ONE of my memories during my late son’s six week spell in isolation undergoing high-dose chemotherapy with stem cell rescue in 2011 was seeing our oncologist bent over my son’s medical notes on the work top by the phones.
There was a silver haired man with him I didn’t recognise and they were in deep discussion. That man turned out to be one of the unsung heroes of our five years on the front line of children’s medicine with an aggressive cancerous brain tumour – the pharmacist.
I learned that it was him that decided on the best constituents for the TPN feed that was, at that point, keeping my son alive and it was him the doctors rang when the morphine was causing trouble and alternatives needed to be discussed. I don’t even know his name to thank him, but am hoping that someone reading this blog will know who the pharmacist for Piam Brown Ward is at Southampton General and will thank him profoundly from my family.
So, being offered the chance to guest blog for a site thick with pharmacists was one I seized with gratitude. I noticed in one of Johnathan Laird’s blogs that he considers himself a “spotter for the rest of the healthcare professional team”.
I am the Lead Champion for The Brain Tumour Charity’s HeadSmart Campaign which seeks to improve outcomes for children and young people with brain tumours with earlier diagnosis. Before the campaign started the UK was over 50 per cent slower at diagnosing children’s brain tumours, and they are the biggest killer as a disease in the UK 2-24 years (ONS) and represent the same risk to a child as meningitis (Professor David Walker, Nottingham University). In the UK last year, 600 children and young people were diagnosed with a brain tumour – in other words, half of my son’s secondary school.
Our main problem is getting children to the specialist neuro doctors fast enough – typically they are repeatedly seen by GPs or Paediatric Outpatients until they are critically ill. Only a third of GPs will see a child’s brain tumour and they are hard to spot, as the children often do not look that ill, which is why having as many eyes on the look out as possible, to help parents link symptoms and recognise the disease, and to spread awareness of the HeadSmart Campaign is so important.
Pharmacists have extraordinary access to the public in their community role in Primary Care – I nearly always check things with our local pharmacist before going to the GP – and therefore, if pharmacists are aware of the symptoms and the campaign it will be immensely helpful.
HeadSmart needs spotters!
The campaign started in June 2011 as a result of the combined efforts of The Brain Tumour Charity, RCPCH, RCGPs and the Children’s Brain Tumour Research Centre (CBTRC) at the University of Nottingham. The website has information for clinicians and for the public. When I saw the symptoms card I was sickened to realise that had the campaign existed when we were diagnosed and had I been aware, I would have been at our GP’s weeks earlier.
For my son’s cancer, the commonest cancerous type of brain tumour in children, from the start of symptoms to death is an average of 6 weeks and I only got him there in week 6. It is probable that I would have spared him the eleven extra brain operations he had to undergo on top of a huge chemotherapy and radiotherapy regime had I got him there three weeks earlier. My friend’s 10 year old would have been spared a stroke. The medical complications that ensue from late diagnosis of brain tumours are simply horrendous and make management of these patients very difficult.
The campaign has already managed to cut the average diagnosis time by half, but we have another half to go to be in-line with best practice. Social media is frankly a total godsend. So please, please all you tweeting, blogging pharmacists RT the mobile link or pass on text SMART to 81400 which gets it onto your phone and help us save lives and prevent disabilities. Or email email@example.com for a holder with 20 of the little credit sized cards to stand on your counter.
Sacha Langton-Gilks’s son died in august 2012. She is the lead champion of HeadSmart and a health education campaigner
For leaflets, cards and other materials about brain tumour symptoms checkout the HeadSmart website