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Admin please read ref Support Groups

Afnoon admin sorry but tis a moan is there anyway you could perhaps in 2015-16 and beyond make a structure for Support Groupss to follow or something simuar that makes them good right across the board as the way i have been treated by the Cornwall 1 is poor and is poor enough for me to write this for you , im all for free speach and im also very charity minded but (Insert bleep here) i read everywhere how folks are getting support from their group and ive heard and read on here some excellent reveiws of their groups and in all honesty these groups should be rewarded in someway as they are superb and the folks running them giving their time and efforts to a great cause.

Perhaps its just Cornwall as it always seem to be down here thaats forgotten as per most things but what concerns me is ive never felt so alone and needed support and seeked support many times to be met with little to no result, now im not a me me kind of person im all for others but 5 -6 messages just trying to join the group or even just to get meeting dates so i too can seek others that know alot more than i with regards to the MS but also to give my wife someone to talk to and learn b ut also to have a laugh with other carers anyhows this is the final message i sent to the group please bear in mind 3 messages on Facebook fell on deaf ears but also 5 telephone calls all spread over the last 12-18 months.

Hi sorry this aint a positive message i have called and called even spoke to an older gent that said i should make a group for South West Cornwall id didnt want to make a group i wanted to join 1 he told me you have no meets my way , i got dx late last year after losing the sight of my left eye , i am 14yrs in but only found out it was MS late last year , i needed support and wanted to come to a meet , meet others and help out if i can in anyway as charity and support has been a big thing to my life being an ex-lifeboat crew/mechanic but even i felt alone as i dont know anyone with this desease , i have posted here on your wall asking when the and where the meets are again no reply nothing zilch from this group what if i was more disabled and no confidence or a voice you would just let them go quiet in the background with no support disgiusted you should be.

Now before anyone crashes and burns on me i have a real concern , what if i was suicidal because i felt so alone ? what if i didnt have a voice ? what if MS has beat the brown stuff out of me and i havent the energy to write a complaint ? what happens to the folks in those scenarios the thought is awful to thing that some out there are that bad and a little bit of support would and could make their family tree to continue to grow , anyhows im angry now and have never had top type an angry message without using a single bad word damn im getting good. I d also like to point out ive just found out meetings do take place in that group and only 30 miles away from me.

respect sheep

Hi Sheep

I can understand fully why you are angry.

If you could find out the place and time of these meetings, perhaps you and your wife could just turn up to one and speak face to face with whoever it is that runs the group.

The only reason I suggest this is because I feel your anger and I think it would do you good to sort it out. You never know, it could all be down to some communication mix up.

Good luck, I hope it all works out for you in the end.

xx

Wow Sheep! If they in Cornwall didnt know there is a problem, they do now.

Hope your quest is addressed.

Boudica type action needed indeed!

luv Pollx

Hi, which part of Cornwall are you in? I have been trying to organise something for years, but never get anywhere, love Bex xxx

Many thanks for your replies they are much appreciated if it wasnt for the folks on here id of had no support with regards to the MS , i feel okay and strong enough to deal with me but it worries me how many folks are out there with no support going on in their lives and some of the anon posts i read show me that there are certainly some folks on the edge, i hope admin do read this and pass it on to the relevant people of the Soceity so that others can experience the support too.

Yep i may be forced to try that Blossom kinda back door approach but it worries me others may not try this way and lose out.

Hi Bex yep right down West near Penzance x sorry you to have had issues

respect sean

That’s why the world needs strong people Sean, for the one’s not strong enough for the fight. It’s people like you that bring about improvements.

Take care xx

Sean if you go to the top of the main page next to where it say Forum there is a box that says Near Me, click on that and on the left hand side there is a box that says Events. If you click on that there may be something going on locally that you can go to. There should be people from your areas Society at these events. I went to a Benefit Talk and met a couple of people there.

Nest of luck

Jan x

The top of this page has the same…Sorry I always go through hoops when a little step would do!

Jan x

Hi Sean,

I can kind of see both sides of this, because any sort of support group or even social group is only as good as its members. Is it really the Society’s fault if there isn’t a thriving and highly active and efficient group in any part of the country?

From what I can gather, these groups are coordinated by volunteers who themselves have MS. When I think how I feel most of the time, it’s perhaps not surprising that the groups aren’t always a hub of enthusiasm and efficiency. I’m not saying nobody with MS is motivated or efficient, but I know I wouldn’t score highly on those traits, so I wonder if that is one of the obstacles in finding the level of professionalism and support you seem to expect? It’s run by people who are ill too!

As I understand it, they’re informal social networks for fellow MS-ers, not a professional support and counselling service.

Perhaps I’m mistaken about what we’re entitled to expect? I assumed it would be a few people with MS who might meet for coffee sometimes. That’s all the one in Bristol appears to be. I’ve never tried going to it, and have felt little inclination to. If it was as far away as 30 miles, it might as well be on the moon, as far as I’m concerned.

