Curious to know as I'm one of the group organisers for Yorkshire, though Yvonne does most of the work, and I just pop along for coffee when they have live meet-ups and facilitate the odd Zoom. Are you in one? What do you like about it? what would tempt you to go to one if you haven't been to one before? What would you want from a group? - all thoughts welcome as we're trying to expand our outreach
What are your thoughts on local PMRGCAuk support ... - PMRGCAuk
What are your thoughts on local PMRGCAuk support groups?
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tangocharlie
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Not sure there is one near me - not sure of the benefits as have never been to one. I know a friend of a friend who belongs to a Yorkshire group - she is near Bradford and seems to benefit.
Seems to benefit? I thought she'd be shouting out how good it is from the rooftops! LOL there is a llist of local groups and contacts on the website
pmrgca.org.uk/get-support/g...
I did say she was a friend of a friend - she may well be shouting out how good it is.
😆😆😆 I do hope that what I do helps others as well as helping me
I was part of setting up a local group over 10 years ago. I have not been a regular attender now for a few years. I think this is mainly because I do not feel any better for attending and I think that is because I am such a veteran and feel very different from the newer members. I used to enjoy sharing my hard won knowledge with others but don't enjoy that any more.In fact it reminds me how long I have had PMR and how many problems I have had with it.
This is not a criticism of the group at all. I found it so useful for the first few years and am sad that it is not a positive experience for me now.
I think the same sometimes as I am also atypical being a long-termer. But that also means I've been there done that and picked up a lot of useful info along the way from experience and from here. And also there are people in the group who have had it just as long or longer. If I'm talking to newbies I alway say don't worry it doesn't mean you'll have it for 12 years, but also that every case is different, some have it for a few years, some longer. Because often they haven't been told much by their GP and some still peddle the myth that it just automatically goes away after 2 years. For me it is a positive experience to be able to help others and it's always good to meet new people from all walks of life. Well nearly always 😆
Hi, last time I checked there was only one London group for all of London, meeting rarely and in the middle of day on Mondays. It didn’t seem to keep track of school holidays either. So, if you are still working and have a school-age child you would never be able to attend any gatherings.
I did toy with the idea of volunteering to set up another group, one that could meet on weekends, but I had to admit that I was far too busy to take that on at the moment.
One idea would be to set up a buddy system, so that people could support one another between group meetings. Also, instead of meeting for a coffee, from time to time, the group could go for a walk instead. One could celebrate milestones,: Pred reductions, birthdays, or getting over a hump. I assume finding venues may be tricky, so it could work like a book club, with different person hosting and everyone contributing treats.
I have never managed to attend any group meetings for the reasons mentioned above, but I did make one friend on this forum with whom I meet in person from time to time and this friendship has enriched my life.
There was an idea to set up a buddy system but I don't think it ever got off the ground. Estellemac do you know anythng more about it?
The buddy system meant a recruitment process to make sure people were safe and involved the telephone not face to face. It didn’t get off the ground due to lack of resources to follow it up. A volunteer coordinator would have been ideal. If they had the skills for it.
There are members and people who live in remote areas who would benefit from this. Rosemary started the Cumbria group this way and it is doing really well. She has an annual summer outing too. They meet in Booths Cafe Kendal
People could ask if someone in their postcode would like to meet up by using the personal messaging on HU?
We have suggested similar in past… and I think some have followed that up..
If there were more volunteers on the Helpline that might work? The recruitment and training for that is in place. Most people who call the Helpline just need to speak to another human being who understands PMRGCA and how it has totally changed their lives. One day a week maybe two calls a day 9-5 Monday to Friday. Your not tied to the phone you can do a call back from messages on the answer service. It's like working from home but easier.
My needs have changed since I was first diagnosed 8/9 years ago and knew nothing about the conditions. I tried to help others as I learned more and only really step in now if I have something to say that might help and that hasn’t been said. My needs are around coping with a long term condition that now has a number of co-morbidities, that bother me more than the tail end of PMR and GCA. Not really typical .A bit like Suzy ‘s feelings.
I'm facilitating the next Zoom on 24th October and we're going to be talking about the pyschological aspects of coping with long-term or chronic illness
Thanks for the consideration tangocharlie. 🌻
I looked for a local group but nothing in Gloucestershire. I found hearing from other sufferers really helpful and to my surprise I knew a few .... a friend of my sister, four people i know slightly....and also two friends of friends who didn't respond to treatment so decided not PMR and are still suffering, not having a useful diagnosis. Very helpful to put things in context. I would like your suggestions of meetings with walks, talks from specialists or discussions of aspects of the condition. Or just coffee and chat ....The online forum is great too
We do have talks from local specialists sometimes, a rheumatologist specialising in bones is going to do us a talk in January and the great Dr Mackie has done some in the past. Walk and talk could be an idea, with a nice cafe somewhere along the line. I've recently joined Penny's online forum run once a month on a Wednesday and hope to be a regular there too.
