Treatment Record Summary – User Guide
Contents
1. No Contact for re referral or any queries In hours Out of hours Yours sincerely Clinician XXXXXXXX CC Insert patient name NCSI Treatment Summary User Guide V7 2012 NCSI Treatment Summary User Guide V7 2012 Treatment Summary Example Dear Dr Jones Appendix 3 Re John Smith 3 Park Road Doncaster DN4 DEF DoB 10 10 10 NHS No 123456 Your patient has now completed their initial treatment for cancer and a summary of their diagnosis treatment and ongoing management plan are outlined below The patient has a copy of this summary Diagnosis Date of Diagnosis Colorectal Cancer 10 02 10 Summary of Treatment and relevant dates Surgery Resection March 10 and reversal of stoma Sept 10 Radiotherapy May June 2010 Possible treatment toxicities and or late effects Diarrhoea following pelvic radiotherapy Alert Symptoms that require referral back to specialist team Diarrhoea for more than 2 weeks not relieved by loperamide codeine Blood or mucus per rectum Further change in bowel function Abdominal pain that persists for longer than 4 weeks and does not respond to simple analgesia Secondary Care Ongoing Management Plan tests appointments etc Next OP Review Jan 2011 CEA next due in Jan 2011 then annually until 2015 CT scan abdo and chest next due Sept 2011 Colonoscopy repeat next due Sept 2015 Organ Staging Dukes T2 Local Distant NO Treatment Aim Curative Advise entry ont2. To understand whether treatment intended is curative palliative or for symptom relief as this will help GPs to understand aims of treatment and to refer back to secondary care or other services appropriately Also supports GPs to anticipate future care needs E Possible treatment toxicities and or Patients undergoing some cancer treatments may be more E late effects of treatment prone to toxicity and late effects of treatment such as osteoporosis or heart disease Inclusion of risks in this summary triggers the entering of the patient onto routine GP surveillance QOF related Signs and symptoms addressed earlier may improve quality of life and treatment outcomes from side effects or late consequences of treatment Inclusion of suggested or preferred treatment associated with toxicities and late effects can be initiated without referral back to the specialist Raises awareness of common late effects and reduces delays to further investigation and treatment This may also impact on survival rates as symptoms are picked up sooner Advise entry onto palliative or Inclusion of the patient on the palliative care register supportive care register ensures that the out of hours OOH teams are made aware that a patient is nearing end of life and that increased input maybe required to support patient and carers Register is shared with all relevant OOH doctors ambulance service community district nursing teams Macmillan support t
3. required e g acute breathlessness requiring a pleural tap as opposed to the expected side effects of treatment that can be managed by the GP or community team Patients will have a better understanding about symptoms that they should be concerned about and should prompt contact with the specialist team Confirms contact details for the patient or GP for advice on care or treatment or to arrange urgent review The out of hours contact could be a ward the acute oncology team or relevant on call team Include any planned outpatient reviews and surveillance tests dates or approximated timescales This provides a framework for GPs If indicated further tests can be scheduled prior to the further outpatient visits The Patient will be better informed about follow up plans and what to expect It is reassuring to patients and carers to see the planned care surveillance and support they then know what to expect and when Helps avoid duplication of referral if the patient visits the GP between appointments and is unsure of who is involved in their care Particularly useful in respect of social care referrals and whether the patient is known to other agencies Can help to reinforce the importance of attending appointments with other agencies Useful to also include details related to third sector support and centres such as a Maggie s centre if available To provide clarity on the expectation of GPs in respect of the patients on going care and h
4. the patient to take with them when leaving the clinic Depending on local practice there are three presentation styles you may wish to consider the standard form template appendix 1 a letter template appendix 2 or an electronic solution appendix 4 The electronic solution template is available on the Cancer Information Systems CIS for Somerset Cancer Register and InfoFlex CIMS Ltd This system enables the template to be populated from the patient s electronic record and therefore reduces the amount of input required from the clinician at the end of treatment For further information or to develop this idea contact your CIS provider Treatment Summary templates The Treatment Summary template has been revised since testing to remove the less useful information and simplify it e Appendix 1 provides the simplified TS template with updated GP READ codes e Appendix 2 provides the same information in a letter template e Appendix 3 provides a completed example template with prompt notes e Appendix 4 provides an example screen shot from the Somerset Cancer Register e Appendix 5 provides a user guide with rational for data inclusion and an indication of the essential and desirable fields required should local re design of the form be required Recommended practice The following standards support the ongoing use of the TS e All sections of the TS should be completed and a copy given to the patient and sent the GP promptly at the e
