Monday, February 08, 2010

MS Centres.

A friend in Scotland told me about The Revive MS Centre which is a great resource in Glasgow and the West of Scotland.

They have physiotgherapy, aroma, reflex, hyberbaric, counselling and socialising amongst a list of other activities.

There are MS Centres like this one in all major towns throughout England, Wales and Scotland.

At all the centres the following is available:
Magneto Therapy
Advocacy Service
Complementary Therapy
Dietary Advice
Day Care
Drop In Centre
Support Group
Speech Therapy
Tai Chi
Incontinence info and advice
Vibration Training
Zone Therapy
Hyperbaric Oxygen Chamber

the MS Centres sound excellent sadly there is nothing like that here.

There is nowhere you can drop by and meet people or make use of resources.

There is the Dutch National MS website

Which gives you some information but little else, it is not a meeting place not even digitally.

Here the MSVN Amsterdam website can't be used for anything but to read.

They seem to have less on their website in 2010 then in 2006.

I tried to put a notice about starting a Skype groups for thosed who are not mobile, who wanted to talk with a group of MS’ers, they would not place it.

In Amsterdam they organise a monthly cup of tea for 2 hours from 3 to 5 pm at the offices of the Amsterdam Handicapped Organisation (SGOA) from September to June.

They also are supposed to have specific themes for these get together’s, this year there is only one about tax and what you cam claim back.

Once every two months there was a discussion evening where a topic was presented and discussed.

The people that go are one small group who live nearby, they also used go to the monthly swimming session.

The MS Swimming Group only catered for those that still have some mobility.

The swimming pool is specifically for disabled swimming yet had nothing to hoist people neither in or out of the water nor from bath chair to changing table and wheelchair.

Just could find any mention of swimming on the website, so think that has stopped too.
MS Centres would be brilliant here and well used to; in my neighbourhood there are 16 people with MS that I have heard of.

What a shame that the MS Society website is just that and does not offer any tangible support, how can you be supportive without doing anything.

Maybe I am cynical but it looks like a nice job that does nothing apart from make those volunteering feel so good.

‘’ Oh I work voluntarily for MSVN ’’

I am no longer a member of the National MS Society found it had nothing for me whatsoever.


Travelogue for the Universe said...

Those MS centres sound wonderful!We have the clinic which is clinical and everyone keeps to themselves.I enjoy more MS support online and appreciate reading your blog, Herrad and some others I follow.We all live in the cold climates where most MS is found.Maybe find some people who want to support a version of that like a health food store.They could volunteer to visit you and people could donate products. We have a few accessible pools in Vermont-mostly for physical therapy. Great post! Love, Mary

Webster said...

When I worked at the NMSS I often felt helpless to give the assistance that was truly needed. Sure, I could send some pamphlets and articles on all manner of symptom management. I could recommend support groups if they were lucky enough to live near one. (But as we all know, support groups are not always that supportive). Then I found out that the list of doctors we had was hopelessly out of date! It hadn't been reviewed in many years - some had retired, others were no longer accepting new patients. Arghhh!

We offered a little money for equipment for a few people, but they had to jump through hoops to get it. We didn't make it easy.

Now, ten years after I'm out of the office, I call and get the voice mail run-around. It's disgusting.

When an information lecture about a new drug is offered with a free dinner do I go? You betcha! Free food and validated parking gets me every time.

Herrad said...

Hi Mary,
The centres in the UK are partly funded from contributions but also from the national health service.
So if your doctor refers you everything is free for you to use.
Like your idea of people donating time and products sounds good.
Glad you liked the post.

Hi Webster,
I am amazed to read that what I saw here from the outside is what you saw from inside.
Basically an information service and nothing to do mostly with real concrete tangible support.
The UK model is the better in that there is tangible support, plus you can meet [people informally.

Thanks both of you for coming by, really appreciate your comments on this post.
MS Centres like in the UK seem to me to be what we could all do with.
Especially like the social aspect of such centres, that was the aspect that made the Amsterdam Rehabilitation clinic so good was the fact there was a cafe for residents and poly clinic patients plus visitors could pass by the cafe, I found it very pleasant.
Have a good day.
Keep warm.