www.mutual-support.org.uk March 2017
Views from Sunningdale Park Hotel—Booking form enclosed
Multiple Sclerosis Society. Registered charity nos. 1139257/ SCO41990. Registered as a limited company in England and Wales no. 07451571 Mutual Support Patrons Dr Faraz Jeddi MBBS, MRCS(Ed), AFRCS(Ire), Pg Dip In RM Dr Anita Rose B.A. (hons), D.Clin Psy., AFBPsS, C. Psychol
President Air Commodore Mike Barter CBE
Honorary Life President Air Vice Marshal TB Sherrington CB OBE
Vice President's Kim Bartlett Col Paul Cummings Air Commodore R Merry MB BS FRCP MRCPsych RCOG
Honorary Members Christine Jones Roger Langdon MBE Lieutenant Colonel C S MacGregor KRH Stephanie Millward MBE Alastair Hignall CBE
Newsletter Articles To Be Sent To:
Liz & Neil Abrahams Newsletter Editor 10 Redriff Road Romford Essex RM7 8HD
Newsletter Deadline For :
Sunday 26th March 2017
Cover Photo: Tripadvisor Sunningdale Park Hotel
Chair’s Address
I am delighted to announce The Soldiers Charity has once again shown its strong support of our work by giving us a grant of £8k towards general expenses in support of our Army members. Without funding like this we could not do what we do so our most sincere thanks go to everyone at the charity who made this happen for us – and in record time too! Everything crossed for a similar response from the other big donors this year.
The audit I mentioned in the last couple of newsletters has finally been published and Simeon & I will now meet with The Society to discuss the next steps. The Society now has some significant issues with the fact that we operate differently from branches, something we have done since we first became part of The Society in around 1993. We operate differently out of necessity to support our unique membership and because many areas of The Societies administrative systems and training do not work for us. It was previously the case that The Society celebrated our differences and commended us for our outstanding administration, holding us up as a shining example to branches. However, things are changing at The Society and they are less comfortable with our differences than they once were. We are not sure what this will ultimately mean for Mutual Support but rest assured we are both doing all we can to find an acceptable outcome that enables us to remain as part of The Society but continue to offer members the kind of support they need. What we do not want to do is to effect change such that we become the same as branches, operating identically to them and thus lose both our identity and ability to offer members the support they need in the manner they want; this surely should be the aim of any charity and means that sometimes, particularly when trying to cater for a diverse part of society, that one size does not fit all.
Bookings are rolling in to our new Events Organiser, Sarah, for the weekend of 5 to 7 May 2017 at Sunningdale and if you want to attend but have not yet applied please don’t leave it until the last minute (application later in this newsletter). At this weekend there will also be a ‘military-style’ dinner evening as is traditional at the spring weekends. A small donation is Invited for this dinner evening - £15 a head with a 50% discount for children. This includes a three course meal and drinks with dinner – outstanding value as those who have been before will know. There is no charge made for the rest of the weekend (food or accommodation) so you just need to get yourselves there to join us for an informative weekend of information on relevant topics, workshops for kids and carers, social events and a chance to meet other members.
This weekend will encompass our ‘Annual Meeting’ – I deliberately punctuate this term as technically we no longer have any obligation to hold such a meeting. Indeed, The Society is positively discouraging such formal meetings. Our accounts are now audited and approved by the Society and require no acceptance by our members, Committee posts are no longer voted in by members but from now on will be approved by The Society. As our relationship with The Society is currently in question this year all posts will be approved by me and The Society has agreed this change. All this means that the meeting will be far less formal this year and will focus on us telling you what we have achieved this year and to encourage member participation in this less formal setting. It remains, however, a very important opportunity for you, the members, to engage with us as a Committee and make sure the services we provide are what you want, so please think about this in advance and if you have ideas you would like to discuss but will not be able to attend please contact me with your thoughts in good time.
Enjoy the rest of the newsletter
Suzanne - Chairman
Support & Respite Weekend Spring 2017 5 - 7 May 2017, De Vere Sunningdale Park Hotel, Ascot
BOOK NOW!
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!).
This weekend we would like to try something new for the children. Although it may seem a little early, we will be hosting a competition for the best Christmas card design—with the view to have the winner printed and available to buy at the next Autumn respite weekend. So Kids, get your thinking hats on!
We will also be holding an auction for a very special piece of jewellery, details posted later in newsletter!