5. Summary in Appendix 5 e Provide a laminated prompt list in clinic for clinicians to use as they dictate e Create template letter with headings to enable easier typing e Always use the TS in place of a clinic letter at the end of initial treatment and reference completion of the TS in the clinic notes and place copy in the case notes e Provide GP READ codes attached to whichever TS format used or issue to GP practices separately e Test for 10 patients and then review the process and amend before implementation e Attach the template or prompt list to the front of case notes prior to the patient being seen in clinic e Pre fill the entries where possible electronically or by hand such as for common signs and symptoms of recurrence and treatment toxicities e For complex tumour groups consider a separate list of signs and symptoms and key contacts may be required e Ifthe TS template is set up on a local electronic database add common side effects signs and symptoms of recurrence and medications as drop down menus e Where possible use the TS available on Infoflex CIMS or Somerset Cancer Register as these will self populate much of the detail e Share testing and experience with other colleagues to encourage wider testing and spread of the use of the TS Summary of evaluation following testing The TS has been positively received in both primary and secondary care 80 of GPs found the Summary useful or very useful Over 50 felt it w
6. WE ARE NHS DH Department MACMILLAN of Health CANCER SUPPORT NHS Improvement National Cancer Survivorship Initiative NCSI Working in Partnership NCSI Treatment Summary User guide and template Background GPs reported a multiplicity of information from secondary care but the lack of a simple summary of the patients cancer diagnosis treatment and ongoing management plan Clinic letters failed to provide sufficient information to enable patients to be fully managed in the community resulting in unnecessary delays and referrals back to secondary care In 2009 a group of Macmillan GPs identified information that would be helpful at the end of initial treatment To capture this information a Treatment Summary TS template was designed The TS is for use at the end of primary treatment for cancer e g at the end of surgery and or adjuvant therapy with details added to the TS related to endocrine treatment or other maintenance treatment The TS may also be used when there is a referral from secondary care to palliative care for symptom control rather than the cancer treatment The information will be helpful to the GP in supporting the patient and carers The TS may also be useful at other points in the journey e g following treatment for recurrence The TS replaces the standard clinic letter and provides the patient and their GP with the details of the care and treatment received and any support they may require in the future and therefore
7. d 9EB5 Benefits counselling 6743 Benefits counselling 6743 Cancer information offered Cancer information offered 677H Cancer diagnosis discussed XalpL Cancer diagnosis discussed 8CLO Unaware of prognosis XaVzE Carer aware of diagnosis XaVzA Miscellaneous Miscellaneous On GSF palliative care framework On GSF Palliative Care Framework 8CM1 GP OOH service notified Xaltp GP OOH service notified me Carers details 9180 Carer details 9180 NCSI Treatment Summary User Guide V7 2012 Appendix 2 Template in letter format Date XXXXXXXX Dear Dr Enter GP name Xxxx Re patients name Your patient has now completed their initial treatment for cancer and a summary of their diagnosis treatment and ongoing management plan are outlined below The patient has a copy of this summary Diagnosis Date of diagnosis Staging Summary of treatment and relevant dates Treatment Aim Possible treatment toxicities and or late effects Alert symptoms that require referral back to specialist team Secondary Care Ongoing Management Plan tests appointments Required GP actions e g Medication osteoporosis cardiac screening Summary of information given to the patient and or their carer Additional information including issues related to lifestyle and support needs Advise entry onto primary care palliative or supportive care register Yes No DS1500 application completed Yes No N A Prescription charge exemption arranged yes or
