History in Scotland

History of the Charity in Scotland

by Dorothy Markham, bladder cancer patient, Honorary Chair of Fight Bladder Cancer Scottish Steering Group, and Trustee of Fight Bladder Cancer

My journey started in late 2015 when I had symptoms which I now know are related to bladder cancer.  These were treated with antibiotics, but kept recurring.  In early January 2016, I saw a consultant at the Murrayfield Spire Hospital in Edinburgh who, whilst doing an investigatory operation, did a biopsy which revealed that I had aggressive bladder cancer.  I was referred on to Mr Mariappan and had my bladder removed on 29th April 2016.  Recovery took over six months due to an infection that I got after I had left hospital.

I felt, because of the service I had received, that I should put something back.  I spoke with Mr Mariappan, who put me in contact with Andrew Winterbottom, founder and CEO of Fight Bladder Cancer UK.  Mr Mariappan also felt that there was a need for patient-led support.  He, with others, had set up a patients' support group in 2012 at Maggie's Centre in the Western General Hospital in Edinburgh.  We now attend this group on a regular basis and find the members most supportive.

Since 2018, we have worked hard on raising awareness, not only during Bladder Cancer Awareness Month but throughout the year.  What our work has brought to light is the very low level of awareness, not only amongst the general public but also amongst some medical professionals.

We started volunteering by helping at the BAUN Conference (British Association of Urological Nurses) in Glasgow (in August 2017 and in May 2018, Don and I went to Liverpool to volunteer at the BAUS Conference (British Association of Urological Surgeons) to help with the Fight Bladder Cancer UK information stall.  From that time, we have always made it clear that we act in the role of volunteers but are not representatives of the charity.  

Whilst I was there, I had a discussion with Andrew Winterbottom about the need to try and engage with politicians regarding the importance of raising public awareness (national advertising), to get increased funds for research and to allow for training of some medical professionals who were not urological specialists and staff in general nursing.  Andrew agreed and, as I lived in Scotland and the health service in Scotland is funded by and run under the auspices of the Scottish Parliament, it was agreed that I would take it further.  If our attempts had a positive outcome, he would support us in any way he could, including bringing an arm of the charity to Scotland.  By May 2019, Andrew had become very ill and subsequently died, leaving a tremendous legacy which we are trying to continue.

We have been fortunate to rely on the support of our consultant, Mr Mariappan who has offered professional medical advice, both on a day-to-day basis and when necessary.  He attended meetings at our request to share his advice on medical research and his in-depth knowledge of interventions and statistics relating to bladder cancer in Scotland.  During Bladder Cancer Awareness Month, he persuaded the staff in the Urology Department in the Western General Hospital in Edinburgh to wear Fight Bladder Cancer tee-shirts and got several surgeons from hospitals across Edinburgh and the Lothians to join the walk from Waverley Station to the Scottish Parliament to promote awareness.

Early in 2019, along with Danielle, another bladder cancer survivor, who was diagnosed at 25 and was at the time 6 months pregnant, and with the support of our consultant surgeon, Mr Mariappan, we commenced our approach to ministers and MSP's.  We had mixed responses, but no positive invitations to meetings.  To our surprise, in June 2019, we received an invitation to meet our local MSP, who is Leader of the Lib Dems in Scotland.

In May 2019, Mr Mariappan and I met with Lydia Makaroff, who had taken over from Andrew Winterbottom as CEO of Fight Bladder Cancer UK.  She gave her reassurance that the plan was still to set up an arm of the charity in Scotland, beginning with a steering group.  

We were surprised to receive an invitation to meet with Joe Fitzpatrick, Minister for Public Health, Sport and Wellbeing in October 2019, which we were happy to accept.  Those taking part in the meeting were:  Joe Fitzpatrick MSP; Robert Law (Policy Manager, Cancer Strategy); Mr Param Mariappan (Urological Consultant); Danielle Marr (Patient); Dorothy Markham (Patient); Don McClymont (Carer). 

Mr Fitzpatrick suggested tabling a cross-party motion in the Scottish Parliament during Bladder Cancer Awareness Month in May 2020.  He said that, as a Minister, he was unable to table motions himself but suggested a couple of MSP's who would be able to do this.  We subsequently contacted these MSP's.  One of the MSP's did not respond.  However, we were able to speak to the other MSP, Jenny Gilruth, with a view to getting her to table a motion.  Unfortunately, things stalled for some time.  Then, due to an unexpected promotion to a ministerial post, she too was unable to help.  At her suggestion, we contacted members of the Health and Sport Committee.  To our surprise, we received offers from MSP's of all major political parties to either table or support a motion.  Miles Briggs MSP offered to table a motion and several of the other MSP's said that they would support his motion. 

During 2020, a partnership with the GMB Union facilitated awareness messaging about bladder cancer to their 600,000 members.). The GMB Union also published an awareness poster in highly credible occupational health, Hazards magazine – distributed to all UK Health and Safety Officers.