Improving the Cancer Journey in Powys Programme
What does the programme do?
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The Improving the Cancer Journey (ICJ) in Powys programme follows a community-based model of person-centred care. The first ICJ programme was launched in Glasgow in 2014 and has since been adapted for the unique needs of different communities around the UK. The ICJ programme aims to connect the people of Powys with existing services and improve access to cancer support, including prehabilitation and rehabilitation services, and work within the community to establish a network of cancer confident organisations. ICJ Powys Phase 1 was initiated in January 2020. CLICK HERE for more information about Phase 1. ICJ Powys Phase 2 began in April 2024. The programme exists to help people living with cancer (PLWC) aged 18 and over. PLWC are people who may be: - newly diagnosed with cancer, - undergoing cancer treatment, - recovering from cancer treatment, - living with a treatable but not curable cancer, - coming to terms with life after cancer, - living with a palliative cancer diagnosis, - unpaid carers or family members who are supporting someone else who is living with cancer. The programme is working to ensure all PLWC are offered the opportunity to have a supportive conversation with an appropriate person, such as a key worker, about the things that matter most to them. The programme aims to achieve this through ‘what matters’ conversations that focus on what is most important to the PLWC. The Macmillan Cancer Support holistic needs assessment can be used to guide the conversation and produce a unique, person-centred care plan. The care plan outlines how to access local support that’s relevant to the specific needs identified, and helps people living with cancer to: - access appropriate support services, - manage their own health, care, and wellbeing, - identify self-care methods or strategies. The programme captures the 'patient voice’, listening to the views of people living with cancer in Powys to identify what works well and what could be improved. A key aspect of this work is the ICJ Patient and Carer Forum. Wrap-around prehabilitation and rehabilitation services are proven to optimise the health and wellbeing of people living with cancer. By developing third sector provision of physical activity, dietary, and psychological support services, the programme aims to contribute to: - an enhanced quality of life, - increased treatment options, - reduced side effects, - enhanced recovery, - reduced overall cost of treatment.
​​​​Why is the programme needed?​​​
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Cancer is classed as one of the Big 4 diseases within the Powys Health and Care strategy and the PTHB Integrated Plan. In Powys, around one thousand people are newly diagnosed with cancer every year. Continual improvements to cancer treatment mean that many people are living well with cancer for longer. While this is great news, extended treatment pathways can increase the practical, physical and emotional strain on people living with cancer, and the people who care for them. Powys Teaching Health Board does not provide cancer services in the same way as other health boards. Because there is no district general hospital in Powys, patients need to travel out of the county to receive their cancer treatment. People living with cancer in Powys face distinct challenges: - the majority of cancer care is delivered outside Powys, - inpatient hospice care is accessed outside Powys, - remote rural communities, - limited public transport options, - some residents have to travel long distances for treatment, - pockets of digital isolation (no internet access). Fortunately, Powys has a vibrant community of voluntary and third sector organisations. The programme works closely with these community resources to connect people with existing services that can help. The ICJ programme's work would not be possible without the invaluable support of these key delivery partners: - PAVO (Powys Association of Voluntary Organisations) - The Bracken Trust Cancer Support Centre - Credu Being diagnosed with cancer can have a significant financial impact. People living with cancer may need to stop working, or work less. It can also mean spending more money on things like travel costs or hospital parking. Depending on the individual situation, financial support may be available. However, many people may be unaware of the benefits or support that they're entitled to. By working in partnership with Powys County Council, the programme is able to link people living with cancer to the Money Advice Team. More information about benefits and financial support can be found in the Macmillan financial guides. The Powys County Council Adult Social Services Information and Support Team (ASSIST) team aims to help people stay independent, safe and well so they can live the lives they want to. This includes people who are frail, have disabilities or mental health issues, as well as the people who care for them. The ASSIST team are able to refer people living with cancer into the ICJ programme, with their consent. By working together in this way, the programme aims to ensure that everyone living with cancer in Powys gets the best help and support to live their life as fully as they can, by providing them with the practical, physical, emotional, spiritual, & social support they want or need, to enable them to improve their outcomes & achieve what matters most to them.
​​​​​​​​Listening to the voices of patients and carers​​
​​​​​​The voices of people with lived experience of cancer support in Powys are fundamental to the ICJ programme. To understand the experience of living with cancer in Powys, the programme wishes to hear from as many people as possible. Some people may wish to share their cancer story in detail. The process of sharing can be therapeutic, and hearing about people’s lived experiences can be helpful to other people living with cancer too. Some people may wish to help others by joining the ICJ Patient and Carer Forum. The forum aims to provide a platform for people living in Powys to work together to ensure that the insights of people living with cancer, and those who support them, are heard. The forum serves as a bridge between the ICJ partners – Powys Teaching Health Board, Powys County Council, and Macmillan Cancer Support – and people living with cancer in Powys. The main role of the forum is to: - advocate for patient-centred care, - share positive cancer support experiences, - identify potential improvements to cancer support, - promote cancer information and support in Powys, - enhance collaboration between people living with cancer and Macmillan professionals, - build a community and establish an informal cancer support network. The forum is always keen to welcome new members. To find out more, please contact: icjpowys@powys.gov.uk ​​