Tina

x

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Oh that’s a shame Sean, I’m in Bodmin, so too far away, otherwise I would have suggested meeting for coffee. Cornwall is a very lonely county to live in for people with disabilities, cos everything is so far away, If you are like me and not allowed to drive, you are stuck. Can’t use the buses (not that there are many anyway) as I can’t walk to the bus stop, and even if I could, can’t get my walker on the bus! I often go for several days without seeing anyone. Even on relatively good days, I can only go out if someone can come and get me, and that isn’t always possible, cos as good as my family and friends are, they are often very busy and just don’t have the time. I always feel like a right pain when Mum or a friend has to take me to appointments and stuff. I wish there was a way I could get out on my own and that I could make Cornwall a better place for disabled people, love Bex xxx

l have had MS for 32yrs - in all of that time l have never yet seen a Consultant Neuro who specialises in MS - l have never seen a MS nurse - apparently l live to far away from one. l am on the borders of Worcs/Warks. The nearest MS Therapy centre is Coventry - so too far for me to comfortably travel to. l went 26 yrs without even seeing a Neuro. lt was only because l needed the say-so to get Sativex that l eventually did get to see one. Apart from diagnosis - l have seen a neuro 4 times. The hospital keep cancelling the appointment - as yet never seen the same one twice.

l clicked onto the Near Me at the top of the page - entered my postcode and 0 results.

lts a MS Therapy Centre l would like to go to. Get the chance to try out some of the treatments. l do not want to be part of a group who just meet to drink tea eat biscuits and moan about their ailments. Thats not for me.

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Thanks for your replies folks and your support it means alot to me ive had more support from you folks than the ones that should be supportive so a huge thankyou your way , hi Janhh yep did that on day 1 in the magazine it shows them doing something regulary and in the near me tab it shows nothing except Dawlish which is huge miles away from us , yep Bex i know what you mean keep trying and keep at it Bex maybe soon a group will be our way , have you been to the Merlin Centre they are cracking folks there shame i wasnt closer id be there weekly , and iff i was closer id of popped up for a coffee in a pub somewhere.

What really angered me was i found out that last christmas do they kept it quiet and had a do at the Tregenna Castle Hotel which is half a mile away

Its a shame when all you wanna do is meet greet and help folks where and when you can

I haven’t been to the Merlin centre, you have to have permission from your GP, and mine wouldn’t give me permission xxx

Hi Sean,

I know it’s not much consolation, but I was prompted by your post to find out what my branch gets up to. They did do a bit more than just coffee - with exercise and yoga classes - but none I would realistically be able to attend on public transport.

Their committee meetings are monthly, at a venue I would be able to get to, but they start at 6:30 in the evening, so I wouldn’t be able to get home again (public transport tapers off once the evening rush hour has passed).

So I looked through, and concluded there’s honestly none of it I could do. As it happens, I was a non-driver anyway, and nothing to do with MS, but surely many with MS don’t/can’t drive for various reasons? So why are the times and venues so ill-suited to anyone who would be relying on the bus?

Unlike you, I have no particular urge to get involved anyway, but the point is that if I did want to (or do in future), I couldn’t. An exercise class is out of the question if it would take the whole day because of the travel. I’d be too exhausted to do it anyway. So all great stuff in theory, but unless you’re lucky enough to live next to it, how are you meant to get there? The assumption everybody drives is all too common (fed up with e-mails from Tesco telling me the great news about how much loyalty discount I’ve earned per litre of petrol - which I never ever buy). But I thought it would be less common in the MS community, where there must be a higher proportion of non-drivers.

Tina

x

What on earth was the GP’s reason? I can’t see why they should obstruct anyone with MS from going to an MS centre. Did you complain, or even ask for an explanation?

Mine okayed it straight away - but then I never went anyway. Partly transport again, and partly that the therapies, although subsidised, aren’t free - so all more money. I suppose if I was really keen, I’d brave the transport and stump up the money. I just never got really keen. I’ve only got so much energy and money. If it comes down to a choice of Art History once a week OR a visit to the MS Therapy Centre, Art History wins without even having to think about it.

Tina

x

Hi folks yep i just made contact via Facebook with the Merlin Centre asking for a tour and up i went whilst there they offered me the oxy chamber but i didnt like the portholes and being enclosed not being able to get out when i wanted to put me off as my PTSD surfaced the minute i looked through the windows but they offered loads more and i didnt need any Dr’s permissions etc

Whilst i appreciate whole heartedly the time and efforts these folks do and what they give is priceless , i.e. their time and efforts butim a firm beleiver in if you haven’t time or not interested in it anymore then step down let someone else standup and be counted as after all they are called “Branch” and they affiliate to the MS Society but being the way they are reflects badly on the Society as well

Still no reply to the message i sent them the day i started this post , im sorry volunteers or not its poor step aside as out there in the county are sufferers that need help and support as thats what most folks want is just a like minded individual to talk too and the lack of a reply by admin doesnt shine good either as it seems no one cares i.e. the group and the MS Society.

Thankfully its the folks on this forum and others that support alot of folks and maybe im wrong in saying but i personnaly think its the members of this board that should be recognised and rewarded as without the support of them some folk would have no one to voice their concerns.

respect sheep