The Patient's Forum

[Astra]

Hi Everybody

I was asked by my gastro to go to a Patient's Forum at the hospital tonight.
There were about 15 of us, and 2 reps from Crohn's and Colitis UK, formally NACC, and a gastroenterologist to present a PowerPoint presentation on what Crohn's and Colitis is.
Fair enough.
Then it went on to talk about the services that they provide and how we, as a forum could present ideas to improve them.
Fair enough.
Then people wanted to talk about their own personal experiences with this service, and wanted to ask a lot of questions about their illness.
I was quite shocked at how little they knew about their illness, not their fault you may think? Dunno
One person who has colitis hasn't seen a doctor for 20 years!
One person mentioned how he was battling with the Dept of Work and Pensions on Incapcity Benefit and DLA.
This was dismissed as 'not the forum for that!'
People talked about diet and food, how they didn't know what the meds were for and why they were taking them.
And so on.
So in a nutshell, it was a forum to produce a Patient's Panel on how to improve services and would we meet up every 4 months.
I started the ball rolling with, why haven't we got a first port of call, ie an IBD nurse's phone number?
Why haven't we got an IBD dietition in the dept?
Of course, these were the sort of questions they wanted to hear!
On the way out, I mentioned our forum to the patients. Some were quite interested.

Not sure I want to do this!
Don't think I'll go back.

 

[Guest]

i think you're wonderful for going along to this, Joan, and for speaking up. it's people like you, who really know what it's like to live with IBD, who know what we need... if you can find the strength to go back again, you will be doing such a wonderful and rewarding thing..

it amazes me how, in this day and age, there can be so much lacking within massive organisations such as the NHS... i had one night in hospital last week, and i saw and heard things i was disgusted about - i said to my partner when i got back, if i had the energy and time, i would go back and visit one of my wardmates every single week because i know i could help her, and i can see how she's being neglected and misunderstood by the psychiatric team there.... not saying i know better than the doctors, but she opened up to me, and i felt i wanted to do something with that doorway she'd let open... but sadly i know i can't..

 

[Rebecca85]

It amazes me how people know so little about their own illnesses. A few work colleagues have IBS, and they know nothing about it. I asked another colleague what she took for her acid reflux, she didn't know the name or what it did 'I just do what the doctor tells me'

 

[Astra]

Thanks Sue and Rebecca

I will have to give it some thought. I just felt that I was coming across as a big 'know all' shot down in flames at the very mention of being your own health advocate, getting genned up with knowing your own illness and how it works, getting familiar with your meds, and not to be afraid of questionning why, and what for, etc, so I just shut up!
Flogging a dead horse comes to mind.

 

[littlemissh]

Perhaps next time you go some may have been motivated by you to learn more and therefore there may be more input from them.

 

[littlemissh]

By the way astra, how did you get on with the gastro?

 

[xJillx]

It amazes me how people know so little about their own illnesses.

Honestly, if it wasn't for this forum, I think I'd be in the same boat of not knowing. I have learned soooo much on here. Sometimes the information can be scary, but it is necessary to know. Keeping my head in the sand wouldn't help anything.

And, Joan, I am always interested in what you have to say on here and I have never taken you for a "know it all" and I would find it hard to believe anyone could. You are well informed about the disease due to first hand experience and it's clear you want to help others by sharing what you know. I agree with Dingbat that you would be a huge asset to the group if you can bring yourself to go back.

 

[Astra]

Thanks litlemiss

I dunno, maybe, hope I've given them something, hopefully they'll check us out too!

I have posted my trip to gastro called Gastro Appt - Good un!
As you can see, it was a good un!
I'm feeling really well, just staying on Pentasa, have done for 5 years!
I asked for the R word, and I got it, so fingers crossed!
xxx

 

[Mark63]

Hi Joan,

The Hospital are obviously ready to listen and you know what needs to be done to improve the service that they provide. Stick with it.


Mark

 

[ameslouise]

Joan - it's great that they asked you to participate! To me that means they recognize you as an informed and well-spoken patient that can help others and has good ideas.