8. eam social care hospice as appropriate Patients can then receive the appropriate support information and benefits Key contact in hours for advice and To ensure the patient GPs and primary care team know re access who and when to contact should they have queries or concerns The contact should be able to triage enquiries and initiate action DS 1500 status benefit that patient If no DS 1500 completed the GP will be prompted to can claim at the last 6 months of arrange life Prescription exemption If no prescription exemption completed the GP will be prompted to arrange Exemption charges are waived for any cancer treatment an entitlement for all patients with a diagnosis of cancer Applies to any drug that the cancer patient may require Alert symptoms that require referral This should include only those symptoms where immediate back to specialist team Contact for re referrals or queries in and out of hours Secondary Care On going Management plan Referrals to other services Required GP actions including medication etc Cancer Care Register Summary of information provided to patient on diagnosis and prognosis Additional Information to the patients and or their carer READ Codes Include a copy of the READ codes with the Treatment Summary You may chose to send local GP practices a laminated copy of the READ Codes in advance to save sending each time re referral to secondary care specialist is
9. ent has been given information about how their condition will progress Additional information relating to lifestyle and support needs There are no specific support needs F eee Save Save and Print Reset values Last Updated By Stella Davies Last Updated On 26 03 2012 14 28 00 NCSI Treatment Summary v5 2012 Appendix 4 Screen Shot from Somerset Cancer Register Appendix 5 Rationale for data fields and inclusion on the Treatment Summary Field Rationale for inclusion Essential or Desirable Diagnosis Important for the GP and patient to know type of cancer and location of cancer and the likely source of secondary recurrence Organ Staging local or distant Information about staging and spread provides insight into spread Grade prognosis and risk of recurrence Date of Diagnosis To understand length of time patient has known diagnosis E and time period between referral from primary care and diagnosis to identify where delays can be minimised in future Important data to monitor treatment outcomes in relation to survivorship Helps plan date of GP Cancer Care Review Summary of Treatment and relevant dates To understand the range and order of modality treatment understand the likely sequence of treatment effects Essential to inform future treatment choice if further disease occurs Important information for patients wishing to take out insurance or a mortgage Treatment Aim
10. hospital HRG codes and used to identify diagnosis tests and treatments Both are complex systems and require manual input Inclusion of the READ codes in the TS prompts and encourages GPs to accurately code patients This helps improve patient safety in terms of surveillance disease tracking and audit Note Codes may differ depending on GP IT system in use Disclaimer We have made every effort to ensure that the information we have provided is accurate and will help you to introduce the Treatment Summary into the care and support that you provide The National Cancer Survivorship Initiative NCSI cannot accept liability for from any inaccuracy in this information or third party information such as information on websites to which we link Thanks This booklet has been written revised and edited by the NCSI Treatment Summary steering group which includes Macmillan Cancer Support General Practitioner Advisors We acknowledge and thank NHS Improvement the National Leads and Test Sites for their work in developing and testing the Treatment Summary and to Tribal Consulting Limited for evaluating the work of the test sites We also thank the Somerset Cancer Register and Infoflex CIMS for their work in transforming this concept into an electronic solution
11. improves communications The TS has been tested in secondary care communities across several tumour groups using a variety of methodologies In 2010 approximately 250 summaries were issued to GPs over a 6 month period Its use was evaluated via surveys telephone interviews and face to face meetings with over 50 clinicians An updated version of the TS based on this learning has been developed for wider use There are no copyright issues so feel free to adapt the format to suit your local community or IT systems Audience The TS is aimed at e General Practitioners and primary care professionals e The patient to enable greater understanding and clarity of their condition and provide a Summary to share with others of their choice e g for travel insurance purposes e Secondary care clinicians particularly in A amp E and for unplanned emergency admissions e Hospices day centres and care homes NCSI Treatment Summary User Guide V7 2012 Presentation style and format During testing the majority of test sites used the template and boxes in the format provided others converted to a letter template to improve ease of use by secretarial staff Some sites created electronic versions using an access database with a series of drop down menus to aid the speed of completion One site transmitted the TS electronically to the GP others printed and posted One consultant used the TS in place of all the routine clinic letters and provided a copy for
