Category Archives: Carer’s Corner

These pages are for carers, containing stories about problems, solutions and general support

South Coast Trip – Blog Day 6 Worthing

Awareness, Campaigns, Carer's Corner, Fun Event, Fund Raising, Volunteering

Our day started with breakfast together with an old work colleague of Lynn’s who quite by chance was staying in the same hotel.

We then walked across the road to the bus stop for Worthing, ?and after just a few minutes wait the bus arrived 25 minutes later we alighted right outside our venue for lunch.

With an hour to spare we explored Worthing pier and had coffee.

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The Beach House Caf? with West Sussex South

At midday we walked to Beach House Cafe where we enjoyed a delightful buffet lunch. We were joined by Councillor Val Turner, Pam Fry, Rae Martin-Smith and members of West Sussex South.

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Councillor Val Turner with Rae Martin Smith

As ever there were interesting coincidences. A recently diagnosed person living with MND turned out to be related to the landlady of The Wrotham Arms where our launch party was held a week ago.

We enjoyed supper in the sun at The Lobster Pot, where we found a table right by the beach, in the company of Kate Taylor and Sue Kruger of West Sussex South Branch.

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Kate Taylor, Lynn and Sue Kruger

Kate kindly hosted us for the night.

Thanks to everyone from West Sussex South for most delightful day.

South Coast trip – Blog Day 5 Brighton & Hove

Awareness, Carer's Corner, Fun Event, Fund Raising, General Support

The day started in misty sun in Eastbourne. We walked to M and S to find some fruit and lunch.

After sitting in the hazy sun on Sheik’s Pier we met up with Chris Wade, MNDA Director of Engagement?for the journey to Brighton.

As we approached Brighton the sky darkened and the rain started by the time we changed buses for Hove a thunderstorm was upon us.

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Big Beach Cafe

We reached our stop in Hove and fortunately the rain had eased for our walk to Big Beach Cafe where we met with MNDA East Sussex.

Lynn, Chris Wade, Daniel Yates, Liam Dwyer and Clive at Big Beach Cafe

We had an enjoyable time sadly the rain kept visitors away. Daniel Yates a Brighton Councillor came along and he clearly had a good grasp of MND needs, we hope he can persuade his colleagues to adopt our charter.? We were delighted to talk with Daniel and he?mentioned his surprise?at the reaction our activities were getting on social media.

Dan Stockland was a delightful host and we spent a happy hour afterwards with Liam Dwyer and his wife, the members of MNDA East Sussex ?and Pam Fry.

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Lynn with Peter Ratcliffe

During our visit we were approached by a man asking Lynn about her career. It turned out he was a colleague many years ago. Lynn was delighted to renew her friendship with Peter Ratcliffe and to meet his wife Janet. Amazingly it turned we were?staying in the same hotel nearby.

Peter has a beautiful dog who is a brood bitch for Hearing Dogs, service dogs for the hard of hearing. Peter was curious to know if service dogs could be of benefit to persons living with MND.? We did not know the answer and would be curious to know of any experience with service dogs for PwMND.

Pam dropped us to our hotel for a well earned rest.

 

South Coast Trip – Blog Day 3 Bexhill

Awareness, Campaigns, Carer's Corner, Fun Event, General Support, Volunteering

Short walk to our event this morning following a superb breakfast at Coast B and B.? This is a superb B and B, sadly not suitable for wheelchairs.
We were entertained by Doghouse, a really good rock and blues band, great music an very supportive of MND Association.
20160605_121320Bernard Duncan past chair of East Sussex MND Association spoke about MND and the aim of the South Coast Trip to raise awareness and funds.
The members of East Sussex held a bucket collection which raised ?270.81.
This means that so far events and donations on our trip have raised over ?3000 for the MND Association.

WBexhillmusice enjoyed the afternoon exploring Bexhill and found some fabulous Jazz music at a small pub called The Harp. ?The young man on the left is barely 15 and already playing like a seasoned professional.

 

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De La Warr Pavillion
Thrown Up By The Sea
Thrown Up By The Sea

South Coast Trip – Blog day 2 Folkestone

Carer's Corner, Fun Event, General Support, Volunteering

We started our day with a superb breakfast at The New Inn Sandwich.
Our first bus took us to Dover where we caught a bus to the?Memorial For The Few at Capel le Ferne.

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Meeting at Memorial to The Few

We enjoyed a brilliant support meeting with a presentation from Clive Butler about the Memorial while we had tea and coffee.? It was great to see so many PwMND and their carers.
We then visited the Scramble Experience Exhibition an incredible interactive Video, audio and equipment Exhibition.
The Memorial is a wonderful place very evocative and totally wheelchair friendly.
Accessible by bus from Dover or Folkestone right to the door.
Huge thanks to Clive Butler for organising our visit.
On leaving we caught a bus to Folkestone together with Cathy Finnis and her husband Tim, then off?to Hastings and finally to Bexhill, where we arrived around 6 and made to our B and B for the night.

Brilliant Spring Lunch

Carer's Corner, Fun Event, General Support
Tables set for lunch
Tables set for lunch
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Sarah Martin addressing lunch

We had a great Spring Lunch Support Meeting?with 42 guests in attendance at East Kent College in Broadstairs.

The college laid on a superb meal which was served beautifully by the students.

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Peta Ashby presenting cheque to Hazel Watts

Peta Ashby presented a cheque for ??9322.47?to our treasurer Hazel Watts, being the monies raised at The Masked Dinner Dance in Tenterden see https://mnda-eastkent.org.uk/wordpress/?p=1291

Our speak was Sarah Martin, a research worker from Kings College Hospital who spoke about current research activities to find a cure for MND.