Why not start a new group? By the sounds of it you'd be a good group leader
I feared you might say that 😰 .... im hesitant to commit definite time right now as new to pmr, new granny (needed for babysitting) and just retired so getting used to how much i can do and enough rest and reducing stress ... cancelled a couple of things this week already ....maybe a bit later on, or jointly with someone else ?
Gosh you have got a lot on your plate atm, take time to enjoy grannyhood and retirement despite the PMR etc. You do right to say no to things that you think will be too much. As you say maybe further down the line or maybe someone in your area might see this and fancy a meet-up, these groups often start like that
the meetings I go to dont seem to have many attendees.
It is good to have a chat about how we’re progressing and to realise that many of us have the same problems. I found it interesting that out of the 6 there with PMR/GCA apart from 1 person we had had PMR/GCA for over 6 years. I am not sure how things could be changed but it is not always easy to say what you want to say.
The last face to face we had the facilitator did a great job. We did the round Robin intros but limited it to just a few minutes each and asked what issues people had they wanted to discuss, which she made a note of then we came back to them. There were a few newbies who hadn't been told anything practical about tapering so we told them about the various methods and directed them to this forum for more info
Yes, I was surprised some of the oldies did not know about the forum. The one group leader did because when I said my name she said “koalajane”. The leases were good in pushing the forum and the charity.
what are leases?
Think it should be leaders! 😊
Sorry wrong glasses on!
We don't push the charity but do mention it's there and encourage people to join for all the benefits it bring for them and others. We explain it's run on a shoestring and needs money' just to keep the lights on', run a website, this forum and Helpline etc etc
Yes the helpline is something many are unaware of
As DL says, dismissed ina couple of words by the charity at the AGM despite us probably having more public facing contacts than anything else and providing helpline type support for thousands.
And a very good job you do too.
What a shame the forum isn’t pushed more
I try not to be bitter and to give Humphrey the benefit of the doubt as he did it unscripted, but I hope he makes a proper list of everyone to thank next time. There also needs to be a bigger presence of the charity on here too IMO, eg Sophie putting messages out on here occasionally not just in Newswire. As Humphrey said it's odd that there are something like 30,000 people on here yet only a fraction of that are members. I like to think I'm doing my bit to help but it'd be good to get some feedback and encouragement! This post/question stemmed from something I just read in the minutes of a Group organisers meeting about how to promote groups and I thought, well why not just ask people what they think?
Wasn't Humph we felt ignored the forum.
How do I become a helpline volunteer?
Contact fiona@pmrgca.org.uk she is the Helpline manager.
I have no need for it, but ididnt know there is a helpline, & I guess people who are new may not know, either.
If any newbie accesses charity’s webpage - whether by accident or design , the helpline number is in the heading banner… on virtually every page..😊
That’s good. I found this forum before I realised it was linked to a charity…I was already on fibromyalgia and arthritis forums.
It would be helpful if GPs were given the charity’s, forum and helpline details to pass to anyone they diagnose with GCA/PMR. I found this forum and the charity’s details by accident and so glad I did as I would have been lost without them.
You can always pass the information to your GP.. and they can become members [no fee].
Of course, as you say you had to find out yourself.. but if you inform your GP maybe someone coming along in the future can be better informed at the outset.
I have mentioned it to a couple of the GPs but will send an email
Send a link - maybe have a look at this first -
I'm going to put some charity leaflets in envelopes and leave them at my GP surgery each with a handwritten comp slip explaining we don't know who you are but have asked the surgery to give these to patients with PMR and GCA . When I get round to it ...
I was surprised some of the oldies did not know about the forum.
Although the charity does have link to forum on its website, it would be interesting to know how often it is recommended by the helpline… on webinar in summer the forum hardly got a mention.
Yes I noticed that it only got a passing mention. I used to mention it when I was on the Helpline and I know at least some of the volunteers still do. Trouble is a lot of the callers are older and not interested in the internet or even have email. I think most people find this forum via Google, I know I did. Some new people probably don't realise it is linked to the charity. It would be good to get more regular mentions in Newswire
It would be good to get more regular mentions in Newswire
Spot on.. and we always suggest joining the charity to newbies… sure they have got more than a few that way, especially those who live outside UK..
I was told about the charity for information and support by my GP and I see telling people about patient groups is recommended in NICE guidance cks.nice.org.uk/topics/poly...
That's good news!
Your GP is obviously one who reads guidelines so good for them -not sure all are as diligent.. 😊
It'd be interesting to know which guidelines they are using. And it needs to part of the charity's strategy to get mentions in such guidelines.
One day, when I'm better, I'm going to take over the charity LOL. The first thing is it needs big money somehow, like a million pounds or something
From what I understand, NICE don’t issue guidelines as such they issue Clinical Knowledge Summaries [CKS] which seem to be an amalgamation of guidelines issued by relevant societies - in our case BSR and EULAR - and summarised by a private company on their behalf
PMRpro can explain more fully.
This is the relevant section as mentioned by Excelsior80 - Management of PMR
PS _ Ironically they don’t seem to have the same information in the GCA CKS. Obviously written by a different team, no mention on charity whatsoever - only NHS, RNIB and VersusArthritis [link doesn't work].
