LUPUS DROP-IN 
SECOND THURSDAY of EACH MONTH

2019
Lupus Drop-In
has relocated to intu Merry Hill Shopping Centre
see below for location and directions from car park
Plenty of buses serve the Shopping Centre
intu Guides (wearing old-gold jackets) will be pleased to take you to the Bold Room         if you ask nicely!

Next Lupus Drop-In

           
Date: Thursday, 9th May 2019
Time: 2.00 pm to 4.00 pm

The BOLD ROOM
intu Merry Hill Shopping Centre Brierley Hill
DY5 1QX

Theme: World Lupus Day
          Guest Speaker: Theme:
           Tax, Care & Toy Boys!
       
            

          Hope to see you there

Thursday, 11th April 2019
The Drop-In was preceded by WMLG AGM during which the existing Committee members were all re-elected.
Chair: Yvonne Norton      Treasurer: Peter Norton
Membership/Minutes: John Oakley
Members: June Oakley, Sandra Ferreira, Mark Critchley, Mandy Critchley, Caroline Heise
Auditor: John Oakley
Following the AGM, the 14 members present watched a video presentation of Advances in Lupus Treatments by Prof Chris Edwards.

Thursday, 14th March 2019
Good to see a few extra people at the Drop-In, 13 in total. Chris and Deb from Healthwatch Dudley spoke about the organisation, how it works, how people can be helped, and how all healthwatch groups throughout England are linked together. Members responded to the request to complete a survey looking at the question of what people with long-term illness want from the health service. A very interesting afternoon with the gift of a pen and shopper as a reward for survey-filling.

Thursday, 14th February 2019
In spite of people asking for the Drop-In to be relocated to an accessible place with nearby free parking, only 9 people (the usual 'hard core') attended this session. The video presentation on Treatment in Lupus was held over and the future of the Drop-In was discussed. It was agreed to continue the facility and work on the new plans of bi-monthly Guest Speakers. A representative of Healthwatch Dudley is booked to speak 14th March. Hopefully, this will attract more members/friends.

Thursday, 10th January 2019
11 people attended the first session of the year which was held in the new venue at intu Merry Hill Shopping Centre. Unfortunately, the session got off to a late start when paramedics were called to help one of our members who had been taken ill. All was ok, though, and the other members entertained themselves (and drank coffee) whilst waiting for the meeting to 'get going'. Once everyone was back together, a conversation on 'Where do we go from here?' soon developed which produced several good ideas and advice to help people with lupus look after themselves during 2019.

Thursday, 13th December2018
8 people joined together for the Christmas session and enjoyed a variety of snacks and good conversation. The WMLG Annual Christmas Raffle was also drawn. This was the last Meeting at Russells Hall Hospital, hopefully, more members & friends will attend the Drop-In when it moves to Merry Hill, January 2019.

Thursday, 8th November 2018
8 people attended this session with one lady for the first time. There was much discussion on ways to cope with Lupus during the winter, top of the list being to have the flu vaccination and to keep warm. The effects of Raynaud's and Diabetes with Lupus was also discussed. An enjoyable afternoon.

Thursday, 11th October 2018
Again, a gathering of 5. After viewing the Good Luck video sent by Sir Lenny Henry for the Lupus Information Day, 6th October, time was spent discussing the event and forward plans for the Drop-In. The usual question was also asked - 'where are the members who ask for Support Groups to be available?'

 Thursday, 13th September 2018
Beginning the session in the café, the 5 attendees moved into a meeting room when it became free. Following discussing plans for the forthcoming Information Day and a report on the visit to Merry Hill to check out the Community Room, a video of a presentation on Fatigue by Dr Natasha Jordan was shown. An excellent Talk with good advice and an enjoyable afternoon.

Thursday, 9th August 2018
With a low attendance of 5 (who are regulars and Committee members) it was decided to hold back on the planned presentation until more people are present, instead, there was discussion on the future of the Drop-in. It was agreed that facilities at the Merry Hill Centre should be investigated as the cost of car parking and the distance from the car park to CEC is thought to be the main reason for low attendance,

Thursday, 12th July 2018
With all the Meeting rooms being booked, the Drop-In was held in the café. Not a problem with just 4 attendees. A quiz on the effects of the sun brought a few surprising answers. The quiz may be repeated when more people are present. It was good to have Janet back albeit covered in bruises and with an arm in plaster, the results of a couple of nasty falls.

