In this edition: Newsletter Summer How Primary Care can help earlier diagnosis. Improving communication between Primary & Secondary Care

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1 Newsletter Summer 2016 In this edition: How Primary Care can help earlier diagnosis Improving communication between Primary & Secondary Care A new approach to longer term care

2 How primary care is adapting to the changing landscape of cancer NHS Wales can support patients better if we improve the information flow and better integrate treatment between Primary and Secondary Care. There have been significant changes in the treatment and care of people affected by cancer over the last thirty years. Many more people are surviving some cancers and its treatment. Some people are cured, but many continue to live with the impact of their cancer and its consequences for many years after. These people are under the care of their local GP. Cancer is no longer simply an acute illness treated by clinical staff in hospitals. People living with cancer need to have access to good quality care in their local community often for many years. The Framework for Cancer in Primary Care programme is ultimately here to improve cancer services for patients in Wales. We will do this by supporting Primary Care to be able to provide the cancer services that people want, and need, out in their communities. From early diagnosis, through better integration of treatment between Primary and Secondary care to good support out in the community in the longer term as people live with the consequences of their cancer treatment. In Wales, 120,000 people are currently living with cancer and this number is expected to increase to double by Over 19,000 people a year are diagnosed with cancer in Wales and this figure is rising. It s not all bad news one of the reasons for the increase is that many more people are surviving cancer and living longer after diagnosis. More than half of all people diagnosed with cancer will now survive five years. This changing landscape has an impact on the role of the GP and other community based health care professionals, who need support to respond to this changing situation. Dr Cliff Jones GP Lead Wales More than half of all people diagnosed with cancer will now survive five years. In Wales, 120,000 people are currently living with cancer and this number is expected to double by This changing landscape has an impact on the role of the GP and other community based health care.

3 Framework for Cancer in Primary Care The Macmillan Framework for Cancer in Primary Care programme supports GPs, and other community based health care professionals to diagnose cancer earlier, better integrate treatment between Primary and Secondary care and provide better community based support for people living with cancer. We have appointed GP Leads into each of Wales Health Boards and Velindre NHS Trust, as well as an all Wales GP Lead and they are working with Health Boards on a range of cancer service improvement projects. We also have three regional nurse Leads and one All Wales Nurse Lead working across Wales, as well as a small core team based in the Cancer Network. All projects are designed to be rolled out across Wales if successful. We are creating a Framework of cancer resources, tools and guidance from the range of resources that already exist for Primary Care, and providing one easy point of access. For further information take a look at our web pages on macmillan-framework-for-cancer What patients want Macmillan s Patient Experience Survey shows that Patient feedback about the support they receive is fundamentally good. But there is more to be done, especially to improve the shared processes and information flow between Primary and Secondary Care. Communication between hospital doctors and GPs. You are told to see your GP for advice and treatment, for chemotherapy side effects, yet they have no information on what treatments you are receiving, or given any blood test results. I feel I should have been referred to hospital for a scan more quickly than I was by my GP. It took over two months between him knowing I had a lump in my chest and getting a scan. Isolation. Especially living alone, trying to deal with side effects, often effects from the treatment. No follow up nursing care at all being house bound. Depression, unable to move on in a positive way.

4 Equipping Primary Care with the support and tools they need to improve cancer service The Framework for Cancer in Primary Care is ultimately here to improve cancer services for patients in Wales. It has been designed in response to Macmillan s Patient Experience Survey. Overall patients experience of Welsh healthcare is positive. However, the latest survey indicates that there is scope for improvements in some areas of Primary Care. Primary care is about those services which provide the first point of care for more than 90% of people s contact with the NHS in Wales and General Practice is a core element of Primary Care. Over the next four years the Welsh Government wants to see a change in the way all services work together, with health boards moving their resources towards Primary Care, supported by hospitals and other services, where needed. The new Primary Care service for Wales will help to reshape the NHS, developing and increasing the Primary Care workforce to provide the majority of care close to people s homes, accelerating the transfer of services from the hospital to the community and improving the way people can access services. The Framework for Cancer in Primary Care Programme is designed to equip Primary Care with the support and tools they need to make this happen effectively. Living beyond cancer Around four out of ten people in Wales will be diagnosed with cancer during their lifetime, and the incidence rate is increasing. The number of people surviving cancer has increased. For many people cancer is now a chronic condition which requires a new approach to longer term care. However, the ongoing needs of patients that survive cancer are not always recognised and met to best effect. We are looking at how we can improve the transition for patients from acute treatment to the recovery phase where they are living with a stable disease with support from Primary Care. We are looking at the long term consequences of treatment, how we can embed long term cancer care into everyday practice and how we can help to prevent and identify recurrence. We ll be working with those involved in Treatment Summaries, Cancer Care Reviews, Recovery Packages, Exercise Referral Schemes, HOPE courses, Follow Up protocols and pathways and the Consequences of Cancer Toolkit.