I'd guess different GPs use different sources for info, mine used to use patient.info and print things off for me eg about GCA
Have just amended to add a bit about GCA CKS - which worryingly doesn’t even mention charity.
By contrast I've just looked up osteoporosis on the NHS website, they have links to the ROS. It beggars belief that people and doctors aren't signposted to the charity or any guidelines for PMR. I put GCA in the search bar and it doesn't come up with anything! It only mentions Temporal arteritis. Again, no link to the charity
yes .... you are right....CKS ....looked like guidelines to me but I don't know much about it, or where they get them.....the pmr one looked very much like what my GP is following
A lot of doctors THINK they are "guidelines" because they are issued by NICE. It was Prof Mackie who enlightened me when patients were saying their GP told them it was "in the guidelines" and I knew quite often it wasn't right so I asked her.
so, if there arent guidelines, where do GPs find the latest information/recommendations? this PMR CKS looked reasonable to me based on what Ive heard so far ....
There are guidelines - in fact on charity’s website are those issued by British Society of Rheumatology. There are also similar from European Alliance of Associations for Rheumatology, American College of Rheumatology and many others for individual countries.
All are written by rheumatologist..and their names will appear on the paperwork. What we are saying is that NICE’s CKS are not written as such by rheumatologists, and even though the information is taken from the BSR article it has been interpreted by others. Not quite the same thing.
There ARE recommendations, discussed at great length by an international team to achieve a consensus on appropriate actions, and published every 10 years or so. Not that much is likely to change between issues - the medication hasn't changed, still pred but they tweak the way it is used a bit.
That said - in reply to your question "where do GPs find the latest information/recommendations": to be honest, I doubt they do ever look at them. They learned one approach when they trained and probably haven't changed a lot since. And really, there isn't a lot to change although a good GP who has several patients with PMR will learn that there is no single way to manage it and every patient is different - something ALL management of PMR advice I have seen takes into account by saying that the taper and dose should be adjusted to the individual taper and that atypical patients should be referred to a rheumatologist. Not that a rheumy is always preferable to a good GP.
ive been very happy so far with my GP, careful and thorough, shes young and not been a GP long so maybe either recent training or still reading up on things.
I think the latest generation of young doctors do seem to be better. Or maybe they aren't so disillusioned yet.
Back in the day when I was first diagnosed my then GP told me to be very careful about what I read online re PMR. Several years later (and still with PMR) I moved to another practice who listen. And seem to understand about PMR - rare creatures indeed!!
I don't effin believe it... I've just looked at the NHS website for info on PMR. It says you may need to take steroids for between 12 months and two years to prevent symptoms returning!!!!! Even the NHS is not giving out the right information, what chance have we got!???? No mention of a charity to contact. ffs
nhs.uk/conditions/polymyalg...
Someone at the charity needs to put that right asap! Either that or you take over which would be brilliant!
I have 2 PMR friends, one has just had her 101st birthday and the other is in her 90s and both are very active with internet usage. The 101 year old does all her shopping online.
No doubt there are some internet savvy older people, I'm just reporting the feedback we got. When I was in IT training many many years ago here were two elderly ladies came in to learn Word processing because they wanted to write their memoires. I wish I'd kept in touch to see if they did it
Hi,
I attended the Coventry support group when it started shortly after my diagnosis at the end of 2014. Sadly, the group folded after covid.
Personally, I always enjoyed going, but the main issue was being able to hear what everyone said, as we had a table in a large foyer area of a Holiday Inn, and there was always quite a bit of extraneous noise.
That said, our leader had guest speakers ( rhreumatologist/physio/ optician etc,) and it was always interesting.
Many of those attending - varied between four or five to ten to twelve- mostly were not aware of the HU Forum, so I did find myself pushing this really quite hard, because it is a great learning point. However, as others have said, not everyone is comfortable with the internet! Consequently, as I picked up more knowledge, I did find I was able to help those most recently diagnosed. I kept my mouth shut, when it came to GCA, but others did have experience of this condition.
Our leader pushed the Charity at every meeting.
Great socially too, and I made some good friends.
Sounds like a great positive expereince for you and others. Would there be any chance of it starting up again?
Well, they tried to get me to do that, but I declined!,,
But, yes, it was a positive experience, and even though I’ve been off pred for two years, I did join Rosemary Marsden’s latest meeting in Kendal ( I come from that part of the country- Sedbergh), and enjoyed that.
Cheers
Paddy
We do encourage attendees at the Yorkshire group to join the charity and ask them if they are members. At the last meeting, all 9 round the table indicated that they were members of the charity. I was most impressed. They also supported the charity by buying 8 packs of notelets! pmrgca.org.uk/notelets-for-...
I thought the meeting in Leeds was a good one in terms of engagement for everyone. I know I had to leave before the end but it was a more productive meeting than some I have been to. Because you had structured the meeting, everyone had a chance to speak and it wasn’t dominated by the few with the loudest voices!
I'd be happy to go along and support a local group, but the nearest is not very close to me. Happy to join a meeting by Zoom/Teams if anyone thinks I have anything useful to offer/contribute.
