PTC Aftercare (Late Effects) - University Hospitals Bristol NHS ...

Annual Report Paediatrics – PTC Aftercare (Late Effects) MDT University Hospitals Bristol NHS Foundation Trust 0117 923 0000 Minicom 0117 934 9869 www.uhbristol.nhs.uk

Agreement and Approval PTC Late Effects Lead Clinician

Professor Michael Stevens (for Dr Rachel Cox)

Date

Signature (agreed via email)

28/09/2012

Review Date Operational Policy Review Date:

01/07/13

Versions Version

Date

Reason

1.0

19/07/11

Draft revision for 2011 Peer Review

2.0

Sept 12

2012 report produced

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Sign Off

28/09/2012

Paediatrics – PTC Aftercare (Late Effects)

1

Measure Checklist

Measure Number

Measure

11-7B-201

Lead Clinician and Core Team Membership

11-7B-202

Extended team membership

p9

11-7B-203

Treatment planning meeting

p10, p12

11-7B-204

Cover arrangements for core team members

11-7B-205

Core members attendance

11-7B-206

Operational policy meeting

p13

11-7B-207

Key worker policy

p13

11-7B-208

Patients' permanent consultation record

p15

11-7B-209

Patient experience exercise

p15

11-7B-210

Provision of written patient information

p15

p6

p81-83

11-7B-211

Follow up and care planning decision

p14-15

p6

p3-9

11-7B-212

Late effects MDT follow up and long term sequelae protocol

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Operational Policy

Annual Report

Work Plan

p9

p12

Supporting Information

p9-10

p9

p16

p84-85 p10

p8, p10 p6

p12

p5, p8

p10-68

Paediatrics – PTC Aftercare (Late Effects) 3

2

Contents

1

Measure Checklist ......................................................................................................................... 3

2

Contents ........................................................................................................................................ 4

3

Introduction.................................................................................................................................. 16 3.1 Key Achievements .............................................................................................................. 16 3.2 Key Challenges ................................................................................................................... 16 3.3 MDT structure ..................................................................................................................... 16 3.4 Referral pathway and MDT process .................................................................................... 17

4

Meeting Details ............................................................................................................................ 19 4.1 Core MDT Role Meeting Attendance (11-7B-205) ............................................................... 19 4.2 Core MDT Individual Meeting Attendance (11-7B-205) ....................................................... 19 4.3 Meetings to Discuss Operational Policies ............................................................................ 19

5

National / Local Audit ................................................................................................................... 20 5.1 Network Audit ...................................................................................................................... 20 5.2 Local Audit .......................................................................................................................... 20 5.3 Audit of Keyworker Provision (11-7B-207) ........................................................................... 20

6

Research ..................................................................................................................................... 21 6.1 Clinical Trials ....................................................................................................................... 21

7

Patient and Carer Feedback and Involvement (11-7B-209) ......................................................... 22 7.1 Current Work ....................................................................................................................... 22 7.2 Action from Previous Audit .................................................................................................. 22

8

Policies and Procedures .............................................................................................................. 23 8.1 Standards of care ................................................................................................................ 23 8.2 Guidelines ........................................................................................................................... 23 8.3 Development of policies and procedures ............................................................................. 23

9

Service Profile ............................................................................................................................. 24 9.1 Level of Care ....................................................................................................................... 26 9.2 Models of Care .................................................................................................................... 27 9.3 Diagnosis ............................................................................................................................ 27 9.4 Clinical dependency ............................................................................................................ 28 9.5 Documentation .................................................................................................................... 28 9.6 Interventions Made .............................................................................................................. 29 9.7 Information Provided ........................................................................................................... 29 9.8 Unmet needs ....................................................................................................................... 30

10

NHS Improvement ............................................................................................................ 31

11

NHS Networks/Workspace ................................................................................................ 32

