01235 832023
The report slams the current provision of care for people with long-term neurological conditions, describing it as unsatisfactory from all perspectives, including those of patients, carers and commissioners (the people who plan and buy services). It draws a picture of care that is centred around institutions rather than patients, and cautions that this lack of integrated care results in delayed access to expert advice, particularly in times of crisis. Read on.
Biogen and AbbVie have been granted EU marketing authorization forZinbryta (daclizumab), to treat adult patients with relapsing forms of multiple sclerosis. Relapse frequency per year was shown to be reduced by up to 45% against other treatments, and 54% against placebo. Read on.
Results from the 24-month extension of the phase 2 BOLD study demonstrated no new safety concerns and low disease activity in patients with relapsing-remitting multiple sclerosis (RRMS) treated with siponimod. Read on.
New Rochelle, NY, July 6, 2016–An increasing number of clinical studies are pointing to a link between the autoimmune disease multiple sclerosis (MS) and the composition of microbes in the human gut, sparking new research on the gut microbiome as a potential target for MS treatment and prevention. Read on
Contact the ILC Mon to Fri from 9-00 a.m. to 5-00 p.m.
( 01235 524857 :www.guidepostsilc.org.uk
The current GPT ILC contract will cease on 30th September 2016 the ILC is open for business as usual until then.
You can sign the online petition. Full details at the end of the Newsletter. “Keep the Independent Living Centre. Prevention is better than cure!”
New leaflets – The ILC have printed New Leaflets, if you require copies, please contact us on ilc@guideposts.org.uk
New products in the Market Place
Designed 2 Enable ( 0800 772 3771
Brief details: Company which supply more stylish aids. Supply stylish patterned Top and Derby moderate compression socks.
If you have Irritable Bowel Syndrome, Crohn’s Disease or Colitis, you might be interested in these products, made for both men and women.
Myshreddies ( 01509 610610
Brief details: Supply flatulence filtering underwear for men and women. Also pyjama bottoms and jeans for men with a filter.
Zinger ( 0330 555 5225 : www.zingerchair.co.uk
Brief details: Supply a lightweight (18kg) powered wheelchair which folds down to 10 inches. 8 mile range.
Osprey Sling ( 01869 252015 :www.ospreyslingcompany.com
Brief details: Supply range of slings and hoists. Supply The Person into Bed System, a slide sheet system which enables a single carer to assist someone into bed. You can see a Youtube clip by following this link:
https://www.youtube.com/watch?v=wIMo73Yb0ok
A couple of UK companies are supplying a more fashionable range of continence underwear for men and women. The Complete Care Shop and Spring Chickensupply a range. You can see the whole range on this American web-site: http://www.confitexunderwear.com/
Call to Mind : www.call-to-mind.com
Brief details: Call to mind is a specially designed board game that helps get to know and understand the thinking, likes and dislikes of someone with dementia. This tool also stimulates memories and encourages conversations, both as the game is played and in everyday interactions. Play it at home with friends and family or in the professional setting of a care home, day care centre, hospital or memory café.
Dycem had just sent us some samples of one of their products. Super Grip tape which can be used to build up crutch and walker handles to make them more comfortable and give a better grip. They also supply a non slip cup holder which grips a mug which may help to avoid spillages.
A company have designed this device to help young children to flush push button toilets. The Kidsflush device makes a noise to encourage children to flush the toilet. The ILC have emailed the company to let them know that this device might be helpful for people who are elderly or who have arthritis and find these buttons difficult and might like a version without the sound!
Gordon Ellis are producing a new grab rail, the Prima Pivot which can come with a variety of different finishes and the grab rail can be cut to different lengths. You can find the grab rail in their latest catalogue: http://langham-ge.co.uk/media/pdf/2014-GE-Brochure-Bathroom.pdf
Soft Wheels
http://softwheel.technology/theacrobat/
Brief details: Designer of shock absorbing wheels for wheelchairs. Local supplier: Recare www.recare.co.uk
New products from the Naidex Exhibition
Naidex is a national exhibition about Independent Living and is held each year at the NEC, Birmingham. There are products, charities, talks and displays. Various people from the ILC went to Naidex this year and found the following aids, which may be of interest:
Ardoo ( 0115 718 0676 : www.ardoohoists.com
Brief details: Supply the Caresafe 140 hoist which also converts into a stand aid. Folds down for easy storage at home or to take in a car for holidays.