"if anyone thinks I have anything useful to offer/contribute" - I'd say you have a LOT to contribute, whether F2F or by zoom!
There is a monthly online support group on a Wednesday, open to anyone, worldwide. pmrgca.org.uk/online-support/
As Rugger has advised zoom meeting every 3rd Wednesday in month…
wish we had one nearer to me in Suffolk!xx😪😜
Me too! I am near Woodbridge. Are you near?
Hi ,I am in Coney Weston,think you are about an hour from me or near enough.Think that is where I got my GSD from.Because I can’t drive now it would be great if there was something in BSE or Stowmarket.It is lovely to have theforum,my only outlet for problems and EVERYBODY seems so good ,listening to my moans,crass jokey attitude( tears of a clown??) and just BEING there.But how wonderful to be able to chat,have a laugh,and be part of a group where every person is in the same sort of boat!Maybe somebody could start one.I couldn’t because of OH sad to say.So if anybody out there has the thought of doing one,it would be a godsend wouldn’t it eh?Hope you are well?xxx🌼🌞😜
I’ve just googled your village. About 55 mins with a good following wind 😂. I live in Martlesham although before I retired I travelled a lot for work in Suffolk and Norfolk so that area is familiar to me.. Would be happy to drive to you if you fancy a chat. I am still in shock at my diagnosis but even more open mouthed at the length of time people endure this condition. This group has been so helpful for me to let all this information sink in. I keep being told at the surgery how common it is, but I am fairly stunned that someone in my circle doesn’t have this condition if it’s that common!
Actually it is quoted as ‘Polymyalgia rheumatica (PMR) is the most common inflammatory rheumatic disease in older people.’
That doesn’t mean, common, common as in some diseases, and it does,say older people. So people below the age of say to probably have never heard of unless an older relative has/is affected.
Not sure if you have read this, if not please have look -healthunlocked.com/pmrgcauk...
How lovely of you to offer to come and see me.You would be very welcome!Just hope I wouldn’t bore you to death with my weird sense of humour?Let me know if you ever want to come eh?Thankyou again!Just had flu jab and got OH his.Took 2 paracetomol beforehand( think it was DL who said to do that or maybe it is my Pred head inventing things!🤣Also think I shouldn’t start my next taper for a week but perhaps I have got that wrong too eh?xx🫢🌼😜🤣
Paracetamol? .. Guilty m’lord… keep taking for 24-48 hours… agree, put taper off for a week. You obviously have been listening .. 🤣😂
Yes Ma’am,do have lucid thoughts sometimes!Saw doc last week regarding shoulder and MOT and he is in TOTAL agreement with your 7 week taper,said he has seen far too many people relapsing through hurried reductions,so at least now I know I have him on side seeing as my sweet little Rheumy is moving on!😪He asked how the hell I manage to cut the 1 mg in half,I said you just wait until I have to cut the buggers into quarters!( excuse language!Xx🌼🫢😜
There is no such thing as a weird sense of humour 😂 . We have always run pubs and restaurants so nothing would ever surprise me 🫣. Our flu jabs and Covid are in Nov. (Will take on board about paracetamol. ❤️). Let me know when you feel like a chat and OH is ok x
Wonderful!Will do!Just get hospital appointments out of way and that would be great to see you!When we left the force we too ran a pub,by heck,one needs a sense of humour to do that.!Once the brewery knew our background they gave us the roughest pub in the world!Soon changed it around !My catch phrase was a bit like the late great Peggy Mitchell,” Get out of my pub!”Time for another couple of paracetomol methinks!😜🤣🍺🍷🥃💊💊
Pinner one is great - very supportive group for sharing concerns, knowledge and experience - speakers come with extra information on a variety of useful subjects. It really helps.
I am looking for one near me. I live in Torbay Devon and I think the nearest is Plymouth - I dont mind travelling so will get in touch soon - I think they are a great idea and like this site you can get a lot more information when a newbie than you can from the docs.
As predicted by others on here about the quick tapering from 40-30-20 in the space of a month I’ve had a relapse already so back on 40 - back to sleepless nights which I find the worse thing. Still no follow up from rheumy so doc getting in touch with them
Oh well onwards and upwards. Got pram pushing duties today !! 😀
Hi. I’m a member of the. Worthing group in West Sussex. We meet bimonthly in a room in a community centre. We all contribute £2 that covers room hire and hot drinks are available for £1 if you want one. We start with updates from different sources including PMRGCAuk and then all take turns to talk a little about where we are with our disease. We get ideas and tips from each other and I find it very well organised by our chair, supportive and friendly. We have had speakers and are showing the webinars next meeting. We also have a bimonthly more informal coffee meet up in a pub. We have just over 25 members with 10-15 attending our main meetings. I joined nearly four years ago and it was great finding others with the same condition. Whilst we are all different and the disease runs a slightly different course for each of us, there are many similarities and much joint learning. 👍
I think getting together with others who truly understand what it is like to live with PMR and GCA and the associated health implications is really important. To the extent that I have taken on the running of the small Hastings based group and hope to grow our numbers in the local area.