5 Securing earlier diagnosis for patients Detecting cancer earlier could make it more treatable and could save a life and we are exploring how primary care can help patients secure an earlier diagnosis. Most people who are displaying symptoms of cancer visit their GP in the first instance. We know there are great variations in what happens next. Some people s symptoms sound clear alarm bells, resulting in a quick, straightforward process of referral and an early diagnosis. For others it is not such an easy journey. We are working with Primary Care to find out what changes need to be introduced to improve referral pathways and access to diagnostics. And we are working with Secondary Care to make these changes happen. Much work is already being done to improve earlier diagnosis and we are working with those involved with NICE Guidance, public awareness campaigns, risk assessment tools, clinical priority SEAs (significant event audit) and other relevant initiatives. 1 Lung cancer diagnosis Dr Mary Craig is based in Aneurin Bevan UHB and is part of a team working on a project to diagnose lung cancer earlier by creating a direct access route for diagnosis. Lung cancer kills more people in Wales than any other cancer and getting it diagnosed quickly could make it more treatable. We are developing Right Test, First Time guidance for Primary Care to help them refer patients with suspected symptoms using the most direct route. Work includes: Redesigning the Lung Cancer Pathway with the Straight to CT direct access pilot. Developing Right Test, First Time radiology guidance for primary care. 2 Bowel cancer screening process Cwm Taf UHB, Aneurin Bevan UHB and Abertawe Bro Morgannwg UHB have all been working on initiatives to increase bowel screening uptake. Dr Heather Wilkes, Dr Mary Craig and Dr Sriram Rao will be working with their health boards and each other to assess and refine these projects, with a view to developing an All Wales solution. Work includes: Assessing the impact of the bowel cancer screening uptake initiatives. Implementing further roll out if evidence is positive. 3 Cancer Diagnostics Project Dr Sriram Rao is providing Primary Care input into the Cancer Diagnostics project with the team at Cwm Taf UHB. The project is investigating the concept of Denmark s highly successful diagnostic centres. Denmark has a similar set up to NHS Wales and they have achieved phenomenal results since setting up their diagnostic centres in The diagnosis centres have helped to take Denmark from the lower end of the cancer survival league to catching up with the best performing European countries. Dr Heather Wilkes will be working with specialist colleagues in ABM UHB to develop a vague symptom diagnostic service based on the Denmark model. 4 NICE Cancer Referral Guidance Dr Cliff Jones is developing an all Wales unified approach to implementing the NICE Cancer Referral Guidelines, working with Primary Care, Secondary Care and Tumour Site Advisory Groups. Work includes: Identifying with Site Specific Groups where current practice in Wales differs from the NICE guidance. Agreeing a standard guidance with Local Health Board Cancer Lead Clinicians on the information that should be provided to GPs and primary care. Producing a summary document and educational resources for primary care on the implementation of the NICE Cancer Referral Guidance

6 Support through treatment Patient feedback about the support they receive during treatment is fundamentally good. Macmillan s latest Patient Experience Survey in 2013 showed that 89% of patients surveyed rated their care as excellent or good. But there is more to be done, especially to improve the shared processes and information flow between Primary and Secondary Care. We are looking at what needs to happen to ensure GPs receive the relevant information on the patient s treatment plan, and at how GPs can contribute to Multi Disciplinary Teams when appropriate and relevant. We re looking at raising awareness in primary care about oncological emergencies and making sure primary care has clear access to urgent and emergency services. We re also looking at what needs to happen to ensure secondary care communicates effectively with Primary Care about potential complications. We need to ensure that Primary Care remains engaged during the patient s treatment, and be clear on what the role of Primary Care is, or should be, during treatment. We need to address inequalities during treatment and know how Primary Care can help empower patients to alert health professionals about their needs. Again, much work is already being done in this area and we ll be working with those involved in the Enhanced Recovery / Optimisation of Treatment programme, the Acute Oncology Programme, Chemotherapy Alerts, MSCC and Treatment Summaries. 1 Follow up Pathways Dr Hayley Crumpton is working on a Follow Up Pathway review and re-design project with Betsi Cadwaladr UHB. Work includes: Reviewing follow up arrangements for cancer (focusing on a specific tumour site initially) Developing multi-professional guidance on long term consequences, complications and monitoring 2 Cancer service models and pathways Dr Rachel Lee is working on a development and implementation of cancer pathways with Cardiff & Vale UHB, looking developing practical Primary care IT solutions. Work includes: Informing development of cancer site service models (how referrals are received, signposted, access to tests and diagnostics, follow up arrangements) including how advice can be given to GPs, for example advice. Supporting development of IT tools to support GP consultations Developing IT solutions to support National Clinical Priority for Early Diagnosis of Cancer (SEA) work

7 Tertiary care Dr Elise Lang is leading our work on tertiary care and is currently looking at: Treatment summaries Reviewing communication systems between Cancer Specialists and Primary Care with recommendations for quality and efficiency improvements Providing Primary Care support and advice to the education programme of Transforming Cancer Services Cross cutting issues across all priority areas Specific Groups: Looking at younger patients, patients with learning disabilities, patients with mental health issues, older adult patients, patients in prisons and deprivation. Education: Looking at education delivery methods and how best to support different professional groups Out of Hours: Looking at IT and communication and Clinical Guidance Cancer tools and guidelines to support primary care Initial findings from our review of cancer tools and guidelines currently available to support Primary Care are showing that there are a wide range of well received tools already available. However, the utilisation of these existing tools is variable. We are looking more closely at the barriers for uptake and use to assess if it would be beneficial to have a single point of access for all tools and guidelines. Wales Cancer Network s WALES CANCER CONFERENCE Tuesday 8 November 2016 All Nations Centre, Sachville Avenue, Cardiff

8 Team contacts All Wales GP Lead: Dr Clifford Jones GP Lead Aneurin Bevan UHB: Dr Mary Craig GP Lead Abertawe Bro Morgannwg UHB: Dr Heather Wilkes GP Lead Betsi Cadwaladr UHB: Dr Hayley Crumpton GP Lead Cardiff & Vale UHB: Dr Rachel Lee GP Lead Cwm Taf UHB: Dr Sriram Rao GP Lead Hywel Dda UHB: Dr Savita Shanbhag GP Lead Powys HB: post advertised GP Lead Velindre: Dr Elise Lang All Wales Nurse Lead: Sue Llewellyn East Wales Regional Nurse Lead: Juliet Norwood North Wales Regional Nurse Lead: post advertised West Wales Regional Nurse Lead: Hayley Phillips