Wrapping Services Around The Patients – Listening and Learning

The Cancer Alliance is committed to ensuring that its work is shaped by those who have experience of what it means to live with and beyond a cancer diagnosis. Its work is underpinned by the belief that the experience of patients and others affected by cancer is as important as the effectiveness and safety of clinical care and treatment. The Alliance’s first ever delivery plan stated:

“The overall aim of the West Yorkshire and Harrogate Cancer Alliance is to improve the lives of all those affected by cancer across our area. We believe the best way to achieve this is to ensure that cancer care, treatment and support is wrapped around each individual patient. By working in partnership and breaking down organisational boundaries, we will transform the outcomes and experience for local people facing a cancer diagnosis, living with and beyond cancer. We believe all our work should be shaped by those who have experience of what it means to live with and beyond a cancer diagnosis.”

There are a range of different ways to get involved in the work of the Cancer Alliance and its partners, ranging from involvement in its community/patient panel; to sharing individual patient/carer stories to inspire other patients and health professionals; to working alongside health and care professions in the co-design and transformation of cancer care and services, and more.

Below is a summary of some of our work...................

    Healthy Communities - Partnership With Yorkshire Cancer Community

    West Yorkshire & Harrogate Cancer Alliance and the Yorkshire Cancer Community have announced plans to join forces on a project that will raise awareness of cancer signs and symptoms; encourage more people to take up their invitations to screening, and encourage behaviours that will reduce the occurrence of preventable cancers.

    The two organisations will work together to create a dynamic network of people in local communities who will be trained and supported to share information and key messages by talking to their families, friends, neighbours,wider personal and professional networks about issues relating to cancer.

    This will build on existing links and support which already exist across West Yorkshire and Harrogate, including Yorkshire Cancer Community’s extensive network of more than 700 people affected by cancer, carers and health professionals, which has been built up over the past three years.

    It is hoped that the project will also capture the interest of people who may not necessarily have had personal or family experience of cancer, but who in their daily lives come into contact with members of the public and are ideally placed to share information. This could potentially include hairdressers and beauty therapists; staff working on public transport;retail workers, and staff working in emergency services.

    This work will also support the objectives of both the Cancer Alliance and Yorkshire Cancer Community to reach those people who currently experience barriers to cancer information, support and services, including people with a learning disability;teenagers and young adults with cancer, and black and minority ethnic (BAMEcommunities).

    West Yorkshire and Harrogate Cancer Alliance is one of 21 Alliances around the country, bringing together NHS organisations, local authorities, voluntary and community organisations, charities, patient and carer groups to improve care and support for those affected by cancer.

    The Yorkshire Cancer Community (formerly the Yorkshire Cancer Patient Forum) is an independent patient-led charity, based in Wakefield, providing information, support and advice for people affected by cancer and those who support cancer patients across the Yorkshire area.

    The details of the project are currently under discussionand the project is expected to be launched next month (April).

    Yorkshire Cancer Community chair Sara Williamson, a breast cancer patient said: “I am really excited by this development and look forwardto working in partnership with West Yorkshire & Harrogate Cancer Alliance.

    “It’s a key Cancer Alliance role to try and encourage behaviours that reduce the occurrence of preventable cancers; to promote screening and raise awareness of the signs and symptoms of cancer. It’s vital that we as patients play our part in sharing information and key messages, and helping others to do the same. As a patient-led charity, we hope we can bring a unique perspective to this project.”

    Professor Sean Duffy, WYH Cancer Alliance Lead, said:

    “We’re really excited to be working on this project with the Yorkshire Cancer Community. The sooner a cancer is diagnosed, the greater the chance of it being treatable. Even better if we can promote behaviours that might prevent cancer in the first place. To do this, we need to reach out as far as we can into all our communities across West Yorkshire and Harrogate. Informed conversations are the key to success and this partnership will really get people talking.

