National Amyloidosis Centre Patient Forum

Amyloidosis => Patient information events => Topic started by: Mark McConway on January 06, 2015, 11:56:52 am

Title: Should Venues for Patient Information Events Be Rotated?
Post by: Mark McConway on January 06, 2015, 11:56:52 am
As mentioned in my other posts here, I was diagnosed with AL Amyloidosis and had my first visit to the NAC in London in March 2011.  Since that time, as far as I know, all the patient information days have been held in London.

Whilst I can understand that this is more convenient from the point of view of the consultants' time in attendance, I'm wondering if it satisfactory from a patient perspective.  I live in Scotland and, along with patients from elsewhere in the UK, I would suspect that a trip to London for an information day would be expensive, especially for those people requiring assistance. 

In terms of spreading awareness, I think that having the Information days at the NAC might not be delivering 'best bang for the buck'.  Yes, the patients get to learn about the disease and what's happening in terms of research to treat it - but the wider UK remains none the wiser.

So, I have two suggestions. 

First, we think about some 'roadshow events' (perhaps self organised by recovering patients) to create some general awareness at a county or regional level.  Perhaps this could be organised at a hospital. At least one of these in the year could be designated as the main Patient Information Day, where the senior consultants come and speak.  Edinburgh seems like an obvious choice for Scotland but I'm sure that patients outside London will have their own preferences.

Secondly, consideration should be given to having these events (particularly where main speakers are involved) professionally filmed and made available on line.  This is not hugely expensive and would allow newly-diagnosed patients to get the most current information available, when they need reassurance most.

Shall we have a referendum?  ;)

Title: Re: Should Venues for Patient Information Events Be Rotated?
Post by: Helen33 on January 06, 2015, 12:31:31 pm
I think this is a very good idea.  Nottinhgham University might be a good venue for the Midlands. 
I haven't attended a Patient Information Day in London a) because I didn't know about them and b) It is too far to travel by car and too expensive by rail.
Title: Re: Should Venues for Patient Information Events Be Rotated?
Post by: patpinchin on January 06, 2015, 02:12:26 pm
Only a Scot would suggest a referendum!  :) Tongue in cheek maybe but of serious intent!  Maybe a simple on-line questionnaire could be sent out to all on the database? We need to know patient opinion and the only way to do that is ask them!

A patient support group is something Annone and I have previously discussed with Miriam. What you are suggesting is something similar in a different guise. Whilst Info days numbers have been small I think in previous years, I believe there were around 70 in 2014. On the rise but still a long way off from the 3,000+ NAC patients. Time, cost and ill health are the obvious reasons.  Amyloidosis knows no geographical or financial boundaries! The other must be that the current Information Day is sponsored, not held at the NAC so of no or little cost to the NAC.

 Our Consultants travel to conferences globally so one would hope they would be wiling to speak at one designated major patient information day per year in the UK. Varying the locations year on year is definitely what is needed and filming such an event would be an excellent way for those unable to attend to be informed and feel as if they were there. Gradually adding spokes year on year to the main hub would grow exponentially. 

The slides from each info day held so far and posted on line have always been useful but with no speaker address to accompany them, I have always felt that half the story is missing! Roadshows around the country, at a regional hospital where there is an enthusiastic Haematologist with an interest in the disease sounds like a very good idea. Corporate sponsorship could perhaps fund the day(s) if necessary and a small fee could be charged as at present to cover refreshments, lunch, venue hire et al. A small start would be a good way of gauging support. Big oak trees from little acorns grow!

The popular talks which you have done recently were a huge success with requests for a "repeat performance" so you are clearly the man to spearhead discussions and organisation on an info day venture in a couple of other venues if you are willing. Spreading awareness to the public at large and information to sufferers are of key importance.  If/when I ever regain my capacity to talk, I'll join you on the bandstand! Having spent half a lifetime training teachers, I have relevant skills to offer.  In the meantime would be glad to offer admin help. I am sure if, as Miriam hopes, this forum goes live there are plenty of others willing to help who would come forward. This forum is the best way yet for putting all in the UK affected by Amyloidosis in touch with each other and getting nationwide events to support sufferers and families off the ground.  :)

PS...remember the letter to Michael York? Have not received a reply yet but a definite invitation for him to address a UK audience with specific date and location, could bring a response. If that could be arranged, it would be a great crowd puller!
Title: Re: Should Venues for Patient Information Events Be Rotated?
Post by: JohnP on February 13, 2015, 08:07:15 pm
Perhaps a workable alternative would be to use a "webcast"? In my work with large corporate bodies these were used to link groups across the globe. Whilst not as satisfactory as attending in person it allowed participants to receive information in real time and could allow questions to be asked and answered.
Title: Re: Should Venues for Patient Information Events Be Rotated?
Post by: patpinchin on February 15, 2015, 01:42:53 pm
Great idea John. Would be available to all. MUK have provided televised presentations. They are great but maybe a webcast would provide even wider coverage? I would especially like to see the Q/A session and the breakout session discussions. The latter might not be possible as they all take place simaltaneously? I guess MUK would also have to approve since they sponsor the day?
Title: Re: Should Venues for Patient Information Events Be Rotated?
Post by: georgeturner on February 25, 2015, 11:56:48 pm
I think rotating the venues is an excellent idea. Not only would it make getting to the venues much easier for people living in various parts of the county, but also if the events could be held in conjunction with major hospitals, then it would be a chance to raise the awareness of the local healthcare professionals.

Also the idea of local patient support groups mentioned by Pat sounds like another very good idea. With more and more people joining the forum and providing each other with great support and understanding online, perhaps we could get some local groups together and meet each other face to face.
If members wished, they could add their location to their profile and contact others to see if they would like to meet up.

How about a Scottish group Mark?