If people are not members of the charity or readers of the forum I’m not sure how to attract new folk to the meetings. I advertised in three local area Facebook pages and a neighbourhood group but had no response, does anyone have any suggestions how to reach out to fellow sufferers?
I am on the Patient Forum Facebook page for my local surgery and share all PMRCA info on there and ask if any one would like to come to a support group. We have 4 venues across Yorkshire as we cover a large are. Local to me is Sheffield and York. I tried Doncaster three times and no one came. I choose venues with parking and public transport as we never know who will turn up booking a room could be a waste of money.
GP practices and rheumy clinics often have noticeboards or will give leaflets to diagnosed patients even if they can't give you contact details of specific patients because of patient confidentiality. A helpful local rheumy can be a great boost - Mike Plant was a tremendous help in Middlesborough, telling his patients and even attending meetings. And of course, they will have access to the patients!
If there is such a thing, you MIGHT get the local paper to run a story. You have a community paper in Hastings:
hastingsindependentpress.co...
This is exactly the kind of thing Lucas should be doing to reach out to people in Yorkshire
Not sure that is meant to be his role. Not that I'm that sure what it is at all ...
The Havant group is very supportive and informative .Has developed strong links with the Rheumatology Dept at the local hospital who have provided speakers on topics such as diet/nutrition,steroid tapering, excercise, osteoporosis.I have found the group to be very helpful and encouraging especially when diagnosed in lockdown I had never heard of PMR or knew anyone with it. Big thanks to Linda (organiser) and Colin from Rheumatology.
Diagnosed with 51 over four years ago just as Covid started, I fortunately found on the internet this forum and it gave me a connection with people that understood and at different stages of their journey, and different ages. Meet up groups can be a positive experience for connecting and making friends, I haven’t as yet connected to my local group. We go through different stages with Pmr, I’m now at the low end steroid management and one of the hardest things I have found is managing with the psychological side , of living with long term chronic illness, which SheffieldJane has mentioned. I did attend on line through Manchester Mind Building a Healthy Future - Long-term Conditions, which was useful as we didn’t focus directly on what our ailments were but to tpwhat we can all look at what we can potentially positively do,. I feel by managing mind and stresses we can also help to manage PMR that feeds on our stress /anxiety, combined with the steroids and focus on positive things we can do , which groups can facilitate . Hope this helps
I like how you found Manchester Mind Building a Healthy Future - Long-term Conditions. Looking at dealing with your health problems without focusing on each individual.
I would love to take part in our nearest support group. An exchange of experiences is invaluable. Also the ability to (hopefully) influence Doctors etc. Unfortunately , I live a 3hr ferry journey and 1hr 30min bus trip away from my nearest meet which is in Inverness. Zoom options wouls bring in more participants I'm sure.
There is a monthly online support group on a Wednesday, open to anyone, worldwide. I believe Grammy80 joins in from the US! pmrgca.org.uk/online-support/
Other groups also meet online.
Best wishes. 🛳️ 🚍 🌻
Not every Wednesday - usually 3rd week.. and yes Grammy does partake…
Rubha
If it is any consolation - when I do eventually return to the UK, the only thing missing for me to get to the nearest group would be the ferry despite being on the mainland!!! Meetings in the centre of Glasgow or Edinburgh sound easy to access but living in rural Fife that is an hour by car on a good day and the joy of parking in a city or 1 1/2 to 2+ hours each way on a bus with changes. At least my bus pass would make it affordable and I'd have the choice of 3 since Dundee is about the same by bus too!!
Depending on whereabouts in Fife using Halbeath or Ferrytoll park and ride might make the journey easier (to Edinburgh at least)?
The bus into Edinburgh is good - the bustop is literally at the end of our drive and a single change in Dunfermline for one of the Ferrytoll buses so going direct to Ferrytoll is just a bit quicker by missing the joys of Dunfermline!!!! But you'd want to be a pensioner with a bus pass!!!
Let’s hope the government don’t take away the bus passes seeing as they have snatched the winter fuel allowance eh?Dont have the luxury of bus passes here as they stopped the damn buses into our nearest town.Might get myself an electric scooter but would probably falloff!🌼😜
I have mixed feeling on the fuel allowance - it was nice while it lasted but I will be fine, the increase in pension will be the same as the lost allowance. There is something inherently unfair that my cousins get the allowance despite his pension probably being higher than my husband's final salary and his wife also gets a fairish pension! I am alone - the flat costs the same to heat as when OH was still alive and it is now only my income to cover it. But there are a lot of people who fall inbetween the cracks as usual - too much for Pension Credit, not enough to be comfortable. Here I get nothing free - but I do get unlimited travel on trains and buses throughout the region for 75 euros a year - I can go out for lunch anywhere if I can be bothered! Won't be as good next year as the trains in our valley will be off altogether for a year while they do major building work to give us 15 mins off the journey to the regional capital with no change halfway. There will be buses but no direct train from the village to the back door of the hospital for appointments - takes under 20 mins, will be more like an hour each way next year.
