Support groups

[Palgeo]

I’m planning to set up a support group in Norwich as there has been some interest shown by Norfolk people. Is there anyone out there who has experience of doing this and has advice? I’m proposing to book a table in a cafe with nearby parking and a bus route. The purpose is informal chat, shared experience but not for medical advice. Frequency: every other month? Thanks in anticipation.

[Queenie1901]

Well done. The charity will support you all the way with this so do contact them. I also contacted my local hospital Rheumatology Dept and we are very lucky that they support us with question and answer sessions, various speakers from the hospital including consultants, physios, nutritionists, Arthritis Action, and more. At other meetings we get together and share worries and experiences.

[PMRpro Ambassador]

Contact the Admins - Penny ran a group if I remember rightly and the charity does provide some support.

Some rheumatology departments are delighted to help out because they realise that it can help them too.

There are several who have started up and run very successful groups but it doesn't have to be massive to start with - 2 people meeting for coffee and a chat is still a support group! There don't have to be speakers and events at first, get a few people together and find a suitable venue that suits most. Then see how it grows.

Rugger started one in Yorkshire, she is a fund of knowledge.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Penny still does -as well as the monthly zoom one.

[PMRpro Ambassador in reply to DorsetLady]

Thought so - but couldn't check!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Orpington one I think but your suggestion to contact admins is best way for booklets etc..

[PMRpro Ambassador in reply to DorsetLady]

I assume any financial assistance is no longer there?

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

I don’t know to be honest… but can remember Penny and another lady who also runs a group saying they had got quite a few copies of the exercise booklet when it first came out.

[Rugger in reply to DorsetLady]

We've never had any financial support from the charity - but have never asked! If we've needed money to hire a room or to give a gift to a speaker, those attending have contributed.

The exercise booklets are free of charge - well, at least for single copies to individuals, so I can't imagine the charity would charge a group.

[DorsetLady PMRGCAuk volunteer in reply to Rugger]

No neither would I, but I was thinking more of postage… etc..

I’ve been to a couple of groups over the years, and they were always in garden centre cafes or pubs - with no charge - but then the venues were on to a winner anyway. Not ideal if you wanted something more formal though.

[Rugger in reply to DorsetLady]

Our group usually meets in cafes - 2 of those are in Shopping Malls for some retail therapy before or after the meeting! 🛍️ We have met in a church hall, where there was a charge. In Leeds we meet in the John Lewis store which has a 'Community Hub' (windowless room with regular tannoy announcements ☹️) available to hire free of charge for charities, but booked in advance, as it's very popular. There are endless possibilities, but we choose locations that have access by public transport - train and/or bus, or Park & Ride.

The postage for leaflets etc has to be one of the charity's costs - they get an awful lot for free from us volunteers - you and PMRpro in particular. 😘

[DorsetLady PMRGCAuk volunteer in reply to Rugger]

Hmm… pity some don’t realise how much the forum actually does. Helpline always gets mentioned in dispatches, but we seem to slip under the radar… 🤣😂

[Rugger in reply to DorsetLady]

Not in our eyes, you don't. 💐 🌻 🌹🌺 🌷 🌼

[DorsetLady PMRGCAuk volunteer in reply to Rugger]

Yes but you are a prolific member as well... some of "them up there" aren't! But 'nuff said.. 😊

[Rugger]

I helped set up the Yorkshire group 7 years ago, so am a bit rusty about the early days! There are 4 of us who now share the group's organisation. I am now in the back seat!

Definitely contact the Charity Administrator for advice and some leaflets and literature to hand out to any new people. Put a few leaflets on the table in the cafe so that people can spot you as they come in. In due course they will set you up with a "norfolk@....." email address to receive enquiries - it's advisable not to use your personal email address for the group's mailing list! 🙄

When you've decided on the venue, date & time for your first meet-up, put a post on here and wait and see who turns up! The charity will also put details on the website once you are up & running as a named group. Take a sheet of paper so folk can 'sign in' and give you their contact details, diagnosis and even H U alias - all optional disclosures, of course.

