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Disability Rights UK (DRUK) – News In Brief
To contact Disability Rights UK (DR UK) see www.disabilityrightsuk.org/contact-us
WE ARE LOOKING FOR NEW VOLUNTEERS!
Cruse Bereavement Care was founded in 1959 and is a national charity providing free advice, information and support to adults, young people and children who are struggling to cope with grief arising from bereavement, whenever or however the death occurred.
We always need more volunteers to meet the constant demand for our services. None of what Cruse achieves would be possible without the passion, dedication and skills of our volunteers.
We are currently recruiting for our next annual intake, the training for which will begin in January 2020.
If you think you have the skills and empathy to work with those who are bereaved and are interested in joining our team of committed and enthusiastic volunteers, we’d love to hear from you!
Please visit www.cruse.org.uk/get-help/local-services/south/surrey-north/volunteering where you can download our information leaflet and application form.
You can also read about our volunteers and some of the people they have helped.
‘YOU DON’T LOOK SICK’ – I DON’T HAVE DIABETES BECAUSE OF MY DIET. IT’S AN AUTO-IMMUNE DISEASE’ - Edited from metro.co.uk October 2019
There are 13.9 million disabled people in the UK – and many of them have an invisible illness. Metro.co.uk publish weekly stories about living with an invisible illness or hidden disability.
Jade Byrne, 32, from Darlington, Co Durham, who has type 1 diabetes, an auto-immune condition where the body attacks the pancreas and no longer produces insulin that controls blood sugar. Type 2 is often (though not always) caused by a bad diet and unhealthy lifestyle. Type 1 diabetes, however, cannot be prevented and is not caused by diet – but often Jade faces judgement because people don’t understand the condition.
She says: ‘People will say things like “But you don’t look diabetic” I usually respond with “and what does that look like?” ‘The response is usually, “well you’re not fat”. Only 10% of all diabetics in the UK have type one and so when we read about diabetes in the media, it’s referring to type 2 diabetes, typically brought on by lifestyle.
Jade looks healthy on the outside and when she occasionally needs to use facilities like a priority seat or disabled bathroom, she has faced stares from strangers. She explains: ‘I had to ask for a seat on a very busy train recently because I was having a hypo (low blood sugar). ‘Nobody said anything to me, but they were giving me looks. One man made me feel really uncomfortable. I know I shouldn’t have let his ignorance get to me. ‘I sometimes get a look coming out of a disabled toilet when I’ve been changing my pump, but I just have to brush it off or just give them a really fake smile.’
Jade was diagnosed at four years old after her mum read about the symptoms in an article and recognised that Jade had some of them, including drinking lots, weeing more often and feeling tired.
The technology used to control it has become much more advanced and has helped to improve her quality of life. She explains: ‘I wear a Dexcom G6 continuous glucose monitor (CGM) and an Insulet Omnipod insulin pump. ‘I always have two cannulas inside my body. These basically act as my pancreas.
My phone always knows what my blood sugar is and alerts me when it’s dropping. ‘My personal diabetes monitor (PDM) works out my insulin dosage based on the amount of carbohydrates I tell it I’ve eaten and the insulin to carb ratio that is programmed in for that specific time of day.
Jade needs to account for everything from stress levels, to the amount of exercise and even the weather to try to keep her blood sugar levels within range – 4 mmol to 9mmol.
She has a lot of support from friends, family and charities like the Juvenile Diabetes Research Fund (JDRF). She says: ‘I honestly think they are my best discovery. I am part of so many groups now and if I ever have a worry about anything, I drop a post in a group and I have a whole host of advice and support almost immediately.
Jade works as an actor, writer and children’s book author. She says: ‘Every day is different for me as sometimes I’m acting, which means my adrenaline is high. She’s also launching a children’s book called Daisy Donald on World Diabetes Day 14
November with JDRF, with £1 from the sale of each book going to the charity.
Daisy Donald wears an invisible cape to fight an invisible illness. The illness is like a monster that she has to tame and sometimes even fight. It’s revealed later in the book that the monster is type 1 Diabetes. metro.co.uk/2019/10/06/you-dont-look-sick-i-dont-have-diabetes-because-of-my-diet-its-an-autoimmune-disease-10814009/
BOY TOLD TO LEAVE WHEELCHAIR TO ACCESS LEGOLAND RIDES – Edited from The Independent October 2019
Sebby Brett, from Gloucestershire, had been taken to Legoland in Windsor by his family as a special treat after he had endured four operations over 12 months. He suffers from an undiagnosed medical condition, similar to cerebral palsy, which has left him unable to walk.
