Spring Weekend 5 – 7 May Sunningdale near Ascot

Support & Respite Weekend Spring 2017

5 – 7 May 2017, De Vere Sunningdale Park Hotel, Ascot

After a very successful Autumn 2016 Support & Respite weekend at Nottingham, it is once again time to look forward to Spring and the next Support & Respite weekend. This year the event is back at Sunningdale and will be our last weekend there before the hotel closes its doors for good – a great shame.

Details are still being finalised but the weekend will follow a similar format to previous events and professional childcare will also be provided at this event.  The event will include an informal buffet dinner, followed by a quiz on the Friday evening, on the Saturday we will have guest speakers and therapy sessions during the day, a carers and a children’s session.  In the evening we will be holding a military style dinner in the conference centre. Dress code is mess kit for those still serving and black tie, a suit or just something smart for retired members, equivalent for ladies – posh frocks encouraged if you have one!  As we are back at Sunningdale we will be allowed to have our own bar with drinks available at a much reduced price.

On the Sunday morning we will be holding a more informal than usual Annual Meeting, followed by a questions and answer session and afterwards to complete the weekend in style there is an all-inclusive buffet lunch in the hotel’s Steam, Bake & Grill restaurant; we would encourage everyone to stay after the annual meeting and take advantage of this before they leave for home on Sunday (so much better than a service station!).

These support weekends are free to attend, however as we are holding a formal dinner with wine included we do ask for a £15 per head donation (£7.50 for children) to help cover the additional cost of providing this. Of course the cost of the weekend is considerable so donations above this amount from those who feel able are very welcome. Please send a cheque made payable to Mutual Support to the treasurer at the address on the booking form, alternatively please make yur donation online via the groups BT MyDonate page (if you pay this way it is crucial you send us a copy of the confirmation e-mail, otherwise we won’t know you have donated).

Sunningdale Park provides a very relaxing and enjoyable atmosphere for the weekend and with places limited, please book your place(s) early to avoid disappointment.

You can download the Application Form Spring 2017 bookingform (1), complete and email to events@mutual-support.org.uk

Alternatively post a hard copy to the address on the booking form.

Sarah Edginton – Events Organiser

Please do not send messages cancelling through the Mutual Support Facebook group as these are very likely to be missed and we will be charged for your non-attendance

Previous Events

Mutual Support’s 25th Anniversary weekend

Well what an amazing weekend we had –excellent speakers, productive workshops, relaxing therapies, brilliant childcare and fabulous company; the anniversary weekend was, in short, fabulous – sorry if you weren’t able to come.  The Committee worked hard to make the room look special (on a budget) and I think we achieved that – it was all a bit of a rush at the end of the working day, but we did an amazing job and had fun doing it.

A special thank you to Diane Macey who made the fantastic cake for us as a very generous gift to the group, the cake was a superb replica of our logo, tasted delicious and was a fitting end to a wonderful meal and evening….expertly cut by our founder member and Heather Smith; thank you so much Diane.

The weekend was well attended with almost 100 members, despite a few cancellations.  The new arrangement for looking after members’ children was a huge success and our sincere thanks to Phil and Tracy for giving up their whole weekend to do this for us.  The kids had a fun weekend with maybe just a few too many e-numbers (I was personally responsible for that!) but they really enjoyed themselves under expert supervision, thus enabling their parents to relax and enjoy the weekend….a service we hope to be able to offer at future weekends.

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Spring Weekend Nottingham 1- 3 May 2015

The Annual Meeting and Support & Respite weekend were a tremendous success on 1-3 May in Nottingham.  Attendance was extremely high at close to 90 and some serious ‘mutual supporting’ took place. The speakers were excellent and quite by accident, the theme for most of the day was activity based and as Tim Warner’s talk clearly demonstrated, disability is not and should not be allowed to be a bar to actively participating in life.  Okay, so we may not all be capable of, or even want to be as daring or brave as Tim but the message was that there is definitely something for everyone out there, if we are prepared to embrace it.

Stuart and Marie Nixon, assisted by Sue Alison, gave a refreshingly brave and honest talk about how MS affects their marriage and relationship, a topic that generated much discussion both during and following their talk…..members later told us in the Annual meeting that they would prefer to have more interactive talks and workshops like this rather than straight forward talks, so that is something your Committee will address.

Charlie Rawlings, a neuro physio trainer who specialises in helping with spasms also had us on our feet doing a bit of exercise while he also gave lots of nutritional tips to help alleviate symptoms.

Dr Sarah Thomas reported on a study, Mii-vitaliSe, which tests the feasibility and acceptability of using the Nintendo Wii in the home to increase activity levels, vitality and well-being in people with multiple sclerosis. People with MS typically engage in dramatically lower levels of physical activity than the general population which can lead to a downward spiral of deconditioning, fatigue, reduced self-efficacy, increased levels of disability as well as increased health risks (such as cardiovascular diseases, obesity, diabetes, etc). Psychosocial repercussions include reduced leisure, social contacts and role.  Will we see the NHS dishing out Wii consoles on diagnosis? Only time will tell!

On Saturday we also had a demonstration of a self-propelled Mountain Trike from Roger Crawford with an opportunity for those interested to have a go.  Members had fun trying out the Trikes, some were a little over-excited and managed to crash said trike into a waste paper bin!  No names no pack-drill… but there is an interesting clip on our Facebook page of Craig Winskill-Hales doing something amusing!

There was also a workshop for carers that was very well attended – perhaps too well so a little crowded and that led to suggestions for changing and improving this session, all of which will be looked at by your new Committee, along with Sue Alison who hosts these sessions, before the next meeting.

On Saturday night we held a dinner evening, much like a ladies guest night but less formal.  The food was fabulous, the company even better and we were delighted to host most of our guest speakers who were able to experience a little bit of military tradition.  In addition, we were joined by Vineeta Kochhar, the outgoing Chair of Asian MS and Saher Usmani, our much missed Support Groups Officer.  Much to her surprise, the main focus of the after dinner speech was to wave goodbye to Saher.  Saher has been an invaluable conduit to the MS Society for us and for Asian MS and her loss will be felt deeply by all of us.  Saher was presented with a small gift by way of thanks and was very touched by the gesture.  That was meant to be that by way of gestures of appreciation, but one of our Support Team Members saw fit to embarrass me by submitting my name for a Shining Star award from the MS Society, his application was successful for some reason; I was very touched by this gesture, thank you Peter, I will wear the award with pride.