You are right to have 'ground rules' about not giving medical advice, but sharing experiences. That way, people will give and take from each other what is relevant - the meet-ups are like a face-to-face version of this Forum! 😉 Make sure everyone has a chance to ask questions if they want to.

Pre-Covid we had good attendance and did have talks by our local Rheumatologists. During Covid and since, the group also meets via Zoom. As Yorkshire is a very large county, we meet in 4 locations, with relatively small numbers attending each, therefore we keep the meet-ups for informal support. Small numbers sitting round the table in a cafe are more manageable than a large group. When / if the group grows, you may consider paying for a private room somewhere, with contributions towards the room hire. You might even find a private room free of charge that one of your members knows about.

Have a look on the Charity's website for ideas of where and how often other groups meet. Every other month sounds good.

All the best and well done for volunteering to do this. The charity would be very different without its volunteers. I have gained far more than I've given over the years.

[tangocharlie in reply to Rugger]

Well said and explained Rugger. You do a great job with the Ilkley meetings

[PMRpro Ambassador in reply to Rugger]

There have been rheumies who managed to organise the use of a seminar room in a hospital.

[Rugger in reply to PMRpro]

Yes, there are lots of possibilities, but in a way it's nice to be away from the NHS environment for a while! If the Rheumy was giving a talk to the group, it would be a good idea to ask them if they had a room available - maybe in the Education centre, if there was one - a bonus for the speaker to not have to travel.

[tangocharlie]

Good for you, it's a great thing to do for you and others. I'm another one of the 4 who run the Yorkshire group. I got into it as it was so useful to me to meet people in the same boat.

As others have said contact Charon in the first instance to get all the admin help like an email address. She also co-ordinates Group organisers meetings where we all get together on Zoom about 4 times a year to share ideas and tips.

[Rugger]

I should have mentioned the most important thing - that is, to encourage folk to join the charity and pay their £22 subscription! It's not a condition of attending a Support Group or even being on this Forum. However, people get so much out of being part of the Community, that it is good that they should give something back and support the charity. There are benefits such as receiving the NewsWire newsletter and joining the online meetings.

[DorsetLady PMRGCAuk volunteer in reply to Rugger]

Quite agree - and £22 pa is peanuts in the great scheme of things... 10 [or less in some places] cups of coffee! ☕

[Longtimer]

Good to hear!...I am in Norwich..several years ago there was a support group, it was held in Nottcutts....plenty of room and very large carpark, which you are probably aware of. Hope this helps.....good luck.....

[Zebedee44]

Hi, well done for volunteering to start a local support group. This forum is a great place to exchange information and advice and find support but face to face engagement is equally important especially if ill health has made us feel isolated.

I’m just taking over a small group in Hastings so all this information has been very useful to me. Big Thankyou to Rugger for passing on your knowledge and experience.

I thought it wise to check out possible meeting spots and found that local parking could be an issue, the cost of it and proximity to possible venues. Sadly a beachside cafe was out of the picture with parking charges at £2.60 an hour even out of season. In Hastings the shopping centre has excellent parking, walkways directly to the shops and vehicle number plate recognition, so no need to find and use the ticket machine in a dark smelly corner, and £3 for three hours. As an older woman these sorts of considerations matter, as much as the friendly atmosphere in a cafe and the quality of the loos.

Charon Barbone is the volunteer support group liaison and has helped me take over the log in and email for the Hastings group so I’m sure she will get you started with your new groups identity and then it’s just a matter of finding the people in your area who would like to come along. Not everyone with PMR or GCA reads the forum or has membership of PMRGCAUk so I’m thinking of posting on my local Facebook pages too. Good luck getting up and running, wishing you all the best, Chrissie

[PMRpro Ambassador in reply to Zebedee44]

DO you have a decent P&R system? With a bus to a nice venue?

[Zebedee44]

That’s a good idea, I’m not aware of one, but having not lived here for long I don’t really know. I’m hoping the folk who attend the first meeting might come up with suggestions for future rendezvous.

[Scaredofpred]

coping with husbands stroke currently so not in a position to offer much but would definitely attend meetings. Local church has coffee area which can be used free of charge, Notcutts sounds a good idea too! Hugs of encouragement- we need each other. Happy for you to message me ……