Putnams now supply a range of pillows for those who have sleep apnoea.
Laybrook (Mobility Warehouse) ( 01869 255400 :www.laybrook.com
* Unit 4, Arena 14, Bicester Park, Charbridge Lane, Bicester, Oxfordshire OX26 4SS
Brief details: Local supplier. Supply the Arena Grab Rail which is suitable for some types of domestic electric adjustable beds. Has an anti entrapment feature.
Centrobed now have a free mobile app to help people choose from the range of Centrobed beds.
eFoldi ( 020 3143 5168 :www.efoldi.com
Brief details: Supply a 3 wheeled mobility scooter, which folds down into a wheeled scooter. The seat is quite low and may be too low for some people.
Exximo ( +353 87 633 4895 :www.exximo.com
Brief details: Supply a long handled device for removing compression stockings.
Fuss Free Phones ( 08000 845 6600 : www.fussfreephones.com
Brief details: Supply a Doro phone. You can make your own calls or use the button on the back to link to a 24 hour call centre where operators make calls or write texts on your behalf. The operator can also screen calls.
PDS Hygiene ( 01603 426700 : www.pdshygiene.com
PDS Hygiene now supply a bidet/shower chair which is height adjustable and will fit over toilets fitted with a Bio-Bidet wash and dry toilet seat.
Holidays
We have found a few more holiday options. To see our holiday factsheets, please see this page on our web-site: http://www.guidepostsilc.org.uk/holidays
Flat Spaces ( 07930 042764 : www.flatspaces.co.uk
Brief details: Three bedroom self-catering holiday accommodation in Ropley, Hampshire. Close to Watercress Line railway centre. Two bedrooms have ceiling hoists and profiling beds. Wet room. Clos o mat toilets. Height adjustable kitchen worktop.
Manor Farm Holidays ( 01229 772849 : www.manorfarmholidays.co.uk
Brief details: Windrush Barn is a barn conversion designed specifically for people with disabilities. Sleeps 4-12. Located on a small holding close to the West Cumbria coast. Three bedrooms downstairs, one has a ceiling track hoist. Profiling beds. Level access showers.
Nancy Oldfield Trust ( 01692 630572 : www.nancyoldfield.org.uk
Brief details: The Nancy Oldfield Trust offers disabled and socially disadvantaged people accessible sailing opportunities on a range of cruisers, sailing boats and canoes on the Norfolk Broads. A wheelchair accessible bungalow with ensuite wet rooms can be booked.
Cheese Room Cottage ( 01630 685325 : www.cheeseroomcottage.co.uk
Brief details: Self-catering cottage near Shrewsbury. Two Bedrooms. Single room upstairs. Downstairs level access with double bedroom with profiling beds, wetroom, riser recliner chair in living room.
Peppers Barn ( 01509 880540 : www.peppersbarn.co.uk
Brief details: Accessible self catering accommodation in Burton on the Wolds, near Loughborough. 1 room downstairs has profiling bed, tracked hoist to bathroom which has wet room.
Other information new to the ILC.
Able to Love You : www.abletoloveyou.com
Brief details: Dating web-site for disabled singles.
Direct Access to Equipment Scheme.
Permanent residents in Oxfordshire can self-assess themselves for a variety of equipment (grab rails, raised toilet seats, shower boards etc.) which equipment direct from the OT department. See this web-site for more details: : www.oxfordshire.gov.uk/otequipment. The DAE web-site has been changed recently.
Online petition
Dear friend,
I just signed the petition “Keep the Independent Living Centre. Prevention is better than cure!” and wanted to ask if you could add your name too. Please do not send from your work address if you work for Social or Healthcare in Oxfordshire.
This campaign means a lot to me and the more support we can get behind it, the better chance we have of succeeding.
You can read more and sign the petition here:
“Keep the Independent Living Centre. Prevention is better than cure!”
Thank you!