The next morning (the very same morning for some late revellers!) came our Annual Meeting (AM), which went very smoothly with almost the whole Committee re-standing for another year of fun!  Thank you to our President Mike Barter, for ensuring proceedings went smoothly & also for agreeing to stay on as President.

We were sorry to lose Mike Robbins who has been involved with the Committee for many a year but has stepped down now in his official capacity as Speakers Organiser.  Mike wasn’t able to stay for the AM but a vote of thanks was recorded for all his hard work over the years.  If anyone feels they could fill Mike’s shoes, for what is a pleasant and not at all onerous task, please do let me know.  Towards the end of the AM I was delighted to present Peter McKernan with a trophy for his outstanding performance as a Support Team Contact over the past 12 months – a well-deserved award that was completely coincidental to him plotting a Shining Star for me but boy, revenge really is sweet!

We had two members come forward to volunteer to give Benefits advice to members and as soon as they have successfully completed training, we will put them to work….thank you Penny and Nikki.

Finally, we ended the weekend with an open forum where I am pleased to say members made some excellent suggestions for how they would like to see the weekends organised in the future, all things the Committee will be happy to address – after all, we run this for you not for ourselves, so it really does help when you tell us what you want.

A tremendously successful weekend all round for which I would like to thank Martin and Zena for organising and all those who helped– it is not an easy task pulling a big conference like this together but they did a splendid job – thank you & well done.  A big thank you as well to Jenny & her sister Jackie for all the therapies over the weekend; they relieved so many aching muscles they ended up with aching hands!

The next weekend will be back in Sunningdale on 23 to 25 October – put it firmly in your diaries now…booking forms will be available in due course, just let us catch our breath a while!

Suzanne – Chairman

Suzanne
Chairman


Autumn Weekend 2014

'Formal Dinner' After the very successful spring Support weekend at Nottingham, we had a lot to live up to but we like a challenge and our new Events organisers Zena & Martin certainly took on the challenge & produced a fantastic event.

Once again Sunningdale proved to be an excellent venue with some new staff who made us incredibly welcome and the food was, as always, varied and excellent.

Zena, Martin and I arrived on the Thursday to make all the final arrangements and check the hotel was ready for the onslaught the next day! Indeed they were and members started arriving the next day in dribs and drabs and then in droves – almost 90 of you in total.

On the Friday evening, after a welcome drink and an excellent evening meal, we all gathered for a welcome brief some essential health and safety blurb.  We then launched straight in to another of Bill Lands excellent quizzes. Unfortunately, Bill wasn’t actually there to deliver the quiz but Martin stepped in & proved to be a surprisingly strict quiz master – there was NO negotiation on the answers Bill had given him!  The hotel was kind enough to allow us to run our own bar again, so following a massive supermarket trolley dash the day before, we had a well stocked and very cheap bar – thanks Sunningdale – 50p to £2.50 for a drink is very welcome to us all and an extremely kind gesture from the hotel.

On Saturday the programme of speakers was as follows:

Andy Cook – Canine Partners

Lynn Shortt – ESA/PIP 

Linda Elsegood – LDN

 Chris Rigozzi – Gastro intestinal issues

They were all extremely interesting speakers and our thanks go to them all for giving up their weekend to come and talk to us. Sadly, Canine partners did not bring any dogs as had been expected but the video still got lots of oohs and aahs! Anyone who hasn’t considered an assistance dog really should give it some thought, the dogs are truly amazing and change peoples lives completely – not just physically but also mentally.

Lynn’s talk on ESA/PIP was, I am told  also excellent and pitched just at the right level and Lynn has offered to come and talk at future events.  I missed this talk as I was helping with the children’s session but more of that in a minute.

Linda covered LDN an unlicensed drug that many find helpful with MS, visit the MS Society and the ldn trust website for more information.

Finally Chris’s talk on gastro intestinal issues was frank, amusing and full of useful information and tips on how to cope with bowel issues so common in MS.

Children’s session

This weekend we had no fewer than 10 children attending and so we arranged another session for them to discuss any fears, worries or questions they had about MS.  The session was extremely successful and something we want to continue to develop, my personal thanks to Sue Alison from the MS Society and our Support Group Officer, Saher for running this session & for roping me in at the eleventh hour! Actually I enjoyed spending some time with all the children, they were beautifully behaved and a credit to all their parents.  Should we have similar numbers (or more) at the next weekend, we will offer more entertainment for the children if we can.

Carers

We also held our usual carers session which was extremely well attended and once again run by Sue Alison from the MS Society.

Sat Eve

On Sat eve Martin and Zena organised a horse racing evening – the going was good and a fun evening was had by all – thanks Zena & Martin.  We then held one of our famous raffles ably assisted by the children who did a cracking job picking and calling the winning tickets.  We also had an extremely generous gift made by Cav Naylor donated to us to raffle off.  The lucky top bidder was Mike Murray whose wife Shelley was somewhat surprised by Mike’s generous outburst!  All in all, over the course of the weekend we raised some £2444.50 in takings and donations – not bad at all – thank you all for your generosity.

Sunday 12th October talks

Dave Luscombe – Personnel Recovery Centres & war pension welfare service

Dr Sarah Thomas-Fatigue

Both of Sundays talks were as excellent as Saturdsay’s and both speakers have also agreed to return to other weekends to talk again.

An absolutely excellent weekend, thank you to all those who contributed by helping sell tickets, donate goods and gifts, spending your money and just being there.  Thanks once again to our amazing carers Sue, Nicola &  Zena and last but not least to Martin & Zena for organising the whole event – it was a triumph!

* Put the dates for the next weekend in your diary now – 1 to 3rd May 2015 at the EMCC in Nottingham

———————————————————————————-

Support & Respite Weekend

2-4 May 2014, East Midlands Conference Centre (EMCC)

Great company & great weekend attended by some 90 members!

The new venue was a tremendous success with everyone complimenting the rooms, staff and location. Some felt the food wasn’t quite up to the high standard at Sunningdale & we will pass your comments on to the hotel. One member thought the enormous beds so comfortable she asked for the details so she could source one!

