Cancer information with some collaboration please!

This week has been a particularly busy week. I spent the first two days, having my regular treatment, and yesterday, was performing my weekly volunteer role. In those two environments alone, I continue to meet and talk to such lovely people, both patients and professionals. It is a great barometer of how services are actually performing for patients.

As I’m sure you are all aware by now, I work in many contrasting environments in the cancer sector. From, ceo’s, policy makers, social media, right through to the service user, i.e, me and my fellow patients. So I get an interesting perspective on things.

Firstly I would like to say that there is a fantastic amount of work being done regarding information for patients, and the situation is improving daily. It seems that the subject of cancer is now becoming quite ‘fashionable’, and it is rare not to see, articles in the press, and programmes on the television. Celebrities are telling their stories, and they appear to have a very sympathetic listening ear,all the way from Government, to the general public.This then will drive, increased investment, and eventually improved facilities for us all.

Having said all the above, I am constantly meeting people, who are still falling between the cracks. I am continually finding people that are initially so overwhelmed by their situation that they just cannot see a place to start searching for the help they need. It is very easy to offer advice to someone in that situation, but unless you have experienced a cancer diagnosis, it is difficult for you to understand what type of thoughts are running through that persons mind. All logic can be removed, and even simple things can seem very complicated.

Then there are the issues caused by having a rarer disease. There is normally info around, but it is certainly harder to find. Most organisations tend to specialise. Rarer cancers tend to get less funding, therefore there is generally less support available. It may also be much more difficult to find a support group, if the disease is rare.

There are also issues, around where you live, otherwise known as ‘the postcode lottery’. If you live in a major city, like London, you would like to think that most things you are likely to need are on your doorstep. I feel that many of us ‘Londoners’ take this for granted! What if you lived in The Highlands of Scotland, or somewhere equally remote? What are the chances of being able to meet regularly, with someone who has similar issues to you.

Of course, now the Internet is becoming a very powerful weapon, in cancer support, although there is still a lot of hesitancy in the professional world, due to lack of knowledge,experience, and trust. There is still the issue that a lot of patients do not have access to a computer, but this will improve in the next few years, as we all need to embrace the benefits that the internet can provide.

Personally I feel that we have enough sources, of good information, flowing now, which of course will be continually updated, but what I feel we lack is cooperation By that I mean, that organisations still find it very difficult to work with other organisations.It would be very helpful from a patient perspective, if there was more collaboration.It seems that in a lot of cases,  although they might work in the same area of expertise, they don’t really know what their ‘competitors’ do. Thus making it difficult for the patient to find exactly what they need if your people don’t do it.

There appears to be an element of competition, and people become ‘precious’ with their work, meaning that sharing becomes difficult. Therefore the patient, may not see some information that might be of benefit to them, because they haven’t asked so many different organisations. I would like to see more signposting between them. It can be like a maze out there, and it can take an experienced person to help you find what you are looking for.

Some of the smaller organisations, get buried by a barrage of advertising, from the larger ones, and struggle to be found. It might be better if there was more cross organisation working. It would then also avoid a lot of unnecessary duplication of expertise.Ultimately we should all be working towards the same goal, which is a better and wider range of information for every patient. Of course there are financial implications, who funds what, who pays for what etc. But I am sure that if we could find a way of sharing information more effectively, the patient would benefit tremendously

I would like to share a recent example about what I am talking about. I met a patient for the first time this week who had a relatively common cancer.They had phoned an organisation for advice, were moved from person to person, without actually haven the original question answered. In the end, gave up, and thought that help wasn’t available. I was able to signpost, quickly, because of my overview of cancer information providers.

Surely in these tough economic times, it would make financial sense as much as anything else, but ultimately a much more user friendly experience for patients must be our ultimate goal.

Are you happy with things the way they are, or do you agree with my opinion?

2 Comments

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  1. As a newly diagnosed patient we are asked to learn a new language (cancer), to delve into a new world (cancerland), interpret medical jargon, be able to ‘read’ a doctors prescription and manage our own emotions AND often the emotions of those around us.

    Signposting and shared, collaborative working between health professionals, charities, support groups/centres AND patients must surely be a priority.

    Of course there is the ‘business’ argument for retaining a patient/carer within your organisation. I’m not going there and as a patient, honestly, I’m not all that interested!

    Why not acknowledge and boast about what you do brilliantly. What you are experts in. What you have a reputation and referrals for.

    But when you don’t know… please give the patient/carer the information to find the right resource.

    They’re more likely to remember a good referral/signpost than someone/organisation that held onto them too long and left them floundering.

  2. Hi Anna
    I don’t really feel that I can add to your comments. You have summed up my feelings brilliantly.Thank you! We all need to learn to work together much better than we currently are. After all, there is a common goal here.

    As always, thank you for your very constructive comments. See you back here soon!