    Community/Patient Panel

    The Cancer Alliance commissions local partner Healthwatch Wakefield to deliver a community/patient panel, the diversity of which seeks to be reflective of the make-up of local communities across West Yorkshire and Harrogate in terms of where people live; the type(s) of cancer they are experiencing or have experienced (tumour site); the communities they come from and their personal backgrounds and circumstances.

    Click here to view a short film and learn more about the work of the panel during the 12 months since it was set up, and the different ways in which panel members choose to get involved in influencing and shaping the transformation of cancer services.

    Effective Communications To Support Engagement

    The Cancer Alliance uses a range of different communications channels to support the engagement of those affected by cancer, and also the wider community. A dedicated Communications and Engagement Lead – with post funding from Macmillan Cancer Support – was appointed by the Alliance in July 2017.

    • Cancer Alliance website
    • Our bi-monthly bulletin for stakeholders – Alliance Matters
    • Social media - on Facebook @WYHCancerAlliance and on Twitter @profseanduffy
    • The publication of our monthly Board agenda and minutes
    • Contributing news and content to the communications channels of the WYH Health and Care Partnership, including the weekly e-bulletin sent to all health and social care partners
    • Staff and patient newsletters - the Alliance works with and through locally-based local authority, NHS Trust and Clinical Commissioning Group communications and engagement officers to develop a broader perspective and reach more people, including staff
    • Leaflet, posters, banners and digital TV screens in primary/secondary care patient areas For example:
      • the Alliance provided a range of these materials to GP practices across the Alliance area to support the recent Be Clear On Cancer campaign to raise awareness of respiratory symptoms that could be an early sign of cancer. These were supported by regional radio advertising .
      • pull up banners, posters, leaflets and surgery television screens were used to promote the start of targeted lung health checks in GP practices across Bradford and Wakefield as part of the Alliance’s Tackling Lung Cancer campaign.
      • Posters are used to support a pilot project being run on a specific urology ward by Leeds Teaching Hospitals NHS Trust, with support from the Alliance,providing real-time feedback to staff and patients on levels of satisfaction with inpatient care.

    Patient Experience Expert Advisory Group

    The Cancer Alliance has established a Patient Experience Expert Advisory Group to identify, encourage and share with local teams approaches which champion and support the use of patient experience outcomes to drive service improvements, alongside the use of clinical data/outcomes.

    The group acts in an expert advisory role regarding patient experience and engagement to all the Cancer Alliance project groups and workstreams. The group:

    • explores opportunities to embed the principle of placing patients at the heart of improvement activities, such as learning from the ‘Breast Cancer Now’ service pledge
    • provides expertise and a steer on the elements of organisation infrastructure and practice that contribute to a good patient experience
    • works with the wider Alliance to help develop and test novel approaches to seeing patient experience on a par with clinical outcomes

    The group is chaired by Professor Marina Bloj, Professor of Visual Perception at Bradford University. Membership includes NHS Trust and Clinical Commissioning Group patient engagement/experience professionals; representatives of charities Breast Cancer Now and Macmillan Cancer Support; lead cancer nurses and members of the community/patient panel.

    Cancer Alliance Board Lay Members

    There has been a patient voice on the Cancer Alliance Board since it was established in 2016. Two new Lay Members – Mike Frazer from Bradford and Paul Vose from Wakefield - were appointed in September 2018. Both have personal experience of being affected by cancer,and bring with them strong community connections – including Paul’s role as Vice Chair of the Yorkshire Cancer Community (formerly Yorkshire Patient Forum) and Mike‘s involvement with primary care Patient Participation Groups in Bradford. More information is available here.

    Active Patient Involvement In Service Transformation and Development

    Cancer patients are actively involved in the work o fthe Alliance in delivering service improvements and helping local hospitals and other organisations to improve their performance and therefore the experience of patients.

    For example, prostate cancer patient Richard and Sara,who has been treated for breast cancer and is Chair of the Yorkshire Cancer Community, were invited to share their experiences at the launch of the West Yorkshire and Harrogate cancer improvement collaborative.

