- 17th April 2016
- The North West Lupus Group AGM & Information Day
We will be holding our Annual General Meeting and Information at The Village Hotel in Cheadle, Stockport. More details to follow shortly.
- October 2015
- The North West Lupus Group Celebrates Lupus UK's 25th Anniversary
As you are all aware last year Lupus UK celebrated 25 years as a registered charity and the committee felt it should be celebrated. Early in 2015 I had received a call from Manchester United Football Club asking if any event was planned that they could assist with. At the time there wasn’t but that soon changed following a visit to the venue. As soon as I saw the room on offer I knew we had to make a booking. Following poor attendance at the last fund-raising night I was hesitant to secure too many places so our initial number was 80.
The menu was chosen and the invitations went out. While waiting for replies I set about organising a DJ, made arrangements to have the room dressed, sourced raffle prizes, made sure we had some fund-raising activities, put a few surprises together and just hoped it would all come together.
As it was such a momentous occasion I decided to contact Cheryl Marcus who started the group to ask if she would like to send a short message about how she felt 25 years on. I also said that if she would like to sample North West hospitality we would happily welcome her on the night. I was delighted when she replied saying she would love to attend along with her husband Martin.
Soon replies started to arrive and reality set in, oh dear, what had I done!
It wasn’t long before I started calling the venue telling them I needed to increase the numbers. The week before the event I was asking if there was any way we could get a few more in as people were still wanting tickets.
Before I knew it, the night arrived and all I could do was hope it was a success. I arrived early to see the room had been transformed by Helen Barnes of A Glass Slipper Event, who had dressed it beautifully in our new colour and silver to represent the 25th anniversary. The menus on each table had been personalised with our new logo, they looked lovely.
With table plans to hand we sorted out the seating making sure everyone had one of our new bookmarks.
Vases with a small arrangement were put on each table. These were to double up as a fund-raising game later on when we replaced the flowers with a lemon/lime and tried to get people to balance a coin on it. When it went in the water it was ours! Guess the gemstone game was for fun with the table having the most correct answers each winning a prize.
Our lovely DJ John Mayoh from North West Disco’s arrived who was also going to host the night. A number of guests arrived early as they had booked for the Stadium tour. I believe it was a superb hour.
At 7pm guests started to arrive and the excitement built. Nadine Soutar from E.L.S.Photography had given her services free of charge and was soon busy capturing the night’s events.
The raffle prizes were set out and people wanted more and more tickets. I would like to thank Donna Ivill who worked so hard getting prizes. There was also great interest in our auction items.
An I-Pad had been generously donated by ODEMA. This company had also agreed to pay for staff members and guest to attend the event. Our sincere thanks go to Ben Coates who arranged this. We also had a signed Manchester United football, a Manchester United top and a beautiful butterfly shaped cake donated by Donna and Phil Ivill all for auctioning.
While people were arriving we were lucky enough to have Kevin and John from The Liverpool Magic Circle with us to offer light entertainment. They had also offered their services free of charge and would be present all night to astound us with their work.
Staff soon asked for us to be seated as our meal was ready. Before we ate it was my pleasure to welcome and thank each and every person for attending. The number I had to thank, well it was a dream come true, the room was completely full with 176 people. I could not believe we had exceeded our original number by so many. I would like to thank Nasrin Ghayouri, who even spent time on holiday making arrangements with family and friends to attend and filled many tables. I then invited Cheryl to share her thoughts. It was an honour to have her share such a special night. With the formalities over it was time to enjoy splendid food and company. The service was excellent, the food delicious.
We then had our auction. This was so much fun with our DJ John in ‘host mode’ encouraging those present to bid just that little bit more. He even managed to convince those bidding for the shirt that I would sign it to make it priceless. It worked, the gentleman who already had the highest bid, bid against himself offering more!
So auction over, raffle prizes claimed it was time for music and dance. The night seemed to pass too quickly and it was soon time to draw the night to a close. I wanted to wish everyone a safe journey home and made the mistake of asking if we should do it again….the answer….a definite yes……so watch this space.
I really cannot thank enough those who attended with family and friends for being there. All I have to do now is plan the next one!