Sadly, Bill Land wasn’t able to attend due to illness but Martin stepped in to run the Friday quiz for him & I am told it was an excellent, if challenging quiz, so thank you Bill. I didn’t make it Friday either under the pretence of illness, when actually being aware it was a new venue, & likely fraught with problems that needed solving on the Friday, I thought I’d let the rest of the Committee iron out all the issues before I arrived! In actual fact, it ran like a dream thanks to Geoff’s outstanding organisation & lots of help from Committee & Support Team members & our Support Group Officer Saher…. well done & thank you to all of you.

Feeling more than a little guilty (& a lot better!) I arrived late Friday night & tucked myself up in the outstandingly comfy beds ready for an early start Saturday.

On Saturday we kicked off with a session called ‘Living together with MS’. Very unfortunately, the intended speaker for this session wasn’t able to attend under Drs orders, so in stepped Sue Alison & Nicola Daykin who both did a sterling job picking up the reigns on a brave session that I think we will more than likely repeat & develop. Sue & Nicola were kept very busy on Saturday as they also ran a session for children and the usual carers session. The first ever children’s session was a tremendous success, we thought it might last half an hour but the children were so engaged it lasted 90 mins! They were able to ask & explore questions and feelings related to having a parent affected by MS – a session we would very much like to repeat & encourage other children to attend at future events.

The above session was followed by Dr Tatianai Mihalova from Nottingham University hospital, Dr Mihalova (a neurologist) covered all the currently available treatments, their suitability & side effects -a very interesting talk indeed. The afternoon started with a fatigue talk from Nikki-Ward-Abel, a talk that was as interesting as her last talk on sex – and that takes some doing! The last talk of the day was from Simon Barnett, who focussed on the power of the mind and whilst Nikki had very successfully kept us all awake, Simon put us all to sleep – some of us more deeply than others – you know who you are!

In the evening we held another of our very popular ‘formal’ dinners which was in actual fact a very relaxed & pleasant affair & I think we had more people in uniform this time than ever before! After dinner we had a fundraising raffle and I think you can see from the pics that some tables were luckier than others!

On Sunday, we brushed off the cobwebs and gathered for the Annual Meeting, where the outgoing Committee was immediately voted back in again for another year with the exception of Geoff Dodds and John Marriott, who will both be sorely missed. We did however welcome Zena & Martin to the team as the new Events team – thanks for stepping up guys & welcome. After the meeting a few very important presentations were made to the following people:

Geoff Dodds – For his outstanding contribution as a brilliant Events Organiser

Simeon Grundy – For being just the best volunteer for Mutual Support in 2014 (well, for a lot longer then that really!)

Alastair King – For being a superb STC!

Post meeting I was also approached by Nikki Young who very kindly offered her services as the next Benefits Advisor. Nikki has a great deal of training & experience in this area & I look forward to training her up & getting her on board as soon as I can.

Thank you to everyone who attended and everyone who helped make this weekend such a success – can’t wait for the next one.

Comments from the weekend

“Hello. My name is Tom, I’m seven years old, and my daddy has MS. My two big brothers and I went to the Mutual Support Respite Weekend in Nottingham with our mum and dad and had an awesome time.

We arrived on Friday night and met lots of new people. We had pork for supper, which was yummy. We had two rooms connected together and two TVs! My brother AJ had a camp bed so I had to share a big bed with my smelly brother Charlie.

On Saturday our breakfast was amazingly yummy and we all ate lots. All the grownups went into a big meeting room and my brothers and I went into a small room with some ladies who asked us if we had any questions about MS. I asked about three questions and we all talked for a long time. It was nice to chat and we got some books to take home. On Saturday night the grownups dressed up and had a nice dinner. We helped with the raffle by pulling tickets out of the bucket. It was great fun!

The whole weekend was brilliant and everyone was very friendly. Charlie’s favourite part was eating salmon for lunch and AJ loved eating tea in our room. My best bit was doing rolly pollies down the hill in the garden! Mummy and daddy really enjoyed chatting to everyone and listening to the speakers and mummy REALLY loved not having to cook or wash up for two whole days! On Sunday none of us wanted to go home. Hopefully we will go to the next weekend in November. It would be nice if some other children came”

“Had a fantastic weekend with the most amazing group of people. Most of us only see each other once or twice a year, but when we catch up we make up for it. Missing many of you already”

“It was a great weekend. Thank you mutual support. Look forward to the next one “

“Again, a great weekend in Nottingham. The fun, camaraderie, banter and support from everyone, is always so therapeutic. The work involved, in getting it all ‘together’, must be enormous. It really is very much appreciated. Please extend a very big ‘thank you’, to all involved. We are all so fortunate in having such a devoted committee. Many thanks again, and we look forward to seeing everyone again in October”.

“Thanks to everyone for an absolutely fantastic week-end again”

“Thank you for a great respite weekend it was very informative and good to met new friends and see people I had met before thanks again”

“What a fabulous weekend in Nottingham. These guys sure know how to put on a show. Thank you to everyone that organised the weekend, the speakers and the attendees. You are all fabulous “

“Had a gr*8 weekend thanks 2 everyone xxx “

“Thank you for a wonderful weekend in Nottingham .It was lovely to catch up with everybody, looking forward to October”

“Huge thanks to all on the committee for another brilliant weekend. Loved the new venue for the comfort of the rooms and facilities and of course the much shorter journey to get there! Hope to see you all again in October”

Photos to follow when the system is working again – for today I have given up trying!

Support & Respite Weekend

10-12 October 2014, De Vere Sunningdale Park Hotel, Ascot

'Formal Dinner' After the very successful spring Support weekend at Nottingham, we had a lot to live up to but we like a challenge and our new Events organisers Zena & Martin certainly took on the challenge & produced a fantastic event.

Once again Sunningdale proved to be an excellent venue with some new staff who made us incredibly welcome and the food was, as always, varied and excellent.

Zena, Martin and I arrived on the Thursday to make all the final arrangements and check the hotel was ready for the onslaught the next day! Indeed they were and members started arriving the next day in dribs and drabs and then in droves – almost 90 of you in total.