12. l need to return for a 3 monthly checkup Please ensure that you send the patient a reminder one month before her check up is due _ Alert symptoms that require referral back to specialist team _jifthe patient experience difficulty in breathing please refer back to consultant We are keeping him open on the list so he can be referred direct without the need for an appointment Advise entry onto primary care palliative or supportive care register Please select vi DS1500 application completed No i Prescription Charge exemption arranged ves x Contacts for re referrals or queries In hours 01234 567890 CNS Team v Out of hours Please select v Referrals made to other services V AHP _ Menopause Endocrine support _ Sexual dysfunction therapist _ Benefits Advice Service Occupational Therapist M Social Worker _ Bowel or bladder Incontinence service _ Other C Speech and language therapist Clinical Nurse Specialist C Physical activity CI Stoma service LI Complementary Therapist Ll Physiotherapy L Support Group L Dietician Prosthetics service C Vocational Rehabilitation work C District Nurse Y Psychologist Wig service Required GP actions in addition to GP Cancer Care Review e g ongoing medication osteoporosis and cardiac screening Medication will need to be reviewed monthly j Summary of information given to the patient about their cancer and future progress The pati
13. lignant neoplasm of female breast B34 Female Malignant Neoplasia Malignant neoplasm of male breast B35 Diagnosis B22z Male Malignant Neoplasia Histology Staging Grade gt Histology Abnormal Histology Abnormal Tumour grade Tumour staging Dukes Gleason tumour stage Gleason grading of prostate Ca Recurrent tumour Recurrence of tumour Local Tumour Spread Mets from 1 Metastatic NOS Histology Staging Grade 4K14 gt gt gt a Sjo BB13 Treatment Treatment 5149 Palliative Radiotherapy 5149 Radiotherapy tumour palliation Curative Radiotherapy XalpH Radiotherapy Chemotherapy x71bL Chemotherapy Radiotherapy Xa851 Treatment Aim Curative procedure Curative treatment Palliative procedure Palliative treatment Treatment toxicities late effects Osteoporotic Xa1TO At risk of osteoporosis Osteoporosis Osteoporosis Infection Ongoing Management Plan Ongoing Management Plan Follow up arranged lt 1yr Follow up arranged 8HB Follow up arranged gt 1yr No FU No follow up arranged 8HA NCSI Treatment Summary User Guide V7 2012 7M371 8BAD Treatment Aim 8BJO 8BJ1 1409 N330 O O O og D NO O h O D D Q V D lt jeas aa Referrals made to other services o E S e M o O n e E Referral for specialist opinion Xalst E Cancer Care Review Xalyc Cancer Care Review 8BAV i monom e ee r m DS1500 form claim XaCDx DS1500 complete
14. nd of primary treatment for cancer e TS updates should also be generated at key points e g following recurrence further treatment or a transition to end of life care e The TS should not replace a detailed care plan based on an assessment of need e All members of the MDT involved in the patients care should have the opportunity to contribute to the completion of the TS e The GP should enter the details onto their data base and use the information to inform the Cancer Care Review http www ncsi org uk what we are doing assessment care planning cancer care review NCSI Treatment Summary User Guide V7 2012 e GPs should ensure the patient is entered onto appropriate monitoring screening programme and review surveillance systems if required e g osteoporosis Hints and tips to consider for implementation The following hints and tips have been provided by the NHS Improvement test sites e Engage administrative staff early in the change process and encourage them to suggest the best way to implement locally e Ensure that the medical records department are familiar with the Treatment Summary and are aware of the appropriate place in the notes for filing this will avoid them being removed from the patient s records inappropriately e lf the TS template is redesigned to fit with other hospital documents beware of removing data inclusions fields as they may be useful to others See rationale for data fields and inclusion on the Treatment
15. o primary care palliative or supportive care register No DS1500 application completed No Prescription Charge exemption arranged Yes Contacts for re referrals or queries In Hours 01234 567890 CNS team Out of hours 01234 987654 oncology ward Referrals made to other services Community Dietician Benefits Advice Service Required GP actions e g ongoing medication osteoporosis and cardiac screening Please review dose of XXXXX in two months if symptoms of XXXX resolved reduce to 4mg daily Cancer Care Review within 3 months Summary of information to the patient and or their carer Patient and wife informed that the cancer in his colon was non invasive and that he has received surgery and radiotherapy with curative intent He is aware however that it may recur in the future and we have briefly discussed the further treatment available should this be required He is fully aware of the symptoms of recurrence and what to do should any occur Additional information relating to lifestyle and support needs Patient advised to quit smoking and referred to smoking cessation clinic Patient keen to join local colorectal support group and plans to attend next session in November Completing Clinician Charles Goodenough Date 30 10 10 Signature 4 SZ Somerset Cancer Register v13 2 9 Windows Internet Explorer DER NHS Treatment Summary 0H Department MACMILLAN REKK aii National Cancer Survivorship Initiati