12 12.1 12.2 12.3 12.4

Future Plans ..................................................................................................................... 33 MDT work plan .................................................................................................................... 33 NHS Improvement project: on going activity ........................................................................ 33 Exeter Pilot Clinics .............................................................................................................. 33 Care Coordinator................................................................................................................. 33

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12.5 12.6

ON TARGET ....................................................................................................................... 33 Aftercare Database ............................................................................................................. 34

13

Appendix 1 ........................................................................................................................ 35

14

Appendix 2 ........................................................................................................................ 36

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Appendix3

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........................................................................................................................................................... 37 15

Appendix 4 ........................................................................................................................ 46

16

Appendix 5 ........................................................................................................................ 68

17

Appendix 6 ........................................................................................................................ 70

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3

Introduction

The MDT commenced operation in February 2010. This report reflects the activity undertaken from 1st April 2011 – 31st March 2012. In contrast to the work of the diagnosis and treatment MDTs, where emphasis is on time to diagnosis and trial recruitment, this report includes details on the work and membership of the Aftercare team including clinical activity data, audit and patient satisfaction. It also reports progress on addressing the key national targets proposed by the National Cancer Survivorship Initiative (NCSI) that: 

All patients should have a treatment summary



All patients should have a care plan



Hospital based follow up of survivors should be reduced by 20%.

A recent change is the preferred use of the term ‘Aftercare’ rather than Late Effects, and the service is now known as the South West Aftercare Service (SWAftercare), and the MDT as the Aftercare MDT.

3.1

Key Achievements



Designation by NHS Improvement as one of four national protocol sites for the NCSI CYP Workstream



Receipt of two national awards for presentations at NCSI meetings



Funding for, and development of a Care Coordinator post to be evaluated as pilot experience



High recruitment to clinical trials / studies

3.2

Key Challenges



Implementation of a robust strategy across the paediatric oncology servicve for the creation of Treatment Summaries at the end of treatment



Failure to progress the development of specialist Aftercare clinics on a shared care basis despite a positively evaluated pilot project because of lack of commissioner support



Lack of access to the Aftercare service for patients in the Peninsula



Absence of psychological support for Aftercare patients



Development of nurse led clinics

3.3

MDT structure

The core MDT consists of a service lead – Dr Rachel Cox, Paediatric Oncologist; Professor Mike Stevens, Paediatric Oncologist (both with dedicated sessions for Aftercare); Ruth Elson, Clinical Nurse Specialist for Aftercare and Endocrinology; Dr Karin Bradley, Endocrinologist (adult patients); Dr Elizabeth Crowne, Endocrinologist (paediatric patients); and Divya Bassi (to November 2011) and Verity Thorne (from December 2011) as MDT co-ordinator.

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Divya Bassi took up a new post as SWAftercare Care Coordinator from December 2011 This post is supported to December 2013 with funds from NHS Improvement as part of the work undertaken by the SWAftercare team as a prototype site for the NCSI Children’s and Young Persons (CYP) workstream (see section 9). The team has links with Dr Alison Cameron, Clinical Oncologist and Lead clinician for TYA services although Dr Cameron is an MDT member by circulation only. Specific clinicians are identified for key onward referral pathways (Dr Angus Nightingale, cardiology and Miss Bryony Strachan, gynaecology and female fertility, both at UH Bristol NHS FT; and Mr Peter Wardle, reproductive medicine at North Bristol NHS Trust). There is no psychology support to the MDT and referrals are made as necessary via primary care teams, local agencies and to some voluntary organisations.

3.4

Referral pathway and MDT process

An Operational Policy defines the referral pathway for SWAftercare and the processes governing the MDT. Referrals to the service are accepted from: Paediatric Oncologists / Haematologists / BMT consultants and Endocrinologists from within the PTC Shared Care Paediatricians Out of region referrals – usually from other Aftercare services / Oncologists / Haematologists General Practitioners, and from patients by self referral All referrals (except self referrals) are initiated by letter to either Dr Cox or Professor Stevens and should be accompanied by an up to date treatment summary. In the case of GP or out of region referrals, treatment summaries are requested from the original treating centre. All new referrals are first discussed in the MDT and subsequently allocated an appointment. Following the first appointment, all new patients are then discussed again in the MDT for agreement of level of care and confirmation of care plan. Appendix 1 illustrates the NCSI CYP pathway for paediatrics (additional pathways have been defined for TYA patients) . This provides the framework to which SWAftercare works.

