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Jade Goody's legacy, 10 years on

Posted on: Wednesday, 20th March 2019 by

The ‘Jade Goody effect’ undoubtedly increased the understanding of cervical cancer and screening but, ten years on, it’s clear we still have a long way to go. 

I joined Jo’s Cervical Cancer Trust just after Jade’s diagnosis in 2008 and saw first-hand the enormous impact that her story had, including her tragic death at such a young age. We saw a huge rise in women seeking support and wanting more information about cervical cancer many of whom were completely unaware of what the disease is or that it can often be prevented. There was an extraordinary rise in women attending cervical screening with an extra 400,000 booking their test across the UK. As a result, we saw many cancers being prevented as well as cancers detected at an earlier stage, less invasive treatments and better outcomes. 

What has changed since then?

Over the last ten years, it feels as if there has been a very big shift in terms of why uptake of cervical screening has fallen year on year. During my first few years at Jo’s, those that wanted to attend screening were able to do so with no problem at all. The biggest issues were around understanding what cervical cancer is, what screening is for, or why they are invited to have it. 

Since then, we have carried out a wide range of research into different groups such as those aged 25-29, those over 50 and people from Black and Minority Ethnic communities (BAME). This research has revealed a number of cultural, literary and social barriers that can affect screening uptake. Some groups believe the misconception that cervical screening is a test for cancer or that it is not relevant to their particular demographic. Other reasons for not attending screening include factors such as feelings of embarrassment or fear, worrying about the results or more specific and complex reasons such as physical and psychological factors for women with disabilities or survivors of sexual violence. 

Improving access to cervical screening

The charity has worked incredibly hard over the past few years to raise awareness of cervical cancer, its causes and how it can be prevented. While there is still a lot of progress to be made in increasing understanding, I honestly feel that knowledge is much higher now compared to ten years ago, which is great progress. 

However, one major issue is that of accessibility. Women are telling us that it is getting harder and harder to book an appointment. Over the last few years, we have seen a 73% fall in opportunities to be screened at sexual health services, whilst time and again we hear that it is incredibly difficult to book a test at a GP surgery. In some cases, women are often being told it will be many weeks until a slot becomes available. Some are offered no appointment at all. The lack of accessibility can have long-term negative effects, as the person trying to book a test may just give up, lose confidence in the programme and never try again. 

It is vital that we see access improved in the future. While we know it can be hard to get time off work to access the test, if it were made possible to have the test at a GP surgery near work or to have more appointments available outside of the working week, then this could encourage more women to book the test. In addition, bringing in innovations such as HPV self-sampling, which can be done at home could be a game-changer in increasing screening uptake across the UK. It is already being offered in other countries around the world and the results show that significant numbers of women who delayed (some of whom had delayed for over ten years) or had never taken up the test chose to do so. We also know that for certain groups, such as those who have suffered sexual violence, being able to do a self-sampling test is vitally important. For some, the way that the test is currently being offered is too traumatic for them to even consider, so this would provide an opportunity for them to come back into the programme. 

What's next?

Jo’s Cervical Cancer Trust has been calling for a major overhaul as well as investment in the way cervical screening is offered. I am pleased that Professor Sir Mike Richards is currently undertaking a root and branch review which aims to assess the current screening programmes and recommend how they should be organised, developed and improved. I look forward to his recommendations later in the year. It is essential that change happens. As screening coverage continues to fall, we are seeing more women diagnosed in some UK countries. We are talking about a disease that we passionately believe could one day be eliminated, but not without the changes required. At the moment the UK is falling behind other countries where we were once the leader.

Jade undeniably saved lives. It is saddening and concerning that the impact she had is being forgotten and cervical screening attendance is lower than ever. We all must ensure that her life and legacy is not forgotten. 

Categories: cervical screening