North and East Herts Branch

North and East Herts Branch

September Newsletter

Jordans Mill

September meeting

The MND association website is:

The National Office helpline is: 08457 626262

Motor Neurone Disease Association – Registered charity No. 294354

Patron: Dr Viv Lucas

A Message from the Chair

I hope that we can look forward to more summery weather in September when we return for our next meeting on Wednesday 30th September. This will be an afternoon visit to Jordans Mill in Biggleswade and there are more details from Marilyn in this newsletter. The October meeting will again be held at the Bedwell Community Centre at the usual time of 7.30pm on Wednesday 28th.

I should like to thank Jim Bourke and his family for organising the street collections this year and those who helped on the day. The total for the Letchworth collection was reported in July’s newsletter and the Hitchin collection in August raised over £500.

Our thanks must also go to Keryle and Iaine Rutherford for organising a very successful coffee morning and Bring and Buy Sale which raised over £1,000 for the association, with half that amount going to the branch.

David Cameron has responded to the MND Charter, which was presented to No 10 Downing St in June, and agrees that there is a need for national guidance for professionals caring for people with MND. Let us hope that action and funding will be available for this to become a reality.

It seems a little premature to be talking about festive lunches, but the committee will be making plans for this at their next committee meeting. We try to arrange this on or near to the usual meeting date but as this will be on the 24th Nov. it is likely to be at the beginning of December. We will have more details nearer the time.

Fingers crossed for a fine day on the 30th September and hope to see you then.

Gloria

Branch Publicity

We have the opportunity to get more coverage for branch activities in the local Comet and Jude Lenderyou has agreed to become our publicity officer. If you have any information about future fund-raising activities, donations from individuals or organisations or events please let her know.

Her e-mail address is

Please head the message MND Publicity so that she can easily see it amongst the many e-mails she receives. You can also phone 01438 488653

Letter from the PM to Sally Light in response to the MND charter

Thank you for your letter of 16 June and for delivering the Motor Neurone Disease

(MND) Charter to Downing Street.

Anyone who has witnessed someone suffering with MND knows that patients can

experience a rapid decline in their health, losing their mobility and their ability to

speak. It is vital that the NHS responds rapidly to this changing level of need and

NHS England's neurosciences service specification sets out what providers must

do to deliver high quality specialised care and support equity of access for patients

withMND.

Over the past year, NHS England has been working closely with the MND

Association to ensure that new funding for the National Augmentative and

Alternative Communication (AAC) aids service has been distributed in a fair and

consistent manner. AAC aids are important in addressing quality of life and

independence by restoring communication for those who cannot communicate

using speech. A nationally commissioned service represents an important step

forward. I am delighted that NHS England has identified funding of £ 15 million

per year from 2015/16.

It is also important to ensure that there is clear guidance on best practice in support

of people with MND and the Department of Health has asked the National Institute

for Health and Care Excellence to produce a clinical guideline for the diagnosis,

treatment and care of patients with MND. We expect this guidance to be published

in February 2016.

I hope this letter offers you some reassurance of the steps the Government is taking

to improve care for those with MND. Thank you, once again, for writing on this

important issue.

Past Events

Coffee Morning

Iain and Keryle Rutherford held an extremely successful MND Coffee Morning
on Saturday 25th July which, with some donations from friends & family who couldn't attend,raised the magnificent sum of £1060 to date . It was a great 2hrs and the Church Hall was heaving with their family, friends,neighbours and others from their many connections! They are both absolutely overwhelmed and cannot believe howsupportive and generous everyone has been !

Very many thanks to you both.

Meeting At Bedwell Wednesday 29th July

For our July meeting we met again at Bedwell,Stevenage and Annette, who works for Headway gave us a fascinating talk on 'How good is your memory'. Headway is the UK wide charity that works to improve life after brain injury. Annette showed us a model of the brain and then explained the functions of each part. We had an interesting time answering some questions about our memories and a short fun test, one of which was writing down the months of the year in alphabetical order! She noted that during that time the absolute silence while we concentrated! It really was a most interesting evening and on behalf of all who were there many thanks to Annette.

Maria

Hitchin Street Collection

Many thanks to Jim Bourke and his son Jim for once again arranging the collection in Hitchin on Saturday 1st August. The amazing amount of £588.00 was collected.

A BIG THANK YOU to Jim, Jims son Jim, Lauren and Megan, Jim’s daughters, his older brother Mark, Jane Stewart, Jim’s sister- in- law, David and Ann Sims, Jane Cave, Annette Ward, Jon Ward, Marilyn Dodson, Chris Walker, Martin Walker and Liz McCreadie.

Living well at home

Disability equipment and aids can help you manage more independently at home in a number of daily situations including mobility, bathing,continence, seating, eating/drinking, dressing and much more. As with adaptions, support may be available subject to assessment through Herts County Council.

A Disabled Facilities Grant may be able to help towards the cost of providing adaptions and facilities. The grant can also help to pay to improve or provide a heating system which is suitable to help someone living with a disability.

