Worster-Drought Syndrome Support Group

Present: Mark Mayer, Sarah Sugden, Nicki Turley, John Butt, Van​essa Butt, ​Karen Hinks.
Apologie​​s​:​ Monique Lauder

1 Opening of the meeting
2 Presenting the previous AGM minutes
3 Chairman’s report
4 Treasurer’s report 
5 Secretary’s repor
6 Minutes from Meeting

Dear Members

listed above are links to the reports and minutes from the AGM meeting held on Google Meet as well as link to the full meeting presented online via facebook live. I apologise for the echo in some of the video, no one watching told me this was happening. Here are some highlights of what happened in the meeting.

John, Vanessa and Monique have stood down as trustees of the group, we wished them all the best in the future and all the hard work they have put into making the group what it is today. A collection has been started towards a leaving gift for them, anyone interested in donation to contact us. 

Nicki has put her name forward for the role of Treasure, Sarah has put her name forward for the roll of Secretary, if there are no objections this will be carried. I will remain as your chairperson. We are looking for new members  to join the community and Trustees, as meetings will mainly going to be online it will make it easier for you to attend, I don’t want anyone to feel they can not take on the responsibility, we will guide you through the process,   

The Yearly AGMs will be held online when possible, if this is agreed by members it will give you all the opportunity to interact with the board of trustees and give feedback on what we do next. I know many of you struggle to get to the family days when we normally hold the AGMs 

Our financial situation is strong and we are looking at ways to spend this money on helping you all. A full copy of the report can be found here. Financial Report.

Family day will be held on  July 16th For the family day which will be held at Thames Valley Adventure Playground –  Bath Rd, Taplow, Maidenhead SL6 0PR. you can register your attendance here https://wdssg.org/wds-family-day-acceptance-form/  look forward to seeing you if you can make it.

AOB if you could give feedback and accept these minutes by clicking on this link provided feedback form this will be most helpful. If we do not hear back from you we will also accept this to be there is no objections to the changes made within the committee.

Kind Regards,
Mark Mayer,
Chairperson.

 

Dear Members

This is your offical invite to this years AGM, which will be held online separate from the family day, This is to keep it short and enable more people to attend who normally can not get to the family days. We are also trying a new format to the AGM as we know not everyone will be able to join this meeting so we will be recorded and uploading to the website for you to view in your own time. This will also give members 28 days to object or make their views to the committee.

We are also aware due to the reduced number of trustees being able to help with the AGM this year, it has put more responsibility on the remaining trustees to get everything in order to keep within the constitution, in light of this we are allowing more poeple to comment on the AGM after the event so we can put these actions forward moving into the next chapter of the group.

We welcome any feedback and if you have any questions about how to join or watch the meeting then do get in touch. Keep an eye on the facebook page linked below and the website for updates.

Kind Regards

Mark Mayer

Chairman

Dear Members

We are holding the AGM online this year, this is to enable more people to be involved and give feedback to us, it also allows us to give you instant replies to any questions you have about the group as well as meet the current committee and say goodbye to the ones leaving us this year.

We will still be holding a family day but this is going to be separate to the AGM, The committee took this decision because not all the trustees will be able to attend the family day, plus it gives us a more relaxed day to be able to talk to you all one to one. We have so much expert experience within the membership and it would be a shame not to share what we have learnt about WDS over the years, but I for one find myself running around at the family days trying to get everything setup for the AGM so by moving this online it frees us up on the family days to chat and share our knowledge.

The AGM will be held on 22nd May 2023 in the evening, so keep an eye out on social media for more details on how you can take part and join in and watch. The AGM will also be recorded and posted for you to watch at a later date and you will be able to offer feedback via the website afterwards.

Another date to save in your calendar is July 16th For the family day which will be held at Thames Valley Adventure Playground –  Bath Rd, Taplow, Maidenhead SL6 0PR. you can register your attendance here https://wdssg.org/wds-family-day-acceptance-form/  

Look forward to hearing from you 

Mark Mayer 
Chairperson 
on behalf of the WDS committee 

Dear all,

Recent resignations of trustees have enabled us to find new people who would like to join us on the board of trustees. In addition to this I have considered changing the constitution, we have not looked at this for over 20 years now. Many things in the constitution can remain the same but other things like the number of trustees can change and the considerable large funds within research accounts can be looked at again so it can be better used to support the families and people with Worster-Drought Syndrome. This is your opportunity to make these changes. 

Why now? We have remained pretty much the same for so many years, with the same things happening but times have changed. Social media wasn’t even invented when the charity was set up. With so much information is available online now we are not really become a resource for that information, We have found ourselves mainly running family days for the younger children, while this is still beneficial for new and younger children it does leave a huge part of people affected by Worster-Drought out, this has also been shown by the drop in the numbers of our membership as a lot of you have taken to finding out information via social media and searching online. 

What does this mean for the charity going forward? This really depends on what you all would like. The current constitution doesn’t really reflect everything we can do now and under the current trustees it only meets the minimum requirements set by the charities commission. That said there is still a real risk of the charity closing and giving the money to a like minded charity. So many people have spend a lot of time raising money for us, it would seem a shame for the money to go to another charity rather than supporting us all. Giving this information my personal view as your chairman would be to use the money to enable the charity to grow and arrange some more events around the UK so each and every one of you can benefit from it. 