- April 2015
- Review of the North West Lupus Group's AGM and Information Day
On my arrival at the venue with my mother I was met with familiar and unfamiliar faces. I quickly reacquainted myself with regular attendees of Lupus events and Lupus UK members, while during the course of the day I chatted with others and got to learn about their history with lupus and ultimately create new friendships.
The foyer area was very inviting due to the refreshments and fresh pastries available. Also this area was equipped with various stands with Representatives from Associated Charities, with plenty of useful information/pamphlets relating to auto-immune conditions that can often overlap with Lupus patients i.e. Rheumatoid Arthritis & Raynauds. A particular stand that always stands out for me is the Department of Work and Pensions (DWP) stand manned by Oliver Mawdsley, who regularly gives a discourse at Lupus AGM’s; often providing a wealth of knowledge on the maze that is ‘Claiming Benefits’ and changes to welfare system, which was highlighted in his talk.
Once we were all seated the programme commenced with a welcome and an addressing from the committee. The attendees were brought up-to-date with proceedings from the previous year. We were taken through the financial report and other such matters.
Chris Maker from National Office came along to report on the impact the internet is having on Lupus UK memberships, which has led to individuals not renewing after the first year. It is clear to see that social media has taken precedence for some who choose to source information in this way. I have personally made contact with lupus patients in the virtual world both nationally & globally via Instagram. However, the fact remains that being a Lupus UK member is a valuable asset. I always look forward to receiving my issue of News & Views, access to a trained telephone contact, attending AGM’s and Information Days. Plus you wouldn’t be reading this review, but for the fact that you are a loyal Lupus UK member. Having said that, Chris elaborated on the fact that Lupus UK is also changing and adapting to the ‘digital world’, with the likes of Facebook, Twitter and HealthUnlocked, which all serve a great purpose.
During lunch, which was a delicious hot buffet, I took the opportunity to buy some Lupus UK branded goods from the shop, gather information from the stands and chat, chat, chat. Additionally, as always there were some great raffle prizes on display, so purchasing some tickets was a must.
The afternoon session of the Information Day consisted of the talks.
Talk 1: Dr Parker – Consultant Rheumatologist.
In brief, his discourse focused on Diagnosis; specifically what medical professionals look for and the factors involved when presented with an unwell patient. Medication was another focal point, in which he highlighted the ways how Rheumatologist’s try out a combination drugs to try and find what works for each patient. Other points mentioned was the way in which Lupus very often mimics other illnesses or overlaps with other conditions, for example joints problems like osteoporosis. From Dr Parker’s talk, the complexities of lupus are so apparent. Ultimately, although I have lived with SLE for over 18 years this fact never seizes to amaze me.
This made me think back to Chris Maker’s talk about the impact of the internet changing the way individuals’ choose to seek information, advice and guidance. I have come across individuals newly diagnosed or patients in general who are anxious, frustrated and scared and seek medical advice from other users online, which in my opinion can be very dangerous and misleading.
Undoubtedly, this links to the benefits of having a Lupus UK membership. Lupus is so complicated and complex, so much so that, no two patients are the same and certain drugs agree with some and not others. Being privy to specialist talks by people in the field is invaluable and something the internet cannot compete with.
Talk 2: Oliver Mawdsley – Department of Work and Pensions (DWP)
Claiming benefits can be a daunting experience especially if one has no understanding, prior knowledge or familiarity with claiming what you are entitled to. However, Mr Mawdsley is fully equipped with current information and subsequent changes coming into play under the umbrella ‘Welfare Reform’.
The DWP talked dealt with the changes to Disability Living Allowance (DLA); however attendees had the opportunity to gather information from Oliver on a one-to-one basis at his stand.
For those who are unaware, Oliver highlighted that anyone in receipt of DLA (or any new claimants) will have to be reassessed in order to claim Personal Independence Payments (PIP), which like DLA isn’t means-tested but has different components and will only affect those of working age. More importantly, anyone with an indefinite award of DLA will still have to be tested and in some cases could be turned down, despite a different outcome when claiming DLA. He also discussed Carer’s Allowance and how it works.
It is important to note that this talk took place at the run up to the General Election. Since then we now have a majority Conservative government, so it will be interesting to see what the future has in store for the long-term sick.