On the Friday evening, after a welcome drink and an excellent evening meal, we all gathered for a welcome brief some essential health and safety blurb.  We then launched straight in to another of Bill Lands excellent quizzes. Unfortunately, Bill wasn’t actually there to deliver the quiz but Martin stepped in & proved to be a surprisingly strict quiz master – there was NO negotiation on the answers Bill had given him!  The hotel was kind enough to allow us to run our own bar again, so following a massive supermarket trolley dash the day before, we had a well stocked and very cheap bar – thanks Sunningdale – 50p to £2.50 for a drink is very welcome to us all and an extremely kind gesture from the hotel.

On Saturday the programme of speakers was as follows:

Andy Cook – Canine Partners

Lynn Shortt – ESA/PIP 

Linda Elsegood – LDN

 Chris Rigozzi – Gastro intestinal issues

They were all extremely interesting speakers and our thanks go to them all for giving up their weekend to come and talk to us. Sadly, Canine partners did not bring any dogs as had been expected but the video still got lots of oohs and aahs! Anyone who hasn’t considered an assistance dog really should give it some thought, the dogs are truly amazing and change peoples lives completely – not just physically but also mentally.

Lynn’s talk on ESA/PIP was, I am told  also excellent and pitched just at the right level and Lynn has offered to come and talk at future events.  I missed this talk as I was helping with the children’s session but more of that in a minute.

Linda covered LDN an unlicensed drug that many find helpful with MS, visit the MS Society and the ldn trust website for more information.

Finally Chris’s talk on gastro intestinal issues was frank, amusing and full of useful information and tips on how to cope with bowel issues so common in MS.

Children’s session

This weekend we had no fewer than 10 children attending and so we arranged another session for them to discuss any fears, worries or questions they had about MS.  The session was extremely successful and something we want to continue to develop, my personal thanks to Sue Alison from the MS Society and our Support Group Officer, Saher for running this session & for roping me in at the eleventh hour! Actually I enjoyed spending some time with all the children, they were beautifully behaved and a credit to all their parents.  Should we have similar numbers (or more) at the next weekend, we will offer more entertainment for the children if we can.

Carers

We also held our usual carers session which was extremely well attended and once again run by Sue Alison from the MS Society.

Sat Eve

On Sat eve Martin and Zena organised a horse racing evening – the going was good and a fun evening was had by all – thanks Zena & Martin.  We then held one of our famous raffles ably assisted by the children who did a cracking job picking and calling the winning tickets.  We also had an extremely generous gift made by Cav Naylor donated to us to raffle off.  The lucky top bidder was Mike Murray whose wife Shelley was somewhat surprised by Mike’s generous outburst!  All in all, over the course of the weekend we raised some £2444.50 in takings and donations – not bad at all – thank you all for your generosity.

Sunday 12th October talks

Dave Luscombe – Personnel Recovery Centres & war pension welfare service

Dr Sarah Thomas-Fatigue

Both of Sundays talks were as excellent as Saturdsay’s and both speakers have also agreed to return to other weekends to talk again.

An absolutely excellent weekend, thank you to all those who contributed by helping sell tickets, donate goods and gifts, spending your money and just being there.  Thanks once again to our amazing carers Sue, Nicola &  Zena and last but not least to Martin & Zena for organising the whole event – it was a triumph!

* Put the dates for the next weekend in your diary now – 1 to 3rd May 2015 at the EMCC in Nottingham

———————————————————————————-

Support & Respite Weekend

2-4 May 2014, East Midlands Conference Centre (EMCC)

Great company & great weekend attended by some 90 members!

The new venue was a tremendous success with everyone complimenting the rooms, staff and location. Some felt the food wasn’t quite up to the high standard at Sunningdale & we will pass your comments on to the hotel. One member thought the enormous beds so comfortable she asked for the details so she could source one!

Sadly, Bill Land wasn’t able to attend due to illness but Martin stepped in to run the Friday quiz for him & I am told it was an excellent, if challenging quiz, so thank you Bill. I didn’t make it Friday either under the pretence of illness, when actually being aware it was a new venue, & likely fraught with problems that needed solving on the Friday, I thought I’d let the rest of the Committee iron out all the issues before I arrived! In actual fact, it ran like a dream thanks to Geoff’s outstanding organisation & lots of help from Committee & Support Team members & our Support Group Officer Saher…. well done & thank you to all of you.

Feeling more than a little guilty (& a lot better!) I arrived late Friday night & tucked myself up in the outstandingly comfy beds ready for an early start Saturday.

On Saturday we kicked off with a session called ‘Living together with MS’. Very unfortunately, the intended speaker for this session wasn’t able to attend under Drs orders, so in stepped Sue Alison & Nicola Daykin who both did a sterling job picking up the reigns on a brave session that I think we will more than likely repeat & develop. Sue & Nicola were kept very busy on Saturday as they also ran a session for children and the usual carers session. The first ever children’s session was a tremendous success, we thought it might last half an hour but the children were so engaged it lasted 90 mins! They were able to ask & explore questions and feelings related to having a parent affected by MS – a session we would very much like to repeat & encourage other children to attend at future events.

The above session was followed by Dr Tatianai Mihalova from Nottingham University hospital, Dr Mihalova (a neurologist) covered all the currently available treatments, their suitability & side effects -a very interesting talk indeed. The afternoon started with a fatigue talk from Nikki-Ward-Abel, a talk that was as interesting as her last talk on sex – and that takes some doing! The last talk of the day was from Simon Barnett, who focussed on the power of the mind and whilst Nikki had very successfully kept us all awake, Simon put us all to sleep – some of us more deeply than others – you know who you are!

In the evening we held another of our very popular ‘formal’ dinners which was in actual fact a very relaxed & pleasant affair & I think we had more people in uniform this time than ever before! After dinner we had a fundraising raffle and I think you can see from the pics that some tables were luckier than others!

On Sunday, we brushed off the cobwebs and gathered for the Annual Meeting, where the outgoing Committee was immediately voted back in again for another year with the exception of Geoff Dodds and John Marriott, who will both be sorely missed. We did however welcome Zena & Martin to the team as the new Events team – thanks for stepping up guys & welcome. After the meeting a few very important presentations were made to the following people:

Geoff Dodds – For his outstanding contribution as a brilliant Events Organiser

Simeon Grundy – For being just the best volunteer for Mutual Support in 2014 (well, for a lot longer then that really!)

Alastair King – For being a superb STC!

Post meeting I was also approached by Nikki Young who very kindly offered her services as the next Benefits Advisor. Nikki has a great deal of training & experience in this area & I look forward to training her up & getting her on board as soon as I can.

