LUPUS DROP-IN - CLINICAL EDUCATION CENTRE (CEC)
RUSSELLS HALL HOSPITAL, DUDLEY
SECOND THURSDAY of EACH MONTH

Next Lupus Drop-In

           
Date: Thursday, 10th May 2018
Time: 2.00 pm to 4.00 pm

Clinical Education Centre (CEC)
Room - check notice board in  Reception
Russells Hall Hospital
Dudley
DY1 2HQ

Theme: World Lupus Day
            
       
            

          Hope to see you there

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 Harries, 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.

Thursday, 8th December 2016
Disappointingly, only 4 people, member Caroline, Nurse Rene, and Yvonne & Peter, attended so the excellent selection of food and juices for party-time 
remained unopened (except for 2 teacakes and a box of juice). It was good to be able to chat during the session but it would have been much nicer to have had a repeat of last year's 'party'. It was unfortunate that a couple of regular attendees had hospital appointments and one was recovering from surgery, hopefully, everyone will be well enough to attend the last session of 2017.

Thursday, 10th November 2016
To start the theme 'Let's Talk Lupus' the 10 people present watched the video released by LUPUS UK to mark Lupus Awareness Month - "Lupus: the Invisible Monster". This was the first viewing for most and  there was considerable discussion on the points the video raises, the group certainly 'talked Lupus'. In response to a query about flu injections, the appropriate page on LUPUS UK website was viewed. This answered the questions being put forward. At the end of the session it was agreed that 'Let's Talk Lupus' had been very helpful to everyone including Lupus/Rheumatology Nurse, Rene Koumi.

Thursday, 13th October 2016
Having recently returned from Wurzburg, Germany, and Venice, Yvonne & Peter spoke about some of the comments/ideas they picked up during the two Conferences they attended. Yvonne gave the presentation on MASTERPLANS which she had given to the LUPUS EUROPE Convention. This brought many questions and led into a good and lively discussion.

Thursday, 8th September 2016
Eleven people watched the video on Self Management filmed at the Strathclyde Information Day during May.  A discussion on ways to self manage lupus followed. Top of the list was seeking out information with Google being a contender for first port of call. A rider was added that care should be taken to view reputable websites e.g. LUPUS UK, WMLG, other Regional Groups and LFA. NHS Choices is also a good source. It was agreed that GPs should be approached, however, difficulties securing appointments and the lack of time GPs can give each patient usually ruled this out as a preferred option.

Thursday, 11th August 2016
Attendance was expected to be low for this session knowing that several members are recovering from surgery/undergoing hospital-based treatment or on holiday. Four people were present and, using LUPUS UK website, discussed the theme of The Sun and Coping with Lupus. Extending discussion into cosmetics and the adverse reactions people with lupus often receive from the general public made a very interesting afternoon.

Thursday, 14th July 2016
New Lupus Nurse, Rene Koumi, joined this Drop-In session when, after watching the LUPUS UK video 'Living with Lupus', there was discussion on medication, including the new biologics and side-effects of various drugs. The problems that can arise with hands and feet in the lupus patient were also discussed. It was good to welcome a new lady paying her first visit to the Drop-In and to welcome back a member following hip surgery and to see how well she is walking now she is pain-free.

Thursday, 9th June 2016
With Yvonne & Peter attending the EULAR Congress in London, this Drop-In session joined forces with  the Dudley Arthritis Group when Dr Rainer Klocke, Consultant Rheumatologist, conducted a question-and-answer session. He covered a variety of topics of interest to both groups, highlighting the similarities between RA and Lupus. He also explained how several basic diagnostic tests are conducted and assessed and outlined the use and impact of a number of drugs used to treat both conditions. A lively discussion between those present covered several issues, with fatigue once again being highlighted as the primary problem confronting all patients.

Thursday, 12th May 2016
Following a short AGM where the 7 current Committee members were all re-elected, the Mayoress of Dudley, Jayne Waltho, spoke about some of the events that have taken place during the year since she and the Mayor, husband Steve Waltho, had been in office. With just 7 days left as Mayoress, Jayne was pleased to spend her final solo official engagement with attendees at the Drop-In. The Mayor and Mayoress are strong supporters of WMLG and it was good to be able to say thank-you on 'home ground'.

Thursday, 14th April 2016
Interesting and 'educational' session. Yvonne & Peter had prepared a presentation explaining Clinical Trials. This was followed by an update on the MASTERPLANS project and advance news on plans for WLD and the World Lupus Federation.

Thursday, 10th March 2016
Seven people at this session (another popped in to apologise for not being able to stay). The partner of a lupus patient discussed his plans for a fund raising venture which he hopes will be supported by WMLG/LUPUS UK. General discussion followed which seemed to be helpful. The planned theme has been held over till next month.

Thursday, 11th February 2016
Thank you to Dudley Arthritis Support Group for giving a warm welcome to Drop-In members when the two Groups merged for a presentation by Dr Liz Hales, Research Health Psychologist. Liz remains the only person in the UK to have this post! The Drop-In is, once again, based in the Clinical Education Centre (CEC).

Thursday, 14th January 2016
Following the decision for the Drop-In to move back into the main hospital, the only available space, Ward A4 Waiting Room, was given a try. Advance thoughts that the room was too small and that there would be difficulties providing a hot drink were proved to be very true. With 12 people there was no room to do anything other than to sit and talk. However, it was agreed that John Oakley would e-mail a short questionnaire relating to Yvonne's planned Research Project to on-line members and copies would be posted to Drop-In attendees who are not on-line. John was 'sent out' to see if it would be possible for the Drop-In to revert back to the Clinical Education Centre (CEC). He returned with good news - from 11th February, CEC will again be our base!

2018

Thursday 11th  January - Facing up to Lupus
Thursday   8th  February - How is Lupus treated?
Thursday   8th  March - Fatigue
Thursday 12th  April - WMLG AGM/Clinical Trials
Thursday 10th  May - World Lupus Day
Thursday  14th  June - Let's Talk Lupus
Thursday 12th July - Coping with Lupus
Thursday 9th August - Lupus in Europe/World
Thursday 13th  September - Lupus & More
Thursday 11th  October - Lupus Awareness Month
Thursday   8th  November - Lupus & Winter
Thursday 13th  December + mince pies/snacks - Party-time

                         All sessions 2.00 pm - 4.00 pm

From the Photo Album

  
  Lupus Bears and 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