She said her son, who was excited about the rides and seeing the character Lego Batman at the park, was left humiliated when he was told he could not board the ninja-themed Ninjago ride.
Staff apparently told the family the rule was to prove Sebby could walk in case of evacuation. The child was made to walk for three steps while holding his mother’s hand. But once he had completed the steps, staff reportedly said he had to do it again because they were not satisfied with his first attempt, according to the Press Association.
Ms Brett said: “It was humiliating, and a totally arbitrary number. Are they saying you are only ever three steps away from danger? “Everyone was watching, and knew we were the reason the ride was delayed. “Anyone that knows Sebby has been bored to death by his knowledge and love of Ninjago.” Ms Brett said after they finished on the ride, her son asked her: “Why would they make a disabled person walk? It really hurt.”
When Ms Brett questioned the policy, she was handed a guide which showed 80 per cent of the rides are not accessible for disabled people. She said that despite booking a disabled pass, staff at the park had not made her aware there would be any accessibility issues. “Had we known, we wouldn’t have gone,” she said.
The family have called on the park to review their policies. “I don’t agree with their three-steps rule, but they should have done this in private, at the start of the day so Sebby didn’t have to repeat it in front of other people,” Ms Brett said. “They also need to reconsider how inclusive their park is.” She added staff needed better training on how to deal with disabled children.
A spokesman for the park apologised for any distress caused to the family, but said the policy was “necessary”. They said: “The health and safety of our guests is always our priority and we have a number of requirements in place to allow our guests with disabilities and additional needs to enjoy our rides.
“On some rides, such as Lego Ninjago The Ride, guests are required to walk unaided. This is necessary in the case of guests being evacuated from the ride, as they would be required to walk during the evacuation process. “We are always working to make the resort more accessible and constantly review our processes.”
PROPOSAL FOR SUPERMARKET BLUE BADGE PARKING BAY ABUSE SURVEY
Following the conclusion of the Biennial Disabled Motoring (DMUK) Baywatch survey and the publication of the 2019 results, SCAN believes it would be helpful if we could assess how widespread the problem of Blue Badge parking bay abuse is at Supermarkets locally.
The survey period will be a minimum of one week and when we have setup a date, (after discussion at our AGM) we will issue a short form for all participants to complete for every supermarket visit made during the survey period.
Questions will include;
How many Blue Badge spaces have been provided?
How many vehicles in the Blue Badge spaces are NOT displaying a badge?
Is there signage indicating that enforcement of the spaces takes place?
If you experience problems getting access to Blue Badge spaces at your local supermarket, and would like/are able to help us with this assessment by taking part in this survey, please contact SCAN at email@example.com text 07853 038933 or please come along to our AGM on Wednesday 6th November when we will be happy to discuss the issues and take your contact details.
EQUALITY AND HUMAN RIGHTS COMMISSION (EHRC) MAKE STAND AGAINST INACCESSIBLE PUBLIC TRANSPORT
The Equality and Human Rights Commission (EHRC) in Scotland has pledged to support disabled and older people who are challenging transport providers for not providing accessible services. The commission has said that it will help people with these types of discrimination cases by offering advice and assistance and providing funding for legal support so that these transport providers can be taken to court.
EHRC Scotland has stated that it will consider assisting people with a wide range of disabilities including mental health conditions. Professor Lesley Sawers, Commissioner of the Equality and Human Rights Commission in Scotland commented: “Transport operators must ensure equal access to public transport for all.
They have clear responsibilities in law to ensure disabled people and older people travel with ease, but too often they fail to meet these obligations. Our Legal Support Project will provide funding and help to resolve complaints but, failing that, we will not be afraid to support a case to ensure that people can enforce their legal rights and seek redress. Older people and disabled people must be able to access and use public transport just like everybody else."
DEPARTMENT FOR TRANSPORT PROVIDES MORE FUNDING FOR CHANGING PLACES TOILETS
The Department for Transport (DfT) has been working in partnership with Muscular Dystrophy UK (MDUK) to provide funding for a further 22 motorway service stations across the country to have Changing Places toilets fitted.
There are a quarter of a million people in the UK who require access to Changing Places facilities because they need the extra space and specialist equipment provided.
Thanks to this funding, more than a third of the country’s motorway service stations are set to be fitted with Changing Places toilets. These facilities help to make long journeys more viable for a huge number of disabled people and this is why a second round of funding is now being launched to help install more Changing Places toilets at A-road service stations.
