Residential 2010

[magical]

I want to say a HUGE thankyou for the weekend. Even if i am still in bed recovering. But it was worth every second. Before i went i had given up hope. I'd been discharged from all docs and couldnt cope alone, however the weekend gave me options that i didnt know were available.

I loved meeting you all and really didnt want to come home. I want to live with bendies forever and noone cares you go down the stairs on your bum or you fall over and even better noone ask why you need naptime.

I especially want to thank Hannah for her talk. Its give me the encouragement to be assertive with docs. Im seeing a new doc soon and im already rehersing what im going to say. So thanks hannah

I also want to say a huge thankyou to the little girl crystal. She was always on hand to help, especially with the stairlift.

Cant wait for the next one.

magical - The one on the scooter

[barkingmad]

The HMSA team are relieved that you all enjoyed the weekend and thank you for the tips to make it run more smoothly next time. It does look like we will be booking there for the next residential in 2012.

We are aware the menu was an issue and we will discuss this with Hothorpe and we will arrange coffee to be served to people in the conference room.

I would like to say a huge thank you to the staff at Hothorpe who bent over backwards to accomodate our needs which were incredibly varied! They pulled extra staff in to assist with meals (which the staff were unsure whether to offer their services or to wait to be asked!), arranged staff to change beds etc. I have never met such a venue where they were genuinely concerned that we had a good time.

I think the reason it worked so well this time is that everyone got involved. You all organised your own stalls, raffle etc which freed up the staff to do other things.

I would also like to thank ALL the medical advisors who gave up their weekends to attend and stay for questions. I know that this was a busy time for them all at work etc and we really appreciate it. There was a lot more positive progress made within the HMS / HCTDs fields which can only be positive for us in the long run. I know we had new speakers, Dr Helen Cohen where there is clearly hope through the rehab service she is offering and then research which Prof Aziz
is currently involved in may have huge implications for those of us who suffer with gastrointestinal involvement.

I apologise profusely for having to ask Dr Brad Tinkle to wrap up both his talks as they were a little long! But wasnt he a star staying all weekend and giving us bonus talks and books for free?!!! So thank you to Brad as well.

And lastly a huge thank you to all of you who made the weekend worthwhile. It was lovely to be in a bendy environment where everybody felt comfortable and relaxed with each other. To that extent I think all of us being in the lounge or in the Blue Room was a huge benefit.

we are already discussing the next Residential Weekend and priming medical advisors ready to attend...honestly check with Prof Aziz! I was practically booking him in at the lunch table!

We have taken lots of pics so expect to see some in the newsletter and will be in the events page at some stage, minus the ones we took for bendy pics!

We are also now pulling together the Big Bash in Plymouth. We are hoping to have a lady orthotist who studied EDS when training, continence team, pain nurse and there could be a few other big surprises from all lovely advisors. The Big Bash will be over the last bank holiday in May next year. Tickets will go on sale after Christmas, as last time, the tickets will cover the event and meals but accomodation/drinks will need to be paid for. This is a hige opportunity to socialise together as well as pick up some more info and advice. We will have all the normal products on sale or info to hand. If possible I would like to schedule in a group leaders meeting over the same time.

If you think you may be interested or have some ideas, please do post on the Big Bash thread which I have copied some of the info to.

Please do keep the comments on the residential coming, I will be emailing everyone and asking for their personal comments next week..... Anyway I wanted to thank you all because it wasnt just the staff that made it so good it was you lot too!

[elliejay]

thankyou to the HMSA team
I had a very enjoyable weekend, learnt lots and made new friends. Really enjoyed the talks although it played havoc with my back
I enjoyed the food although it must have helped not being on a restricted diet, I think I should have asked staff for more help with carrying.
Stairs were a bit of a problem as I felt I should use the stairs and leave the lift for wheelchairs but I put my wrist out with all the stair climbing. Coffee upstairs would be good, I feel I made lots of unnecessary journeys
My main problem with the venue (which was beautiful) was travelling.
I could not have managed on public transport. I can't manage to get on and off trains and carrying bags is a problem.
I ended up driving but was totally exhausted on the friday evening and had major knee problems afterwards.
I would very much like to come again but not sure about logistics of transport
A big hello to all fellow bendies
Ellie

[barkingmad]

Hi Ellie,
Maybe you could share transport with another person coming from your area?
It was a very beautiful place and I did manage to sneak off for 10 mins to have a look around. I hope you can come again.