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 your 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 from the events page on the website, complete and email to [email protected]
Alternatively post a hard copy to the address below, but email is the preferred option
Folly Cottage Adsett Westbury on Severn Gloucestershire GL14 1PQ
If you have any questions regarding the weekend please email as soon as possible – all queries to Sarah Edginton:
Sarah Edginton – Events Organiser
Spring 2017 Support/Respite Weekend Booking Form DeVere hotel Sunningdale, Ascot 5 -7 May 2017 Please complete one form for each room required Name:
Partner / Carer Name:
Address:
Telephone: Mobile:
Email:
Your email address will be used to acknowledge receipt of your booking form and confirmation of place
Number of Adults: Children (Under 16):
Please note we require the names of all children attending, along with their ages
Accommodation. All rooms are en suite and have either a shower over a bath or a shower cubicle with 6” high step (we have some small steps available). Wheelchair accessible rooms are designed for the needs of wheelchair users, and have a wet room style shower; however there is a limited number of these available, so they will be allocated to those with most severe mobility needs first. Twin rooms are not available at this hotel unless you are prepared to be located in a building that is not particularly close to the conference facilities.
Fully Accessible Double Room ☐ Double Room ☐ Single Room ☐
Put-you-up type beds are available for small children sharing rooms, please specify if required ………………….
Other Information.
We will arrive on (date) at (time)
Have you attended a residential weekend before? Yes ☐ No ☐
Is the person with MS currently serving in the military? Yes ☐ No ☐
Are you a wheelchair user? Sometimes☐ Yes ☐ No ☐
Do you anticipate needing the help of the Professional Carers? Yes ☐ No ☐
If yes, you will be contacted regarding your care and equipment require- ments. Please specify if evenings or weekends are the most convenient time to contact you.
All meals comprise an extensive hot and cold buffet with plenty of choice. Do you have any specific dietary requirements or allergies that need catering for? Please specify –
Please note that at this weekend there will be a military style dinner on the Saturday night and as such we ask for a £15 per head donation to help cover the added costs. Please send payment direct to:
Mr S Grundy – Treasurer 2 Dairy Lane Cayton Scarborough Yorkshire YO11 3EA Note: Payment MUST be received prior to the event!
Please email your completed forms to: [email protected]
Fundraising Auction — 6th May 2017
At the next support & respite weekend in May, we will be holding an auction for a rather special piece of jewellery:
A poppy necklace made from the metal of an old spitfire.
The necklace is made from the original metal of a Spitfire aircraft that flew during the Battle of Britain in 1940. The aircraft is now part of the RAF's Battle of Britain Memorial Flight which provide flypasts and other displays. As it is undertaking a renovation, panels of the original metal skin became available and have been made into Poppy Appeal products. The aircraft also starred in the classic 1969 film 'Battle of Britain'.
Anyone not attending the weekend can still participate via a “sealed bid”. Please send your bids to [email protected]
2016 – Annual Financial Report
Due to changes issued from the MS Society, we are no longer required to present and approve the full financial report at an Annual Meeting. That said as a committee we feel it is essential that you the members are able to see the way we both raised and spent money and are able to hold us to account. Should any of you have any questions concerning the attached, either please email the Chair/ Treasurer or if attending the S&R weekend in Sunningdale save your question for the Annual Meeting. Enclosed below is a table which shows both income and also a split in the way the group spent its funds. As you will see by far the largest expense each year is the cost of the two Support and Respite weekends and associated costs, for carers and therapists.
For 2017, we have set a forecast budget of £37295.00. There has been an increase in our forecast expenditure for the first time in five years. This is due to increased training costs for new STC personnel and also for the increased costs in postage as announced recently. Additionally, we have provisioned an additional £2500 for potential costs to the group. Despite these increases to our forecast, we will do everything we can to ensure we make best use of the funds that are raised/given to the group.
Simeon Grundy - Treasurer
Remember if you make a donation to Mutual Support, you need to advise us if you wish your name to be associated with the donation. If you do not specify then your donation will go down as ‘Anonymous’
Bomber Command Memorial
As the guardian of the Bomber Command Memorial, the RAF Benevolent Fund is extremely disappointed and saddened that the Bomber Command Memorial has once again been subjected to vandalism. Work is currently under way to remove the graffiti.
The Memorial commemorates the 55,573 members of Bomber Command who died in the Second World War, and as such, it is only befitting that the Memorial is kept in excellent condition. The RAF Benevolent Fund's role is to provide welfare for past and present RAF personnel and their families who are in need; this latest attack will once again divert much needed resources away from our primary purpose. For further information about the Bomber Command Memorial or to make a donation to support its upkeep, please visit our Bomber Command Memorial website.
Mutual Support Website Issues
Some of our members have had issues, be it lost user name/ password or forgotten details, or simply the website is having a glitch. Additionally some members have reported that clicking the 'forgotten password' link is not generating a new password. We are not aware of any issues, so if you do get this, then please check your spam box first.
