Tag Archives: epilepsy

Blue Badge Gov Consultation 2018

People with hidden disabilities could enjoy new freedom with blue badge changes. Consultation expanding the Blue Badge criteria released.

People with hidden disabilities could soon have greater access to blue badges under new plans from Transport Minister Jesse Norman today (21 January 2018).

The proposals, which would herald the most significant changes since the blue badge was introduced in 1970, would help remove barriers to travel for people with conditions such as dementia and autism, allowing them better access to work, shops and amenities. This is part of the drive for greater parity between the treatment of physical and mental health conditions.

Currently, about 2.4 million disabled people in England have a blue badge, allowing them to park on roads without charge and normally without time limit. Around 75% of blue badge holders say they would go out less often if they didn’t have one.

Transport Minister Jesse Norman said:

Blue badges give people with disabilities the freedom to get jobs, see friends or go to the shops with as much ease as possible.

We want to try to extend this to people with invisible disabilities, so they can enjoy the freedom to get out and about, where and when they want.

The changes could also see a variety of healthcare professionals, who are better placed to identify if mental health causes mobility issues, carry out assessments to determine if a blue badge should be given.

Sarah Lambert, Head of Policy at the National Autistic Society, said:

The National Autistic Society welcomes this government proposal. It could mean that many more autistic people will qualify for a Blue Badge, which can be a lifeline.

There are an estimated 700,000 autistic people in the UK and whilst every person on the autism spectrum is different, for some, not being able to park in a predictable place close to a destination can cause a great deal of anxiety and put their safety at risk. Some autistic people can experience too much information from the environment around them on public transport, while other autistic people might not be aware of dangers on the road.

However, current Blue Badge rules mean that all-too-often autistic people don’t qualify. The National Autistic Society has raised this issue with government over recent years and we are pleased to see they have listened to the concerns of autistic people and their families. We hope the government will make this important change and we look forward to working with them to make sure that autistic people and their families benefit.

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Sarah’s Epilepsy Fundraising Story

Sarah Reid – is an inspiration and a member of the Bristol Epilepsy Support Group, in Bristol, England.

In spite of undergoing surgery for left temporal lobe epilepsy this year at Southmead Hospital, Bristol, Sarah has still managed to fundraise relentlessly for the five charities closest to her heart: Epilepsy Society, Young Epilepsy, Epilepsy Action, Young Carers and Mothers for Mothers.

‘Fundraising is a way of giving back,’ said Sarah. ‘Epilepsy Society and the other four charities have always been there for me when I have needed them. They have supported me in the lead up to my surgery, they have been there for me when I have been having a down day or when I have been struggling with my seizures or with employment issues.

Sarah fund raises for the #epilepsy group in Bristol, she says that…

It was rewarding giving a cheque last night  (February 6th, 2018) for over £40 to Bristol Epilepsy Support Group!

It was lovely giving 107 epilepsy information packs with laylas book epilepsy book for kid’s inside with 1st aid leaflets young epilepsy sent and young carers leaflets too. With information as well as stickers and balloons to put inside to help making the information packs exciting and educational , raising epilepsy awareness and money for epilepsy charities.

When I was at school teachers told me off for daydreaming when really I was having a seizure. I hope that raising epilepsy awareness in schools will stop what happened to me happening to anyone else.

Sarah also says..

A big thank you to staff and customers at downend co op for helping me to raise the money and to young epilepsy and young carers who kindly donated information leaflets and stickers and balloons. 

Now my next goal is to raise another £700 to send enough information packs for schools in Bristol.   Then my daughters Layla’s book and information packs will be in all South Gloucestershire schools and Bristol schools raising epilepsy awareness.  The cheque from the profit from her book will be sent to the Epilepsy Society in the next few months.

I am at Downend Co-op in Bristol, every week raising money for 7 charities close to my heart and donating Layla’s book EPILEPSY BOOK FOR KID’S to schools, epilepsy charities, to hospitals and to families who need them. 

You can buy the book on AMAZON here : https://www.amazon.co.uk/Epilepsy-Book-Kids-Layla-Reid/dp/1842890190 , or at Waterstones Bookstore in the UK here : https://www.waterstones.com/book/epilepsy-book-for-kids/layla-reid/9781842890196

Sarah continues..

Recently, I was in contact with a lady called Sarah from South Gloucestershire council who found the best was to get my daughter’s epilepsy book to schools was through the school’s nurse’s. I took all the epilepsy information packs to the kingswood hub where the school nurse’s loved them and thought they were a great way to raise epilepsy awareness and money in schools!.

Video: Dr Rami Apellian, Epilepsy Epileptologist and MD

Sam Downie interviews Dr Rami Apellian, Epilepsy Neurologist and Epileptologist.

Interview recorded at Epilepsy Awareness Day and Expo, at Disneyland Resort, 2016.

