This week has involved a great variety of work, and I have had a lot of communication around one subject, cancer support. I have spent many hours on social media, and have attended several meetings, either in a clinical setting or a social environment, talking to people who are involved in providing it. I also include myself in that, as support provided via the social media platforms is proving to be so important, the way we are now living our lives.
As my internet work increases, I find more and more people around the world, doing such wonderful things, all working under the umbrella of cancer support. It feels like an army! However, when I talk to patients, which I do frequently, either in my work, or when I am being treated myself, I can’t help sensing that people are still not aware of what is available to them, or can’t find what they are looking for, which I find very frustrating.
Only yesterday, a friend casually remarked, how wherever he went, he bumped into a cancer charity advertisement. It was a flip comment, but I understood what he meant. It is very difficult to avoid coming into contact with something cancer related, usually a collecting box! But in many respects, that is a good thing isn’t it? We are making people aware of cancer, and now people feel more comfortable talking about it than they did, years ago.
So if there is so much more awareness of cancer and it’s issues, how is it that people are still struggling to find the support they require? Is it because the type of support they require, just doesn’t exist? I may be entirely wrong on this, so this is why I ask the question in this blog.
I have been to several presentations recently, where there have been many patients, in attendance. Most formats have been similar, with charities in the reception areas, showing information booklets etc,and selling Christmas cards. The people doing that were all enthusiastic, but it felt like a market place, where people were competing for customers. At no stage did I ever feel that the staff had a genuine understanding of what their audience was experiencing.
Given the fact that all the hard work done in the past has a got us to a stage where we almost have an information overload, it is not now what they seek. With information, the patient can make informed decisions, so we are definitely getting to a good place as far as that side of things is concerned. Also in the longer term I’m sure there are improved outcomes too, because of information.
The major difficulty, in providing cancer support, is that we all need different things at different times. From my own experience, and that of many of my fellow patients, our medical needs are mostly met, within our hospital. It’s once outside that environment, where things change.
The more practical issues of life, have to be faced, and unfortunately, a handful of booklets, just doesn’t really cut it. Sure, there has been a lot of research going into the information provided, but it doesn’t end there. For many, that’s where the real issues begin. Where do you turn? There is advice out there, but in many instances it is like looking for a needle in a haystack.
My opinion is that we need to be much more proactive in the way we provide support. We need to treat patients as people, and not just as a number to be targeted with mail shots and marketing. There needs to be a support coordinator for people, once they leave the perceived ‘safety’ of the hospital. You can easily become institutionalised and may need help adjusting to every day life, and signposting to local support that might be helpful for you.
From a society perspective, it is important that we do what we can to help people affected by any long term conditions, to be aided back to as useful a life as they can create. Giving something back, and feeling useful again. Hopefully, to be able to work, provide for their families and get a feeling of well being again.
Unfortunately in a clinical setting, I don’t really see professionals talking about these issues. Our treatment is generally good, and we have come to rely on the system to help us, but on these issues it doesn’t. We need to be much more open about this, and not be content to hand people branded books, and think that the job is done. Sure, time is an issue, but I really feel that much more personal contact is required, to improve things.
Maybe you disagree with my opinions and ideas. Hopefully you have found all the support that you required. If so, what worked well for you, and you would be happy to share? If not, what do you feel is missing ,and how could it be provided? Please feel free to leave a comment or tweet me @christheeagle1
Hi Chris, That’s why we do what we do at Living Beyond Diagnosis. Our aim is that the tweets @beyonddiagnosis and Facebook posts act as signposts to cancer centres, support groups, online information and updates in the UK.
Also true to say LBD was set up as the ‘signposts’ had been ‘missing’ during our own journey!
Thanks for your comments, and the part that Living Beyond Diagnosis plays in the cancer world. Signposting is such valuable work, for patients, as we are both so aware, due to our own personal experiences. It is unfortunate that not enough of it goes on!
Keep up the good work Anna, and many thanks for all you do! Chris
I think I was probably lucky as I was diagnosed with breast cancer while living close to Addenbrookes hospital in Cambridgeshire.They have a specific unit for breast cancer where dedicated nurses are available to advise and support you. There is also a Macmillan’s office on site and there were courses run after treatment on living with cancer. I think they were joint Macmillan and hospital. There was advise on nutritian, exercise, a physio course for light exercises and other support. People where I lived were kind and supportive too.
I had one problem, after the first operation, when I’d been fasting from midnight and was not operated on until 5pm and got to the ward around 9pm. There was just one nurse, who was too busy with 22 post-ops to get me food! I finally got some bread and butter at 11 when an orderly joined her.
Macmillan did research on hospital nutrition and I filled in a form and they used my story which unfortunately went out to various papers with my name and location. I am now resident and receiving very good post-op support and meds in Hertfordshire and the article implied I had the op there so I felt bad about it. I pointed it out but it never got corrected so I am less keen to fill in surveys and be named now.
The care in Herts is good too. It might be because, on advice from someone whose wife died of cancer, I volunteered for a trial. I was told any trial is a good thing as you get lots of monitoring and it has proved to be so. This was a low radiation trial so I got less radiation than some other people.
The operation was 3 years ago and I’m still on hormone medication and get tired but was really very lucky. Previous meds had bad side effects but the hospital here are very good about explaining changes, possibilities and helping me decide what will be best for me to do.
I don’t know of any groups locally to chat to but I suppose if I wanted to I could search for one.
Firstly, I would like to thank you for sharing your story.It is always good to get a variety of experience, that we can all learn from.From what you say, it does seem that your experience was on the whole positive, which is really good to hear. Addenbrookes does have some wonderful resources too.
