Wigtownshire Women and Cancer: A new Governance International Co-Production Star Initiative powered by Courage, Compassion and Tea Parties!

Introduction

Objectives

This new co-production initiative in Dumfries & Galloway aims at improving the well-being of people affected by cancer - in particular, post-treatment. It is based on co-design, co-delivery and co assessment with people affected by cancer.

The key aims of the project were:

• to fill the gaps regarding effective information sharing about existing services available, particularly post treatment;
• to signpost people to available services;
• to design effective community interventions, based on what matters to people;
• to design and implement effective community support, based on evidence locally;
• to develop a platform for people affected by cancer to use their voice of experience and bring about positive change in services;
• to develop an increased awareness of opportunities and a sense of confidence in people affected by cancer.

Leadership and change management

In my role as Chair of the Board of the Dumfries and Galloway Health and Social Care Partnership I was committed to developing community resilience and developing community leadership particularly by women affected by serious illness. 

During the Co-Production Star Action Learning Programme, which Governance International ran for the Dumfries and Galloway Integration Joint Board, it became clear that we had the potential to mobilise women living with cancer to do something valuable. The training provided  a systematic framework and tools to build on initial conversations and develop a co-production approach. The Co-Production Labs in 2018, which were part of this Learning Programme, provided me with the opportunity to start the process, acting as a volunteer and ‘expert by experience’, working with women affected by cancer who were also ‘experts by experience’, together with health professionals, in order to build individual and community resilience and empower people affected by cancer.

With the support of Governance International and the Health and Social Care Partnership, an initial plan was developed to engage with women affected by cancer. This explored what the main issues are regarding self-management of a long term health condition like cancer and how to identify ways of meeting needs using local resources within our community.

The West is the remotest part of our rural region of Dumfries & Galloway, so  we invited local women to attend an evening meeting to talk about their experiences and suggestions for change. Based on local knowledge, and with help and expertise of the HCSP Communications Team, a Press Release was prepared and published by the local newspaper, which is read widely, inviting women to attend the meeting. Social media is also used extensively, as is evident from the number of local Facebook sites, so it made sense to publish in social media, as well. We also invited local cancer support groups and the Cancer Information Centre. Ten women attended this first meeting in autumn 2018.

From there, we decided to hold an Afternoon Tea Party in February 2019, in a small local hotel.  With the help of the Partnership’s Communications Team, the event was well advertised and a short video was made on the day, highlighting all the important aspects of the Tea Party and this became circulated widely via social media.  The event was a great success - a wealth of information was gathered which would help to plan a way forward. Nearly 30 women signed up to take part and move things forward . One of the major lessons learned was that we needed more social media presence.

The PositiviTea Parties are proving to be a really successful way to engage with people, share information, gather information and reduce isolation and loneliness.  Each Tea Party has a theme (e.g ‘Superhero Fundraising’), as well as an NHS Health and Wellbeing guest speaker. They are held on a bi-monthly basis. We encourage people to write their comments on little paper leaves and tie them to our PositiviTea Tree – they really like this! 

The major points emerging from each Tea Party seem to be consistent:

• More accessible information is needed regarding what is available to help people cope.
• Isolation and loneliness are common experiences, people express a need to talk to their peers.
• There is a lack of self management services for people affected by Lymphedema.
• There is a need for:
  – signposting to other services;
  – respite;
  – buddy to go out with;
  – awareness raising regarding ways to manage condition, e.g exercise;
  – access to transport.

More recently, the Big Fashion Show has been another community event which has been hugely successful and popular. We know from anecdotal evidence that people are responding because this is a local initiative, which concentrates on the needs of the local community and, importantly, because funds raised will be spent to improve the lives of our local community. 350 people attended the Big Fashion Show in October 2019, 15 volunteers affected by cancer took part as catwalk models (4 men, 11 women)  a large number of businesses supported the event by donating raffle and auction prizes, and 7 local clothes retailers were willing to showcase their stock. The models had their makeup and hair done free by local beauticians and hairstylists. A free bus was donated by a local bus company to transport people from the other end of the district and a number of people volunteered for a variety of tasks on the night.  All the organizing was done on a voluntary basis by WWAC. On the night £6,700 was raised, which has been earmarked for initiatives in the local community.  

In another initiative, Wigtownshire Women and Cancer purchased books written for her children by a woman who had cancer. Children can be profoundly affected by a parent’s cancer experience and may have unanswered questions – these books help them to understand and to cope. WWC are donating the books to local schools – one pupil’s copy and one teacher’s copy per school.

Members of the closed Facebook page are starting to request specific information, e.g. one lady asked if anyone knew how to ensure that medical professionals checked if someone had a Lymphedema arm. This is a common condition a lot of women have after breast cancer treatment – it means that an arm cannot be used to take blood pressure or used for interventions using a needle. This concern has resulted in WWAC approaching the NHS to suggest a campaign to raise awareness about this condition.

Everything we do is based on engaging with our community, listening, including them, communicating effectively and honestly, implementing (where we can) their suggestions and, above all, having fun while we are doing it.  We are clear that no one “leads” with this approach - however, everyone owns it and we try not to take ourselves too seriously. We are not restricted by targets, timelines and expected outcomes, which is the simple beauty behind this way of working. However, it requires compassion, respect, openness, honesty, courage, tenacity and an ability to work with all kinds of people.

Obstacles

As yet, we are unable to influence transport issues, which is a limitation on our ability to reach all those people who would like to participate.

