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The UKFibromyalgia Forums • View topic - Surrey & Sussex FM Support Group has Ceased as of this month



Surrey & Sussex FM Support Group has Ceased as of this month

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Surrey & Sussex FM Support Group has Ceased as of this month

Postby PennyBlack » Wed Jul 08, 2009 6:21 pm

I just wondered if anyone else on this forum belonged to the Surrey & Sussex Support Group? I attended the last monthly meeting on Monday and found out that they are disbanding. That the office is closing the Fibromyalgia Focus magazine is stopping, the help line is ceasing and any members who were paid members are being sent a refund of their fees. And this is all because of lack of continuing funding. They've had to bail out as they can no longer afford to continue.

A trustee who spoke at that meeting said that this situation wasn't confined to the Surrey & Sussex Group of which there 3 monthly meeting venues and that the same thing was happening right across the country.

Surrey and Sussex are 2 huge counties and must have hundreds of FM sufferers, as there must be up and down the UK but from what I've read here unless I've missed something, no-one has made any comment at all about this having happened.

I know for a fact that the Guys Hospital support group and a couple others in London are alive and well and thriving :?:

As this is a UK FM forum I'm assuming it supports all of the UK and would be interested to know how many other members/areas are also suffering the same fate and where they are now going for information and support and what phone contacts there are available. The web site for Surrey and Sussex giving all the information of contact address phone numbers etc will no longer apply so we won't have anyone at all it seems.

It is tragic that such a thing happened just because of lack of funding. There should be central government ongoing funding to help support groups such as this for the public especially as there are only a very limited amount of dedicated FM recognised treatment centres across the country.

A specialised FM clinic based at the Princess Royal Hospital in Sussex was stopped due to lack of government funding. This is so very wrong. People are ill out there and need proper ongoing treatment but there are still so many doctors who still refuse to accept FM even exists as well as other organisations such as benefits office, local authorities. FM sufferers are fighting desperatly to get DLA and others have had it stopped. People are losing their jobs and not being signed off because their GP won't put FM on their sick notes and employers aren't believing their staff's reasons of absence. Physio departments are turning FM patients away telling them its pointless to give any physio for a problem that won't get better.

On various forums I've read many horror stories from people who just aren't getting treated at all and desperate to know where to turn. There are also many people like me who have a hyper-sensitivity to prescribed medication and suffer too much with side effects to counter balance any possible relief so have to go cold turkey all the time and endure the sleepless nights, pain, cramps and spasms and other awful symptoms FM people get.

What does the future hold for all of us ??? :needhug: :cry:
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Re: Surrey & Sussex FM Support Group has Ceased as of this month

Postby gillshutt » Fri Jul 10, 2009 7:11 am

Sorry to hear the group is closing. Could you not keep in contact with people from the group and maybe have informal get to gethers?

If anyone ever need help then you can always phone the helpline
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Re: Surrey & Sussex FM Support Group has Ceased as of this month

Postby PennyBlack » Tue Jul 21, 2009 7:02 am

I can't actually believe that no-one else living in these 2 counties who I know are members on this forum haven't replied to this.

The specific forum board set up for this group is a nightmare to get onto as as you have to join something called network 54. Once you're on that forum you then have to track down the surrey and sussex group forum. I've managed to struggle onto it a few times but most of the time I just can't get on. One of those few occasions was this morning and I was frustrated at what I saw. There's hardly any members there and despite me having posted a similar thread as here about the demise of the group only one member replied who lives in another part of the uk and simply expressed a brief comment and that was it. No-one else has said a word and I find this so very hard to understand.

Considering all the hard work the founder went to in initially setting up this group and getting it off the ground, the lack of interest generally must be heart-breaking for her and I find it so sad. With that sort of apathy no wonder the group closed.

The surrey and sussex support group website has been amended somewhat but still not much information is being given out and its because there's still one 'road show' meeting left to do on the 28th July in surrey. So those members from around the Long Ditton and Epsom area have yet to hear all the bad news which is probably why no-one seemed interested to know what I had to report from the Horsham meeting. Unless people are being gagged until the last meeting has been held, which seems a bit ridiculous I know but it does make me wonder what on earth is going on.

I just don't understand the total silence by all those members of the group and why nothing is being discussed on that forum at all. Then again as its so very difficult to get into maybe thats a lot of the problem. The forum is owned and run by one member and is so secure that everything needs validating. Its so frustrating and disheartening not being able to freely access that board as one would expect of any other health related forum. It isn't made to feel welcoming at all. Thank goodness this forum is here. But again, no-one else seems bothered about any of this so what I want to know is where have all the members of the surrey and sussex support group disapeared to?

