We all need different things!

We all need different things!

see page I have been privileged to spend the last few days at a hotel, (yes hotel!) for people affected by cancer. A more detailed blog of that experience will follow, but having spent a considerable amount of time with many people facing challenging health issues, I can understand much better  the problems faced by us all, communicating about cancer. My trip also included a talk to a group particularly focused on the twenty to forty year age group, so my experience encompassed a good cross section of ages.

site web Everyone I spoke to had their own unique experience, and in every case, their requirements were different to others. Some wanted more information, others didn’t. Some had decided to continue with a very toxic regime of treatment, others had decided that their body had taken enough punishment, and were taking their last holiday whilst they could. Such a wide variety of experiences. where to buy priligy online But cancer was a common bond, and there were no awkward silences, in fact there was a lot of laughter taking place, which I found extremely powerful!  

we all need something different (2)

This got me thinking, how does a ‘one size fits all approach’ work effectively, if everyone needs something different? The massive positive that came out for me, was that virtually everyone was happy with the treatment they were receiving, which is fantastic! However the major concern was that very few people could find the support they were looking for. Either, in many cases it just doesn’t exist, or frequently it was extremely difficult to find. There appeared to be a very much ‘luck of the draw,’ effect if you found what you required.

I have quite a good personal overview of cancer support around the world, and there is a lot of wonderful work going on, but it does concern me that there seems to be very little coordination going on. It feels very much like everyone is building a road, but no one has thought to invent a map! My concern also is that I rarely see policy and decision makers engaging effectively with the people they are supposed to be helping.

Effective cancer support is not some fluffy world where we all get paid to eat cake and have fun. It is about improving people’s lives, even if it is in a very simple way. Most of the problems that we may encounter, generally lead back to some form of poor communication. My experience has shown me that the more levels of an organisation that are introduced, the worse the communication becomes. What is required is that the decision makers communicate better with the service users.

As our world is changing so quickly, we need to be able to adapt quickly too, and what I can see in the cancer support world is that smaller organisations are able to do that, and provide effective and tangible support. But the larger you are the more difficult it is becoming to offer the correct services that are required. Local knowledge is certainly a very powerful thing, and what is working in London, may not be the answer to issues in Wales.

The care of people affected by cancer, outside the clinical environment and into hopefully survivorship, is becoming a massive issue. It is no longer good enough to point people towards generic booklets, websites and forums and expect them to be able to pick up their lives where they left off. Of course, these things are an improvement on what went before, but I would like to compare what differences I have seen personally during my own journey.

The Centre library

Seven years ago, my own cancer (mantle cell lymphoma) was extremely rare and there were only a few options available for treatment. Most not particularly successful in the longer term. When I was diagnosed I was assigned a Macmillan nurse, given a lot of literature and treatment commenced. Once I left hospital, that is where my support ended. Now there are many different treatment options available for my disease, and although it is still considered incurable, outcomes have consistently improved. If I then compare how we support new patients, very little has changed in that time. We have more modern devices to check out the internet, and in many cases nice new units to make us feel more comfortable during our stay, but we are still handed a lot of literature and left to fend for ourselves afterwards.

More and more money is being raised each year in the name of cancer, obviously a lot of it is being used well as treatments and research improve outcomes, but I am questioning the practical support issue. I certainly see ‘pockets,’ of improvements in this area, but is it what is now required to keep pace with the increasing survivorship figures? I make no apologies for emphasising that people affected by cancer do not have time on their side, and cannot wait for ‘working groups,’ to decide what is required.

My piece talks about how we all require different things, and my experience in recent days has shown me that one thing nearly everyone wants is a listening ear! Not always psychologists or psychiatrists just someone to hear their story. A trip out, a drink in the bar or sitting in the sunshine, mostly simple things are the things that mean the most to people who are seeing their own mortality. Our cancer support and aftercare must quickly start to reflect the improvement in cancer outcomes.

As always the above are my opinions based on my experiences, I would love to hear yours, and please feel free to share them here.

 

The Grove Hotel Bournmouth
 I am very pleased to be an official Support Partner of  The Grove Hotel in Bournemouth, which is the only hotel in the UK specifically for people affected by  cancer.
8 Comments
  1. Thank you Chris for the above update of when you were away last week, I found it very inspiring and interesting. I agree that not enough help is given after your illness, I had Non Hodgkingson Lymphoma the aggressive one. So very lucky for me I was told in the begining they could cure me so that helped me to get through it with the help of Husband and family also meditation helped me. I do feel though that when I was told I was cured, it was a matter we hope never to see you again was good but it did put me in the position of ‘its up to you know Georgine,’ which personally I do not mind but some of my age group would not be able to cope especially if they live on their own. Thank you Chris for your blog it has helped me, hopefully will keep in touch with you.

  2. Hi Georgine. I’m so pleased that your disease was a curable one, and thanks so much for sharing your experience. What happened to you reflects my own and many others experience, and you are absolutely right, people like you and I may be ok with that but I also know many people that are struggling.

    My frustration is that there is a lot of good work going on, but none of it is really joined up. It seems that health organisations are not keen to promote anything that is not approved by themselves, thus allowing people affected by cancer to be lost in ‘red tape.’

    I’m so happy that you are finding the blog helpful, and your experiences are valuable to others. Thanks for sharing, Chris

    • Thank you Chris for allowing to ‘talk’ with you on your blog, this is a new experience for me as it was only last February that I had a laptop I have found it very useful and feel as though I know you and the many friends that I have made over the last few months. best wishes to everyone Georgine x

      • Hi Georgine. This blog is very much a two way process, I facilitate, but it is for everyone. We can all learn from each other and share our experiences.

        I’m so pleased you are enjoying it, and thanks for being such an active member in the community. Best to you, Chris

        • Hello Chris, Lokking at our local paper last night Rhyl Journal (news@rhyljournal.co.uk)page 19 Betis Cadwaldr University Health Board is working in partnership with Macmillan Cancer support to improve cancer care for patients in North Wales. Its a new project funded by Macmillan, this is to support people in North Wales requiring cancer care they will have a key worker to discuss their needs and a care plan that will support them to self manage. This includes access to financial advice, physical activity, information on returning to work and to spot the signs and symptoms of cancer coming back when treatment has ended. How I wish this had been set up when I was a patient, it would have helped me and a lot of other people. Thought you would like to know about this plan, and hope that anyone in the North Wales area will be able to be helped in the future. All good wishes to you Chris and other people who read your blog.x

          • Hi Georgine. That’s great news and something that is worth shouting about. It sounds exactly what is required and a good collaboration, and I am happy for the people of North Wales.

            Thanks for letting me know about this, and am always happy to share this type of working. I hope this proves to be successful and will be rolled out across the country. Chris x

  3. You are for sure right on about the flexibility of big vs small organizations. Do you know about that tweet Orea shared during the super bowl? They had a huddle of creative & lawyers & decision makers on hand to act that quickly.

  4. Absolutely!

Leave a Reply