MS Therapy Centre - chocolate teapot comes to mind

Everyday living
1

I’ve got the next few Mondays off - lucky me!

Instead of sitting around and wasting it, like I always do, I thought: “Why don’t I book up for some lovely complementary therapy - aromatherapy or something - at our brand new local MS therapy centre, newly opened this week?”

So rang up to try to find out some basics, and whether there’s any chance of booking anything lovely for one of my days off.

Absolutely useless! Apparently, you can’t make appointments for anything over the phone. When I enquired about aromatherapy and/or reflexology, she said: “Ooh well, I don’t know; I’m not the aromatherapist, you see.”

Well what DO you have to do, if you want to make a flippin’ appointment? They only publish one number on the website, and that was the number of Main Reception - which I rang. They didn’t have a separate number for “appointments”.

Then I asked whether you can book one-off sessions, or whether you’d have to commit to a course (useless for me, as I work full time).

“Ooh noo, you’d have to commit to a course”.

“Er, well…that’s a bit tricky, as I work full-time, I only get the occasional holiday. Is there no way I can have just a one-off session of anything?”

“Noo, well, I’m not the aromatherapist, yer see. We’re only open weekdays…”

“Yes, yes, I know that. That’s why I’m asking whether I could book any one-off sessions that would fit in with work”.

And the final nail in the coffin? I’ve got to get written permission from my GP to have any of it - even completely non-inasive stuff like reflexology or aromatherapy, that I could have on the high street, no questions asked.

As I can’t even get to see my GP for a fortnight - not that I think it’s any business of hers what complementary therapies I choose to pursue - I have zero chance of getting written permission for weeks, let alone in time for my forthcoming days off.

So all a complete waste of time even asking.

I’ve already got disillusioned at the very first phone-call, and am thinking I could have complementary therapy absolutely anywhere, and there wouldn’t be this level of vagueness or red tape. How can you ring reception, and it not even be possible to do a simple thing like book a session?

I do understand why some things, like the HBOT, can only be booked in blocks, and might need the OK of your doctor. But I wasn’t even interested in that. Just thought I might be able to get a nice, relaxing, aromatherapy massage.

Fat chance.

I shall either go elsewhere, or (most likely) not bother at all. But I’m not at all encouraged to pursue things with the therapy centre.

2

Honestly, what a palarver! These centres are supposed to relax us and make us feel better…not end up spittig feathers with just one initial phonecall.

I joined something similar and had to have a letter from my doc. Plus I couldn`t have a one off treatment. They said a course was necessary and payment was required up front. i declined as how do we know if we will be well enough to attend these appointments?

Calm down, and have a relaxing camomile tea…or a glass of wine. and put a calming cd on, eh? And with the money saved treat yourself to a new frock!

luv Pollx

3

Thanks Poll,

I know it’s silly, but I really did feel wound-up (Guess you could tell that from my post). I started getting crampy pectoral muscles, which I know is an MS thing, but I’ve noticed lately is directly related to stress.

I found it a really negative first contact with the organisation, and just ended up thinking: “This obviously isn’t for me - or for anyone who still has a job and a life”.

Yeah, retail therapy beckons. :wink: I can’t usually clothes-shop on a Saturday, because the queues for the changing rooms are too long, plus it’s my grocery day, and I can no longer shop for both on the same day.

But if I go clothes shopping one Monday, there won’t be any horrid queues, will there? :wink:

T.

x

4

Hiya

Re the phonecall-I share your frustration!

However-I feel that I need to pass comment re the Dr’s letter request. A genuine and caring practitioner would ask for this as routine. I am not a reflexologist myself but have friends that are. I practise another therapy and its so sad that complimentary therapies are becoming a target for the sue culture.

Tina, may I suggest word of mouth for any therapy you may be thinking of trying? Or speak directly with the practitioner (which sounds impossible if your initial phone call is anything to go by!) and any genuine one will tell you where they trained and answer any information that u request at no charge.

Before any commencing any complimentary therapy I would suggest that you ask re ‘healing crisis’ and how they suggest that you would deal with that. (In fact,I will send you info re it myself!)

Hope you find this information of some use…

Ellie x

PS On a personal note-I did have a negative reaction to reflexology-and it was because of a diagnosis of MS. But as I said before, I practise a therapy so knew exactly why it happened-but I can imagine it would be rather scary if you hadnt been informed of its possibility beforehand.

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Hi Ellie,

Thanks for that.

I did ask my doctor ages ago whether there were any complementary therapies I definitely shouldn’t have, and she seemed to think there were no special cautions or restrictions with MS, and that whatever I wanted was OK. She was even quite open-minded about reflexology, and suggested there were some possible mechanisms why it might work.

But needless to say, I didn’t get any of this in a framed certificate, because I didn’t expect I’d be needing it. :wink:

So I’m sure she wouldn’t oppose whatever I want - it’s just the extra bureaucracy of needing her OK, and I really don’t think it’s up to her anyway. What if I had a doctor who was vehemently opposed to all that, and wouldn’t sign the approval? Would that mean I couldn’t have the therapy of my choice? Isn’t it my risk, and my decision, not that of my doctor?