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3.4.1 Levels of Care Historically, data on patient level of care (which provides an estimate of the service needs of the patient and the complexity of care likely to be required) has been defined according to the so called ‘ Wallace’ levels of care (SIGN 2004). Since 2010, a derivation of the Wallace levels has been adapted for local use (‘Cox’ Levels of Care) in an attempt to derive a more sensitive measure of the comorbidities, ongoing risks, patient understanding and patient dependence on the clinical service. The Cox levels of care are derived from Wallace levels of care and can be reported as such if necessary (Appendix 2). The data collected on Cox levels of care now need to be evaluated and validated against other prospectively collected data defining patient characteristics and needs, utilising the Aftercare clinic audit tool (supporting information).

3.4.2 Models of Care The NCSI CYP workstream has proposed four possible models of care (Consultant led; Shared care; Nurse led; and Supported self management). Currently only two of these models of care exist within SWAftercare – consultant led care (considered nationally to be the optimal model of care for Wallace level 3 patients) and supported self-management, which is implemented mainly for Wallace level 1 patients. The service would like to offer nurse led clinics, mainly for level 2 patients, but hitherto there has been insufficient resource to allow the CNS (Ruth Elson) to develop such clinics, particularly as she also carries a significant workload in relation to the endocrinological investigation and management of all oncology patients. The Care Coordinator role may however be shown to have reduced the demand on CNS time to an extent which may permit development of some nurse led clinics although full implementation is still thought likely to require additional CNS support. The SWAftercare team has been working with NHS Improvement as part of the NCSI CYP workstream since 2010, first as a pilot site and latterly as one of four national prototype sites. The specific aim of the work undertaken by SWAftercare was to evaluate the delivery of specialised Aftercare in a shared care setting. A model service for patients resident in the Peninsula Cancer Network was designed, based on detailed exploration of patients and professional views and on geographical analysis of the likely location of such a service in relation to patient residence in Devon and Cornwall. A series of pilot clinics were undertaken in Exeter from May – August 2011. These evaluated very well and the evidence acquired was used as the basis of a bid to commissioners for additional resource to further implement this model of care. The bid was unsuccessful and no further clinics have been held outside Bristol since that time. A resubmission to commissioners is planned for 2012.

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Meeting Details

The Aftercare MDT regularly record attendance The Aftercare MDT met on eight occasions. Four were cancelled. The attendance table below is calculated of five meeting where attendance was recorded on the Cancer Register. For the remaining three meetings, attendance was recorded on a paper record which we were unable to locate. Attendance is now recorded electronically on the Cancer Register. A full breakdown of MDT meeting attendance for core MDT members for period April 2010 – to March 2011 is as follows.

4.1

Core MDT Role Meeting Attendance (11-7B-205) Role

% Combined Attendance 11/12

MDT Clinical Lead

80%

Paediatric Oncologists

100%

Specialist Nurse

90%

Endocrinologist

100%

MDT Coordinator and secretary

100%

4.2

Core MDT Individual Meeting Attendance (11-7B-205)

Name

Job Title

% attendance 11/12

Rachel Cox

Paediatric Oncologist

80%

Mike Stevens

Paediatric Oncologist

60%

Ruth Elson

Specialist Nurse

90%

Liz Crowne

Endocrinologist

90%

Karin Bradley

Endocrinologist

40%

Divya Bassi

Care Coordinator

100%

4.3

Meetings to Discuss Operational Policies

The MDT Operational Policy meeting was held on 20th March 2012, and the minutes are available in the supporting information on page

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5

National / Local Audit

5.1

Network Audit

There is no official Network audit, however the SW Aftercare project spans the whole region.