Thank you to everyone who attended and everyone who helped make this weekend such a success – can’t wait for the next one.

Comments from the weekend

“Hello. My name is Tom, I’m seven years old, and my daddy has MS. My two big brothers and I went to the Mutual Support Respite Weekend in Nottingham with our mum and dad and had an awesome time.

We arrived on Friday night and met lots of new people. We had pork for supper, which was yummy. We had two rooms connected together and two TVs! My brother AJ had a camp bed so I had to share a big bed with my smelly brother Charlie.

On Saturday our breakfast was amazingly yummy and we all ate lots. All the grownups went into a big meeting room and my brothers and I went into a small room with some ladies who asked us if we had any questions about MS. I asked about three questions and we all talked for a long time. It was nice to chat and we got some books to take home. On Saturday night the grownups dressed up and had a nice dinner. We helped with the raffle by pulling tickets out of the bucket. It was great fun!

The whole weekend was brilliant and everyone was very friendly. Charlie’s favourite part was eating salmon for lunch and AJ loved eating tea in our room. My best bit was doing rolly pollies down the hill in the garden! Mummy and daddy really enjoyed chatting to everyone and listening to the speakers and mummy REALLY loved not having to cook or wash up for two whole days! On Sunday none of us wanted to go home. Hopefully we will go to the next weekend in November. It would be nice if some other children came”

“Had a fantastic weekend with the most amazing group of people. Most of us only see each other once or twice a year, but when we catch up we make up for it. Missing many of you already”

“It was a great weekend. Thank you mutual support. Look forward to the next one “

“Again, a great weekend in Nottingham. The fun, camaraderie, banter and support from everyone, is always so therapeutic. The work involved, in getting it all ‘together’, must be enormous. It really is very much appreciated. Please extend a very big ‘thank you’, to all involved. We are all so fortunate in having such a devoted committee. Many thanks again, and we look forward to seeing everyone again in October”.

“Thanks to everyone for an absolutely fantastic week-end again”

“Thank you for a great respite weekend it was very informative and good to met new friends and see people I had met before thanks again”

“What a fabulous weekend in Nottingham. These guys sure know how to put on a show. Thank you to everyone that organised the weekend, the speakers and the attendees. You are all fabulous “

“Had a gr*8 weekend thanks 2 everyone xxx “

“Thank you for a wonderful weekend in Nottingham .It was lovely to catch up with everybody, looking forward to October”

“Huge thanks to all on the committee for another brilliant weekend. Loved the new venue for the comfort of the rooms and facilities and of course the much shorter journey to get there! Hope to see you all again in October”

Photos to follow when the system is working again – for today I have given up trying!

Support & Respite Weekend

10-12 October 2014, De Vere Sunningdale Park Hotel, Ascot

'Formal Dinner' After the very successful spring Support weekend at Nottingham, we had a lot to live up to but we like a challenge and our new Events organisers Zena & Martin certainly took on the challenge & produced a fantastic event.

Once again Sunningdale proved to be an excellent venue with some new staff who made us incredibly welcome and the food was, as always, varied and excellent.

Zena, Martin and I arrived on the Thursday to make all the final arrangements and check the hotel was ready for the onslaught the next day! Indeed they were and members started arriving the next day in dribs and drabs and then in droves – almost 90 of you in total.

On the Friday evening, after a welcome drink and an excellent evening meal, we all gathered for a welcome brief some essential health and safety blurb.  We then launched straight in to another of Bill Lands excellent quizzes. Unfortunately, Bill wasn’t actually there to deliver the quiz but Martin stepped in & proved to be a surprisingly strict quiz master – there was NO negotiation on the answers Bill had given him!  The hotel was kind enough to allow us to run our own bar again, so following a massive supermarket trolley dash the day before, we had a well stocked and very cheap bar – thanks Sunningdale – 50p to £2.50 for a drink is very welcome to us all and an extremely kind gesture from the hotel.

On Saturday the programme of speakers was as follows:

Andy Cook – Canine Partners

Lynn Shortt – ESA/PIP 

Linda Elsegood – LDN

 Chris Rigozzi – Gastro intestinal issues

They were all extremely interesting speakers and our thanks go to them all for giving up their weekend to come and talk to us. Sadly, Canine partners did not bring any dogs as had been expected but the video still got lots of oohs and aahs! Anyone who hasn’t considered an assistance dog really should give it some thought, the dogs are truly amazing and change peoples lives completely – not just physically but also mentally.

Lynn’s talk on ESA/PIP was, I am told  also excellent and pitched just at the right level and Lynn has offered to come and talk at future events.  I missed this talk as I was helping with the children’s session but more of that in a minute.

Linda covered LDN an unlicensed drug that many find helpful with MS, visit the MS Society and the ldn trust website for more information.

Finally Chris’s talk on gastro intestinal issues was frank, amusing and full of useful information and tips on how to cope with bowel issues so common in MS.

Children’s session

This weekend we had no fewer than 10 children attending and so we arranged another session for them to discuss any fears, worries or questions they had about MS.  The session was extremely successful and something we want to continue to develop, my personal thanks to Sue Alison from the MS Society and our Support Group Officer, Saher for running this session & for roping me in at the eleventh hour! Actually I enjoyed spending some time with all the children, they were beautifully behaved and a credit to all their parents.  Should we have similar numbers (or more) at the next weekend, we will offer more entertainment for the children if we can.

Carers

We also held our usual carers session which was extremely well attended and once again run by Sue Alison from the MS Society.

Sat Eve

On Sat eve Martin and Zena organised a horse racing evening – the going was good and a fun evening was had by all – thanks Zena & Martin.  We then held one of our famous raffles ably assisted by the children who did a cracking job picking and calling the winning tickets.  We also had an extremely generous gift made by Cav Naylor donated to us to raffle off.  The lucky top bidder was Mike Murray whose wife Shelley was somewhat surprised by Mike’s generous outburst!  All in all, over the course of the weekend we raised some £2444.50 in takings and donations – not bad at all – thank you all for your generosity.

Sunday 12th October talks

Dave Luscombe – Personnel Recovery Centres & war pension welfare service

Dr Sarah Thomas-Fatigue

Both of Sundays talks were as excellent as Saturdsay’s and both speakers have also agreed to return to other weekends to talk again.

