How do you feel about a CP awareness campaign?

[andywilson]

Hey again everyone

We are the design students from the Glasgow School of Art who have popping in and out of the forum the past few weeks. This is a wee follow up to our design project post: healthunlocked.com/painconc...

Firstly we must say a huge thanks again for the amazing insights you have shared with us! It's given us a great understanding of what it is to suffer with chronic pain and we have a new sympathy, respect and admiration for sufferers of CP. We hope we can still help you in some shape or form with this project.

With the insights from the interviews and feedback from the ideas generated we found a handful of key areas with which we could focus on. The most prominent of these areas we believed was the absence of a chronic pain awareness: There seems to be a lot of social and professional problems arising from this lack of knowledge and understanding. Even we were guilty of not knowing this before we conducted the project! This is where we have decided to invest our time into exploring.

We are thinking along the lines of a website / campaign that holds a profound message and increases public awareness. An example of this kind of public awareness campaign could be something like Breast Cancer Awareness - bcacampaign.com. Also perhaps something that can help you, on an personal level, communicate your condition to friends and family.

We conducted a quick interviews / a small survey with 14 people)on the streets of Glasgow to see what things the public associated with chronic pain. We gave them 9 options to choose from (next to them are the number of times voted for):

1.An invisible illness: 6

2.Reduced activity: 8

3. Mostly incurable: 2

4. Can be socially isolating: 4

5. Treatment isn't just medical: 7

6. Persistent pain: 10

7. Not necessarily physical pain: 0

8. No straightforward diagnosis: 6

9. Flare ups: 5

This was just to get an initial public reaction. Talking to one of the members of Pain Concern recently revealed we had missed some issues such as tiredness, keeping to routines, pacing (even on good days), lack of sleep, mood swings, weight gain and strategic planning. If we were to do a campaign like this we would need to be crystal clear over what we would be trying to communicate to the public and where the gaps of knowledge and understanding were.

Is there anything we have missed in this list?

It would also be great to hear what you think of this direction. Again we are very, very open to your suggestions and input. Not afraid to scrap this direction and follow something else if you think it is inappropriate

Thanks very much once again for your help!

Wishing you our best,

Andy and Tay

[Bananas5]

It is often those who are closest to that CP sufferer, eg parent, child, sibling and especially spouse who bear the brunt of all that pain, anger and frustration. They are first in the line of fire and have to deal with the flare ups.

Wherever possible they should always be included in decisions which will affect the CP sufferer well being and comfort.

x

[welshnut]

I totally agree with pat on that statement, the carers who save this country millions and who often never get heard at consaltations. So you could include relationship stress, lack of sex drive, lack of confidence.

I would love there to be more awarness of chronic pain but sadly to understand it you have to live it or live with it.

My daughter suffers from crippling migrains so many people sympathise with ohh yes I get migrains too they really are awful. What they mean is they get the odd bad headache which interupts their day not a crippling illness that completely controls your life.

Congrats on your research and thank you for trying to highlight this issue.

nutty

[Bananas5 in reply to welshnut]

Hi Nutty

I smiled when you said about people 'understanding' your daughter's migraine! People sympathise with David's broken back by telling him they had to see their GP with similar. Turns out they had spent Sunday afternoon mowing the grass and a bit unfit! What they never realise is that chronic pain is a life sentence not curable with a hot bath and 2 paracetamol.

Sadly, but probably for the best - Joe Public lives in s blissfully ignorance. Until it does happen to them, and I pray it never does, they have no idea. Just like divorce, bereavement or losing your job.

It is called survival.

Do you come from Wales by any chance? A great pity if you do cos I would love to meet you. Always though you sounded my sort of person!

Pat x

[welshnut in reply to Bananas5]

Hi Pat

Meeting up would be brilliant, I am a welsh refugee now living in Ipswich .

nutty

[Bananas5 in reply to welshnut]

Oh,. I an an English woman living in Scotland with a Yorkshire husband!

Almost as far away as you can get but you never know.

Pat x

[angelontheroad7]

I suffer from CP and it made me useless when I have my bad days. It could last from few days to weeks trying to control the pain. Even my 4 years will say "mummy needs to stay in bed because she's poorly"

[ecnico15]

Greater awareness of CP would , of course, be brilliant. It is often hard for people to understand what you are suffering from, essentially an invisible condition, and it can be isolating.

However, I agree with welsh nut above, I think you'd have to live with or see the effects up close to understand properly.

[superannie]

Well said all, I fully agree that is the carer who is the most neglected. They, more than anyone, should be first in line in discussions about treatment . In fact in anything that affects the sufferer as it affects them first and foremost. Thank God for carers!!