Hertfordshire CC – – 01438 737400

Exciting development to improve care and support for people with MND

The National Institute for Health and Care Excellence (NICE)* published the draft guideline on MND. This long awaited guideline came about following several years of campaigning by the Association and our supporters. The NICE guideline, when published in its final form in February 2016, is designed to improve health and social care by making recommendations to health and social care professionals on how best to treat and care for someone with MND. At present, the guideline is in draft form and open for consultation for only a few weeks. This consultation period is our chance to tell NICE what we think of the guideline and we need your views to inform our response and ensure it best reflects the needs of people with MND. Please spare a few minutes tolook at this on the MND website and tell us what you think.

Future Events

September Meeting

Thanks to Annette & Jon, I recently paid a visit to Jordan's Mill near Biggleswade where we have booked a table for those who are able to attend for a Cream Tea at 2.30 pm on Wednesday, 30th September . The cost is £4.75 per person including a drink.

If you are keen to join us for the cream tea on that day, I would be pleased to hear from you so that I am able to phone through our numbers before the 28th. Phone me on: 01992 420180 –

There is an opportunity to have a guided tour of the Flour Mill, there is one at 1.30 pm or 3 pm the nearest times to our visit. Annette and I do have a few brochures if you would like one before the day do let us know so that we can post them to you.

If you would like to join a guided tour of the mill this will need to be booked. We ask you to make your own arrangements for this please. The telephone number to call is: 01767 603940 to make a booking. The cost for this is £5.00 and if you wish to tour the Gardens as well there is a charge of £1.80.

Thank you ,Marilyn

Sponsored Silence

My father, Ernest Lenderyou, was an active 84 year old who had survived, prostate cancer and had a long happy retirement. In this respect he was lucky. He enjoyed travel, meeting people, eating out and generally being part of society. He was a fiercely independent man. He began to lose power and became clumsy and just "not quite himself". Between Christmas and New Year my mum and I visited the specialist at Pinehill, Dr Warner, who told us the news he had a rapid form of MND. This took a while to sink in as we both had very little knowledge of the illness. It progressed rapidly, taking away his mobility, his independence and ability to eat. I remember him falling over and as we struggled to get him upright he said to us, "This is an awful disease". In March 2005 we all went out for a Birthday Month celebration meal with all the family. He could not even swallow soup. He looked at me and said, I can’t even do the one thing left I really enjoy, go out for meals. By May he had died. A shadow of the man he once was. But still my Dad who I love now as much as I did then. Since then my mum has worked tirelessly with the local branch of MNDA which raises funds. There is no government, NHS or specialist help for sufferers of this illness. The sufferers and carers depend solely on this charity for, wheelchairs, IT aids, respite for carers, transport and holiday breaks. The money raised goes to local sufferers, it is run by volunteers. Money is also sent from the branch toward research nationally.

By partaking in a 24 hour silence, and anyone who knows me will know how difficult this will be, I hope to raise funds and also awareness of the disease and one of the side effects which is losing the ability to speak. I will be accompanied all day by a friend who will vouch for my compliance. I am going to put myself into situations where I need to push myself to communicate without speech. If you can afford to sponsor me, however little or much it would be very much appreciated.

For my Dad and all the other sufferers out there and to come I pledge to do this and succeed.

I have a just giving page, If anyone wants to donate

If you need any more information please let me know. My number is 01438 488653

Jude Lenderyou

Christmas Orders

Christmas is fast approaching. Marilyn has again kindly agreed to collect our orders and send them off as a branch order. The Christmas catalogue will be available at the September meeting or you can go on line to see it. Please let her have your order before the October meeting on the 28th or at the meeting. Her contact details are: 01992 420180 or

FUTURE MEETINGS AND EVENTS FOR YOUR DIARY

September Visit to Jordans Mill

Wednesday 30th Holme Mills Langford Road Broom

Bedfordshire SG18 9JY

Cream Tea 2.30pm

October Our speaker will be a representative from Remap

Wednesday 28th

November Christmas lunch – to be arranged

Bedwell Community Centre

Bedwell Crescent

Stevenage

SG1 1NA

Bedwell meetings are the last Wednesday of the month at 7.30pm

BRANCH MANAGEMENT COMMITTEE

OFFICERS

CHAIRMANTREASURERSECRETARY

Gloria LenderyouHeather HurleyMarilyn Dodson

43 Wildwood Lane10 Glebe Road9 Barclay Close

StevenageLetchworth G CHertford Heath

Herts SG1 1TBHerts SG6 1DRHertford SG13 7RW

Tel: 01438 488653Tel: 01462 627025Tel: 01992 420180

COMMITTEE MEMBERS

Annette l: 01462 436928

Christine l: 01438 717169

Maria el: 07800978281

01920 422980

Jane Cave Tel: 01462 434665

BRANCH CONTACT

Christine Carter2 Woodland Way, Welwyn, Herts AL6 0RZTel: 01438 717169

ASSOCIATION VISITORS

Maria el:07800978281

01920 422980

Christine l: 01438 717169

Lesley el: 01920 469067

Sue Plummer l: 01923 330330

REGIONAL CARE DEVELOPMENT ADVISER (RCDA)

Liz el: 08453 751840

THE MND NORTH HERTS WEBSITE

THE MND HELPLINE – NEW CONTACT NUMBER

Tel:03457 626262

All calls are charged at local rates. The hours of opening are:-

Monday - Friday 9.00 a.m. - 5.30 p.m. and 7.00 p.m. - 10.30 p.m.

Saturday, Sunday & Bank Holidays: 10.00 a.m. - 6.00 p.m.