I think it would be great if you kept with it -but that's up to you, if it's not too much to get involved in. Even if you help only one or two other patients to learn more about their disease and take control over their healthcare, you will have made a big difference.

-Amy

PS Add me to the list of people that are shocked by other patients' lack of knowledge of their own disease. My hematologist asked me if I had a background in the medical field... because I knew so much about my disease, my meds, and my own history. I was like, "Um, doesn't everyone?" and he just smiled and said No....

 

[Astra]

Thank you Jill, Mark & Amy

It is shocking, and exactly why my doc suggested that I go to the forum, he knows I'm the captain of my own ship and don't rely on others to do the running around for me, so to speak.
I don't believe in God, but God helps those who help themselves, right?

I'll wait, sleep on it, see how the land lies etc
xxx

 

[sawdust]

Thanks for posting an update. I was anxious to hear how this went. One thing to consider in whether or not to participate again is that you were the person with the ideas and with a good understanding of effects outside your own personal situation. Even if you're not just representing yourself, it sounds like you might be able to help others by sharing good ideas. I'm not twisting your arm, just thought I'd throw my two cents, err shillings.

 

[Astra]

ha ha thanks sawdust!
cents or shillings will do!

My partner Mark says get your own support forum up and running without the bureaucracy of the hospital! He said he'd help me to produce information packs for newbie Crohnies.
OOOOOOOOOOOOO food for thought, hey!
I'd love to do that!

 

[Crohn's 35]

Hey Joan, I think you are the perfect person to do this! First you are an Educator, second you have had the disease a long time, 3rd you are a parent, and 4 you are the sweetest person I have come to get to know here. You have a positive outlook and you are also experienced whilst being on here learning and giving your advice. Kudo's to you! As the Nike ad says "Just Do it!

 

[Dexky]

Hey Joan, I think you are the perfect person to do this! First you are an Educator, second you have had the disease a long time, 3rd you are a parent, and 4 you are the sweetest person I have come to get to know here. You have a positive outlook and you are also experienced whilst being on here learning and giving your advice. Kudo's to you! As the Nike ad says "Just Do it!

.....and just so damned smart!!!

 

[D Bergy]

I completely understand why you would be reluctant to go back. I doubt that I would either.

You probably are the groups only hope for some meaningful feed back.

I once went to some Celiac support group meetings, for my daughter, who has Celiac.

It was informative, to a point, and then it drifts into the latest foods available that are gluten free, and there is nothing wrong with that either, but I want to know how the disease works, what makes it tick, etc. You have to understand the nature of it, if you want any chance of trying to treat it. There was none of that, and I guess that is what I was looking for.

It just amounted to "all you can do is not eat gluten". Well, I never believe in the hopeless disease concept, so it was not my cup of tea.

I hope you do well in the group. I am pretty sure you are going to go back. lol

Dan

 

[MADiMarc]

Hi, Joan.
While I think you are the perfect person to educate the uneducated, I totally understand why you would not wish to push that boulder up that hill! Especially if you have to deal with the suits at the hospital. The thought of that gives me a rash!

I was dx before Internet, so I went to the medical library. Even now, I don't know everything & I learn more each day from this forum. Like you, I cannot understand why people don't educate themselves.

Good luck in which ever direction you pick,
Michele

 

[Dunbar]

It amazes me also how many go through this and not be aware of their own bodies. How can someone live inside themselves physically and mentally and be so unaware. Inquiring minds want to know, or okay, maybe, just in my world. I have been gearing myself up to start a group and/or local webpage here, there is NOTHING available.So if your partner is gung ho on gathering info, I for one can put it to good use.
And your knowledge, awareness, insights and kind expression hold you in good stead woman, be assertive and proud, you know your stuff.
Annette

 

[Pirate]

Joan, my dear friend, you have the chance to such a great service for our fellow Crohnies. You always give sound advice so stay the course and help as many as possible.

 

[Astra]

Wow!
Thank you Greg, Michele, Mark, Dan and Annette, and of course you too Pen, my pal!
It's reassuring to know that I'm not a complete know it all, after all! lol
xxx