This workshop was an opportunity for representatives from charities, NHS England and those affected by cancer to discuss quality of life and the need to measure it.
Rebecca Nash- Head of Evidence, Macmillan Cancer Support
Rebecca opened the session by providing some context on quality of life and why it is crucial that we measure it. She mentioned the recent Cancer Strategy, which included a recommendation on the creation of a quality of life metric. This is necessary because although more people are living longer after a cancer diagnosis, unfortunately they are not always living well.
She continued by stating that the challenge is shifting to helping people not just survive cancer, but to live with it as a long term condition, and live well. We are not yet good enough at measuring this, and using information on quality of life to plan services. Therefore, Rebecca concluded we need to come up with a feasible, realistic and relevant way of measuring quality of life.
Claire- Teenage Cancer Trust Patient Representative
Claire shared her experience of being diagnosed with cancer. She mentioned that while she was relieved to know what was wrong, she became anxious, depressed and struggled to care for her young son when her treatment started.
Claire noted that she had more problems with her mental health than physical symptoms during this time. She received support and treatment through the Teenage Cancer Trust during this time, and was supported by a TCT nurse which helped alleviate some of her concerns.
Claire concluded by saying she has found having a good support network and events such as the Teenage Cancer Trust’s “Find Your Sense of Tumour” helpful in getting her life back on track.
Alice- Macmillan Cancer Voice
Alice began by saying she was diagnosed with breast cancer following routine screening. She described herself as normally a healthy, happy person but found that her cancer diagnosis had a huge impact. She had a supportive family, but began to think very negatively and feel depressed – which she described as having more of a negative impact than her cancer. Alice was also made redundant during this period.
Alice described her Macmillan nurse very positively, and said she helped to re-build her confidence and enabled her to get back on track. Alice is now working at Macmillan and thinking positively about the future.
Matt Bassett, Teenage Cancer Trust
Matt began by sharing information about how the Teenage Cancer Trust (TCT) has engaged children and young people living with cancer and cancer professionals, to develop services which meet their ongoing needs. One particularly poignant quote from a Teenage Cancer Trust nurse said that because of the lack of follow up care, she felt that “We save young people with cancer from drowning, but don’t teach them to swim.”
Matt then argued that to address this, the TCT has developed the Way Forward Programme, a 2-day residential course featuring a mix of education, workshops and goal-setting sessions. Following positive feedback during the piloting stage, there will be 6 programmes running across different regions in the UK in 2016. The TCT is also pushing for every young person with cancer to have access to a full teenage and young person specific recovery package by 2020.
Dany Bell- Treatment and Recovery Lead, Macmillan Cancer Support
Dany focused on the use of the Macmillan developed tool, the Holistic Needs Assessment (HNA). This assessment enables people with cancer to raise concerns with a healthcare professional who can then signpost them to support services, and it could be used to support the development of a quality of life measure.
Dany shared the benefits that people with cancer receive from an HNA, such as it enabling patients to seek help for their needs and reassuring their concerns.
Dany then shared that data-which is collected from completed HNAs- shows that around 80% of concerns are physical or emotional, with physical the largest percentage, while emotional and family concerns are having the highest impact on the people’s lives.
Professor Sean Duffy- National Clinical Director for Cancer, NHS England
Sean started by saying that the session had provided him with an epiphany- that the quality of life measure is about a way of life, not just a single metric.
He reflected on his own medical training and noted that he was never taught to consider what was important to patients as a priority. One measure of quality of life will not address this, but instead should be seen as the first step in the right direction, in leading to healthcare professionals asking the right questions. He also noted that the HNA could be a very useful tool in enabling this, and suggested further use of the evidence Dany outlined to inform the development of the quality of life measure.
Sean also noted that this was an opportunity to attach value and currency to quality of life, and raised a few keys points of his own on what the measure should cover. In particular he noted the importance of understanding the needs of carers and families, the need to understand how quality of life is impacted by care at transition points and the importance of clinicians personalising packages for patients.
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