A Piece of the Jigsaw Puzzle

I recently got the chance to speak at another conference. This time for the PM Society’s conference – “What does an informed patient mean for healthcare.” – at The Royal Society of Medicine in London. The conference combined a series of presentations and case studies from experts passionate about patient involvement in healthcare, highlighting how important it is to engage patients from the very beginning of the healthcare process and showing how collaboration with patients is key to improving healthcare outcomes. It is an important part of the jigsaw puzzle.

I was the keynote speaker and also took part in a panel discussion about how best to design information that meets patients’ needs.


Partnership with Shepherd Neame


Kent-based brewer and operator Shepherd Neame has named us as their inaugural Charity of the Year, as part of the relaunch of their Sheps Giving charitable arm of the business.

Shepherd Neame have already supported us at some of our other charity events and their team was instrumental in helping the Mighty Bar run smoothly at our summer festival but this partnership takes their support to a whole new level and we are excited to be able to work directly with members of their team to raise funds and awareness. Aside from the local connections, the company has lost two members of its own staff to brain tumours and several other employees have had family members affected.

Funds have already been raised via a charity golf day and the Faversham 10K run but there are lots more plans in the pipeline, including a Christmas Sale and a comedy night – something that would have been right up Silas’s street – so watch this space….

Test Match Special

If there is one thing Silas loved more than anything, it was cricket. He spent hours out in the garden in the summer with his younger brother playing out five day test matches. They would hold the score in their heads, know exactly who had scored how many runs, know how many overs each bowler had bowled and how many wickets they had taken in each innings. Amazingly enough, we never had a broken window.

In August, his father had the opportunity of chatting to Jonathan Agnew on the iconic Test Match Special. They talked about cancer, brain tumours, fund raising, cricket and A Mighty Boy.


A very special moment for all The Pullen Boys both big and small.

Ben also took the “behind-the-scenes” opportunity to bandana a number of England cricketers including Ian Botham for the www.itisanobrainer.com site.


The Mighty Boy Festival

What a weekend!

The weather was kind to us in the run up to the festival and on the day itself. The bands all turned up on time (unlike the punters)  and performed their hearts out. So many great songs and wonderful voices belting out across the festival village – not to mention the sheer energy and madcap dancing later in the day.

The crowd lined up to learn the Haka – and thighs were red and faces flushed. Glitter filled the air and decorated faces and beards. James Heming (Heart FM) worked his magic compering in the heat, camera in hand. The Gin cocktails flowed at the Ginge Bar and pints were pulled at The Mighty Bar. Pizza, burgers, tacos and smoothies went down a treat and helped to soak up all the booze. Robots and fire jugglers entertained the crowd and the tunes banged out of the Sound Crumpet tent until late in the evening.

Auction frenzy took hold, the flames fed by the energetic David Selves, who lost his voice driving prices up.

A fantastic day and evening only made possible by the sheer hard work of a handful of volunteers and over £50,000 raised for the charity. People are already asking when we are going to do it again….!!!

Marathon Swim

Thank you to all the boys of Park House at Tonbridge School who raised a whopping £4000 for us this weekend with a 24-hour swimathon.

There were at least two boys in the pool at any one time and a total of 3684 lengths were swum by the 60 odd boys involved (some working harder than others) – this equates to a mammoth 92km swum. A great achievement from everyone involved but especially Rufus Pullen and Mr Sampson, neither of whom got much sleep I imagine!

Making A Difference

This week I was a keynote speaker at the AMRC/ABPI Patients First: Pioneering Partnerships Conference. Courtesy of my husband telling me to always say YES to everything!

The conference aimed to highlight the many benefits in establishing, managing and growing partnerships that aim to benefit patients sooner. Partnerships that range between medical charities and industry as well as patients themselves. I spoke about the importance of working together and the unique knowledge that patients and their carers have about the realities of living with their disease. I highlighted how The Brain Tumour Charity calls people like me an “expert by experience” and how they believe they can learn from us, as well as the importance of using data and the willingness of patients to share their data to bring benefits to other patients sooner. It was strange to be standing up on the stage in front of an auditorium of people talking about Silas and wanting to make a difference to families in the future but the response was incredibly positive and I hope that I left people with a clear reminder of why they do what they do – so that there will be fewer stories like mine. It is only by being bold and having our voices heard that patients/carers can begin to make a difference for other patients and advances in technology can only help speed this up.

I heard some inspiring people speak and it is clear that changes are happening – small steps but steps in the right direction – not so much as a trojan horse but several “trojan mice” – to quote one of the speakers – slowly infiltrating the healthcare system.

The video link for my speech is here


Silas’s story

Silas was a happy, sporty, bright 10 year old when he was diagnosed with a high grade glioma in August 2012. He had two days of headaches before he suddenly struggled to speak and was rushed to hospital in Kent. An emergency MRI showed a tumour the size of a tennis ball in his left parietal hemisphere. He underwent emergency surgery the next day at Kings Hospital, London where the surgeons removed 80% of the tumour.

They left the rest as they were worried its removal would paralyse his right hand side. When we found out the diagnosis a few days later and realised how aggressive the tumour was (we were told he had 12-18 months to live) we knew we needed to find a surgeon prepared to risk removing the rest of the tumour. We went to AlderHey Hospital in Liverpool for a second surgery a few weeks later and the surgeon – Connor Malucci – successfully removed the rest of the tumour (which had grown massively in the intervening weeks and had damaged a lot of the feeling in Silas’s right hand).

Silas then underwent a gruelling course of radiotherapy and chemotherapy (although to our disbelief and disappointment the tumour had started to grow back from the first operation before the radiotherapy started). This was followed by a rush to get him accepted onto a new immunotherapy trial at Great Ormond Street Hospital – which used the patients’ own dendritic cells and tumour to prime their immune system into recognising the tumour cells and attacking them – Silas was patient No.1 on the trial. Six months of immunotherapy and more of chemotherapy followed. Silas’s MRIs showed the remaining small bit of tumour was shrinking which was great but our hope was shattered when a scan in the middle of September 2013 showed the tumour was re-growing and had spread into his right hemisphere. We tried a different chemo regime but nothing stopped the tumour and Silas lost his battle just after Christmas 2013. His final few weeks were spent at home with his family thanks to the fantastic Outreach and Community Nursing teams. He was 11 years and 9 months old.

Silas fought his battle with inspirational courage and humour and never complained. He continued to smile and make people happy and shower them with his unconditional love right to the end. He also continued to play sport which he loved, particularly cricket (despite his right hand not working so well and having to relearn his bowling technique) and we will never forget him scoring his first half century in the summer of 2013, whilst on chemo. He was still playing up until a month before he died.