We have the tools and things must improve!

This week has been treatment week, so Monday and Tuesday are filled up, but I always try and make the most of my time, and am generally communicating via Twitter or talking to staff and patients. I have a continual thirst for information.I managed to talk to a good number of patients, and also a couple of very senior Health Professionals.

As you know, my 'crusade' is to improve support for people affected by cancer. Obviously, I make my own observations of things, during my endless visits to hospitals, but I am intrigued to see how other people view their situation. Do patients feel that things could be improved or are they content with what is being done? I also wonder if Health Professionals feel that more should be done, or they believe that the right quality and quantity of support is available.

I was lucky enough to talk to two inexperienced patients this week, in very different settings. Both had diseases and treatment plans similar to my own.I don't know why, but I am always shocked at still, how little support people receive, outside their family and friends.It seems they have had a couple of brief chats, been given some information booklets, and then put into the system.Of course, although advised not to, most people take to the Internet to find out more,and that's where the troubles begin.

Information, is only part of the story of support.We also need help once we have the information. It really feels like it is assumed the job is done, when you have been handed some books about your disease and treatment. Sure, we have come a long way, as even only ten years ago we were struggling to find any good information.But now we are swimming in it. Booklets, constantly updated and minute by minute news on the Internet.However, we need to progress from here! 

Much more practical support is required.We actually need to invest more time in each patient, to help them through their psychological and emotional issues.To understand them as a unique person, not just a case file. We have to prepare people as best we can, for their treatment, and offer support as they continue on their path. In this day and age it is not right that we still see so many frightened people, starting treatment, because we most definitely can do more. 

Not only on the treatment path is this true, but it gains momentum, once you leave the perceived safety of your hospital. In most cases, once the clinicians have done their work, you are let loose, to make the best of things, in what is very definitely a new world for you.Now with different information in your hand, you try and put your life back together.

The people I have talked to this week, describe, their views, of disjointed services, and poor communication. Almost finding people, by trial and error, meaning some maybe lucky, and others not so. Is it any wonder that people will then keep returning to the hospital, many with issues that could quite clearly be sorted at home or in a community setting. No one wants to be dependent on the system, but currently it is not helping us be independent.

As a business guy I understand the many issues involved here. Primarily of course finance. However sometimes with a different way of looking at things, there are ways of solving problems without spending stupendous amounts of money.

More people are being diagnosed, with cancer, and with advances in treatment, are living longer with the effects of it.There are many people like me, out there who would happily share experience, for the benefit of others, at whatever stage it was required. We are already doing 'buddying,' etc, but not really to the level required, and there are many different ways that experience can be harnessed, particularly with the use of social media.

The N.H.S do their thing, and charities do theirs. Sometimes they collaborate, sometimes they don't. Pilot schemes come and go, support groups open and close. Who takes responsibility here? Sometimes there can be so many organisations involved in your care, you get frustrated, as no one appears to take charge of your case. All designed to help you, but rarely coordinated, and more a scatter gun approach. 

I am certain, that if more of the right support was given, there would be less of a burden on the system in the long term. But more importantly, more people would have a greater feeling of worth about their life. It is a wonderful thing to be given extended life, of course, but sometimes it can be very difficult making a new life, whilst trying to deal with health issues from the old one.

These are thoughts I have gathered, over the last few weeks, through my personal experience. What are your views? Perhaps you have a positive story of support you could share? I look forward to hearing from you. 

You can also see more of my work on my new FACEBOOK page. Many thanks for your support.

Do you get the support you require?

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

Supporting people affected by cancer

Normally, I like to have my new blog post written and launched by Friday each week, but since the increase in my treatment regime, and prior engagements made long ago, this week and next are particularly difficult and will find me writing at the w/end. However, another reason for my time issue, is that I have had contact from 3 people, who I have encountered in very different situations, and have asked for various forms of support with their issues.

This prompted my thoughts for this post. All of these people are unfortunately, 'experienced patients,' with family, friends, and medical teams around them. However they have chosen to contact me, regarding their issues. I wrote last year that it was 'time to look at the ways we offer support' but I also wonder if some of the support we need as patients, is just not there at all? Maybe we don't even know what we need?

Giving and receiving support is extremely difficult in a lot of cases, particularly when something like cancer is involved. There is no rule book, to guide either party. You as the patient, don't really know what you need until it becomes apparent, and your loved ones/friends can't understand what you are going through. Also if you are anything like me, you hate asking anyone for anything!

Experience has shown us that most people don't feel comfortable discussing certain concerns with either their clinicians or loved ones, for a fear of 'burdening' them. It is also extremely difficult to have to admit to people you know well, that you are finding things tough. Particularly if you are the person that people normally look to when times get difficult for them!

I have met a lot of people affected by cancers similar to mine, and many that have gone through a stem-cell transplant, like mine. However I can say that without question, everyone's situation has been unique. Personal circumstances, treatment regimes, health prior to diagnosis, complications after treatment, and the psychological effects on them from the whole process.

The word support means different things to us all, and we can offer it in different ways. One increasingly common method now, is by giving information. Surveys have shown that informed patients are more likely to take control of their care pathway, which will result in improved outcomes. This is great, but speaking personally I do not feel supported at all, by a handful of booklets! This is only a small part of the story. Knowing what may happen to you, and what the treatment is likely to do, is helpful, but also frightening. What do you now do with that information?

As my life has taken me in this direction I spend a lot of time in the company of people affected by cancer. Not only patients, but professionals, family, friends, and organisations working to improve things. I also have a lot of communication with people who contact me via social media. I am still shocked, how many people cannot find the support that they are seeking.

Why is this? Possibly, because what we require, can change from day to day. As our world goes through the 'high-low' process, our needs are constantly changing. Many things that occur for us, are outside our personal experience boundaries, and we have no 'back catalogue' to drawer on.

It seems that my personal experience, is the major qualification, in the support process. One of the reason's that I started doing the work that I do, is that I 'get it!' Much as people tell me about different schemes and projects that are starting, or already exist, there is no credible 'official' system that caters for what is required.

 

Maybe, a chance conversation, or a blog post stimulating your thought process, may prompt
the support you have been looking for. Social media has opened up the support arena greatly, and there are millions of us sharing our experiences with the world. I know I have received huge help from this area.

In summary, I'm very happy to be able to help where I can, and feel privileged to be invited into very personal areas of peoples lives. Unfortunately, I am unable to offer a solution to the professionals who ask, how can we improve things for you guys? I am not convinced that there is anything 'official' that can. Cancer will always create different 'grey areas' for all of us. Definitely a place where 'one size does not fit all!'

Do you feel that you are able to access the support you feel you need?