Aaaw,such a shame about your trains,bad about not being door to door for your hospital appointments too.We too can do without the allowance,nice to have had it but we won’t starve,though the way the food prices keep going up we might well do!Just glad prescriptions are free or OH and me might be bankrupt!When daughter cannot take me to hospital,it costs me £68 return!Thought of thumbing a lift but probably not advisable eh!x🌼😜
We have the White Cross charity here who run the ambulance service. You can become a member and depending on the level you choose you get international holiday medical cover and 6 return trips for medical appointments included. Can be very useful!
That sounds great.,how useful eh?Dont get anything like that here I tell you.,There is a passenger ambulance service available here called Eezak( think that is the name ),but not worth the trouble.Had an urgent Eye hospital appointment booked it for next day,it never turned up,had to get a neighbour to take me at last minute.Bone shakers,bits falling off them,and can see daylight through bottom of doors.Hated it when OH had to go the long way to Addenbrookes for his cancer treatment,every day for 7 weeks.Lucky now that daughter takes us everywhere most of time.HATE not being able to drive anymore,it’s the loss of independence that upsets me the most.Do you not drive anymore?x😜🚑🏎️🏎️
Oh yes, I still drive, Drove from here to Scotland and back this summer. But where I can here I use the bus/train rather than fight the tourists for space on the roads! And it is cheaper. I have a VW campervan which I usually use 2x a week, to get to the aquafit class as it is an absolute pain on the bus and to do my shopping as I can't carry stuff. I have used the WK transport to get to the regional hospital where cardiology is, it's 50 miles and involves 2 trains and a bus. If the train connection fails you are in a mess so I ask for transport there so I am sure and if the weather there is good I have lunch in town before catching the train home. But last time I did it the first train was 5 mins late and heaving. missed the connection and sat for well over half an hour waiting for the next one. Had I got off at the previous station I could have got a bus home sooner! The next time the weather was rubbish so I asked for a return trip!!
My,how brave to drive to Scotland and back,I wouldn’t have attempted that even when I had 2 eyes!Sounds like your transport system is great.I think ours is regressing ,probably be like a third world country before long,and don’t get get me on the subject of potholes.!🤬🤬🤬😜
I managed to avoid the potholes thank goodness! I've been driving between Scotland or the north of England and Italy since I was 21 on my first trip to Italy! Even when my husband was alive I always drove if we were travelling with the car, he towed the caravan or, laterly, drove the big camper, I flew back last November as it was only for a week - just to remind myself why I don't fly! I need wheels in the UK and hiring is so expensive so I'd rather take my own if I'm going to be there longer. It is wonderful with the camper - always a bed and a loo wherever I end up. If I'm tired I stop and have a proper nap.
Well done you,what a trooper you are!Lovely to have your independence!Have you been making up for lost time with the Gelato?😜🌼🍦🍦🍨
DorsetLady lost the sight in one eye but still drives - were there other reasons for you giving up driving?
MD in good eye,everything I see is mottled.Plus the way the lunatics drive around here,if there was an accident,guess who they would blame?Some poor old biddy with eye issues.Too many country lanes,tractors,boy racers,so just feel that I would not feel comfortable or confident enough.🌼😜😪
Fair enough. Though it is said that using taxis compares favourably with the actual cost of running a car when you take insurance, fuel. servicing and depreciation into proper consideration.
Do think that occasionally - especially as insurance seems to increase horrendously in UK year on year… but still thinking ‘nah, I give it another year!’
Mine is an utter luxury - the insurance here is horrendous as automatically any driver and 365/365 days of Green Card! Nor is there a no claims bonus. But it was a bucket list wish ...
Fair dos… and we all need to do something for ourselves whilst we can…
We still have our car,son in law uses it to take OH out for dog walk if he is having a good day and still in the back of my mind I live in the hope that ONE day,I might drive again!We all have to have something to wish for Dont we?xx🌼😜
I have gone to the Inverness meeting and found it excellent however it involves leaving home about 4:30am and not home till’9:30pm …..getting too old for those long days 😂😂😂
Living rurally does have disadvantages when travelling. Last visit to the Inverness meeting involved an almost 16hr day …..worthwhile but impractical on a regular basis , especially in winter when ferries are frequently cancelled and you have to be prepared for unexpected overnight stays,
Even I would balk at that! But I have a camper - I'd have had somewhere to sleep!!!!
I always have a toothbrush and clean underwear....good old advice from my mother 😁
And at least 24 hoursworth of pills!!!! Though being exceptionally gifted I nipped down to a funeral in England while I was in Scotland and managed to forget my pred!!! Had the rest but had to go begging at a pharmacy for a rescue pack of pred. Boots charge you over £8 for the service, profuse apologies from the pharmacist who seemed to think other companies wouldn't ...