The issues occur, when you don’t have those resources at hand. Sometimes it is very difficult to find the information that you need. As you know, when you are going through treatment, it is stressful anyway, without having to navigate a system that you are unfamiliar with.
My personal experience has shown me that cancer services are still very fragmented in general.There also seems to be difficulty in actually finding someone to talk too if required. Not a trained counsellor, or even clinician, but someone who may understand what you are going through, when you are trying to put your life back together again.
I really hope that things progress well for you, and that you continue to find the support that you need. I feel heartened by reading your comments. Many thanks for sharing, Chris
I so agree! With a diagnosis of (supposedly) incurable non-Hodgkins lymphoma, I felt as though I fell off a cliff when I left the oncology office. What could I do to support my own health? How could I take charge? What did that even mean?
Studies by Dean Ornish MD and others have shown that lifestyle factors can actually change your genetic expression, potentially impacting not only your current health but the chances of recurrence. Dr. Ornish showed that four key factors, all within our control, matter: Nutrition, Exercise, Stress Management and Connection with Others.
As a result of my own research and frustration with the matter, I started the Anti-Cancer Club. Every week, we offer one food, flavor or idea in the categories mentioned above. The mission: add something new and healthy to your life! In 6 months, that’s 26 changes towards health. If you only make 6 changes, you’ve creating an informed habit of gradual change.
Is this a cure? No. Can it have a positive and significant impact on one’s health? Absolutely. Our weekly newsletter is free, and I hope, fun. You can find us at http://www.anticancerclub.com
Founder and Member, Anti-Cancer Club
You and I had a similar diagnosis, and have chosen to make something positive from the situation. As you know, there is so much value in patient experience. We have seen the gaps in service, and are attempting to do something about it.
I am very much in awe of your work. What you have done personally,and share with others,is fantastic Pat. I love your enthusiasm and passion, which shines through for everyone who is helped by your experience.
My best to you, in your personal and professional capacity. Great work from the Anti-Cancer Club!
When I was unexpectedly diagnosed with grade 3 endometrial adenocarcinoma (womb cancer) in 2010 there was very little information available about the cancer itself and no evidence of any specific support. I made a chance remark to a friend, also a womb cancer patient (which is how we came to know each other) about setting up our own information pages if necessary: that remark led to a page on Facebook that became Womb Cancer Support UK. The private support group has proved invaluable for many women, myself included.
Many thanks for dropping by and writing your comments. Your situation is another example of the patchiness of support availability. A lot will depend upon the cancer you have and where you live. In this day and age there are many ways of offering support, even for people living with rarer cancers and in rural places.
Social media is not a direct replacement for face to face contact, but it can certainly complement more traditional methods. There is a big hesitation from the health profession to get involved. However in my frequent talks to professionals, I tell them that support is already there, all they have to do is signpost people to it, but they are not keen on doing that either!
What you have done brilliantly, is what I and many others have done, and tried to fill the gaps that we find.The positive of the internet is that we don’t need the backing of the N.H.S. or any large charitable organisations to do our work. Which probably makes us much more effective. Our only agenda is helping people!
Thanks for your comments, and I hope both you and your work, continue to thrive. Well done, Chris
This is an insightful post Chris and yes I agree with you. It is the very reason why I turned to social media to find the support and the information I needed. I believe that social media holds the key to more targeted interventions. I know it is not for everyone and it is not a catch-all panacea, but for me and thousands like me, it has been just the support we needed.
Many thanks for taking the time to comment. I think that in many respects, you and I have many things in common. Particularly our use of social media. For many reasons, I understand why it is not for everyone, but I have found an ease of both giving and receiving healthcare information.
I am now no longer shocked when I hear stories on here from people who cannot find the support they require. Even now this is still far too frequent. I am so pleased I decided to take things into my own hands, as I can see the difference, these blogs etc can make to peoples lives.
Thank you for your support of my work Marie, and good luck with all the fabulous stuff you do! Chris
I agree the lack of support is a key issue. The Maggies centres and Penny Bron I think have the possibility of doing this in a person centred way. e living with cancer courses
Sorry published early by mistake! Key thing is there should be a seamless support system between medical and ongoing support, currently is the lucky ones who get it. Really it’s about realising we need to treat the body, mind and soul, to really regain health. Tanks for raising this Chris. Much work to do. Audrey xx
Your comments are much appreciated! It does rather seem that support, as much as treatment, is still a bit of a lottery. You are certainly right about Maggies and Penny Brohn, who seem to do things really well, but their services are still sparse. It really is very hit and miss.
I entirely agree that until we are treated in a holistic way, then things will not improve. It feels that once the clinicians do their stuff, there is a bit of “what happens next?” about things. It really doesn’t feel that any thought has gone into survivorship.
In my own personal situation, no one was really interested in what happened to me once I left the hospital. I am an independent guy, but some help would have been nice!
I wish you well with your stuff Audrey. All the best, Chris
For me, the best service is when people are able to stop and listen. Brochures are good – at least for my analytic husband, but people can be better. That’s why I appreciate online exchanges, but also ‘drop in’ cancer support centres with empathetic people ready with a cup of tea. I truly believe the support exists, but I think there can be a lack of ‘bridge’ between patient and service.
You make some great points, particularly the one about people. Time seems to be at a premium within a hospital environment, and I rarely experience, Health Professionals signposting patients to support services.
The ‘drop in’ centres are very good, as that what they are specifically there to do. However there are not so many of those around, and many people are unable to access one.
I do not feel that a lot of the support does exist, but I agree with you entirely, about the ‘bridge’ between patient and service. In my experience, that is very poor.
Thanks for your comments Catherine, which are appreciated as always, Chris