Cancer support using social media

This week has been an absolutely incredibly busy and fulfilling time. I have spent my week, communicating with people around the world. I have spoken to patients, charities, complementary therapists, cancer service providers, media people, volunteers and NHS professionals.

Most of this is happening because organisations are beginning to use this blog as a resource in the work that they do, helping people affected by cancer. I have always been aware of the many varying needs of patients and families, but am now starting to discover, how many organisations there are out there, all helping people with different aspects of their care.

The beauty of the internet, is that we are now finding each other, and working together, slowly forming a worldwide community.What I am also seeing is that because this is a relatively new way of working, no one has really worked out any official set of rules, so that even Governments and regulatory bodies are not exactly sure how they can control things. The down side of that is that there is a lot of unwelcome stuff out there for people to access. However, the very massive positive for me, is that because there is very little red tape, we can actually cut away a lot of the unnecessary barriers that are put up by vast public organisations, and be available quickly to the people who need us most.

I would like to clarify, that I am not looking to turn our organisations into a ‘ wild west ‘ with no rules or regulations at all. Of course, we all need protection, and the knowledge that those who are in a position of trust, deserve to be there, and that we are all safe, and receiving the care we deserve. However, it seems that over the years, we have turned too far the other way, and are making it very difficult for people to help.

This blog is independent, and not sponsored at all. I work with numerous charities around the world, and they very kindly signpost their supporters to it. Anyone can find it online, with a simple search, so it is there for all to see. As my regular readers are aware, I started this blog, as my experience as a long term patient showed me, that there were very few blogs that told the ‘ warts and all story ‘ of life through the eyes of an incurable cancer patient, in language that everyone can understand.

People need to know what to expect, good or bad, so I decided to write about it. What content, style, frequency? None of this I knew. I was aware however, that the readers would decide my fate. If they didn’t like the content, they wouldn’t read it!! Thankfully, that isn’t the case, and as time has gone on, and the readers have interacted, I have managed to develop appropriate and stimulating content.
I feel that this blog and a lot of other fantastic resources that are available now, would not exist if they had to go through some of the usual channels. Patient surveys, steering groups, health and safety, risk assessment, content control, feedback, who is going to run it, what are the emotional effects on that person, will they need support too? Phew, I’m worn out typing it, let alone going through the process!

This sort of work, doesn’t wait for an appointment to see someone, before it can happen. It is on their computer immediately. Have you tried getting to see that person who can make a decision? If you get past the ‘out of office’ there are the eternal meetings, and finally annual leave! By that time, you have forgotten what you wanted in the first place.

My position is unique. I don’t have a career, job title, salary or pension to protect, so can be truly unbiased in what I talk about. I have nothing to gain personally from my work, except satisfaction, which is a more than ample reward. The fact that there are so many readers around the world is truly wonderful, and for your regular following and support, I thank you. Your encouragement has helped me drive this forward with enthusiasm.

As I mentioned earlier in this post, I have heard from some incredible people, with some really inspiring stories. I would love to be able to share some of your experiences, as I know that our expanding readership would benefit from them. Some of you have mentioned that you would like to write a piece, which I will gladly post.Please feel free to leave a comment here or Facebook/Twitter

#workingtogetheragainstcancer

The Grove Hotel Bournemouth

I am an official support partner of the Grove Hotel in Bournemouth. The only hotel in the UK specifically for people affected by cancer and other life limiting conditions. 

 

2 Comments

  1. Hi! Just loged in I think this comment is the best yet, you are a king to this art and we love the way you rule. I share you views that knowledge is the key to all ills and question all knowledge to get the truth as you personnel understand it. Then keep seeking the Answer.
    Bev

  2. Hi Bev! Welcome back, and many thanks for your lovely comments.Knowledge certainly is power, but like experience, doesn’t really have a true value, until it is shared. I take a great joy from the sharing that goes on through this blog. It really is beginning to build a community, and it is great to have someone with your vast health experience, on board with me.
    As always your comments are truly valued and TU x

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