How are we all supposed to keep in touch with each other when it seems they've all just vaporised into thin air? :cry:
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Re: Surrey & Sussex FM Support Group has Ceased as of this month

Postby gillshutt » Tue Jul 21, 2009 8:43 am

If you want to talk to anyone in partiular on here you can always send them a pm which would keep it private. I am so sorry that the other forum is so hard to access but everyone is welcome here and you can always get advice and help with anything.
Gill x
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Re: Surrey & Sussex FM Support Group has Ceased as of this month

Postby *Lisa* » Tue Jul 21, 2009 10:23 am

Sorry to hear that...

Im in Herts and theres nothing!! :shock:

Totally alone BUT my physio says loads are given to her by the Rheumi at the local hosptial :dunno:

Thats why i am glad for these main forums :clap:

As Gill said we are all here for you :hugs:
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: Surrey & Sussex FM Support Group has Ceased as of this month

Postby janham » Tue Jul 21, 2009 12:55 pm

Hi Penny

I have been watching your post and read the recent release by the trustees of SAS. Like Gill I am here for you - willing to pick up the pieces if this helps. I do appreciate the great work Gill does for you but if you have been used to getting together for tea and chat, no doubt you will miss this if it is not available.

I know Janet your Regional Coordinator has family problems and sadly she is out of action at this time which just makes matters harder for groups. But as another FMA UK Regional Coordinator for neighbouring counties, Hampshire and Berkshire, Bucks, as well as a paid up member of SAS, I am willing to help groups get organised. There is no catch, no fees, no commitments - no wish to take over the world - this is just a labour of love from someone who is a very good friend of Jo Fisher. Due to her own full time commitments she is unable to step in and help but I am sure she would want me to send her love and hopes for this to be sorted.

As you say it must be heart breaking for Jo to see her years of hard work disintergrate.

If anyone needs help to pull their group together, I am happy to be of assistance and share my knowledge to get your group back on track.If you are in the Chichester area you can join us for lunch. If you are in the Waterlooville/Horndean area, come to lunch. I also have one member thinking about starting a Bognor & District group, so that might be of help. If you want to start your own group I can help there too.

It is sad to watch it all falling apart due to lack of direction and funds. Having said that I must pay tribute to both Stella and Tony, both trustees from Jo's days, who are, I believe, managing to keep Horsham and Worthing going.

But today, tomorrow or in a month if your group needs help get in touch with me. Send me a private message and we will work together to sort it out.

Take care and good luck

Fibro hugs, Janham
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Re: Surrey & Sussex FM Support Group has Ceased as of this month

Postby PennyBlack » Wed Jul 22, 2009 12:26 am

Thank you Jan I felt so much emotion eminating from your words. It is so very heartbreaking. I never realised how much I 'leaned' on the support of that group until I witnessed it fall apart. Janet Boniface wasn't at that last meeting, the lady who manned the office 3 days a week and so much more. How she must be feeling now I can't imagine, the work she did was a very important part of her life. And Jo Fisher, yes I know Jo well and the difficult times she's coping with on a personal level at home at the moment. Tony too has done as much as anyone can in trying to hold everything together but - as was explained, without ongoing, reliable and consistent funding then what we had couldn't continue.

I thank you too for your open invitation to the areas you mentioned but sadly I live miles away from them all. I also no longer have a car. As for where I currently live well, I'm on the transfer list as my accommodation is totally unsuitable for my mobility needs and I want to move back to my home town to be near my two remaining members of my family. So for that reason alone I would be unable to give any commitment regarding setting up a group myself. All I can do is meet with others for an informal meeting but as yet, I know of no-one and heard of no-one who has expressed this wish.

However, I recently had an email from Stella, the lady who mans the website and it appears that there will be one last meeting in Horsham on 3 August 7 - 9pm to see how many members are interested in continuing informal meetings. So there is a little glimmer of hope on the horizon. I hope I'm well that evening to attend but as we all know with fibro each day is like playing russian roulette!

Whenever something heartbreaking happens, somehow, somewhere the 'universe' always seems to balance out the bad with some good. The good I can see out of this tragic loss of a support group is that is should shine out as a message to all other support groups currently still existing in the UK. To all those group members - the message that this brings to you all which is - if you want your support group to continue to be there supporting and helping you, then you as one of its members must too be strong and support its trustees and admin team. Its YOUR group and its there for you. Its sad that we have to fight to hold onto what we need so much but one day we may be lucky enough to get the proper recognition and government funding we deserve as do so many other charities. Only that day is not today but hopefully in the future.