Colin
P.S. Can you also take a moment to share the petition with others? It’s really easy – all you need to do is forward this email or share this link on Facebook or Twitter: http://you.38degrees.org.uk/petitions/keep-the-independent-living-centre-prevention-is-better-than-cure-1
Useful numbers below to copy into your telephone book
| Red Cross Head Office | 01235 552660
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Hire and short-term loan of equipment e.g. manual wheelchairs | |
| Social & Health Care | 0845 050 7666 New referrals
9-00 to 5-00 0800 833408 out of hours |
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| Emergency Duty | |||
| Carers
Oxfordshire
Action for Carers (CO, Rethink and Guideposts) |
0845 050 7666
01235 849470 or 07557 038277. Michelle Evans |
Carers supporting someone in Oxfordshire.
Face to face support, time out for carers, peer support, information. |
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| Attendance Allowance
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0345 605 6055
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Tax-free benefit for people aged 65 + who need help with daily living. | |
| Personal Independence Payments(previously DLA) Note change of number Personal Independence Payment. | 0800 917 2222 Text phone: 0800 917 7777 Monday to Friday, 8am to 6pm |
(PIP) helps with some of the extra costs caused by long-term ill-health or a disability if you’re aged 16 to 64 | |
| Oxfordshire Specialist Advice Service Age UK Oxfordshire, Citizens Advice Oxford, Citizens Advice West Oxfordshire and Oxfordshire Welfare Rights. | 01865 410 660 or atadvice@oxfordshiresas.org.uk
9am to 5pm Monday to Friday
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Provides answers to queries about benefits, money, budgeting and other welfare issues. | |
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Oxfordshire Falls Service |
01865 903400 |
Provide falls assessments and treatment plan, in patients’ homes in clinics and in care homes
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| Hearing Impairment
Visual Impairment |
Mornings only
01865 894925 SMS: 07713 329 501 Hearing.impairment@oxfordshire.gov.uk
Mornings only. 01865 894935 Textphone: 0303 003 0555 Visual.impairment@oxfordshire.gov.uk
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Advice and support people of all ages with hearing problems on a range of issues.
Contact them if: you are registered as blind or partially sighted you have sight problems which are severe enough to cause problems in your day to day life.
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| Millbrook | 0333 999 0870 | Equipment which has been loaned to you by Social Services. To check equipment delivery or pick up.
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| Blue Badge Team | 0845 050 7666bluebadgeadmin@Oxfordshire.gov.uk
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To apply for or renew Blue Badge. | |
| Community Bladder and Bowel Service
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01865 904303 | Community Bladder and Bowel Service for all adults with bladder and bowel issues. | |
| Wheelchair Service | 01865 227600 | You may be eligible for a wheelchair through this scheme, referrals via your GP. | |
| Fire & Rescue Service –
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( 08000 325999
:http://www.365alive.co.uk/wps/wcm/connect/micro/365alive/fire+safety/home+fire+risk+checks |
The local fire and rescue service will supply and fit fire alarms free of charge for identified vulnerable groups.
You can also complete your own home fire risk check which will take you through various high-risk areas and highlight where you may have a fire risk. |
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| Time Out for Carers’
A voluntary support service for carers provided by Carers Oxfordshire and Guideposts |
Ben Reynolds on 01993 899980/0781 5559 479.
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Offering short respite breaks through a range of options in the home and out in the community. | |
| Ace Centre – Information Day Appointments:
Speech Therapists who specialise in Augmentative and Alternative Communication (AAC) and Assistive Technology (AT), to support communication.
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South: Cassington, Oxfordshire
01865 759 800
ACE Centre The Stables Jericho Farm Barns Cassington Oxfordshire OX29 4SZ
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Offer a free one hour appointment. These appointments can be used for:
Clarifying the needs of the individual in relation to potential Establishing the team who will support the individual using Assistive professionals, parents and carers can all attend this appointment. Discussing possible resources and strategies in relation to the individual’s needs Considering loans of equipment for the individual to trial
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| Dig & Grow
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01993 709 430pstowell@guideposts.org.uk | Gardening to maintain or improve wellbeing for adults with a learning disability | |
| Dementia Oxfordshire
Information line |
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