Talk 3: Dr Sadiq – Psychiatrist
I believe that many would agree that this talk was the highlight of the information day. Dr Sadiq arrived in his flat cap, ditched his power point presentation and just decided to talk. Nobody could ever say he was one dimensional, but quite the contrary. Dr Sadiq came across as passionate, dynamic and engaging. Overall he definitely captivated the audience.
He created a positive atmosphere that provided an open forum whereby attendees felt comfortable enough to share their thoughts, feelings and emotions. What I found very useful is that Dr Sadiq also used his own personal scenarios to illustrate the illogical thoughts that he has experienced.
Ultimately, living with a long-term illness can induce stress and depression, however the lesson I took away from Dr Sadiq’s talk is that whether you suffer with lupus or not, we can all relate to matters of the mind. It also reminded me that we can all feel a little lupie at times.
- October 2014
- North West Lupus Group's fundraising party
Having received the usual amount of requests for more coffee and chat groups to be set up and noticed how many ‘conversations’ are held on our Facebook page, the idea of holding a large coffee and chat group (without too much coffee!) and do some fund-raising at the same time came to mind: What if we could organise something to get everyone together?
A decision as to where this was could held was never going to be easy as we cover such a large geographical area but as the AGM for 2015 was to be held around Preston I approached several venues to see where we could get the best deal.
The Samlesbury Hotel was chosen and the invitations were sent out to all our members. The event was also posted on Facebook, as we have a large number of people on there who are not members of Lupus UK so wouldn’t have received an invitation.
Before I knew it, the day was here. The car was loaded with boxes of raffle prizes, bottle tombola items, lucky dips, a quiz and stock to sell. We arrived at the hotel and immediately caused chaos as we moved tables and chairs as the group got bigger and bigger with those arriving to check in to stay the night.
It was soon time to start organising the room with our own little touches. We were fortunate enough to have a DJ offer his services for free so while he set up we got everything ready for our guests.
Seven o’clock arrived, the bucks fizz was poured and in my case, tasted, (well it was for quality purposes so I was allowed) and friends started to join us.
It was wonderful seeing people from the different groups meeting up and suddenly putting names to faces from the Facebook page. Soon the room was a hive of activity. We had people selling raffle tickets, people milling around the tombola, the lucky dip basket of boxed jewellery was doing the rounds and Kath Dempster our wonderful fund-raiser was circulating with her competition to win a quilt.
A few hours in and it was buffet time. Was it going to be alright I wondered? Well lots of empty dishes and compliments from those who had empty plates answered that question! During this time we went around the tables asking who wanted a quiz sheet. It is amazing how many people said yes, even before they know what is on it! Well it was all money in the pot!
Before the music started again we took time to remember Val Wilson. Val was an important part of the group for so long it was fitting she was remembered. Ray Wilson (Val’s husband) had put together some presentations and it was lovely to see how much those present appreciated the time to watch and remember her. I would like to thank Ray for doing this.
And so the entertainment started. Despite aching joints we did manage to get some on the dance floor. No doubt paid for the next day. We put ‘rest’ breaks in to deal with the quiz, competition results and the raffle. Nasrin, from the Bury group had organised a quick fund-raising game for us. The idea was to roll £1 coin towards a bottle, the nearest was the winner and the rest, well it went in the fund-raising pot. I don’t know what was more fun, watching those taking part talking tactics as to how to roll the coin or listening to others deciding if they bent down, would they get back up again! It certainly took some of us longer to make the ‘should we, shouldn’t we’ decision! Thank you so much Nasrin for organising that.
Before we knew it, it was time to leave. I spoke to many people leaving and was delighted with the response. It appeared the evening had gone well. We cleared up and then Elaine and I had the last job for the night. We took all our balloons outside and released them. Obviously still children at heart!
I am pleased to tell you that the night of fun brought us just over £600. I am delighted with this as the social side was just as important as how much was raised.
When I first posted news of the event on Facebook I said I hoped it would be an annual or bi-annual event, sadly at the moment I don’t think this will be the case. Fortunately the room was filled but with family and friends of only 16 members. We sent out over 650 invitations and reached nearly 300 on face-book so I am sure you can understand why I don’t know if we can do it again. Never say never though and maybe with some feedback we may reconsider.
My sincere thanks go to those who helped make the night a success. I hope those who did attend enjoyed it as much as you say you did.