If you are faced with this issue, please email [email protected] and request that your details be reset. Once I receive the email I will action it as soon as I can. Remember if you have changed email address, we will need to be informed to ensure you still receive the email version of the newsletter and update your login details.
PIP Changes
On 23 Feb the Government announced surprise changes to the Personal Independence Payment (PIP) assessment. The changes were unexpected and the MS Society is working hard to understand their potential impact and will keep you informed.
What are the changes to PIP?
The planned changes will affect the way that someone’s level of PIP award is calculated. They affect one of the ten ‘daily living activities’ (which determine eligibility for the daily living component of PIP), and one of the two ‘mobility activities’ (which determine eligibility for the mobility component of PIP).
The affected activities are Daily Living Activity 3 – Managing therapy or monitoring a health condition, and Mobility Activity 1- Planning and following a journey. The changes make these descriptors slightly more restrictive. They could impact the awards some people get.
Why do the Government want to do this?
The Government believe these changes are necessary because of two Upper Tribunal judgements in 2016. They feel the rulings in these judgements broadened the way PIP assessment criteria should be interpreted beyond the original intention.
SUE'S PIECE
"Yes, hello, I'd like a refund on my body. It's kinda defective and really expensive." - anyone with a chronic illness
PIP investigation: 100 cases, and still DWP refuses to accept the dishonest truth - 22 Feb 2017
The Department for Work and Pensions (DWP) has denied there is any dishonesty among the healthcare professionals who carry out its benefits assessments, even though Disability News Service (DNS) has now collected 100 cases where such allegations have been made. Disabled people have continued to come forward with their personal stories since DNS published the results of a two-month investigation into claims that nurses and other healthcare professionals had lied in reports they wrote after face-to-face assessments for personal independence payment (PIP).
And DNS has submitted anonymised evidence to the independent review of PIP being carried out by former civil servant Paul Gray on DWP's behalf. But asked if ministers were still insisting that there was no dishonesty among their assessors, and that they had no concerns about the issues raised by the investigation, a DWP spokeswoman said: "We expect the highest standards from the contractors who carry out PIP assessments.
"We do not accept it to be the case that there is dishonesty amongst them. "We are committed to making sure the PIP assessment process works fairly and effectively, which is why we welcome independent reviews such as the ones led by Paul Gray, the second of which is expected in April 2017. "Anyone not happy with their benefit decision can ask for it to be looked at again, and then appeal to an independent tribunal. "There is also a comprehensive complaints procedure in place."
G4S, Maximus and 'A4E' all set to win contracts under Work and Health Programme
Some of the country's most controversial and discredited outsourcing companies are set to win contracts under the government's new programme to find jobs for disabled people and other marginalised groups. The Work and Health Programme will support disabled people, those who are long-term unemployed, and other groups such as ex-carers, ex-offenders, homeless people and those with drug or alcohol dependencies. Among those successful in the Department for Work and Pensions' (DWP) Umbrella Agreement for Employment and Health Related Services were Maximus, People Plus (formerly known as A4E) and G4S. The Work and Health Programme will replace the mainstream Work Programme She said the budget for the new programme was not yet "in the public domain". Asked about the track records of Maximus, G4S and People Plus, the DWP spokeswoman said the umbrella agreement had been subject to public sector procurement regulations, and was conducted in an "open, transparent non-discriminatory manner". She said: "Each competition is designed to identify the winning bids over a range of pre-determined criteria."
New evidence strengthens link between salt and MS
High salt diets have been seen as a potential risk factor for MS in the past, but a new study has brought the subject to the fore once again, after researchers presented data which found a high salt diet boosts the number and maturation of animal and human Th17 cells.
Read more -http://www.ms-uk.org/new-evidence-strengthens-link- between-Šalt
Who remembers 'Capita'?
The BBC has ordered an investigation into reports that a firm of TV licence fee collectors targeted vulnerable people spurred on by an aggressive incentive scheme. It's said to promise a bonus of up to £15,000 a year if they catch 28 evaders a week. The firm is 'Capita' who were heavily criticised for their PIP assessments. Do I hear the words "leopard" and "spots"?
Not A Joke
A PERSON WITH MULTIPLE SCLEROSIS WALKS INTO A BAR ... AND THEN A TABLE, A CHAIR, A WALL.
Sue Bennison has had MS since 1986, she writes an occasional 'piece'.
Thoughts for the day!
"Before you criticize someone, you should walk a mile in their shoes. That way when you criticize them, you are a mile away from them and you have their shoes."
"You know you're getting old when you stoop to tie your shoelaces and wonder what else you could do while you're down there."
