Our regular newsletter contains news and information about various Disability issues and paper copies are distributed around Spelthorne Borough for those in the Community who do NOT have access to a computer.  Copies can be found at the Borough's Community Centres, Libraries, Sheltered Residential housing.

Copies to Volunteer groups and Special Interest Groups and Societies are also distributed via email.  If you would like a copy of the latest newsletter or if you would like news and events for your Community Group to be included in future issues, please email the web administrator. Don't forget to include your postal address if you would like a paper copy.

Some of the news items have been taken from articles in the national press and other publications and SCAN cannot be held responsible for any loss, damage or inconvenience caused as a result of any inaccuracy or error in an article that has not been independently substantiated. The inclusion of hyperlinks to these websites does not imply endorsement of any material on such web sites or any association with their operators services or products.

QUEEN ELIZABETH’S FOUNDATION FOR DISABLED PEOPLE (QEF) FILM GIVES HELP FOR DISABLED AIR TRAVELLERS
UK charity Queen Elizabeth’s Foundation for Disabled People (QEF) is addressing issues faced by wheelchair users when travelling by air, through the launch (in January 2019) of a unique film ‘Your Guide to Flying with a Disability’.

Now people thinking about flying with their powered wheelchair can see exactly what’s involved when taking a flight as the film shows every stage of the journey, from the preparation required, through check-in, security, boarding, in-flight and landing, as well as the assistance available.

QEF developed ‘Your Guide to Flying with a Disability’ with the UK Civil Aviation Authority and the airline and airport industry, with the aim of providing disabled people with the information they are missing, so they can make informed decisions and feel confident about taking a flight.

This film has been created in response to a growing need, highlighted by the numerous high-profile media stories throughout 2018 and reports that show that in 2017 there were three million requests made for assistance at UK airports. These requests are increasing at almost double the rate of general passenger growth.

QEF’s Accessible Aviation expert, Graham Race, says: “Our QEF Tryb4uFly service has already proven invaluable to many disabled people that have been anxious about taking a flight, but there has been a significant increase in demand for information. British Airways have already confirmed that they will make the film available to all customers who book wheelchair assistance.

“The film shows a complete journey by air and offers advice at each stage. It provides much needed information and assurance to the thousands of disabled people and their families who currently feel that air travel is not an option for them.”

Paul Smith, Director at the UK Civil Aviation Authority added: ‘It is a priority for the UK Civil Aviation Authority to continue to improve the accessibility of air travel. We have worked closely with UK disability charity Queen Elizabeth’s Foundation for Disabled People (QEF) who have expertise in this area, to develop an insightful and informative film.

‘Your Guide to Flying with a Disability’ is available to view via QEF’s website: www.qef.org.uk/accessibleaviation

SPELTHORNE PARASPORTS CLUB is a club for young people aged 5 years - 25year from all local Boroughs with various learning or physical disabilities.

Located in Spelthorne Leisure Centre on We open on the 1st and 3rd Saturdays of each month. Mornings 10:15am - 11:45am during Term times.

The Club was formed with the help of Spelthorne Council in 2006 and whilst the club is independent it has close ties with the council through its leisure services team.

We have various sports to try every week such as Basketball, Badminton, Boccia, Football, Short Tennis, Indoor Cricket and many others.

Cost: £4 a session (£2 for siblings) payable on the day. Every 4th session free! Come and try 1st taster session free!

The schedule of proposed activities can be found on: www.surreycommunity.info/spelthorneparasportsclub/schedule/

26 YEAR OLD’S BLUE BADGE RENEWAL DENIED BECAUSE HE CAN WALK 200 METRES – Edited from Independent March 2019
26 year old Martin was born with a chromosome deletion syndrome which caused serious learning difficulties. He has held a blue parking badge for two decades but it has now been taken away by his council after a review under the Personal Independent Payment (PIP) system because he can stand and walk 200 metres.

His mother, Julie Marlow says “Going out with Martin is like taking a toddler out. I have to hold his hand at all times because he has no awareness of the world around him. He would happily walk into the path of a car or run into the middle of the road. Anybody who met him would not question his need for a blue badge so we can park closer to our destination.”

Nottinghamshire County Council told Martin in a letter: “Your walking difficulties do not appear to be serious enough to qualify for a badge.”

Having assumed the badge renewal would be a simple form-filling exercise, she said: “The form was different this time. Martin was scored according to how well he can ‘plan and follow a journey’ and also on ‘moving around’. It’s true that Martin is physically capable of walking, and on that basis he was refused.”