The Transport Secretary, Grant Shapps, commented: “In a modern country, everyone should be able to travel. Despite improvements in some areas, we need our roadside services to be better for the quarter of a million people who cannot use standard accessible toilets. This is why we would like to go even further by extending this to the trunk road network. I encourage as many operators as possible to apply for funding, to open up our road network to everyone who wants to use it.”
ADULT SOCIAL CARE (ASC) COMMISSIONING INTENTIONS 2019/20
Following engagement with key stakeholders, people who use services, carers, families and local residents, Adult Social Care has published its 2019/20 ASC Commissioning Intentions, aimed at promoting independence, health and wellbeing.
You can now find the document in a standard format and easy read version on the Surrey County Council website. www.surreycc.gov.uk/social-care-and-health/adults/information-for-professionals-partners-and-providers/adult-social-care-strategies-policies-and-performance
BLUE BADGE APPLICATIONS NOW COVERING NON-VISIBLE DISABILITIES
Local authorities can now take into account people who have difficulty walking due to a non-visible disability and severe mental health in the eligibility for a blue badge. There is a new online and paper application form.
You can find further information about the eligibility changes at www.surreycc.gov.uk/bluebadges
“WE ARE SURREY” 2019 SOCIAL VALUE EVENT AND RECOGNITION AWARDS
The “We are Surrey” annual social value event will be an exhibition engaging businesses and communities in making Surrey a better place to live and work.
The awards will celebrate businesses across Surrey who are making positive contributions to communities in innovative and impactful ways. You can nominate your own business or another that you feel deserves recognition. Winners will receive £100 to donate to the charity of their choice.
Winners will be announced at We Are Surrey 2019 on 13 November at Guildford Cathedral. Please register to attend this event.
UPDATED SPECIAL EDUCATIONAL NEEDS AND DISABILITY (SEND) ACTION PLAN PUBLISHED
Surrey County Council and its health partners in six clinical commissioning groups have developed an updated Special Educational Needs and Disability (SEND) action plan to help improve the school attendance of children and young people with SEND.
Visit the Surrey Local Offer web site www.surreylocaloffer.org.uk to read the updated action plan and the Surrey local area SEND action plan measures and targets.
ADULT SOCIAL CARE SOCIAL MEDIA ACCOUNTS ARE CHANGING
Adult Social Care’s Surrey Disability Network Twitter and Facebook sites are changing their name, in order to reach more people and services, and post a wider range of information. So from 7 October they will become:
@SurreyInfoPoint – Twitter
@SurreyInfoPoint – Facebook
You will still see the usual range of useful, informative, interesting and relevant content, but from 7 October, Adult Social Care’s Information and Engagement team will also be widening the range of community support, health and wellbeing services they post about, in order to share information more widely across Surrey.
This development builds on the popularity of the Surrey Information Point (SIP) branding and directory that continues to attract visitors seeking local information about care and support, almost 170,000 in the last year.
Please do follow if you can, share the information you find useful on these sites with others, as well as sharing the details of the Twitter and Facebook sites with others.
If you have any queries or suggestions for posts please contact: firstname.lastname@example.org
ROYAL SURREY COUNTY HOSPITAL NAME CHANGE
The name of Royal Surrey County Hospital NHS Foundation Trust has changed to recognise that the organisation has evolved and now delivers more than just hospital care. It will be now be known as Royal Surrey NHS Foundation Trust. The Trust started providing adult community health services for Guildford and Waverley in April 2018 and the organisation felt that it was important that its name reflected the range of services it now offers.
For further information, please visit the Royal Surrey NHS Foundation Trust website www.royalsurrey.nhs.uk
HEAR HERE DROP IN HEARING AID CLINICS AUTUMN DATES
The Diocese of Guildford has announced the schedule for their hearing aid ‘drop in’ clinics offering some basic hearing aid checks and maintenance delivered by trained volunteers, together with advice on getting the best out of hearing aids and as well as guidance on which other services and equipment are available.
Ashford Methodist Church, 3 Coleridge Road, Ashford TW15 2QR. Tuesday 11.30 am -12.30 12th November 2019 10th December 2019. Contact Jill Britton email@example.com
St Saviours Church, 205 Vicarage Road, Sunbury Upon Thames TW16 7TP. Wednesday 12.30pm -1.30pm. 6th November 2019 4th December 2019. Contact Barbie Ryder Matthews email firstname.lastname@example.org Telephone 01932 782800
GET ONLINE... Do you want to use a computer?
Why not come along and use ours. No need to book, please just drop in.
* The IT hub is open every Monday, 12-3pm.
* No care is provided but can offer guidance on navigating your way around the computers.
* Free of charge
* Printing costs 20p per sheet.
Please note there is no disabled or changing places toilet at this site due to the venue facilities.