Jo Fisher's hard work must not be forgotten, someone somewhere must take up the batton and carry on. She pulled together a support group and sent the message out far and wide to all fibro sufferers so they did not feel alone and isolated - and it worked. She proved it can work. She made a dream become reality, but sadly our world is governed by money, without which little seems to be able to be achieved. What I feel the members of the Surrey and Sussex support group should be feeling is gratitude and we owe a debt to Jo a debt in that we should show our gratitude by continuing to stay united, in touch with each other - even if this means huddling under an umbrella outside a coffee shop on a Saturday morning. As the saying goes - united we stand - divided we fall.

So any of you members on this forum who may have been members of the Surrey and Sussex support group - put a note in your diary to try and attend the final meet up at the Age Concern room in Lavinia House in Horsham on 3 August at 7pm. Don't let Jo Fisher down and more important - don't let yourself down - if we want to our little group to survive then we need to work on what CAN be salvaged. :grouphug:
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Re: Surrey & Sussex FM Support Group has Ceased as of this month

Postby LinzWorld » Sun Jul 26, 2009 6:43 am

Other groups are struggling as well - I've seen it across the country. Not many are closing, but a lot are periodically struggling to keep people enthusiastic about helping out and attending meetings. SAS got pretty big and well organised with the office and everything but unfortunately that did mean that there was more to maintain and the office and magazine in particualar required a lot of ongoing funding. It's often a burn-out issue - people with Fibro can't often run groups forever. Even Jo Fisher had a hard time as the years went on and life and Fibro intervened. The Guys group is new so no-one has burnt out yet and it was started with funding secured by SAS so it had a head start on many other new groups that begin with no funds.

If you have a local group and want to continue to have a local group, it's necessary to attend meetings, support events and volunteer to help with the committee. Too many people seem to think "someone else will do it" and often everyone in a group has Fibro so is in the same situation.
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Re: Surrey & Sussex FM Support Group has Ceased as of this month

Postby unigirl1981 » Thu Aug 13, 2009 9:15 pm

i agree with how angry you are at hearing this. i am also angry at the lack of funding (ie none) that groups get. And i feel soory and what your groups members and committee have had to go through before deciding to eventually disband.

i started my town group and it took months of effort, hard work, flare up of my fms ect to find members, a venue, rates, bank account, committee members, childcare for when i have my meetings, advertising ............................goes on forever.........

some meeting days i feel really really bad but i still drag myself there because i feel so passionetly about other people with this condition and about how info should be shared and support should be given. Lets face it if we waited for the government to stick their neck out and offer us friendship and support we would be waiting a very long time indeed.

all i ask at my group is people give a small amount per meeting and that covers EVERYTHING (just)

i get no finding from the government but i bet these groups save tham loads of money from people who come to us, have a good time, share a bit of information and feel better equipped to deal with the fms themeselves.
Just because you have to park in a blue bay doesn't make you any less of a person!

I am the Chair of Doncaster and District Fibromyalgia Support Group; working with FMAUK and loving it.
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Re: Surrey & Sussex FM Support Group has Ceased as of this month

Postby StellaB » Fri Mar 19, 2010 8:45 pm

I have not visited this forum for a very long time so I was VERY surprised to find this thread.
The Fibromyalgia Support Group for Surrey and Sussex has not ceased! No groups have closed down and in fact some new ones have been formed. The Trustees did not close any groups, they said that groups would no longer be centrally organised and that if they wanted to continue they would have to be self organised and self financed. And that is just what happened. The meeting held at Horsham on 3rd August was not a final meeting. It was convened to discuss with members what they would like to happen in the future. They opted to continue with meetings. An alternative group was formed in Horley for people living further north. The Worthing area group restarted, based in Ferring, in January with a different structure. More people are taking the initiative and getting on with the job. A new group is starting in Brighton on 1st April 2010 at 2pm at the Devil's Dyke Pub. A full list of fibromyalgia support groups in Surrey and Sussex can be found here http://www.fms-sas.co.uk/fmsmeetings.html New people are always welcome at any of the meetings.
The trustees are keen to assist anyone wishing to start new groups. The needs of fibro sufferers are still at the forefront of the new trustees who now manage the charity. Communications are limited because of printing and postal costs but there is always the website, where information can be obtained,- http://www.fms-sas.co.uk - members with an email address can opt to receive a weekly eNewsletter giving up-to-date information about fibromyalgia and associated issues. The charity is not dead, it is just being managed differently.
If anyone reads this I hope they will realise that things are not always what they seem at first! We have members' best interests at heart.
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Stella
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