The Ron Peberdy Cyberknife Trust - an example for us all

I thought I would post this information about the Ron Peberdy Cyberknife Trust, in the hope that it will provide encouragement, and show what can be accomplished when individuals stand up for things and adopt a pro-active approach.
For those who don’t know the Ron Peberdy Trust, was set up to acquire a Cyberknife machine for the South West of England, after Ron Peberdy (who was the first person in the UK to have Cyberknife - all be it in America), decided that others in the South West of England could benefit, as he had done (he had originally been given only weeks to live, but survived for several years after treatment).
Since Ron died, his wife (an ex-nurse), has carried on the work he started, and raised over £2 million on her own for a Cyberknife machine. As a result of her constant campaigning, her local PCT agreed to buy a Cyberknife machine for Derrisford Hospital in Plymouth. In recent months there has been some debate about whether they could afford a building to house the machine. As a result of this, last week, Ron’s wife took a small group of people (with placards in hand), and local press reporters to the Hospital where PCT officials were holding a meeting to discuss this issue. She explained that they were just there to exercise their right to peaceful protest, and guess what? she has now been included in the consultation… A magnificent couple sticking to their guns.

Bumping

Thanks for sharing this - an excellent example of commited action leading to being noticed. I think there are lots of issues with housing this equipment - not least needing lots of electrical power (my hospital has had to build a new electricity substation to cope with new radiotherapy equipment!) - but it’s no excuse for the PCT to not proceed. Good luck to all in Plymouth supporting this charity
Fran

You’re right about the cost Fran, but I think we as a country have the money, it’s just that so much is wasted. For example, within the NHS, there is a huge amount of waste, caused by very poor, ‘just in time’ style management. One thing that bugs me is how hospitals have clinical waste bins in areas where they are not required. The cost of collecting clinical waste in 1990 (when I was involved in Hospitals), was about £260.00 per ton, while the cost of collecting normal waste was £60.00 per ton. Given that the NHS generate millions of tons of rubbish, if they could just devote a little money to organising where their bins should go, they would probably save millions in the long term. Similarly, NHS management order drugs in containers that are too large, so that millions of pounds worth of drugs end up being thrown away (because many drugs have a 24 hour shelf life, and are only given in 5 ml doses).
Then of course there is the expense of the wars we seem to be involved in - but as this is a cancer forum I will hold my tongue on that one.

There is also what economists call the opportunity cost of something - what it will cost NOT to do something. In the case of Cyberknife, the opportunity cost could be higher than the actual costs - expensive surgery with potential complications and longer hospital stays, or chemo requiring expensive drugs to deal with side effects, numerous out patient visits, consultations etc. Also freeing up other equipment - having high dose rads to my spine last year took 20 conventional rads appointments - having the same outcome from Cyberknife recently took 3 sessions, albeit they were longer.

That’s a good point Finty. Another example of what you say is that if the NHS were to use Cyberknife in the same way that it’s being used in the US now, they would save huge sums on chemo.

So agree with you both - am “on the Cyberknife” case with my Onc today - but have already found about about a new radiotherapy treatment called Trilogy that seems to combine the benefits of Cyberknife and Tomotherapy (maybe that’s why those two firms have just merged…) and is available in USA and Europe and seems to treat more tumours with less radiation so might be what I need as I have several tumours. Trying to keep up to date - will so glad to actually see my Onc and get his views and then move thing forward. Am armed with a file of evidence - almost wish I to here the phrse “it’s experimental” again to really able to come forward to counter it and just ask for a second opinion form “expert”.

Waste! - endless money on external consultant looking at systems that patients and users see are problems every day!

Lemongrove - hope you are still feeling “high” and enjoying this phase in life.

Fran

Hi Fran, good luck with your Onc, I almost wish I could be there to witness patient power in action.
Please, please, let us know how it goes.