We have also been unable to progress our proposal to work with the NHS to enhance Lymphedema services - but this is due to difficulties within the NHS.

Funds could have been an obstacle but we have had unexpected support locally from fundraisers, often very creative - e.g. a local woman raised funds from a sponsored head shave - we donated her hair to the Little Princess Trust, which make wigs for children. We have also had local raffle donations and cake baking for our Tea Parties and £6,700 was raised from the Fashion Show.

Finding a place to meet was problematic, due to room hire costs, until a local Care At Home private provider learned of our work and offered us her premises on an ongoing basis, free of charge.

There is one committee member from the neighbouring location which is 25 miles away and we want to be more inclusive, so we are exploring ways to meet virtually, including Skype – and also considering the most convenient day and time for our meetings. We may also rotate the location (so, for example, we might travel to her location three times per year).

Outcomes

The value of the activities to date of Wigtownshire Women and Cancer can be gauged by some of the comments we have received:

“It was so good to talk to someone about what I’ve been through, who understands - and to have a laugh, too” (A lady who attended one of the Tea Parties).

“I was very nervous - but having my make-up done, showcasing clothes and getting that response from the audience made me feel great and I was glad I did it!” (One of the Big Fashion Show models).

On this last point, one very valuable outcome has been the inspiration which we have all taken from the courage of the eleven women and men who volunteered to model the clothes on the catwalk of the Big Fashion Show, showing how they were learning to live with their condition.

One vital piece of feedback from the first Tea Party was the poor access to respite. WWAC therefore decided to look at creative ways of providing protected therapeutic space ‘on a shoestring’, using existing resources in our community. The Stranraer Campus of Dumfries and Galloway College has an excellent Beauty Department and Salon, where the students learn hands-on. A first meeting was held between WWAC and the College to discuss a proposal to deliver half-day Pamper Sessions for people affected by cancer on a monthly basis, for 8 people per session. The costs were calculated to be £20 per person which WWAC would fund and an agreement was reached to progress things.  The Pamper Sessions will commence before Christmas and we have decided to start the sessions by inviting the Fashion Show models to be the first to take advantage of this.

Looking to the future, Wigtownshire Women and Cancer will be offering training in Transcendental Meditation ™, funded partly from the proceeds of a concert at the Edinburgh Fringe Festival by Donovan, the famous 60’s singer/songwriter. He made this donation specifically for TM training after learning about the work of WWAC. Furthermore, case studies will be developed by the College and the TM teachers - we will use these in our activities and share them as learning. An Introductory Talk is due to take place in November which will be open to the whole community. The course is expected to commence in early 2020, starting with 10 participants. The TM Teacher will be delivering the course over a four day period and WWAC will provide accommodation for her.

One of the most unexpected outcomes has been the support from someone as famous as Donovan – I never expected, when I sent the first email explaining our work, that it would have such an outcome!

Performance indicators

Wigtownshire Women and Cancer has been active since February 2018. With no start up budget, we have engaged with over 200 people at our PositiviTea Parties.

Moreover, 195 members on our closed Facebook page have shared and posted a variety of information on a daily basis.

We have negotiated a working arrangement with the local College to deliver Pamper Sessions to 40 people  affected by cancer.

We have planned and co-produced with local businesses The Big Fashion Show, which  was been hugely successful - 350 people bought tickets,  15 models (11 women and 4 men) volunteered  their time as models (all of whom have been affected by the disease), a number of people volunteered to carry out tasks such as selling raffle tickets, conducting the auction, and helping people to their seats on the night. The event raised £6,700 in one night.  The Fashion Show raised the profile of Wigtownshire Women and Cancer in an extremely positive way - this was due to the huge amount of planning , attention to detail, commitment, support from the local community and local businesses and sheer determination to celebrate people affected by this disease in a powerful way.

Costs and savings

There have been no costs to the NHS or public services directly. However there has been staff time and expertise supporting the initiative at the initial stages, e.g. in relation to communications, guest speakers, and a local project called MPower, which covered the costs of the first Tea party.

In addition, WWAC initiatives are posted and shared widely on the Health and Social Care Facebook sites. All the women involved  are unpaid volunteers, all affected by a cancer diagnosis, who are dedicating a large amount of time to holding committee meetings, planning and delivering activities and keeping the Facebook page updated.

Some of our partners have made some investments in order to help us - e.g. the Beauty Department of the Stranraer Campus of Dumfries and Galloway College has invested in training their senior Beauty Lecturer in ‘Therapeutic Touch for Cancer Patients’, so that people can have the best pamper experience possible, along with the variety of therapeutic interventions the students themselves will be delivering.

More generally, Dumfries and Galloway College is very supportive and has invited WWAC to be its named charity for fundraising this year. It has lso agreed to gather evidence from the participants regarding their experience, as well as the learning experience of the students.

There has been overhwhelming support from local businesses, particularly those who wanted to support WWAC by donating raffle and auction prizes for the Fashion Show (on top of the donations from the local community).  A variety of local retailers agreed to showcase their clothes at the Fashion Show.

Lessons learnt and next steps

WWAC will be working towards becoming a registered charity in the New Year, which will improve governance and ensure quality.

We intend to disseminate our learning, not only within the Health and Social Care Partnership but also more widely in Scotland and internationally. For example, I will speak about our co-production initiative at an event hosted by The ALLIANCE and Governance International during Scottish Co-Production Week 2019.

Further information

Find us on Facebook: Wigtownshire Women and Cancer or e-mail wwac19@hotmail.com