Support Group closures

A Jo’s survey in 2008 overwhelmingly showed that 98% women with cervical cancer wanted more person to person support and that their preferred choice of services were a helpline and local support groups. I was brought on to grow the existing already popular services – the Ask the Expert service and Online Forum - and to develop a new range that would provide better support the 220,000 women affected by cervical abnormalities and the 3,000 diagnosed with cervical cancer every year in the UK.  This was a huge commitment for the charity as when I joined I increased its staff numbers from two to three!

With such a small team, we recruited and trained the most incredible group of volunteers to help us and together we launched these chosen services in 2010. The aim? To reach, support and inform as many women and their loved ones as possible, enabling women to make informed health choices and reduce isolation and fear. We also knew from Jo’s own experience that connecting women to one another was of powerful benefit to patients.

Over the last eight and a half years our Helpline has been a fantastic success with calls increasing by at least 30% every year since its launch. Whilst the Helpline is predominantly used by those affected by cervical abnormalities (naturally a larger group of women), I have been thrilled to see calls from those affected by cervical cancer slowly growing over time showing that we are now reaching this often unsupported group of women. We continue to recruit and engage a fantastic and inspiring group of volunteers who are absolutely committed to helping us provide support women in a way we could not do on our own.

Not satisfied with the success of the helpline, we launched our Callback service, now in its fourth year, allowing us to offer further support particularly to women affected by cervical cancer.

Sadly however the success of the support groups, a service specifically for women living with and beyond a cervical cancer diagnosis, has not experienced such heights. While we know many women have hugely benefitted from our support groups, across the time they have been running, we have seen poor or declining attendance with some groups having no attendees. This is due to a number of factors such as not being able to make the time or day or no longer feeling like they needed the support. The commitment that was required from our incredible volunteers was extremely high and we will remain grateful to them for giving so much. Four years ago, we took the decision to not open any further new groups and concentrate on strengthening our existing groups. Sadly groups continued to close or not acquire attendees which was demoralising for group leaders. We have tried a number of ways to increase numbers including through advertising and large investment of staff time to support volunteers. Unfortunately we have had to face the difficult conclusion that fewer and fewer women want to access support in this way.

The decision to close the support groups entirely was not taken lightly and was done with very heavy hearts.

Our Support Services Manager, Debbie, has previously been a dedicated volunteer group leader and so personally understood the challenges of running a support group. Not being content to let the service just fade, she set out to look at different models with which we might better support women living with and beyond cervical cancer.

After talking to other charities to gain an understanding of what had worked for them, we looked at combining our successful Let’s Meet annual event and the great work that the volunteers had accomplished in the support groups. With this the concept of the Mini Meet was conceived. This new service will enable us to offer services regionally providing guest speakers and a safe and supportive space for women to meet. We hope, in time, to recruit volunteers to work alongside us.

We held our pilot Mini Meet in Birmingham last year and were delighted with the outcome. We are now replicating the event in Glasgow (19 May 2018) and Brighton (14 July 2018) and already have a very healthy amount of sign ups for both.

Jo’s Cervical Cancer Trust has a bold vision. We want to see cervical cancer become a disease of the past and, until that time, ensure that those affected receive the very best care and support. We want to support as many women as possible but as a small charity it is vital that both our staff time and financial resources are put where we can make an impact. Much of our money is raised by incredible fundraisers and we have a responsibility to do as much as we can with the amount they raise for us. We feel that Mini Meets honour the commitment and faith that our community puts in us.

Within this last year, we have done more to support, inform and improve the lives of women affected by cervical cancer than ever before. This includes the largest ever report into the long term consequences of cervical cancer driving forward the key recommendations such as the introduction of tariffs for those who are living with those consequences and the inclusion of less common cancers to the Quality of Life Dashboard. Our Comms team have been busy promoting our work and services, ensuring that we have patient representation in press and media. We are also close to launching a pilot Hospital Liaison Service to provide immediate support to patients and their loved ones within the hospital setting. We are shouting the loudest we ever have in order to represent patients.

The Support Services team and wider charity are absolutely committed to continuing to reach and support even more women living with and beyond a cervical cancer diagnosis. This work is ongoing and carried out by a very passionate group of people.

If you have any concerns or questions about the closure of the support groups, I would be happy to hear from you so please do contact me at [email protected]