I found a support group for heart valve replacement here in the US that absolutely got me through though the surgery, rehab, warfarin use, and aftercare for many years. The group, much like this group has members that have become very well versed in all the eventualities that come with life after heart valve replacements. That was 14 years ago and even today I sometimes go to the group for their insight on things that have changed in my condition and the newest treatments and thoughts on any new problems that have cropped up over the years with advancing age. This group is very much like that group with experienced, knowledgeable, and caring members that are invaluable in helping understanding all the do’s and don’ts involved in this scary condition. Groups like this contribute to one’s peace of mind and that brings about hope and energy to deal with this new challenge in my life. Most Doctors haven’t “seen it all and done it all” in most cases and quite frankly they are very limited in the amount of time they can spend on individual cases. People that are experiencing or have experienced similar problems that you are, gives you that “you are not alone “ feeling . I will be here as long as I can give and receive help with this condition. Thank you for the opportunity to join you.
Our pleasure!
So true re not feeling alone
There doesn't seem to be one near Salisbury, and any group for me would have to be local as I have transport problems. Got mixed feelings, really. The beauty of this forum means it's both anonymous yet personal, and I'm very shy and tongue-tied in company. Yet it would be wonderful to discover one or more people with these conditions living, say, around the corner! Thanks for putting the feelers out, tangocharlie!
There was a Salisbury group - I used to go occasionally- but when the guy running it gave up last year, no one was willing to take it on.
Pre Covid the meeting were held at Edinburgh Wool shop at Wilton… so you know how long ago that was.. and during Covid it linked up with other south west groups for zoom meetings.
Thanks, DL. Perhaps someone less of a wallflower might take it on!
Hope so -I’m not a wallflower, but I think I do my fair share -and don’t know Salisbury as well as I did and it really needs to be someone a bit more local.
Oh DL, it's ME who's a wallflower! YOU are amazing!
I knew you meant you….😊 was just saying I wasn’t volunteering….😉
I know the group were planning a meeting in the Designer Centre in York at the junction of the A19 and the A64 just South of the city. The beauty of this venue suggestion was lots of shopping opportunities))) and easy parking.
Not sure if it ever set up but it's must be good to share this awful disease with others who feel it.
Sadly Doctors find it hard to understand how bad it can get although Pred does help with symptoms but for many ( not me) Pred scares them .
We do have a group at the McArthur Glen Designer Outlet in York. Upstairs in a quiet corner of the global at the back near McDonalds. Not got the next one booked yet we did meet in September. Email yorkshire@pmrgca.org.uk if you want to be in the mailing list for meetings.
I went to one in Cardiff recently so glad it exists !
Hi tangocharlie, although I have been off steroids since last November I still feel the physical affects of the body adjusting, and the psychological effects of having had a chronic condition that many medics seemed to know little about.
It would be good to join a group or groups for a bit of positive uplift. Perhaps it might be nice to be able to access this group on line around Christmas. Also the idea of a local meet up for a walk or coffee ( or herbal to manage the adrenals!) appeals to me. I have recently starting trying to walk regularly to lose a few pounds .I live in Cheshunt close to North London.
Myself and 3 others who ‘met’ on this forum decided to start a monthly Zoom support group. We all live in Ontario, Canada and are keen to connect with others who “get it” in a more face-to-face way. We mostly have PMR/GCA folks from Canada attend, but a few from US have attended time to time. We wanted to share resources and support one another on our journeys. I worked with support groups a great deal during my career as a social worker and can attest to their benefit.
We always invite the attendees to share what topics they are interested in, and if no ideas come forward we generate them between us four facilitators. We’ve had guests such as a research rheumatologist and the Director of the Vasculitis Foundation of Canada. Some of our discussion topics include: doctors; the good, bad, and ugly; tips and tricks for coping with PMR/GCA; diet and lifestyle; cooing with grief and loss surrounding diagnosis, bone health; etc. I created a PowerPoint presentation for one of our meetings and we’ve also had members present on certain topics. Ultimately it is our/their group, so we want it to be relevant for them and sometimes that means participation/involvement from them.
Basically I believe that members of our group find it healing to be heard by others who understand and have a lived experience coping with these autoimmune conditions. Humour also certainly helps! I have become quite close to the other 3 founding members and am sad to have to miss the monthly meetings now due to my new work schedule.
Between our Zoom group and HU I’ve weathered the challenges I’ve faced along the way. I hope my efforts have helped others as well.
tangocharlie. I think support groups are a very important part of getting and keeping well. The knowledge of members collectively and practical advice given are just the lifeline that some people need. The other side of support groups which can be negative are what we call vampires and some people are very good at this and could upset the balance, so you need practical people to be very honest with these people and try to get them to get rid of their negativity and ask what they hope to achieve from group , how they think they can achieve it and what are they going to bring to the group. I love when someone needs to let off steam , rant rave etc and the group come together with words of support and wisdom like” go for it girl//boy. That is my take on support groups. Nearly forgot to mention professionally trained monitors. That is my take on support groups. Keep up the good work.
Hi TC,
I belong to a group that meets fairly regularly and I've been attending for over two years now.
It provides many different things for different people:-
-information
-advice
-knowledge
-education
-talks
-friendship
-reassurance
-empathy
-new ideas
-fun
-support
-tea & biscuits!
...... and much more besides.