16. ould make a difference to the way they managed patients and 90 wanted its use to continue The majority of hospital clinicians recognised the value of summarising what could be months of treatment and holistic care into a concise summary One clinician felt that it made us document and communicate better another thought it to be excellent Patients found it useful to share with family carers if they were admitted in an emergency to another hospital or hospice and when applying for travel insurance as the TS kept all the necessary information in one place NCSI Treatment Summary User Guide V7 2012 Further information and reports available on the National Cancer Survivorship Initiative website at http www ncsi org uk what we are doing assessment care planning treatment summary or contact Dr Rosie Loftus GP Macmillan Lead rloftus macmillan org uk or Noeline Young nyoung macmillan nhs uk NCSI Treatment Summary User Guide V7 2012 Treatment Summary Appendix 1 Insert GP Contact Details Insert Trust Logo Address Dear Dr X Re Add in patient name address date of birth and record number Your patient has now completed their initial treatment for cancer and a summary of their diagnosis treatment and ongoing management plan are outlined below The patient has a copy of this summary Diagnosis Date of Diagnosis Organ Staging Local Distant Summary of Treatment and relevant dates Treatment Aim Possible treatment t
17. ow they can support them Also provides prompts e g to add patients to routine screening programmes to help mitigate late effects of treatment Patients will be more empowered to approach GPs if they require further advice and support Can give specific request to GPs to ensure continuity of care and avoid ambiguity Provides GPs with guidance and advice on which drugs if any need stopping and when and whether any adjusting between follow up appointments or following discharge May avoid inappropriate prescriptions overdose or misuse Particularly important if the GP is going to continue to prescribe long term i e endocrine manipulation Patients will also Know what to expect from GP Inclusion of this reminder helps ensure the patient is entered onto the register and that they are formally reviewed by the GP within 6 months of diagnosis This is a requirement for the Quality Outcome Framework within all general practices Sharing information on what has been discussed with the patient and their carer and any written information provided improves the quality and openness of the discussion that the GP can have with the patient To confirm which lifestyle information and advice has been given or signposted and details of local support groups and psychosocial support complementary therapies returning to work advice etc It is the responsibility of the GPs to assign the appropriate codes and enter on their systems GP READ codes are similar to
18. oxicities and or late effects Advise entry onto primary care palliative or supportive care register Yes No DS 1500 application completed Yes No Prescription Charge exemption arranged Yes No Alert Symptoms that require referral back to specialist team Contacts for re referrals or queries In Hours Out of hours Other service referrals made delete or add District Nurse Secondary Care Ongoing Management Plan tests appointments etc AHP Social Worker Dietician Clinical Nurse Specialist Psychologist Benefits Advice Service Other Required GP actions in addition to GP Cancer Care Review e g ongoing medication osteoporosis and cardiac screening Summary of information given to the patient about their cancer and future progress Additional information including issues relating to lifestyle and support needs Completing Clinician Signature Date NCSI Treatment Summary User Guide V7 2012 GP READ CODES FOR COMMON CANCERS For GP Use only Other codes available if required Note System codes are case sensitive so always ensure codes are transcribed exactly as below System 1 5 digit All other systems Version 3 codes five byte codes Diagnosis Lung Malignant Tumour XaOKG Malignant neoplasm of bronchus or lung Carcinoma of Prostate Malignant neoplasm of prostate B46 Malignant tumour of rectum Malignant neoplasm of Rectum B141 Bowel Intestine Malignant neoplasm of Colon B13 Large Bowel Ma
19. ve NCSI Working in Partnership of Health DEMOGRAPHICS NHS Number 041 759 8667 Hospital No Name LUXTON Amelia Miss DoB 02 02 1960 52 Gender Female in Diagnosis Lung Cancer Malignant Date of Diagnosis 16 01 2012 Organ Staging Treatment Aim Please select g neoplasm of main bronchus Left Final Integrated Staging T2aN1M1a Summary of Treatment and relevant dates Local Distant Yes Bone Mets Certain atme e Anti Cancer Drug Type Chemotherapy Start Date 26 01 2012 Adjuvant e Brain Mets Certain Drugs Drug Regimen GEMCARBO End Date 31 01 2012 e Liver Mets Certain 7 F z e Lung Mets Certain ENS PAE e Other Mets stomach Surgery Main Procedure Incision of Lung Date of Surgery Curative po O O End Date Surgery Main Procedure Excision of Lung Sleeve Resection Date of Surgery Uncertain Sub Procedure Diagnostic Endoscopic Exam of Lower 15 02 2012 Respiratory Tract Sub Procedure Other Op on Bronchus Possible treatment consequences and or late effects etals ates intent At risk of Cardiovascular disease _ Peripheral neuropathy _ Spinal Cord Compression Osteoporosis Lymphoedema May experience Hormonal affects _ Changes in cognitive function C Faecal urgency frequency or incontinence v Fatigue V Anxiety or depression _ Urinary urgency frequency incontinence poor stream Insomnia C Changes in sexual function or infertility Comments This patient wil
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