the service. Village Agents draw conclusions about the impact of required have found ‘word of mouth’ and the VA service in addressing the• Have undergone further training in ‘familiarity’ to be the most effective needs of those living with and preparation for this project in strategies historically. As this is a pilot, beyond cancer, however local assessment, care planning and there have also been concerns whether evaluation is ongoing and will be identifying needs for patients with this service will continue to be available assessed once sufficient evaluation cancer if people refer their patients. questionnaires have been received.
  23. 23. Living with and beyond cancer: The improvement story so far | 23How are clients referred to a Village Agent?
  24. 24. 24 | Living with and beyond cancer: The improvement story so far Assessment and signposting
  25. 25. Living with and beyond cancer: The improvement story so far | 25Next steps• Continue to collect data to evaluate service• Liaison with GPs to raise the profile of this initiative• Continued publicity of this initiative.ContactSarah DrydenProject ManagerGloucestershire Survivorship Projectsarah.dryden@glos.nhs.ukFran CallenProject ManagerGloucestershire Survivorship Projectfran.callen@glos.nhs.uk
  26. 26. 26 | Living with and beyond cancer: The improvement story so farGuy’s and St Thomas’ NHS Foundation TrustSurviving cancer living life – a nurse led telephoneservice for breast and prostate cancer survivors Pfizer Health Solutions Guy’s and St Thomas’ NHS NHS Foundation TrustSummary Following an initial assessment, theSurviving Cancer Living Life (SCLL) is a patient and the care manager identifytelephone based support service priorities and and develop an individuallaunched by Guy’s and St Thomas’ NHS care plan, focusing on the areas ofFoundation Trust (GSTT) in May 2008. greatest need. Telephone calls areThis pilot service is offered to people planned, usually starting fortnightly,who have recently finished active before moving to monthly. Patientstreatment (surgery, radiotherapy, usually access the service for betweenchemotherapy) for breast or prostate six and nine months.cancer, that received any part of theirtreatment at these hospitals. The problemSCLL is run by the Trust in partnership • The steering group, formed in thewith Pfizer Health Solutions (PHS), autumn of 2007, consisted of stafffinancially supported by Guy’s and St from GSTT, PHS and King’s CollegeThomas’ Charity. By May 2010 over London (KCL), identified a lack of570 breast and prostate cancer patients support for cancer survivorshave used the service and it has been • PHS had already developed aextremely well received. telephone-based support service for • Steering group set up with people with chronic conditions such representatives from all organisationsTwo experienced cancer nurses referred as COPD and were interested in and the project plan signed offto as care managers give personalised developing the model to include • Evaluation meetings, project workingtelephone-based support. This holistic cancer patients group meetings and meetings withservice uses the concepts of • It was decided to pilot this telephone- various stakeholders also took placemotivational interviewing and health based support service with breast and regularly during the developmentcoaching to help people to: prostate cancer patients as they are a phase• Better understand factors that affect large patient group of both sexes. • Barriers and challenges at this point their health included recruiting the care managers• Build confidence and skills to cope What was done (band 7 oncology nurses) and with, and overcome, the anxiety of Project Scoping integrating the Trust IT system and a living life after cancer In October 2007 the two main parties new PHS software system to record• Acquire the skills, knowledge and GSTT and PHS agreed to pilot a patient’s details and care plans habits in order to remain fit and telephone service, with Kings College • The care managers five week healthy London to evaluate the service. training programme included• Follow their treatment programmes Contracts were signed off. motivational interviewing, advanced correctly communications, detailed sessions on• Understand how to engage with, and Development phase the role of the care manager and IT use, local NHS, social and voluntary December 2007 – May 2008 system training services more effectively.

×