Your feedback matters

Hi everyone, I hope you're having a peaceful time.
So question time, I'd be really grateful if as many of possible of you could answer 2 questions.
1... How did you find out about us.
2.... Have we been helpful to you.
Thank you

  • Tim Harris I think it was purple day, but you were in the arndale and if it wasn't for my daughter wanting something in Sainsbury's I would have missed you. So I would say that was y sign ! And yes you have been helpful, just knowing someone else knows what is going on. Thanks x

  • Zoe Harland Hi, my mum found you on Facebook, you have been so helpful and supportive throughout our journey with epilepsy so far, all ways there to listen and give advice don't know what our family would have done without you your amazing 💜💜💜

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    Rose Thomson I found you on Facebook and yes found you very helpful. Thank you

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    Lynsey Hutchings I googled and came across you. Have you been helpful. Omg. When the waves were crashing over my head you were there.
    When the joyful moods thanks to meds changing made me want to cry. You were there.
    When I was in London for an over night EEG you were there.…See more

  • Nicki Funnell I first found out by a related page on Facebook and yes you've been very helpful as there are still things I never knew about Epilepsy after 24 years as times change and so dose the advise and medication .

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    Tracey Ball I found you on facebook. Youve been an absoulote rock for all of us.l cant thankyou enough.xx💜

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      Tracey Ball Michelle Shrieves you are more than welcome. Hope it helps raise some funds for you. Just a little support back, for the massive support you have been the past few months.xx

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    Michelle Shrieves The reason I am asking is because I'd like to find out if you have seen us on posters in hospital's or doctor surgeries, or was it via your Epilepsy nurse , from another group, did you meet us at an event or find us via Google..
    Thank you to everyone 

    • Julie Cooper 1.I found you on Facebook on ESUKS.💜 And found we had so much in common. We have even met, when you came to visit your family. And even my son stayed out of his Man Cave for over an hour chatting to you & Darren. That was amazing!! 2. You have been so wonderful in supporting me with all my problems,💜thank you to you & Darren for taking my mind of everything. Take care luv Julie xx

  • Maureen Payne I came to the group because of my Son.

    Tim Harris Also thinking about it when I was first diagnosed we do have axa ppp medical number to call if we need any information I believe it was your number they gave me but because it was Eastbourne and I couldn't drive I didn't call if I was given a push or my GP or consultant at conquest told me would probably have called

  • Carla Gunther Was Adams Somebody I know has epilepsy so when I got the shock diagnosis I asked him for some advice and he gave me your website and phone number. I had a really fantastic talk with Michelle Shrieves who was very very helpful and understanding. Waiting for you t…See more


  • 1. We met at the Eastbourne 999 emergency service event in 2018. We had seen an advert to say that you would be there. My dad was coming home in three weeks and we were so worried as we were going to be looking after him with all his conditions …

    Michelle Shrieves Sharon Vernon your Dad is an amazing man and we were so pleased we could help you get him home 😊

  • You do an amazing job and you Know we are only a phone call away ...
    I love the photo 
    Love to you all ❤️💜

 hi  Darren & Michelle

 

The feedback from people that were there for your presentation includes the words fantastic, brilliant and amazing. Everyone was very impressed and learned a lot. The video presentation was very informative and we quickly realised that you know more about epilepsy and how it affects people than a lot of people in the medical profession. The information you gave us was clear and easy to understand. We are all very grateful to you and Darren for giving your time to help us understand epilepsy a little more.

 

I have been asked to say that it would have been nice to have some of the visual presentation as handouts to take away as people were too engaged in the presentation to take many notes. If you have any of it as printable handouts that you could send me, I can circulate it to the other people that wee there.

 

Since your presentation our members have been putting Epilepsy Sussex forward whenever we have had the opportunity to nominate charities. Hopefully there will be some success that will raise funds for you.

 

I hope you are both well and wish you a very Happy New Year.

 

Best wishes,

 

USDAW branch 

 

Debbie x

Walter Louden

Can I just say how much I, as a Nurse Specialist in Epilepsy, appreciate the support given to people in this area by Epilepsy Sussex. It is invaluable and much appreciated. Keep up the good work.