[WinonaLemonade]

is the orthosist my podiatrist by any chance?

[elliejay]

I did try posting to see if anyone was coming from Wiltshire but there was no one driving who was on the forum so I ended up bringing sheppy with me (we had fun with the navigating!)
Perhaps next time I will ask you if there are any delegates who are not regurlarly posting on the forum
Ellie

[Sue New]

Hi Donna,

One thought I had (and it may be something the HMSA has already considered and discarded) is that these weekends are one of the only times that you ever get that many bendy bods in one place at one time, so it would be the perfect time for the medical advisors to use us as guinea pigs or to give us questionnaires to fill out for research purposes. I know that when I have been to the EDSG conference I have taken part in Prof Bird's "Proprioceptometer" test before. It would obviously involved more work/co-ordination from the medical advisors and their teams, but they would be gaining vital research data too .

Sue xx

[barkingmad]

Possibly Winona!

Ellie yep that would be a good idea, I can then see if anyone could help out.

Sue, that is a great idea, I will mention it to them all when I email them next.

[madmum]

I enjoyed the weekend and agree with comments regarding food,drinks,lifts. Did think a lack of a childs menu was poor,to be told they could not do chips was amazing! We struggled on public transport and i found that a combination of not having much free time and lack of transport meant we were stuck at the venue as taxi to the station was £13 so could not have afforded that. Buses are a no no as due to an accident in 2007 i do not trust them. Not knowing people being a newbie i did not know who had cars and who might be willing to help. Any suggestions? I could not bring my mobility scooter as it is too large. I agree it is a lovely place but so far from town was a minus. Also can the association consider some sort of meeting area and maybe dvds or games for the young ones as they may not always feel the lectures are for them and there seemed little to do.

[barkingmad]

Hi Madmum,

We werent very organised with the kids that is true. However, I had a range of activities for the youngsters but was so busy I didnt get around to putting them out and about.

We did have some confident child helpers, including a youth leader and they were available for any anxious children. There was the ping pong room, TV room, childrens nursery room etc. At least four of the staff and trustees had current enhanced CRB's. They were floating around although admittedly we werent there purely for the children as we had the conference to keep on time and other jobs to do but the membership secretary stayed down in the main lounge and played pool with the children who didnt want to sit in on the talks.

We also were lucky that we had an impromptu youth meeting which was brilliant to see take place.

And the Staying Positive session for children/teens was brilliant. I am hoping they join us again.

I think next time we might adopt the buddy system for particlularly anxious children but please remind me nearer the time. What we wont be able to do is to allocate a member of staff to cover all the talks, purely because they are responsible for ensuring that we stick to the timetable, introduce the guests and help with questions and answer sessions etc. And of course, they would like to attend the talks as well. I know I missed out on a lot of talks, just arriving at the end to hurry along the guests!

but it is something we can all think about.

[lizwil]

Hi to everyone involved in organising the residential weekend!

This is a public thank you (now I hope I've worked out how to use the forum!) for all the hard work you must have put into the weekend. It was exhausting - and I'm just a stiffie who accompanied a bendy - but was an amazing opportunity to listen to the lectures and meet so many new people. We just wished it could have been at least twice as long so that we could have chatted to even more folk!

I had no idea I could find posts on the subject before we went - if it wasn't mentioned on the paperwork and I just managed to miss it, do you think you could mention a link to the forum on any paperwork for the next get-together you send (for computer-phobes like me)? Sorry - another request to add to your list!

Anyway, thank you all again - it wouldn't have happened without you!

[lisa1974]

really enjoyed residental,
what wonderful people, and that much info, well the docs are still giving me the run around, but im armed with so much info now, im sorting them out and pushing forward, i know my rights, and i know what things thay are looking for,the info was priceless.
deffinatly be at the next one, thank you all organisers xx