Watch the TALK from Epilepsy Awareness Day and Expo 2016

Visit his website at : www.DrRamiApelianmd.com/

July Meeting: What Took Place

WHAT TOOK PLACE AT OUR MEETING: JULY 4th, 2017

A. MEDICINES UPDATE :

Our Nurse Helen talked about Medications that are not available any longer ( a list of what was mentioned will be available here soon ) .

We also talked about how AEDs work. There’s a really good film to watch by Epilepsy Research UK, presented by Chair of Trustees, Dr Graeme Sills, who gives you a clear picture of the type of drugs that are used in epilepsy and how they work.

B. NEW 7T MRI SCANNER IN CARDIFF

We talked about a new 7T MRI at Cardiff University, that is now being used for Epilepsy and other conditions. The BBC made a film about this and we showed it in the group, you can watch it via this link:

http://www.bbc.co.uk/news/health-40488545

The world’s most detailed scan of the brain’s internal wiring has been produced by scientists at Cardiff University.

The MRI machine reveals the fibres which carry all the brain’s thought processes.

It’s been done in Cardiff, Nottingham, Cambridge and Stockport, as well as London England and London Ontario.

Doctors hope it will help increase understanding of a range of neurological disorders and could be used instead of invasive biopsies.

Fergus Walsh (BBC Journalist) volunteered for the project – not the first time his brain has been scanned, he says.

Computer games

In 2006, it was a particular honour to be scanned by the late Sir Peter Mansfield, who shared a Nobel prize for his work on developing Magnetic Resonance Imaging, one of the most important breakthroughs in medicine.

He scanned me using Nottingham University’s powerful new 7 Tesla scanner. When we looked at the crisp, high resolution images, he told me: “I’m a physicist, so don’t ask me to tell you to whether there’s anything amiss with your brain – you’d need a neurologist for that.”

I was the first UK Biobank volunteer to have their brain and other organs imaged as part of the world’s biggest scanning project.

More recently, I had my brain scanned while playing computer games, as part of research into the effects of sleep deprivation on cognition.

So my visit to the Cardiff University’s Brain Research Imaging Centre (CUBRIC) held no particular concerns.

Brain scan
Image captionDoctors hope the scans will increase understanding of neurological disorders

The scan took around 45 minutes and seemed unremarkable.

A neurologist was on hand to reassure me my brain looked normal.

My family quipped that they were happy that a brain had been found inside my thick skull.

But nothing could have prepared me for the spectacular images produced by the team at Cardiff, along with engineers from Siemens in Germany and the United States.

The scan shows fibres in my white matter called axons. These are the brain’s wiring, which carry billions of electrical signals.

Axonal density

Not only does the scan show the direction of the messaging, but also the density of the brain’s wiring.

Another volunteer to be scanned was Sian Rowlands who has multiple sclerosis.

Like me, she is used to seeing images of her brain, but found the new scan “amazing”.

Conventional scans clearly show lesions – areas of damage – in the brain of MS patients.

But this advanced scan, showing axonal density, can help explain how the lesions affect motor and cognitive pathways – which can trigger Sian’s movement problems and extreme fatigue.

Brain scan
Image captionThe scanner is one of only three in the world
Brain scan
Image captionThe scan shows fibres in the brain’s white matter, called axons

Prof Derek Jones, CUBRIC’s director, said it was like getting hold of the Hubble telescope when you’ve been using binoculars.

“The promise for researchers is that we can start to look at structure and function together for the first time,” he said.

The extraordinary images produced in Cardiff are the result of a special MRI scanner – one of only three in the world.

The scanner itself is not especially powerful, but its ability to vary its magnetic field rapidly with position means the scientists can map the wires – the axons – so thinly it would take 50 of them to match the thickness of a human hair.

The scanner is being used for research into many neurological conditions including MS, schizophrenia, dementia and epilepsy.

My thanks to Sian, Derek and all the team at CUBRIC.

Follow Fergus on Twitter.

C. BBC RADIO 5 LIVE EPILEPSY FILM

BBC Radio 5 Live have released a video – 5 things to know if you love someone with epilepsy. It is a moving story about a mum of three Rachael. All three of Rachael’s children have epilepsy and they can sometimes have up to ten seizures a day. “You never know when your child might start having seizures,” said Rachael. “If you’re able to know what a seizure looks like, it might just take that fear away from you slightly.”

Watch the film here : http://www.bbc.co.uk/programmes/p057d2r3

D. WHAT IS THE VNS ?

We talked about the benefits of the VNS ( Vagal Nerve Stimulator ) in Epilepsy. A few of the members of the group have it implanted. They talked about their own experience of it, whilst other asked questions. Our Nurse Helen explained what it did.

E. OUR NEXT MEETING

Our Next meeting takes place in September, the 1st Tuesday of the month, from 7PM. We shall have a speaker from the hospital. More details will be added here soon.

 

News: Pregnant Women ‘Unaware’ of Epilepsy Drug Risks

Updated: 27th Feb, 2013

Watch on BBC iPlayer, BBC Inside Out London : Dr Rosemary Leonard asks if GPs are failing to warn their pregnant patients about the risks of one of the UK’s most widely-used epileptic drugs.