We cannot do this without you, I have spoken to some of the remaining trustees and members for their views this week. The view I have got back was to the charity to become more of a supportive role but in order for us to do this we need to think more local. With Worster-drought being so rare our membership is spread thinly around the country so arranging anything that pleases everyone is challenging. Experience has shown me that there are pockets of members around the country that due to their location don’t or can’t get involved like the Southeast and West of the UK and up north, this is a shame as both of these areas are beautiful parts of the country and have and have a lot to offer for days out. At the last committee meeting it was decided to create a private local WhatsApp group for us to arrange things on the fly without having to go through the whole process of contacting everyone to arrange events, The charity can then support you in anything you need to make these events happen with funds etc. 

Below I have created a feedback form for you to give me your suggestion so it can be added to list of things we can do to support you. In addition to this I am keen as your chair for you to contact me within the next week, if you do not feel able to fill out the form just drop me a message any way that suits you and we can speak on the phone, Like I say I have done this with some people already. If no one steps forward then there is a real risk that the charity would have to close but I will try my best to make positive changes to the group but I need your help in doing this. 

Mark Mayer

Chairman

https://forms.gle/ezhbKQuAeN1G1TMAA

Hi
At the last Family Day I did a short presentation on our experience with setting up a family trust and why.

The main thing I learnt during the discussions that followed was that several members said that they had a “Disabled Persons Trust” and I had not heard of this type. This goes to prove that it is advisable to get professional help if you go down this path.
From a little research I did I think you will find that the “Disabled Persons Trust” is also  known as the ‘trusts for vulnerable beneficiaries’.

I was also asked to put the slides from the presentation on the group’s website so here they are.
Having A Family Trust
John

A Checklist for Parents with Children with Mental Health Problems

http://www.rcpsych.ac.uk/healthadvice/partnersincarecampaign/checklistforparents.aspx

For Teachers: Children’s Mental Health Disorder Fact Sheet for the Classroom

http://www.bridges4kids.org/MHClassroomFactSheet.pdf

Promoting Mental Health at Home: How to Design the Perfect Meditation Room

https://www.homeadvisor.com/r/meditation-room/

Healthy Eating and Depression: How Diet May Help Protect Your Mental Health

https://www.getselfhelp.co.uk/docs/healthy%20eating%20depression.pdf

5 Ways to Use Feng Shui in Your Home Design

https://www.redfin.com/blog/2014/11/5-ways-to-use-feng-shui-in-your-home-design.html

Drug Abuse and Addiction: Recognizing the Signs and Symptoms of Drug Addiction

https://www.helpguide.org/articles/addictions/drug-abuse-and-addiction.htm

Anger Management and Addiction: How to Take Charge of Anger Issues in Sobriety

http://www.swiftriver.com/anger-management-addiction/

Elderly Mental Health: How to Help Your Senior

https://www.shieldmysenior.com/elderly-mental-health/

Coping with the Loss of a Loved One

https://www.cancer.org/content/dam/CRC/PDF/Public/6036.00.pdf

Issue 37 – December 2017

From the chairman,  Fab Fundraising, Research and member stories

Download: Issue 37  Christmas 2017, PDF opens in new page.

For those of you that could not make this years AGM and get  together Jacqui of the Carers Trust  promised some further information that may be of help to all members so I have repeated it below.

 

I mentioned in my talk the collaboration we have with the Disabled Children’s Partnership to campaign to improve the rights of parents of disabled children. Below is the information we circulated to our local Network Partners about their current campaign. All your members can sign up by clicking on this link to receive updates and participate in the campaign. There is also further information via our website.

 

Disabled Children’s partnership

Carers Trust is part of the Disabled Children’s Partnership – a group of charities campaigning for disabled children and their carers. We have plans with our partners to campaign for better services for parent carers and disabled children. The DCP are currently building up their support base, so if you, or any of the carers you support, would like to sign up to receive campaign updates directly from the DCP please do.

 

Other information including the booklet on relationships can be found on our website www.carers.org under the Help and Advice section. We used to have more information under the holidays section here but this has been reduced due to capacity issues to keep it up to date. However, the MS society have more information about their own respite places but also links to other information about accessible places across the UK that may be helpful for your members.

 

If you need  to find local carers services, both our Network Partners via our website or via their local authority as they can offer valuable information, advice and practical support for them. If they have any problems finding information, they can contact us via email info@carers.org or via our general phone number 0300 772 9600.

Dear WDSSG Members

As you may have read in the latest newsletter we are planning to change the format of the “AGM & Family Day” next year (2017) by dividing it into 2 separate events. An AGM & Get together to share experiences in London and secondly an adventure weekend for the young and young at heart like Mark and John.

We have looked at a number of venues and drawn up a short list on which we would love to hear your opinion.

1. The Calvert Trust Exmoor http://www.calvert-trust.org.uk/exmoor/exmoor
   
   
2. The Bendrigg Trust Cumbria  http://www.bendrigg.org.uk
   
3. Hill Top Outdoor Centre Sheringham  http://www.hilltopoutdoorcentre.co.uk/

At present we are planning to go sometime in September when the weather is likely to be good and the water is at its warmest.

Please have a look and let us know what you think, would you come, which would you prefer to go to, do you know of a better venue? Please send your ideas to the committee at committee@wdssg.org.uk .

Unfortunately the group will not be able to sponsor such a meeting so it will have to be self-financed.

Yours

The WDSSG Committee