An absolutely excellent weekend, thank you to all those who contributed by helping sell tickets, donate goods and gifts, spending your money and just being there.  Thanks once again to our amazing carers Sue, Nicola &  Zena and last but not least to Martin & Zena for organising the whole event – it was a triumph!

* Put the dates for the next weekend in your diary now – 1 to 3rd May 2015 at the EMCC in Nottingham

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Support & Respite Weekend

2-4 May 2014, East Midlands Conference Centre (EMCC)

Great company & great weekend attended by some 90 members!

The new venue was a tremendous success with everyone complimenting the rooms, staff and location. Some felt the food wasn’t quite up to the high standard at Sunningdale & we will pass your comments on to the hotel. One member thought the enormous beds so comfortable she asked for the details so she could source one!

Sadly, Bill Land wasn’t able to attend due to illness but Martin stepped in to run the Friday quiz for him & I am told it was an excellent, if challenging quiz, so thank you Bill. I didn’t make it Friday either under the pretence of illness, when actually being aware it was a new venue, & likely fraught with problems that needed solving on the Friday, I thought I’d let the rest of the Committee iron out all the issues before I arrived! In actual fact, it ran like a dream thanks to Geoff’s outstanding organisation & lots of help from Committee & Support Team members & our Support Group Officer Saher…. well done & thank you to all of you.

Feeling more than a little guilty (& a lot better!) I arrived late Friday night & tucked myself up in the outstandingly comfy beds ready for an early start Saturday.

On Saturday we kicked off with a session called ‘Living together with MS’. Very unfortunately, the intended speaker for this session wasn’t able to attend under Drs orders, so in stepped Sue Alison & Nicola Daykin who both did a sterling job picking up the reigns on a brave session that I think we will more than likely repeat & develop. Sue & Nicola were kept very busy on Saturday as they also ran a session for children and the usual carers session. The first ever children’s session was a tremendous success, we thought it might last half an hour but the children were so engaged it lasted 90 mins! They were able to ask & explore questions and feelings related to having a parent affected by MS – a session we would very much like to repeat & encourage other children to attend at future events.

The above session was followed by Dr Tatianai Mihalova from Nottingham University hospital, Dr Mihalova (a neurologist) covered all the currently available treatments, their suitability & side effects -a very interesting talk indeed. The afternoon started with a fatigue talk from Nikki-Ward-Abel, a talk that was as interesting as her last talk on sex – and that takes some doing! The last talk of the day was from Simon Barnett, who focussed on the power of the mind and whilst Nikki had very successfully kept us all awake, Simon put us all to sleep – some of us more deeply than others – you know who you are!

In the evening we held another of our very popular ‘formal’ dinners which was in actual fact a very relaxed & pleasant affair & I think we had more people in uniform this time than ever before! After dinner we had a fundraising raffle and I think you can see from the pics that some tables were luckier than others!

On Sunday, we brushed off the cobwebs and gathered for the Annual Meeting, where the outgoing Committee was immediately voted back in again for another year with the exception of Geoff Dodds and John Marriott, who will both be sorely missed. We did however welcome Zena & Martin to the team as the new Events team – thanks for stepping up guys & welcome. After the meeting a few very important presentations were made to the following people:

Geoff Dodds – For his outstanding contribution as a brilliant Events Organiser

Simeon Grundy – For being just the best volunteer for Mutual Support in 2014 (well, for a lot longer then that really!)

Alastair King – For being a superb STC!

Post meeting I was also approached by Nikki Young who very kindly offered her services as the next Benefits Advisor. Nikki has a great deal of training & experience in this area & I look forward to training her up & getting her on board as soon as I can.

Thank you to everyone who attended and everyone who helped make this weekend such a success – can’t wait for the next one.

Comments from the weekend

“Hello. My name is Tom, I’m seven years old, and my daddy has MS. My two big brothers and I went to the Mutual Support Respite Weekend in Nottingham with our mum and dad and had an awesome time.

We arrived on Friday night and met lots of new people. We had pork for supper, which was yummy. We had two rooms connected together and two TVs! My brother AJ had a camp bed so I had to share a big bed with my smelly brother Charlie.

On Saturday our breakfast was amazingly yummy and we all ate lots. All the grownups went into a big meeting room and my brothers and I went into a small room with some ladies who asked us if we had any questions about MS. I asked about three questions and we all talked for a long time. It was nice to chat and we got some books to take home. On Saturday night the grownups dressed up and had a nice dinner. We helped with the raffle by pulling tickets out of the bucket. It was great fun!

The whole weekend was brilliant and everyone was very friendly. Charlie’s favourite part was eating salmon for lunch and AJ loved eating tea in our room. My best bit was doing rolly pollies down the hill in the garden! Mummy and daddy really enjoyed chatting to everyone and listening to the speakers and mummy REALLY loved not having to cook or wash up for two whole days! On Sunday none of us wanted to go home. Hopefully we will go to the next weekend in November. It would be nice if some other children came”

“Had a fantastic weekend with the most amazing group of people. Most of us only see each other once or twice a year, but when we catch up we make up for it. Missing many of you already”

“It was a great weekend. Thank you mutual support. Look forward to the next one “

“Again, a great weekend in Nottingham. The fun, camaraderie, banter and support from everyone, is always so therapeutic. The work involved, in getting it all ‘together’, must be enormous. It really is very much appreciated. Please extend a very big ‘thank you’, to all involved. We are all so fortunate in having such a devoted committee. Many thanks again, and we look forward to seeing everyone again in October”.

“Thanks to everyone for an absolutely fantastic week-end again”

“Thank you for a great respite weekend it was very informative and good to met new friends and see people I had met before thanks again”

“What a fabulous weekend in Nottingham. These guys sure know how to put on a show. Thank you to everyone that organised the weekend, the speakers and the attendees. You are all fabulous “

“Had a gr*8 weekend thanks 2 everyone xxx “

“Thank you for a wonderful weekend in Nottingham .It was lovely to catch up with everybody, looking forward to October”

“Huge thanks to all on the committee for another brilliant weekend. Loved the new venue for the comfort of the rooms and facilities and of course the much shorter journey to get there! Hope to see you all again in October”

Photos to follow when the system is working again – for today I have given up trying!