Thursday, 14th June 2018
This was a quiet Drop-In with only 4 attendees, including Lupus Specialist Nurse, Rene Koumi. Following discussion on lupus issues, the four ladies shared an enjoyable chat whilst watching finches feed their young on the inner courtyard of CEC. Yvonne and Peter will be back next month when they will be able to report on their recent Lupus Travels.  

Thursday, 10th May 2018
Unfortunately, due to a combination of unexpected events, the Drop-In had to be cancelled at short notice. Attempts were made to inform as many people as possible, however, not everyone picked up the news. Apologies go to those who had a fruitless journey to RHH.

Thursday, 12th April 2018
The Drop-In was preceded by WMLG AGM during which the existing Committee members were all re-elected. Caroline Heise had been nominated to join the Committee and she was elected unanimously. Welcome Caroline!
Following the AGM, Yvonne gave a presentation on Clinical Trials which led to a lively discussion.

Thursday, 8th March 2018
Yvonne gave a presentation on Fatigue which led to discussion and questions which Rene Koumi, Lupus Nurse, was able to respond to. Dr Niki Erb also popped in and updated the 9 members on changes that are planned by the CCG and RHH.
Sandra Harris, elected Governor of Dudley NHS Foundation Trust, will check this further and report back to Yvonne.

Thursday, 8th February 2018
A video of the presentation given by Prof Chris Edwards at the LUPUS UK AGM/Information Day, May 2017, in which he discussed current and new treatments for lupus, was watched by seven members.  Prof Edwards highlighted the reasons why certain medications are prescribed and how patients should expect to be treated. The new lady, recently diagnosed, who was present found this particularly helpful.

Thursday, 11th January 2018
The plan for the first session of the New Year was to consider the theme 'Facing up to Lupus' in three sections - 'What is Lupus?' How can we cope with Lupus?' 'Is there a New Year Plan for Lupus?'. Using a short introductory video and a series of Q & A's from LUPUS UK website, there was much discussion between the seven members present and the various symptoms leading to diagnosis and medications being taken were compared. The New Year Plan is still be worked out!

Thursday, 14th December 2017
Due to a lack of vacant meeting rooms, the Christmas 'party' was held in the café. With a good assortment of nibbles and fruit juices to add to tea/coffee and plenty of conversation, the afternoon was most enjoyable.

Thursday, 9th November 2017
The video "The Invisible Monster" was shown and there was discussion among the seven members about the content, all thought it stood a good chance of either winning or being highly placed in the forthcoming Charity Video competition. Two other LUPUS UK videos were watched along with the film of Colin Bevor's presentation at the National Information Day during May.

Thursday, 12th October 2017
Rene Koumi, Lupus Nurse, was able to give very  useful information on the flu jab and the effects that can be caused by the 'nose vaccine' given to young children at school. Lupus Awareness Month and the new LUPUS UK videos were discussed and ideas put forward for future campaigns.

Thursday, 14th September 2017
A discussion on 'What are we missing?' brought the responses: 'Training and  information at Doctors' surgeries' and 'Worse scenarios of the disease should be highlighted'. These are projects which WMLG/ LUPUS UK have addressed many times and will be visited again in the future.                   

Thursday, 10th August 2017
It was good to see Caroline walking unaided for the first time following her hip operation. Watching a new lupus video raised some interesting points and gave information that hadn't previously been known, particularly in reference to skin. The planned 'What are we missing?' theme has been held over until the next session.

Thursday, 13th July 2017
Unfortunately, a meeting room was unavailable for this session so sofas and tables were moved around in the CEC café area (we did start off in the courtyard but it proved too windy). It was good to see last month's 'new' lady returning and a long-time WMLG member attending for the first time. Following the saga of Yvonne & Peter's return journey from Madrid (EULAR), the theme of Pain Management was visited. Discussion highlighted the difference in services offered to patients not only attending the same hospital but, also, seeing the same medical Team. This is an issue which we plan to follow up.  Next month the question 'What are we missing?' will be asked, that should lead to some interesting responses!

Thursday, 8th June 2017
Just six people at this session, two regular members, a 'new' lady, Lupus Nurse Rene Koumi and Yvonne & Peter. However, the theme of Lupus and Holidays made for a good discussion, especially looking at the LUPUS UK Blog of the same title, published earlier in the week. Suggestions of insurance companies and various sunblocks were swapped which was very helpful. It was good to be able to spend time with our 'new' lady and she left with a good supply of lupus information and, hopefully, feeling better about the possibility of having lupus than when she arrived.