She said she was now reluctant to take Martin out with her as she can no longer plan ahead for a journey. “You wouldn’t know Martin was disabled to look at him, so people assume he’s OK," she said. “Then they notice the soft toys he carries with him and he’ll maybe start making funny noises. He can be very loud and inappropriate. People stare at him and I can’t help taking it personally and getting upset. Life is hard enough without this.”

Ms Marlow, who has appealed the decision, added: “Martin makes me laugh every day and I get so much love from him.”

The Department of Transport last year pledged a revision of the blue badge scheme so that it would include people with “hidden” disabilities such as autism.

Under the proposed changes, people at “risk of harm” when undertaking a journey would qualify. But the proposals have yet to be introduced.

Marie Rowney, customer services group manager at Nottinghamshire County Council, said: “As an authority we are obliged to follow the guidelines laid out by the Department for Transport. Due to a change in the way eligibility is now assessed since Mr Pacey’s previous badge was issued, we have been unable to automatically renew his blue badge without seeking further information. We are currently reviewing the application with a view to making a decision in the coming weeks.”

GIVING ALZHEIMERS A NICKNAME – Edited from The Independent March 2019
Tom and Peggy are at home, talking about the children they adopted from overseas in the 1980s, when Tom, 64, misremembers a major detail. “We got two kids out of India...” he says. Peggy, 59, chimes in. “Philippines.” “Oh yeah, Philippines,” says Tom, a retired CIA officer. He grins wryly at his wife. “That’s Ollie talking.”

Ollie is their nickname for Alzheimer’s, the disease Tom was diagnosed with seven years ago. Ollie is a third presence in the house, one they never invited in. But since he’s here, they’re making room for him. And though it might seem counterintuitive, they are even trying to have fun with him.

That approach – giving the illness a nickname, smoothly zigging after hitting a zag – puts Tom and Peggy in a growing camp of people determined to approach dementia care differently, coming at it with a sense of openness, playfulness and even wonder.

Family members often try to nudge a loved one back towards getting facts right or remembering things correctly, but as the disease progresses this can turn their daily interactions into grim, and increasingly frustrating, battles.

Since his diagnosis, Tom and Peggy have made a point of trying to have fun together. Tom has taken up new activities such as darts and colouring books. He’d never danced before; now, he and Peggy go square-dancing. He’d never played a musical instrument, but he took up the violin. And they joined the Forgetful Friends Chorus, for people with dementia and their friends and caregivers, though he had never sung before.

Keeping things loose and flowing is something Peggy does to make her own life easier. But it also puts Tom at ease. And it makes things more fun.

This is the link for the full article in the Independent
www.independent.co.uk/news/long_reads/alzheimers-disease-living-with-dementia-changing-narrative-a8794856.html

3D PRINTING COULD GIVE A BETTER PILL TO SWALLOW – Edited from Independent February 2019
In March 2017, 13-year-old Joseph was diagnosed with juvenile arthritis. He has been having treatment at Alder Hey Children’s Hospital in Liverpool ever since. He needed the steroids – there was no getting around that – but one of the side-effects of long-term steroid use is that the body can stop producing its own cortisol.” In effect, his adrenal glands went to sleep. To replace the lost cortisol, a hormone involved in metabolism and the immune system, Joseph also started taking hydrocortisone tablets in January 2018, and he’ll keep taking them until his adrenal glands start producing cortisol again.

Hydrocortisone, however, is one of many medicines that cause problems for children. In the UK, it is available as 10 mg or 20 mg tablets, and adults generally take two or three whole 10 mg tablets a day. Guidance in the patient information leaflet states that children should take “0.4 to 0.8 mg a day, for every kilogram of your child’s weight in two or three separate doses”. It is left to parents, therefore, to hack each 10 mg tablet into pieces a few millimetres in size. Joseph takes half a tablet in the morning, another half at midday and a quarter tablet at teatime.

“I’m fine about taking the tablets,” says Joseph, now 15. “But it’s annoying having to cut them up and you really can’t easily cut it into the quarters and they tend to crumble. It’s not an accurate dose.”

This can be a serious problem, explains Matthew Peak, director of research at Alder Hey: “If they’re getting an underdose because the quarter that they’ve chopped has got half of what you expect in it, then they start to fall asleep at school in the afternoons. It really affects you. Or you might oxidise it. In breaking up the tablet, you would be doing untoward things to the active drugs. There’s all kinds of problems that can arise.”