I've felt that as I've learnt more & more about my condition and medications, my role at these meetings has evolved into something different though.
From arriving at my first meeting, scared, naive and overwhelmed by my diagnosis, I asked lots of questions and sought out reassurance from others with more experience & knowledge.
Now, I feel that I'm the one able to offer more support and advice to new people who attend. That doesn't mean I'm not still 'learning' myself of course.
These meetings are invaluable, and essential for helping to maintain positive attitudes and a proactive approach to helping oneself.
The only thing I feel we need to be mindful of during these meetings, is that
- it doesn't become a PMR/GCA 'consultation room' where one or two people hog the meeting.
-communication doesn't become too negative and depressing. It's easy to turn the conversations into woeful ones and although it's important people can air their worries and concerns, it's also important to let it be known that there is always hope for a better day tomorrow.
Hope that's helpful.
I was not near enough to a face to face group for any of my conditions , even travel to Bangor was hard because of transport which is why this forum was such a lifeline to me when I had GCA , I had no other groups I could join to get tips and advice.During COVID, lots of groups started doing online / Zoom meetings instead of face to face ones.
It was probably one of the few positives for someone in an isolated community like me.
Especially because my various health issues meant that I was on Lockdown for over a year.
But also because I regularly have to live life at Home because my symptoms mean that I can't get out without a carer, or at all when things are severe.
Luckily, many groups, like the EDS one I use remained online because they realised how much benefit this was to people with inability to attend a group. They also started up face to face groups again so you could have the opportunity to go and meet others you knew on Zoom on good days but didn't loose that social contact on bad ones.
It also meant that you were not restricted to joining groups in your own area but could register and Zoom In to other groups in the Country with more members , or whom were recommended because of the events and talks they got.
This also meant that you weren't limited to a particular day in the month when you might not even be up to sitting in front of a screen in your PJ's. (EDS forums are often Pajama Parties).
So I think it would be good for all charities and support groups to learn the positive lessons we learned about meeting up during COVID,
You could have face to face groups but also give members access to both local and national ( even international) online groups.
I know some groups could get quite big but there could be limits or comments which someone within the group leaders that day could be reading and bring up and then ask that member to speak if they want to.
Utilising YouTube like other charities do would also be a bonus.
Many charities get someone to video the talks given by guest speakers at local or national groups and conferences , at interviews and certain demonstrations at local meetings then upload those videos as a library of useful stuff , but all in one place.
Many also have exercise class videos.
Recently I've been trying out various free online charity and NHS exercise videos for my various conditions and Chronic Pain at home , I'm planning to write a post with the links to the best ones which would also be PMR friendly next week.
Some members whom have experience of teaching or creating exercise programmes could choose to volunteer to do similar videos if they wanted to. If I ever get my blood pressure under control I might even be willing to do a few videos!!!
None of this takes much , if any financing ,because it all uses the equipment we all use at home already , or any mobile phone on a tripod to video. It's the motivation and organisation that counts, but the load can be shared to something that fits in with people's abilities, needs and availability.
These online groups can bring passive income for the charity or the local groups whom are most active online over time , because as members from forums like this take up free subscription, followers encourage others to advertise ( you can choose whom you allow to advertise).
People can also donate via the YouTube channel or choose subscription which is paid monthly to give a regular amount to help support the community. This advertising builds revenue, the online groups and videos build more awareness as well as making things easier to access for newbies and for those whom have mobility issues at home.
Well tangocharlie, I went to one in Glasgow, didn't benefit at tall except a cup of tea and no biscuits lol, I asked most of the questions and have had better advise from this form so definitely a waste of time for me but each to there own. X
I hope you gave feedback to the Group Organiser to let them know why you wouldn't be attending in the future.
I don't think the support groups are necessarily to provide advice - neither is the charity Helpline intended for the sort of things we talk about here. They are to exchange experiences unless there is an invited speaker which is different and rarely every time.
I think groups are a great idea... and I would happily attend one. I'm in Preston, Lancashire though, so it's a bit of a distance to the nearest, and if it wasn't for my current erratic SAI I would be happy to organise myself. Lately I'm having to cancel plans at the last minute, which I hate, but I wouldn't rule it out completely. Keep up your great work though 👏 xx
To get back to you on your original query, I attend a small local support group in Surrey who meet once a month about five miles away. Some of those who come along do so from miles away. About six to ten people attend each time and not always the same people. We have coffee in a free meeting room (although we all do contribute a small amount) in the Village Hall and we all talk about our various experiences with PMR and GCA. We all learn from each other. It has been good to discuss our various PMR and GCA related problems and meet fellow ‘sufferers’ face to face.
We are all ‘amazed’ at how little some of our GPs (or even Consultants) know about our condition!
This group has been very helpful for me and it is all down to the good work of the lady who organises the meeting each month.
Lastly, the Charity, PMRGCA UK, are amazing and, considering the small amount of funds they have coming in, their work is very much appreciated.
l live in Birmingham and would LOVE access to a local group, please.
Have a look at this recent post. healthunlocked.com/pmrgcauk...
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