Haha - thanks, I’ve got your mail - off to have a read. :slight_smile:

I totally forgot you had my addy - I’m going mad(der), I swear it!

T.

x

6

Hi again

You have just reminded me-I understand there are proper studies going on somewhere in London re reflexology for bladder problems in MS! This is 3rd hand news! LOL My friends neurologist (I dont know the man) keeps very up to date with whats going on re MS developments and he had in fact attended the seminar in London last year investigating this new idea. He must have thought the trip worthwhile cos hes even further north in Scotland than me!

Ellie x

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Tina,

How frustrating for you - ls there a ‘college’ near you that teach any of these therapies. The reason l ask is, l went quite regularly to one near me for aromatherapy/reflexology and best of all Sports Therapy Massage. The students were all well supervised - and their tutors very interested in all the problems associated with MS. The sports massage was very beneficial. ln fact, one of the students started coming to my home to treat me - as he needed a certain amount of 'patients’to pass his exams. He worked hard on my leg muscles and really improved the condition and tone - and he even videod me walking so that he could see if he had improved my ‘gait’. l can’t remember what l had to pay - but it was a very small amount. There was also manicures/pedicures/facials and hairdressing. So you could have a real treat.

l know the aromatherapy tutor knew quite a bit about MS and did print out what essential oils were best for me.

Hope this has been helpful.

F.

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My local therapy centre has a standard form for GP’s to confirm there is no reason why you should not have treatment. You certainly don’t need to book an appointment and posting the form will do the trick. I suspect this is just a bottom covering exercise, in the unlikely event that anything goes wrong. In any event it should only take a few days to rubber stamp and it would be a pity to miss out on a potentially pleasant experience over such a simple request.

Perhaps you could send them a mail and hopefully get a better informed reply.

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I went go to a ms drop in centre,where they offfer complementry theapies,therapiswt fist session chatted with you,and took notes,after tht sshe gave u 6 sessions of therapy,then fonedd u back when she had space again no mention at all of doc letters or anything,just got on with it

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Hi Tina, first up, lucky you getting the next few Mondays off, now I’m jealous, I’ve been planning to take a day off for ages, it’s not that work won’t let me take one either, I guess I have just been lazy organising it,lol as for the ms therapy centre, I agree that that sounds quite hopelss, I’ve ony been to our centre once ad that was many years ago, in some ways I would like to go but in others I guess I am a bit nervous, prob because I won’t know anyway. I actually triec reflexology,again many years ago, not at the ms centre , I just arranged it myself, I didn’t have to get my doctor to agree to it either. I felt quite good for it too. Anyway enjoy your days off whatever you do, guess the retail therapy sounds not too bad, I’m not a bigger shopper myself, and I really find it too awkward to go to changing rooms these days, however I do quite enjoy shopping on line. Cheryl:)

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, I suspect you live near me.

I live a couple of miles away from the newly opened MS Therapy Centre in Bradley Stoke. As the crow flies, that it, not by road as any one who knows the lovely roads of Bradley Stoke might have guessed :wink:

I have been thinking of paying them a visit myself. As I am off work going during the day is not a problem for me. It might help me get back to work. I can hope.

I have not looked into using the therapy centre before because Nailsea isn’t close enough to be useful. I’d have to have someone to take me there, but I can cope with the short drive there now. As long as they have a cafe so I can gather my energy should I need to. And check my blood glucose levels as instructed during my last diabetes review. The DVLA says I should check my blood glucose levels before I drive because the tablets I take may (and do!) cause hypos.

I’ll let you know how I get on.

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That does sound particularly unwelcoming, but I’d not write it off next. Could you arrange to go and in and speak to someone properly on one of your days off, might be worth it to find out whats what from someone who actually knows.

I have recently been attending my local one for HBO and everyone has been very welcoming, and it has been useful for me to meet other people in various stages and states of MS, as I don’t “know” anyone else in real life with the condition.

Definitely get yourself something nice arranged for your day off too though, a little spot of shopping and a massage!

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I’ve been to the MS therapy centre which is sadly no where near me. They didn’t require any written consent from GP although I do think they inform them. You speak with an MS nurse on first appt who then can recommend what therapies (aromatherapy & reflexology etc) can benefit you. You then speak to a physio who advises on what other therapies can benefit you. Like physiotherapy, exercise classes if you have limited mobility and maybe HBOT I think if they recommend HBOT they would require doctor’s conset. For the people who find it easy to access these places they can be a godsend if you can’t it’s an annoying side to the postcode lottery.

I do recommend getting some therapies even if it helps you in mind more than body. I’ve had reflexology and was suprised when they could tell exactly (and I’m talking 99% precision) where I get back pain and I wasn’t even sore at the time.