5.2

Local Audit

The entire SWAftercare project (section 9) represented a major audit of patient and professional views about the development of an Aftercare service (see final report at Appendix 4)

5.3

Audit of Keyworker Provision (11-7B-207)

Ten sets of notes were chosen at random and checked to see if a keyworker’s name and contact details were clearly recorded therein. The audit showed that 90% notes did have this information recorded.

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6

Research

6.1

Clinical Trials

Relevant national studies for patients in the Aftercare service included:   

FACT study CYP135 Ifosfamide nephrotoxicity study Lung function in Wilm’s study

15 patients were offered recruitment to study during a clinic visit; 13 accepted. In addition, 52 patients were recruited to a local NIHR portfolio research study (PI Dr Christina Wei, supervised by Dr Crowne and Professor Stevens) on “Mechanisms of impaired glucose tolerance in survivors of childhood ALL treated with and without BMT and TBI”. At present there is no mechanism to collect data on the number of Aftercare attendees eligible for a trial or study although all patients will now be screened for eligibility at the clinic planning meetings initiated by the Care Coordinator from February 2012.

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7

Patient and Carer Feedback and Involvement (11-7B-209)

7.1

Current Work

The MDT carried out a survey of the views of patients attending the Aftercare clinic. Patients seen in both Bristol and Exeter Aftercare clinics from February to August 2011 were invited to complete a short, written survey consisting of 15 questions. Seventy patients responded and the results can be found in Appendix 3. The data provide evidence for a high level of patient satisfaction with the service - 100% patients rating it as good or excellent and 100% stating that they would generally or definitely recommend the service to a friend with similar needs. Areas for improvement include availability of treatment summaries and explanation about contact details. Considering that almost 80% of patients report that they spent more than 45 minutes with staff, the waiting times for most, before they are first seen, are acceptable with 91% being seen within ½ hour of arrival and 50% within only 10 minutes.

7.2

Action from Previous Audit

The survey reported in Appendix 3 was the first undertaken by the MDT. Plans for 2012/13 include a repeat satisfaction survey of patients attending clinic over a sample 4 month period, asking most of the same questions but with additional questions to better understand patient response to the role of the Care Co-ordinator. This is likely to influence response to the availability of treatment summaries and explanation about contact details.

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8

Policies and Procedures

8.1

Standards of care

Data from the detailed clinic audit findings (see section 8) demonstrates the current level of compliance with national standards with regard to treatment summaries and care plans, and offers a target for improvement. A previous audit, presented to the MDT in October 2010, showed that compliance with the creation of treatment summaries at the end of treatment and prior to referral to the Aftercare service was poor. This is a priority for improvement within the entire paediatric oncology service and will be addressed with the diagnosis and treatment MDTs.

8.2

Guidelines

The MDT currently use the CCLG guidelines published in 2005 – “Therapy based long-term follow up practice statement to guide ongoing patient care”. No additional guidelines have been developed this year. New national guidance on breast screening and cardiac monitoring is expected soon.

8.3

Development of policies and procedures

Through the work with NHS Improvement (see section 9), the team have written a number of new policies. These can be found on the intranet and include: • • • • • • • • • • • • • • • • •

Patient pathways Allocation to Cox Level of Care SW Aftercare Service Communications List SW Aftercare Service Staff List Design specification – Levels of Care Design specification – Monitoring Design specification – Treatment Summary SOP Aftercare email address Functional model (Organisation of the service) Aftercare Audit Sheet Aftercare MDT New Referral Form Clinic Satisfaction Questionnaire Letters Satisfaction Questionnaire GP Letters Satisfaction Questionnaire SW Aftercare Poster v. Bristol, v. Exeter SW Aftercare Clinic Leaflet v. Bristol, v. Exeter Standard patient letters – new patients aged >16, 16,