Darren Shrieves Thank you Walter. For huge vote in confidence for us and what we do I must say it is not easy but we do try our best and I hope we are appreciated by the many other people on this page

Alex Barling Walter Louden is a top man and help me out loads and this group has help me out as well keep on ur great work Walter 😁😁

Julie Cooper Thank you for your amazing support & all you do for others is wonderful 😘💜 take care luv Julie xx

Lynette Thorn Walter louden is my nurse and before him i lost faith in the nhs. I did not except i had epilepsy and he has been amazing with so much support. He gave me this site too and Michelle Shrieves has both support me and helped when i was having a bad seizure. Thank you for all you do and to the group members stay safe and kept smiling i know its hard but we are strong xx

Linda Boyes Lynette Thorn you are so lucky! We had the opposite sadly. Walter Louden left us in East Sussex and has been irreplaceable. So we have no faith now!! You are soo lucky! Best wishes! X

Michelle Shrieves Linda Boyes you still have us x

Linda Boyes Michelle Shrieves yes I know and am forever grateful. You are all amazing and always know where you are to get help. Thank you again everyone! X

Kris Payne 95% of that praise must go to Michelle and Darren who work tirelessly to keep EpilepsySussex up and running, thank you both for what you do.

Walter Louden Agree and group members support and help each other.

Michelle Shrieves. Kris Payne thank you but Maureen Liza and yourself are our support x

Darren Shrieves  Kris Payne 

95% 😂

Kris Payne Darren, can't give you all the credit now can I 🤣🤣🤣

..

Sharon Vernon Totally agree when we found you guys we just felt like we had friends who understood and could help! As you know on many occasions you were wiping our tears away. You are a charity that really helps not just blind words xxx

Michelle Shrieves   Sharon Vernon I do remember that first meeting well, you and mum in the back of the welfare van, we love helping you all xx

Sharon Vernon Michelle Shrieves younsoent hours talking to us and helping us we want to help you more and promise in the future we will xx

Sharon Vernon we were happy to help and will always be here for you all xx

..

Michelle Shrieves  Well guys I honestly don't know what to say...Walter thank you so much for the huge vote of confidence, as Darren said it's not always easy but it is rewarding. 

I hope each and every one of you on here know that we are here for you and will do whatever we can to help.
But as Walter says you all support each other which is what it's all about and I personally think you all do a great job ❤️

Julie Cooper Thanks for all your support today Michelle 💜💜just listening to me means so much take care luv Julie xx

Michelle Shrieves Julie Cooper any time Julie x

Group member  Happy christmas to you both, and heartfelt thankyou for supporting my daughter Zoe through a very emotional and worrying couple of months.💜xx

Michelle Shrieves to Group member  merry Christmas Tracey, we are happy to support all of you I think Zoe is doing really well during this difficult time xx

Group member Merry Christmas, can't thank you all enough you've all been a great help in this group xx

Michelle Shrieves to Zoe glad to be of help but you remember you're doing a great job.

Merry Christmas x

Group member to Michelle Shrieves Thank you so much xx

Lynsey Hutchings My daughter had a bit of keppra rage....... but with the help from Michelle and Darren I kept it together. X

Love

 

Tracey Ball   Tracey and 7 others joined Epilepsy Sussex (closed group) within the last two weeks. Give them a warm welcome to your community! Lynsey Hutchings great to know that there is such kind and caring people out there who will help and support others through this tough time.xx

 Lynsey Hutchings Infact the pair of them are bloody worth their weight in gold x

 

Love

Michelle Shrieves   Michelle and 3 others manage the membership, moderators, settings and posts for Epilepsy Sussex (closed group). Lynsey Hutchings thank you ❤️

Lynsey Hutchings  Michelle Shrieves I've not been around much but when I needed to scream shout cry u are there x

3 August at 22:51 Sharon Vernon

I just wanted to say thank you for all your support and help Epilepsy Sussex. We have learnt more in the last few weeks than the last 3 years.. wish we had met sooner ... you do an amazing job and as soon as we can we want to help out more xx

 

Sharon Vernon Thank you so much for all your help and advice it was so useful!