Previous Events

Support & Respite Weekend

11-13 October 2013, Sunningdale Park Hotel

We have just held another Support & Respite weekend and what a weekend it was! Attendance was high, with 95 attendees of whom 14 were first timers.

We started the weekend on Friday evening with some great food and welcome drinks followed by a challenging quiz, written by Bill Land and expertly delivered by Mike Robbins, as Bill was unable to join us.

In the morning the day began with an update from Dr Susan Kohlhaas from the MS Society (MSS) Research Team who concentrated her talk on progressive MS. Dr Susan was followed by our very own Geoff Dodds, who explained what services Royal British Legion Industries offer to military personnel & their families, whether serving or retired and with a particular focus on the LifeWorks course. During the morning, a separate session was held for carers, led by Sue Allison, the strategic lead for carers at the MSS. Whilst I did not attend this session, I am told it was a tremendous success, but not long enough!

After lunch we were treated to a talk on sex & MS by Nikki Ward-Abel, Nikki has talked to the Group previously and, as always, her presentation hit the spot! She made a difficult and sometimes embarrassing topic light- hearted and at times, hilarious. Nikki was followed by Zena Betts, ably assisted by Sue & Nicola Schofield, demonstrating various moving and handling aids and explaining the importance of safe handling.

Saturday night was a fun packed evening with entertainment very generously provided by Pecadillo Circus, a fabulous and very funny Barber Shop Quartet who took us down memory lane with their own versions of some great golden oldies, like Sweet Sixteen. During the evening we also held one of our famous raffles, raising over £400. After the raffle we auctioned some donated goods from Hilary Winstanley (quilted throw), John & Tricia Hamilton (tea for two at a local hotel), Cav Naylor (model tank) & Mike Murray (golf clubs). Thanks to their generosity for donating the gifts and to the members for stretching their pockets and bidding for them, we raised £490!

On Sunday, we all brushed off the cobwebs and were treated to an extremely informative presentation from our very own Benefits Advisor, John Marriott, who delivered the latest information on PIP and ESA. Members had so many questions we extended the time allotted – running over by nearly an hour! Sadly, John also announced that due to worsening health, he would be standing down as Benefits Advisor at Christmas. This is very sad news, but completely understandable and our most sincere thanks go to John for the time he has dedicated to Mutual Support, gaining members literally thousands of pounds in benefits – John will be very sorely missed and our very best wishes go to both him and Iris.

We have already had some incredible feedback from members who attended the weekend, which proves to us how important these occasions are. It is an opportunity to test the name of the Group and our raison d’etre, enabling members to share information and experiences, offer support to the newly diagnosed, those being medically discharged or those in need of general support from people with experience of living with MS in a military environment or making what can be a difficult transition to civilian life.

Of course none of this could have happened without the expert organisation of our Events Manager, Geoff Dodds; the weekend ran seamlessly and having organised previous events myself, I am well aware that to achieve this requires an enormous amount of admin and effort – thank you from all of us Geoff.

To those who missed this weekend, don’t miss the next one which is already booked for 2- 4 May at the East Midlands conference centre in Nottingham….accessible rooms are limited, so get your applications in ASAP – will be posted here soon!

Talks from the weekend available here

ESA Presentation

Applying for PIP

PIP Part 2

PIP Part 3

Suzanne

Chairman

Support & Respite Weekend

19 – 21 April 2013 – Fantastic time had by all

Record Attendance

The weekend was a great success with record attendance – I seem to have to say that after each event but it IS true. The weather was apparently amazing and some members even got in a bit of sunbathing, some of us never saw daylight for the whole weekend so couldn’t possibly comment!

The speakers were all informative and relevant, with BLESMA causing a few tears that made some members consider themselves lucky to have MS and not 3 missing limbs and genitalia! Bill Gillett explained how and why serving and retired members of the military with MS can be members of BLESMA if they have lost the use of one or more limbs and or eyesight – either permanently or occasionally – the activities they offer are varied from the sedate, to the positively insane – so adrenaline junkies take note!

Other speakers included a motivational hypnotherapist, Nicola Menage who had some of us snoring at the end of her presentation – Not because she was boring (far from it) but because she did an amazing relaxation session for us – I still feel sleepy now! We also heard the latest from Dr Susan Kohlhaas , MS Society, on new research, treatments and MSS news updates. Her talk was excellent and pitched at just the right level with not too much medical jargon and no false hopes being generated by promises of unrealistic cures and treatments – just plain honesty – we liked that! Roger Weddell, an Army Physiotherapist, talked to us about all things Physio related to helping manage MS, we think he was in cahoots with BLESMA who were encouraging us to do activities that might break limbs so Roger could then fix them!

We also held our usual Carers Session run by Sue Alison – Strategic lead for carers, MS Society – it was very well attended although as I have MS I didn’t attend but I understand the session went very well and members came away with lots of useful information.

Events Manager behind the bar!

On Saturday evening we all dressed up for the formal dinner – thanks to the serving members for providing some style, colour and military

pomp and ceremony to the evening and thanks also to our President who came in fancy dress and gave us all a bit of a laugh – long story … you had to be there! The evening started off with pre-dinner drinks and the Events Manager Geoff sprang into action behind the bar when it all got a bit busy! The amazing food, plenty of wine and wonderful company all combined to make the evening very special as we celebrated our own 22nd year and the 60th anniversary of the MS Society – with balloons, badges, pens and all manner of free publicity materials – thanks MSS!

On Sunday we fought off the cobwebs, took some paracetamol and held the Annual Meeting when the members were informed what the Committee had been up to during the year. The entire committee was then voted back in for another year in office to continue to do the amazing work that they do supporting you, the members. My thanks to our president for presiding over the important voting process.

Top Table

It was lovely to see our President Mike Barter and our Vice President Paul Cummings there for almost the whole weekend and to welcome back our Honorary Life President, Terry Sherrington for dinner on the Saturday evening. We always welcome and appreciate your company and input to the smooth running of the Group.

Well, if you weren’t there you missed a weekend packed with useful information, fantastic food and wonderful company proving once and for all that Mutual Support is an amazing charity comprising the most amazing, inspirational people who, despite this wretched disease, know how to smile (a lot) have fun and enjoy themselves!