    Both Richard and Sara are now working with the Chief Executives of our hospital Trusts to identify how their experiences can be used by cancer teams in the individual organisations to improve outcomes and experience for patients. More specifically,the Chief Executive of Calderdale and Huddersfield NHS Foundation Trust has initiated local service improvement work on the prostate cancer pathway and is planning to invite Richard to act as a ‘critical friend’ of the service.

    Click here to hear what Richard has to say – a short film from the cancer collaborative event.

    Click here to hear what Sarah has to say – another short film from the event.

    Click here to hear from our Trust Chief Executives – including Owen Williams, CEO of Calderdale and Huddersfield NHSTrust, talking about their personal commitment to cancer improvement.

    Clickhere to learn more about the WYH Cancer Improvement Collaborative

    Engaging With Wider Communities

    The Cancer Alliance also recognises the importance of engaging with wider communities, as well as those who have already been affected by cancer.

    The uptake of bowel, breast and cervical screening, for example,varies significantly across the West Yorkshire and Harrogate area, and a new Healthy Communities work programme seeks to address this through a public health/ health inequalities approach – including engagement and campaigns.

    Alliance Clinical Lead Professor Sean Duffy is undertaking a series of awareness sessions with Primary Care Patient Participation Groups across the area, providing information about local issues and barriers to screening, and encouraging PPG members to get involved and spread the word at local practice level about the importance of screening and early diagnosis.

    This has included sessions in Bradford, Greater Huddersfield and a forthcoming discussion at a local women's health network.

    Learning Disabilities Health Champions Project

    The Cancer Alliance is involved in work by the Health and Care Partnership to ensure that the voice of people with learning disabilities is core to its priority workstreams. This involves identifying,training and supporting a group of health champions with learning disabilities across West Yorkshire and Harrogate.

    The health champions will then help the Alliance to talk to other people with learning disabilities so they can share their views and experiences, enable others to learn from them and lead to improvements in services and experience of care. The contract for this work has been awarded to Bradford Talking Media (BTM) and planning is already underway. As part of this work, our Clinical Lead Professor Sean Duffy will be attending one of BTM’s regular group meetings in November to talk about the work of the Alliance, how to get involved and the wider health champions work.

    Sharing Experience Through Patient Stories

    Many people affected by cancer are keen to share their personal stories and experiences to help others.

    The Cancer Alliance website has a number of patient stories. Click here to view them.

    Similarly, sharing information about the services and support available can help in signposting patients and carers to the rights ervices. The Alliances uses social media such as Facebook and Twitter to share information often provided by colleagues in local places.

    Engagement With National Charities

    Working with charities – as well as those individual patients who give up their time and support – is an effective way to ensure that the work of the Alliance remains grounded and provides a touchstone for priority setting and activity.They can also help signpost to new partnerships and opportunities for information exchange.

    National charities spend much of their time campaigning and lobbying on behalf of their members with policy makers and influencers. It’s essential that their views are informed by what is happening on the ground, that they are aware of where innovation and development is taking place, and where the challenges exist.

    In turn, the pivotal role of Cancer Alliances in ensuring the delivery of national cancer priorities and the commitment in WYH to wrapping cancer services around our patients means patient experience and voice must be at the heart of their work.

    For many people affected by cancer, it is the relevant charity that provides them with the help and support they need, and acts as a guide through their cancer journey alongside health and care professionals.

    The Cancer Alliance is actively engaged with a number of national and regional charities, including:

    • Breast Cancer Now - the Cancer Alliance has been shortlisted, in conjunction with BCN, for a 2020 Health Services Journal Partnership Award. Read more here
    • Cancer 52
    • Pancreatic Cancer UK
    • Prostate Cancer UK - the Cancer Alliance is currently working with PCUK, patients and carers on the provision of better information at the point of diagnosis and referral into secondary care.
    • Roy Castle Lung Cancer Foundation
    • Target Ovarian Cancer
    • Teenage Cancer Trust
    • Yorkshire Cancer Research