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I just thought I’d point out that the therapy centres have no connection to the MS Society - I’d hate anyone to think badly of the society after your experience. The MS drop in centres, however, probably are run by MS Society volunteers.

Contact your local MS branch. They may have things going on that would interest you.

Liz

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Yeh, Tina, maybe Mondays would be less crowded. I now go shopping with 1 or 2 of my carers. They look for things for me, which i have said I want. In one department store this week, i chose a lovely caramel and cream waterfall cardigan, but none of the 3 of us could find a top to go underneath it, in the right colour.

So Iasked an assistant and she went straight to the perfect match. So I had 3 women helping. it felt good and I don`t try on often, as it is a hassle when I am wrapped up like heidi to keep out the cold!

I also like to buy clothes on-line, if I can`t get out.

I never have trouble spending my pennies!

Enjoy your retail therapy too, …nowt like it!

luv Pollx

16

Anitra I’m sorry to hear you had a frustrating experience on the phone to your local therapy centre. I know that at the centre I go to all the people on reception are volunteers who only work one shift a week - I know that shouldn’t be an excuse for giving poor service but may help to explain why they might not have been completely on top of the facts when you rang. The therapy centres aren’t businesses and I’m sure they do their best to help and support people with MS, even if they sometimes fall short in some ways - why don’t you go over and visit, or see if you can meet the manager or admin staff, possibly help in some way (I know you work so am not suggesting you commit loads of time!). Although I am too busy to attend for physio these days, I still do various things to help at my local centre. Whatever the outcome, I hope you enjoy your Mondays off and find something to make you feel good :slight_smile:

Best wishes

B x

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I popped into the MS Therapy Centre in Bradley Stoke this afternoon.

They opened last week so there are some teething problems, not least because not everyone who worked or volunteered in Naisea could ‘relocate’ from Nailsea to Bradley Stoke.

I am going to fill in the forums and get going on using the centre - the information pack with forums for ‘us’ and our GP can be downloaded from the website.

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Hi Ellen,

Let me know how you get on with the actual therapies (should you decide to have some, of course).

They said they were going to put some stuff in the post to me, but I guessed it wouldn’t be any different to what was already on the website anyway.

Are you any closer to finding out how you actually book something? Can you only do it in person? Because that was the main point where it fell down for me. I couldn’t find any booking Nos. online, or even a way to get in touch with individual therapists for an informal discussion of suitability (or not). So I thought ringing Reception would be the way to go, and that they would either be able to book me something on-the-spot, or put me through to the right person.

In fact, I came off the phone no wiser than I’d started - and nothing’s turned up in the post yet.

I’m not going to go ahead and join, if I can’t even verify whether it’s true that I couldn’t have “one-off” appointments to fit in with work. If you have to commit to a regular weekly, or even monthly slot, it would be a complete waste of the subscription money, because I wouldn’t ever get to use the facilities.

I suppose, looking rather on the bleak side, if I’m eventually forced to quit work or reduce my hours, I might be able to sign-up for something. But until then, there’s no chance.

Tina

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Did you know that (I think I’m right in saying that) MS Therapy Centres are charitable organisations and are legally hospitals?

So they’re bound by the same regulations as NHS hospitals in many respects and can’t give ‘outpatient’ treatment without your GP’s consent - though this is probably also wrapped up in insurance matters too and historically stems from the days when High Density (formerly Hyberbaric) Oxygen Treatment (HDOT or HBOT) was their principal raison d’etre.

Alas, I’ve found the Therapy Centres quite hard to deal with on all counts in the past, but they’ve all been very nice people, just very busy (because of the number of us) and constrained by systems. Your best bet is to turn up there, register, talk to them about your requirements, engage with other members, and build from there. All during your lunch-hour, by the sounds of it.

Lolli xx

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The West of England MS Therapy Centre

http://www.mstherapybristol.org.uk/msbristol/index.html

If you want to drive there and use SatNav plug in 121 Wheatfield Drive, Bradley Stoke.

It’s in the middle of a houseing estate so be ready for windy roads and houses with very little parking. The centre has good parking, so don’t worry about that, just dodging the residential parking.

I forgot to ask about booking treatments, but I think the lady I spoke to said to turn up when there is a session. To use the centre you have to become a member of the centre, which costs £20

And agree to help fundraising, though the lady who showed me around said they don’t follow you around hassling you to fundraise or anything like that! IT’s costs at least 300,000 a year to run the centre, all from fundraising alone. Which is why they encourage you to help fundraise. A lot of the volunteers have MS themselves, but I don’t know what percentage do. So they really do understand that people do what they can, but not everyone will be signing up to run the London Marathon in fancy dress!

I’m looking forward to giving some treatments a try. Oxygen Therapy was recommended! The centre hopes to have the MSSociety supported CAB adviser running a monthy session at the centre to help us with things like claiming benefits. I intend to get going on claiming DLA - assuming I feel strong enough to!