A few years ago, Peak began to wonder whether it would be possible to offer bespoke tablets – sized to suit them and containing the exact dosage they require. He now believes it is possible, and that the answer could lie in 3D printing and in July 2018, Peak’s team at Alder Hey became the first in the world to administer 3D-printed tablets to children as part of a research trial.

Many pharmaceutical companies are exploring the idea of 3D printing, although it seems unlikely, at least in the medium term, that the technology could ever compete with traditional drug manufacturing. 3D-printed ‘polypills’ could combine multiple drugs in fixed-dose formulations, so that each drug would have a unique release profile – with some releasing upon ingestion and others taking much longer to dissolve and enter the bloodstream of the patient.

“Eventually,” says Peak, “I think we’ll see 3D printers in every pharmacy. Things are definitely moving in that direction because the technology is developing so quickly.”

This is the link for the full article in the Independent
www.independent.co.uk/news/health/pill-tablets-3d-printing-childrens-medicine-spritam-a8744076.html

HOPE FROM IMPLANT TO DELIVER DRUGS - Edited from Independent March 2019
A ground-breaking implant which allows drugs to be pumped into the brain could “massively expand” the treatment of neurological disease, strokes and cancer, scientists have said.

The valve system, which is screwed into the side of the skull, was developed by Bristol researchers as part of a landmark trial drug trial funded by Parkinson’s UK.

Trials are already under way for a system delivering potent chemotherapy drugs directly in children and adults with incurable brain tumours, minimising the damage to other areas of the brain.

Once implanted, the only visible part of the system is a small port seated just behind the ear. At each treatment session, the pump system is sterilised and screwed into the port, drugs are delivered via fine piping running over the surface of the brain to probes which route to the targeted parts.

Researchers were hoping GDNF, a chemical produced naturally in the body which has been shown to help restore nerve damage, could regenerate neurons if pumped directly into the putamen – a Brazil nut-sized structure in the midbrain affected in Parkinson’s and responsible for producing dopamine, the key neurotransmitter that is essential for coordinating movements as well as memory formation.

Forty-one participants in the trial, published in the journals Brain and the Journal of Parkinson’s Disease, were randomly allocated to receive GDNF and or a placebo infusion. For nine months each participant had their movement, speech and other traits scored in Parkinson’s tests. The second half of the trial saw all patients receive the drug for a further nine months.

Over each year sufferers are expected to see around a one point decline, but patients receiving GDNF actually saw their scores improve by around four points in the first nine months, and nine points over all. But disappointingly for those hoping GDNF is a cure, this was only marginally more than those receiving the placebo.

“We’ve shown with the Pet scans that having arrived, the drug then engages with its target, dopamine nerve endings and appears to help damaged cells regenerate or have a biological response,” said Dr Alan Whone, who led the trial at Southmeads Hospital.

“This represents some of the most compelling evidence yet that we may have a means to possibly reawaken and restore the dopamine brain cells that are gradually destroyed in Parkinson’s,” he added.

This is the link for the full article in the Independent
www.independent.co.uk/news/health/parkinsons-cancer-treatment-valve-drilled-skull-drugs-a8798266.html

NEW BENEFITS U-TURN – Edited from Sky News March 2019
It has been announced that 270,000 disabled pensioners will no longer have to undergo repeat tests to claim payments.

In a major speech to the disabled charity Scope in March, Ms Rudd announced that disabled pensioners will not have their Personal Independence Payment (PIP) awards regularly reviewed.

"Disabled pensioners have paid into our system for their whole lives and deserve the full support of the state when they need it most. This government, therefore, intends to change the landscape for disabled people in Britain: to level the terrain and smooth their path."

"The benefits system should be the ally of disabled people. It should protect them and ensure that the assistance the government provides arrives in the right place to those who need it most."

Genevieve Edwards, of the MS Society, said: "While it's good news that older disabled people will no longer have to go through unnecessary and stressful reassessments, millions of others will still be stuck in a failing system. "The fact 83% of people with MS who appeal their PIP cases win shows how bad the current assessment process is."

DRAMATIZE PIGEON PROJECT
Dramatize lease the Pavilion at Ashford recreation ground and run theatrical programmes for adults with learning disabilities.
With all of the recent negativity regarding the blue shelter in the middle of the playground attracting drug dealers, youths smoking and drinking showing anti social able behaviour, Dramatize decided to help bring back a sense of community through an array of artwork throughout the playground and park.

During the February Half Term artists from their group displayed colourful models of ‘pigeons’ in the trees around the Recreation Ground to brighten up the place.

Young giorl sitting on bench with model pigeons on the bench