 

EpilepsySussex Sharon your dad's watch is all sorted and yes we are happy to help you

 

Sharon Vernon We cannot thank you enough we were overcome with emotions about

how kind you have all been. Thank you so much it does not seem enough - we are truly

grateful for all your advise the journey is so hard and I just wish we had found

you all sooner x

Sharon Vernon

Well dads first night home for 3.5 years and just as he was leaving the home he has been in he had a tc... now I’m sitting next to him and he is fast asleep with his first night in the home he left all those years ago, wearing his watch! All a bit nerve racking for us - he was smiling at us about doing his care - think it must have been like laurel and hardy! x ps thank you everyone for all your support

Shrewsbury Epilepsy Support Group Aaaaw thank you so much. Can't thank you & Darren enough as you've been such a help. You can't realise just how much I appreciate it. x

Angelika Barre You've achieved loads in the last few years, well done. And a big thank you for your charitys donation towards Shrewsbury Epilepsy Support Group. I can promise everyone that 100% of it went straight towards the set up of our charity, which is now a big hit in our area 😊 x

Walter Louden A great job and thanks again for all you do. I hope 2019 sees Epilepsy Sussex go from strength to strength.

Julie Cooper Hi I am not Sussex lady, I am good friends with Michelle 🤗 I was from Essex origianally moved to Cornwall when I was 10. I am supporting these as Michelle & Darrenbeen good support to me 💜take care luv Julie xxx

Tracey Ball I will too, we have only recently just joined, and think you are a fantastic group of people, the support, help, information, time and reassurance you give to others is a massive help, so thankyou.💜

Epilepsy Sussex shared a post.

Published by Michelle Shrieves · 11 July at 17:35

As a lot of you know support groups like this are few and far between, we were given an opportunity to help a young lady who is starting her group and we believe that she will go far.

 

Yes we do like to help other charities

Your payment has been sent and will be credited to the beneficiary's account immediately,

Hope this will help and paid into the bank account below ,from EpilepsySussex and  keep up the good work ,


Beneficiary Shewsbury epilepsy

Reference DONATION HELP
Amount £ 500.00

11 Jul 2018 

Angelika Barre

Oh my goodness, I just checked that it had gone through. I'm left completely flabbergasted at the huge kindness of your charity. After speaking to Michelle, I thought she meant about £50! I can't believe it & I feel so lucky. I can't thank you all enough. I can whole heartedly promise that every little bit of your money will be used for our charity and our sett up. Your charity has definitely inspired me to go further with my charity & how I can go about doing this. Please thank everyone so much.

Shrewsbury Epilepsy Support Group

11 July at 16:12 ·

Please can everyone say a huge 'Thank you' to everyone at 'Epilepsy Sussex' (a wonderful charity) who have extremely generously donated £500 of their own money, to help with some of the costs in setting up our charity. They once started from nothing too... but are now well established in their community. They raise lots of awareness about the condition, fundraise, have volunteers & even have a helpline! Just goes to show what can become if you put your heart into it. https://www.epilepsysussex.com/

Shrewsbury Epilepsy Support Group

13 July 2018

We can definitely do that (in fact I've already started). I have desperately needed to advertise by putting up some posters- which we can now afford. We are also needing a table & gazebo so that we can set up at events & raise awareness of our group & epilepsy. Your group has given me some great ideas of what I can do. Once again, I can't thank you enough. Don't worry, there's no way I'll be loosing contact- your group is far too precious.

Hi Darren

Yes the team were all very pleased with the training and its content . 

Most of the staff felt they had learnt things that they did not know and had gained confidence in this area.

I am very pleased with the feedback , so once again thank you both so much.

Warm regards

Hollie

 

 

Kind regards​

Hollie Taylor

Deputy Manager

Supported Living/Outreach East Sussex

Aspens care 

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