Clive Hudson gave a brief presentation about the Great South Coast Road Trip, mentioning particularly the events in East Kent. See https://mnda-eastkent.org.uk/wordpress/?p=1348

The lunch ended with the customary raffle and after dozens of prizes were handed out we left to enjoy the remainder of a beautiful day.

 

 

 

Regional Conference – Crawley 9th April 2016

Awareness, Campaigns, Carer's Corner, Research

Regional Conf 2016 A The South?s regional MNDA conference was held at Crawley on 9th April. One feature of the new regional conferences is that there is live streaming of the conference. This enables people to watch the conference live from their own homes.

The day was split into three sections. Firstly there was a section on care – Hilary Fairfield, the Regional Delivery manager spoke. ?There was a section on campaigning and raising awareness. David Setters of East Surrey Branch spoke about his motivations to campaign, alongside John Kell, Policy Manager. Do please watch this as David is an inspiration to many of us and a great speaker.

Regional Conf 2016 BIn the afternoon there was a research section where?Dr Jacqueline Mitchell spoke about the role of mouse models in understanding the role of protein build up in MND.

If you have not?been to an MND conference, do try. The best part as ever, is meeting up with people living with MND and their families. We often call it the “MND family? and it really does feel like you are meeting up with members of a large supportive family. Other highlights are meeting staff from the Association, who normally you only email and looking at all of the stands with all of the MNDA?s literature.

 

The link to the?livestream is below.

http://livestream.com/eventstreamingcompany/mnda

Thanington Support Meeting

Carer's Corner, General Support

We had a very enjoyable support meeting in Thanington on April 9th.

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Jan Hickman Painting

There were 22 of us and we were addresses by Margaret Edwards from the Pilgrim’s Hospice who?talked about the provision of day hospice services, which include classes in various disciplines including art and music.? The hospice is looking for more??volunteers who could lead such classes.

Jan Hickman brought along two paintings and a memory box which she has recently made.? These were superb and everyone enjoyed them.

Clive Hudson gave a brief report about the Spring Lunch on May 7th.? Places are still available.? Follow the link for? Full details, where you can also download a booking form.

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Clive also mentioned the Great South Coast Road Trip, follow the link for full details.? Patrick Lawrence organised a raffle which was very successful and everyone left with a prize.? The raffle raised ?122 towards expenses on the Great South Coast Road Trip.? You can donate here https://www.justgiving.com/MNDA-East-Kent1

Judy Keay commented after the meeting “It was a good meeting and such a joy to hear the constant hubbub of people chatting and catching up with each other – especially the new members.”? Difficult to find a better description of the meeting.

 

 

 

Spring Lunch 2016

Carer's Corner, Fun Event, General Support

Our third annual Spring Lunch Support Meeting will be held at East Kent College, Ramsgate Road, Broadstairs, CT10 1PN on Saturday May 7th at Noon.

There will be a three course lunch (see below for menu), during which we will sell raffle tickets for our Grand Raffle.

Our Guest Speaker this year will be Sarah Martin a researcher?at Kings College Hospital who will speak to us about current research projects and trials.

You may download a copy of the booking form by following this link http://mnda-eastkent.org.uk/pdffiles/SupportLunch2016No Crops.pdf

Spaces are limited, so please send your bookings as soon as possible to MNDA, C/o 171 Percy Avenue, Broadstairs, Kent, CT10 3LE

 

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NICE guideline on MND published

Awareness, Campaigns, Carer's Corner, General Support, Medical

The National Institute for Health and Care Excellence (NICE)* today (Wednesday 24 February) published its guideline on MND.

Sally Light, Chief Executive of the Association said: ?The MND Association strongly welcomes the publication of the NICE guideline on MND. This long awaited guideline has come about after more than four years of campaigning by the Association and our supporters.

?It is a hugely significant document that sets out in detail what good care looks like and how it should be delivered. It will shape future care and have a huge influence over the quality of life for people living with MND and their families and carers.

?We look forward to working with our members and supporters to ensure the NICE guideline on MND has a positive impact on the care and support available to people with MND, their families and carers in England, Wales and Northern Ireland.?

There are four main NICE documents published today, see below:

The short guide is likely to be the main reference tool for professionals. It focuses on recommendations to clinicians and practitioners about what they should do when caring for people with MND.

The full NICE guideline discusses some of the reasoning and rationale behind recommendations in full and will be a hugely influential reference tool.

You can read our review of the NICE guideline?and how it?affects people with MND here.

About NICE

*NICE is an independent body with an aim to improve outcomes for people using the NHS and other public health and social care services. Since 1999, it has provided the NHS, and those who rely on it for their care, with an increasing range of advice on effective, good value healthcare, and since 2013 it gained new responsibilities for providing guidance for those working in social care too. It produces evidence based guidance and advice for health, public health and social care practitioners.

Guidance from NICE is directly applicable in England, and guidelines are also routinely adopted in Wales and Northern Ireland.

24/02/2016

Folkestone Support Meeting

Carer's Corner, General Support

Brilliant support meeting attended by 30 persons, who enjoyed a short speech from The CEO of Carers Support Canterbury Dover and Thanet.? Details of Carers Support.

Hand and neck massage was offered to those who needed it and we have to thank The Red Cross for providing this service.? Should you be interested in hand massge therapy, you can contact?Robyn Dye 01227 ?864707 she is the contact for Therapeutic Care?at The?Red Cross in Folkestone.

Tea, Coffee, Cake and biscuits were enjoyed by all, while enjoying supportive and interesting conversation.

Our Next Support Meeting will be at Thanington Neighbourhood Resource Centre, Thanington Road, Canterbury, CT1 3XE on Saturday 9th April at 11.00.