Thursday, 11th May 2017
Prior to the Drop-In, seven members helped with the WLD Cake Sale raising, with donations, £104. Mark Critchley then joined in for the WMLG AGM during which the existing Committee members were re-elected en-bloc for a further year. John Oakley was approved as Hon Auditor for a further year. Following the AGM, Yvonne & Peter spoke about BSR 2017 which they had attended and there was general discussion about various aspects of lupus with Rene Koumi and consultants from Lupus/Rheumatology (who had popped by to purchase cakes) being called upon to answer a few questions.

Thursday, 13th April 2017
Eleven members shared a most interesting afternoon when Paula Bache and Sean Ralph of Dudley Citizen's Advice Bureau joined the Drop-In to speak about Energy Saving. There are now eleven people fully clued-up on Smart Meters and how money can be saved on energy bills! CAB is able to offer 1-1 help/advice on saving energy. Yvonne Norton can provide contact details if required. Thanks to Paula and Sean for a most informative discussion.

Thursday, 9th March 2017
An enjoyable afternoon when the seven members present watched a video intended for nurse training but was, in fact, good for patients who know what their lupus is. Following the video, discussion began, initially, about lupus but, as so often happens at the Drop-In, moved on to setting the world to rights! Plans were also discussed for a WLD fund raising cake sale.

Thursday, 9th February 2017
In a change of plan, the seven members present watched a cartoon-style video explaining how lupus is diagnosed and some of the symptoms that can arise. This led into a discussion on the various points that the video had highlighted. A second video gave the views of a lupus patient, showing how she lives her life after enduring lots of treatment and changes to her appearance. This was a powerful and thought-provoking film which, also, lead to discussion. It was good to have Rene Koumi join the Drop-In for the whole of the session and to give a 'medical contribution' to the discussions. 

Thursday, 12th January 2017
With all CEC Meeting rooms being booked, this month's session was held in the café. In spite of taking up a small space, the leather sofas were reported to be very comfortable and there was good discussion.  It was great to have new member, Vicki, and her husband, Sam, taking an active part in the discussions. From beginning with making a list of 'New Year promises' that lupus patients should make and the importance of being prepared for unpredictable pain, such as headaches, and taking pills that will not be contra-indicated with prescribed medication, talk led into lupus in general and the support everyone receives from their consultant and/or GP. As if on cue, at this point Dr Niki Erb and other consultants from Rheumatology/Lupus stopped by en route to a departmental meeting! All 9 of those present agreed that it had been a most enjoyable and informative afternoon and that it is good to have a mix of general discussions and more structured sessions throughout the year.

2019

Thursday 10th  January: Lupus - where do we go from here?
Thursday 14th  February: How is Lupus treated?
Thursday 14th  March: Presentation by Healthwatch, Dudley
Thursday 11th  April: WMLG AGM/Advances in treatments
Thursday  9th  May: World Lupus Day/Tax, Care & Toy Boys!
Thursday 13th  June: Let's Talk Lupus
Thursday 11th July: Coping with Lupus
Thursday  8th August: Where is Lupus in the World?
Thursday 12th  September: Lupus & More
Thursday 10th  October: Lupus Awareness Month
Thursday 14th  November: Lupus & Winter
Thursday 12th  December: Lupus + mince pies/snacks - Party-time

                         All sessions 2.00 pm - 4.00 pm

From the Photo Album

Last session of 2018  at Russells Hall Hospital

  
 Caroline's hand-made Dutch Gnomes -  
 Great for Christmas gifts 
  

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(l-r): Gill, Caroline, Yvonne & Denise at the Cake Sale May 2017

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Towards the end of the Sale, most of the home-baked cakes have been sold

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Paula and Sean, Dudley CAB (far right, back row), with members during April 2017 information session 

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        Yvonne and Caroline at the
        'Christmas Party'
         December 2016

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The Mayoress of Dudley, Jayne Waltho,
visited the Drop-In,
May 2016, to speak about some of the fund raising events held on behalf of the Mayoral charities

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Getting into the Christmas party spirit - Dec 2015

10th birthday party & cheque presentation
      Thursday, 17th October 2013

Above: Cllr Steve Waltho, Dr Niki Erb  and Yvonne with the                Deputy Mayor of Dudley, Cllr Margaret Aston, and her Consort,      Cllr Adam Aston, with representatives from Action Heart     and Leukaemia UK