Comments from members

“Would just like to thank everyone for the warm welcome received at the Respite weekend at Sunningdale, I found the weekend very beneficial, I learnt a lot more about my Husbands MS , it’s really opened my eyes to this awful disease, thanks for everything & I’m looking forward to the next in October!!”

“To finally meet people with this illness and to share your experiences and advice with us has been a very touching and humble experience. I only hope I can take all that I have learnt away to educate people within the Navy. Hopefully at the next weekend I can come back with positive feed back and have made more people aware of this fantastic charity. Thank you all once again for providing an amazing weekend, BZ’s all round to the committee!!! See you all in October”

Suzanne

Chairman

Support & Respite Weekend

5-7 October 2012

The Support and Respite weekend is now over and what a weekend it was. Attendance was high with 22 first time attendees – a record I am certain.

We had some excellent speakers including Sue Allison and Natalie Pink from the MS Society speaking about services available to carers and respite care breaks. Tammy Harrison, a clinical psychologist who gave a really interesting talk about emotions which engaged the members and left them wanting to hear more. Unfortunately, Helen Yates-Motion (CE of MS Resource Centre), one of our booked speakers, was taken ill on the Friday so Tammy stepped in and gave another impromptu talk. This meant members got to hear more after all and the carers who had missed her talk in the morning, got a taster of what they had missed.

Sue Allison also hosted a separate carers session in the morning, specifically for carers. The session was well attended and very productive – they came up with some proposals for something quite different for the next weekend which sounds very exciting – so watch this space. In the afternoon we had a talk from Tony Rogers from the Motability scheme, he explained how much the scheme has changed in recent years with real improvements being made for users. I am sure that they will be kept busy with new applicants in the next few days!

Saturday’s entertainment was courtesy of Spencer, Sally and Charlie Bull who hosted a Bingo night. Spencer was the ‘caller’ and dressed-up appropriately for his role (see right), Spencer did a great job, it was his first time ‘calling’ Bingo but I think he may have found his niche in life! We also had a raffle with lots of great prizes – thanks to Silke, Leah and Nicky who fleeced you all before you even got into the conference room! Stocking our own bar on Friday and Saturday night went down well, with drinks costing a maximum of £1.50 – our sincere thanks to the hotel for allowing us to do this again – it is very generous of them and makes a big difference to peoples pockets.

On Sunday morning we had a talk from our Benefits Advisor, John Marriott about the new PIP benefit and its potential impact on members. It was a complex and dry subject that John somehow managed to make light and interesting with plenty of humour thrown in. We all left much wiser and although it was clear this move is not a good one, at least we are all now better prepared for it.

We had a celebrity in our midst for the whole weekend in the name of Stephanie Millward, Paralympian and one of Mutual Supports honorary members. Stephanie won 4 silver medals and 1 bronze – Stephanie won the most medals out of the entire British Team – well done Stephanie. For me, Stephanie is one of our best prospects for 2016 as she has the potential to win 4 gold medals at Rio, she only missed out by tiny margin this time!

Overall, the weekend was a tremendous success and I would like to thank all who attended and all who helped make it such a great weekend – roll on April 19 – 21 2013!

One of our younger members!

Support & Respite Weekend

27-29 April 2012 – Sunningdale

The Spring Support & Respite weekend took place last weekend at the DeVere hotel in Sunningdale and was a tremendous success and thoroughly enjoyable weekend – the weather was absolutely lousy but we were all so busy enjoying ourselves we didn’t care! It was an absolute delight to see our Founder Member and Vice President Kim Bartlett there on the Saturday – welcome back Kim.

We welcomed 17 members who had never attended before and who all thoroughly enjoyed themselves and commented….

“Had a great time this weekend. Met some amazing people who truly are inspiring. Hope to see u all in oct. Thank u Mutual-Support.”

“Great weekend – so glad we got back in touch after many years absence”.

“Just had a brilliant couple of days at the respite weekend. Glad that I joined. Met good people, learnt a few things enjoyed good food and drink. Thanks to all concerned.”

“I feel I must write to thank you and all the members who worked so hard to make this respite weekend a real pleasure.
This was my first weekend with mutual-support and, I must say I was apprehensive, however from getting out of my car to leaving the Hotel, both my wife and I were made to feel so welcome, and given every possible support by people who were aware of my needs without being over bearing.
In conclusion, from informative lectures (given by top experts),in hypnosis, update on new research and medication, massage for pain relief, to a quiz night, and a formal meal to die for, it was great……
I was never one for looking back but this weekend has changed my mind. If you have not been involved with the support group, get in touch and I am sure you will find amazing people whose only aim is to genuinely help with any problems you may be having.”
Alan Bibby ex RAF

We had some very interesting speakers on the Saturday including:-

Simon Barnett – Speaking on clinical hynotherapy related to MS
Gary Johnston, Shaw Trust- Employment faculty for disabled people
Surgeon Commander Mathew Craner – Mechanisms of why people with MS progress and forthcoming therapies
Dr Doug Brown -Head of Biomedical ResearchMS Society -focus in on some exciting projects/initiatives

Thank you to all our Speakers who gave up their precious time to come and speak to us – you were all excellent.

On the Saturday we also held one of our tremendously popular Carers Sessions run by Sue Alison from the MS Society – thank you Sue for another inspiring session where carers were able to air their views, concerns and questions with other carers.

On Saturday evening we all enjoyed a semi-formal dinner with excellent food, company and wine. The staff were faultless and our sincere thanks to the DeVere hotel staff for putting on such an excellent evening for us. The evening was attended by our Honorary Life president Air Vice Marshal Terry Sherrington CB OBE and our Vice President Colonel Paul Cummings who gave a fitting after-dinner speech. It was wondcerful to see so many in uniform and to see everyone else looking so elegant.

On Sunday we held our Annual Meeting and the crucial voting in of the new Committee was hosted by our President Air Commodore Mike Barter CBE. Nobody stood down from the Committee and everyone was re-elected with the addition of 2 new members Phil Wilmot as Events Manager and Steve Poole as Publicity Manager – My sincere thanks to you all – without you Mutual Support could not function.

For those who have never attended we hope you can see from this small selection of photos what a great weekend it was – informative and fun, so if you have never been before please do try and come along to the next one in October 5-7th – we would love to see as many new members there as possible.

Thank you to Phil Wilmot who organised the weekend with a little help from Simeon Grundy as it was Phil’s first event – the first of many Phil!

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