"The surest sign that intelligent life exists elsewhere in the universe is that it has never tried to contact us."
HSCT Study
What did the trials involve?
This study involved 281 people with different kinds of MS, 78% of whom had progressive MS. Everyone involved had the stem cell therapy between 1995 and 2006.
HSCT is an intense chemotherapy treatment being developed for MS. It aims to stop the damage caused by MS by removing harmful immune cells. The person’s own stem cells are then used to regrow the immune system.
The results are also a reminder of the aggressive nature of the treatment. Eight people in the study died as a result of the procedure.
Who benefited from the treatment?
The study showed that HSCT is most effective in people with MS who have ‘active inflammation’ in their brain and spinal cord.
Five years after the treatment, 73% of people with relapsing MS and 33% of people with secondary progressive MS did not experience any worsening of symptoms.
If someone has progressive MS but is still experiencing inflammation and relapses the treatment may be able to stop or slow this damage. However, the treatment can’t reverse damage that’s already done. For people with progressive MS without inflammation in their central nervous system this treatment is not expected to help.
Dr Sorrel Bickley, the Society’s Head of Biomedical Research, said: “This study is one of the largest to date looking at HSCT as a treatment for MS and the findings offer some encouraging insights.
“If anyone with MS is considering HSCT they should speak to their neurologist as a referral is needed to access this treatment via a trial or on the NHS.”
Mutual Support Merchandise
Do you have a Mutual Support Pin Badge, trolley token or car sticker?? If not why not buy one and and advertise the group as you wander down the street/to and from work.
These badges are available for a small suggested donation £2.50 inc post and packaging
Trolley Tokens are £2.50 inc Post & Packaging
Car Stickers are £2.50 inc Post & Packaging.
If you would like to obtain any merchandise then please contact Simeon Grundy either by email: [email protected] or by phone 07962 708899.
Best Wishes, Simeon Grundy Treasurer
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VINCE, HOW Kim & Cheryl Bartlett [email protected] DID Sue Bennison [email protected] YOU SAY Paul Boyce [email protected] WERE? Ian Brown [email protected] Terl Bryant [email protected] Paul Collins [email protected] Wendy Cunningham [email protected] Terry Fleming [email protected] Simeon Grundy [email protected] Chrissie Hammond [email protected] Alex Knapton [email protected] Roger Langdon [email protected] Jennifer Podesta [email protected] Mike Robbins [email protected] Julie Russell [email protected] Heather Smith [email protected] Sue Smith [email protected]** Andrew Stewart [email protected] Ron Twigg [email protected] Suzanne Crighton [email protected] Tina Dales [email protected] Dave Bracey - [email protected] Mary Jones [email protected] Angie Duncan [email protected] Graham Duncan [email protected] Alexandra Gearing [email protected] Sabine Barrow [email protected] Derek Kitchen [email protected] Bob and Hilary Winstanley [email protected] & [email protected] Carl Stringer [email protected] Jill Watson [email protected] Jim Watson [email protected] Heather and William Coffey [email protected] Andrew Williams [email protected] Neil Abrahams [email protected] Liz Abrahams [email protected]
*NEW **CHANGE
If you would like your name and e-mail address added, please let me know. Ed.
MUTUAL SUPPORT COMMITTEE 2015/2016
Mutual Support Committee Chair – Suzanne Crighton – 01480 534873 Vice Chair – Terl Bryant – 01780 755734 Secretary – Julie Russell - 01704 830086 Treasurer – Simeon Grundy – 07962 708899 Deputy Treasurer—Al Healy—[email protected] Events – Sarah Edginton [email protected] Fundraising Manager – Nick Maxey [email protected] Newsletter Editor – Liz Abrahams – 07977 583294 Publicity Manager – vacant Speakers – Vacant Support Team Manager – Hilary Winstanley – 01476 861160
Serving Members Team [email protected] - Pension Advisor - Terl Bryant - 01780 755734 [email protected] - Pension Advisor - Mark Paterson - 01294 203377 [email protected] - Pension Advisor—Heather Smith - 01803 311527 [email protected] - Katharine Sims - 07900 248766 [email protected] - Peter McKernan - 01305 772630
New Members Team [email protected] - Joyce Tesch - 01753 570320 [email protected] - Andrew Williams - 01286 650 453
Benefits Team benefits-1@mutual-support - Jackie Hagan - 07921 253122 benefits-2@mutual-support - Nikki Young - 07701 066305 benefits-3@mutual-support - Penny Tyas -07889 147074
[email protected] – Graham Duncan Newsletter Distribution – Carl Stringer - 01962 771328