[pinknosedcat]

Hi, I think your campaign is a very good idea, how far will it go geographically? I live in the South East and there is very little if any general awareness here. I would be more than happy to answer any questions you've got if it is useful to you. I've lived with chronic pain for over 17 years. p.s. I am also now an artist, thanks to the pain for forcing a career change.

[teadrinker]

Pain Concern already has a very good website, and Action on Pain is very good too. I'm not sure how you would go about making a website differ so that it was about raising awareness. I know that the internet is most peoples' port of call for info, but unless you are dealing with CP you aren't even going to think about it. If the aim of your campaign is to bring it to the attention of people who are oblivious to it then I'm wondering if a different kind of campaign is needed - perhaps adverts (expensive though) with links to your website where people can then get information. I suppose it depends who you are trying to target - people already in contact with chronic pain who want to find out more, or the general public who could sometimes be a little more understanding if they realised it was there in the first place.

Anyway, if you were trying to get a specific message over to the general public (and health professionals) I would want people to know that chronic pain (a) is a long-term problem that doesn't go away (even if it improves), and (b) people aren't putting it on!

[Hidden]

Many comments about carers, I would ask that child carers be included. For some, and me in the early days, my children were part time carers. As much as I tried to make if fun for them, they were still helping me.

Employers could do with a huge dose of understanding and being more flexible in their ways with disability, illness etc.

Shops, no seats in any shops. I tend to loiter in John Lewis furniture dept when the family are shopping in the shopping centre. Then move to a cafe when they move to the high street.

A training module as part of GP training, as far as I am aware they only learn about acute pain. More pressure on drug companies to develop a painkiller that works!

It's like anything if you don't experience it you can't know, Welshnut mentioned migraines, I get flashing lights but no pain. It's a migraine but I have no idea what it's like to have the pain, nausea, vomiting, light aversion of a classic migraine attack. I thought maybe a game type thing where you make the choices someone with cp has to every day, hour, so they can get an idea of how cp impacts on your life, and why we may be depressed, irritable, lack energy, opt out of things, over do it and spend a week in bed. How you go about doibg things that make you happy. So many variables that could be randomised and played against energy levels, moods, lack of sleep, exercise, meds, etc. There could be 6 or so different people to play as, and the more you play the more you learn to ration your activity, thus the aim would be to have a reasonably happy life with cp.

[Reykua in reply to Hidden]

Well done Zanna, You always say exactly what I'm thinking - are you sure we're not related? Thank you for your great input.

[Hidden in reply to Reykua]

Well I think if awareness of cp is a target, then all areas should be covered, because it affects those with cp and those around them. It's not an easy thing to live with nor try and explain to anyone. So the more people who try and understand and try to accommodate it the better.

And everyone with cp has those why me, when will it end moments at some time or another. And some people get stuck there because every door they've opened to find a way through has been slammed in their face. When maybe, they just needed to go a different route altogether.

[Pheonixalight]

Andy & Tay,

Chronic persistant pain - that is like being tortured and nothing being done about it. Can destroy your/my/ our soul.

Thank you for being young and caring. Have a good life.......

[andywilson]

Hey again everyone,

Apologies for the late reply. This was really great info, thank you very much for your help!

Actually the perspective of the carer is not something we looked in to deeply but yes you are so right. We'll keep this in mind in our future outlook!

To update you on our progress we have had a workshop with some specialists and it looks like the project is going to take the route of a collaboration with the specialists on their managed chronic pain website. Hopefully we can create something positive and useful with this direction.

As you pointed out teadrinker a lot of our idea proposals were somewhat reinventing the wheel. We don't want to create another 'Pain Concern' because they are doing a damn good job, same with other services.

We have found an opportunity area however to digitally map all these services we have encountered (and continue to stumble upon) related to chronic pain. An interface that could allow you all to explore the map of services, filter the results (based on who you are, what media is preferable, what you are looking for, your condition and where you're from) or search all the sites for specific information. This could help, for example, build an awareness for what info and services are available to chronic pain sufferers, it could also be a reference guide for family and friends pointing them in the right direction to understanding chronic pain and it could help sufferers 'save spoons' than plowing through multiple sites to find the right information .

This we believe is our strongest idea so far and we invite you to have a quick look at the basic mockup: share.axure.com/MJTL0O

A working website could look something like this knightfoundation.org/featur... or this informationisbeautiful.net/... but for CP services.

Again all thoughts, comments and questions and happily received

Cheers again!

Andy and Tay

[katwilson04]

Great idea, and would be happy to support this, and I feel it may give some insight to other people too!