Link to Watch BBC iPlayer : http://www.bbc.co.uk/iplayer/episode/b01qzfrp/Inside_Out_London_25_02_2013/

[hr]

From BBC London NEWS : http://www.bbc.co.uk/news/uk-england-london-21523434
By Zack Adesina – BBC Inside Out, London

Concern is growing that mothers-to-be are not aware enough of the dangers of an epilepsy drug known to cause severe abnormalities in foetuses.

Sodium valproate has long been known to increase babies’ risk of cleft palate and spina bifida.

Now new research has revealed some babies exposed to the drug also have mental problems and a survey found 25% of mothers were unaware of the risks.

The drug’s manufacturers insist they have always warned of the dangers.

Sodium valproate is one of the most effective drugs for controlling epileptic seizures.

But it presents risks if taken by expectant mothers, with an increased chance of physical deformities.

Dr Peter Turnpenny, consultant clinical geneticist at Royal Devon and Exeter Hospital, said: “We know the risk of physical birth defect is certainly 10%.

“The increased risk of spina bifida is 20 times higher than in the background population.

“I am still seeing young children – sometimes babies – who clearly appear to be damaged by exposure to these drugs.

Birth defects

As a GP with 24 years of experience I believe the warnings on this leaflet are inadequate.

Dr Rosemary Leonard

“Many of them have residual problems well into their teens and early adult life and some of them will undoubtedly not be able to lead independent lives.”

A new study has found 12% of babies exposed to the drug in the womb could have mental disorders.

Speaking for the first time, its author, neuropsychologist Professor Gus Baker, said: “We followed up 600 from birth to six years of age.

“We found out that children exposed to sodium valproate were at a greater risk of intellectual delay, memory problems, language difficulties and behavioural problems.”

The new report concludes children born to mothers on sodium valproate are six times more likely to be diagnosed with disorders such as autism.

Emma Murphy with one of her daughtersEmma Murphy, who has epilepsy, has given birth to five children with health problems she believes were caused by sodium valproate.

Mrs Murphy feels she was never warned about the dangers by either her doctors or the drugs company.

She told the BBC’s Inside Out London: “Symptoms my children experience are autism, cerebral palsy, deafness, incontinence, mobility issues and constant aching in their body.

“It wasn’t until I was through my fourth pregnancy that I found out about the effects of Epilim (sodium valproate).

Emma Murphy, who has epilepsy, says her children have a range of disabilities

“As a mum you do have the guilt trip.”

Mrs Murphy’s experience is not unusual. Charities working in the sector estimate that globally thousands of children may have been harmed.

National guidelines insist all women of child-bearing age with epilepsy should be informed about the risks the drug may have on an unborn baby.

But 20 years after concerns were raised about the drug, a new study has revealed some GPs are failing to alert patients.

Reduced IQ points

Nicole Crosby-McKenna, of Epilepsy Action, said: “We did a survey of women with epilepsy and asked them about the information and counselling they receive about pregnancy.

“Over 20% of those women hadn’t received any information in connection with pregnancy.”

Professor Matthew Walker, head of the epilepsy department at the National Hospital for Neurology and Neurosurgery, said: “The evidence has become stronger – foetal exposure to valproate knocks somewhere between seven to 10 IQ points off the child.

“I’m finding a lot of women are not being warned about the potential risks of valproate.”

Sanofi, the company that markets the drug under the brand name Epilim, has always denied liability for any birth defects.

But campaigners claim the company’s warnings have always lagged behind research.

Janet Williams, of pressure group In Fact, said: “There were a lot of research papers out in the 80s and 90s when they said there was such a thing as valproate syndrome.

[We] regularly review and make changes to core safety information in the light of emerging data that could have an impact on the safety profile of valproate” – Sanofi spokesmanPharmaceutical company

“But it wasn’t until 2005 that they actually changed the leaflet.”

A spokesman for Sanofi said: “[We] regularly review and make changes to core safety information in the light of emerging data that could have an impact on the safety profile of valproate.

“The product information made available to doctors by Sanofi in relation to sodium valproate has at all times since the product was first marketed in the early 1970s contained a warning of its teratogenic [abnormality-causing] potential.”

The current leaflet provided with another brand of the drug, made by Wockhardt, clearly highlights risks to any unborn child including spina bifida, congenital abnormalities and delayed development.

But GP and broadcaster Rosemary Leonard said: “As a GP with 24 years of experience I believe the warnings on this leaflet are inadequate.

“There is no specific mention of long term learning difficulties, of low verbal IQ or autistic spectrum disorders.

“Reading this, a potential mother-to-be may well not realise the severe and extensive potential side effects that this drug can have.”

A spokeswoman for Wockhardt said: “We consider that in the leaflet the patients are adequately warned.

“The patient information leaflet for sodium valproate has been approved by the medicines and healthcare products regulatory agency.”

Health experts say women with epilepsy who are pregnant should not stop their medication but consult their GP or epilepsy specialist.

See more on this on Inside Out on Monday 25 February on BBC1 at 19:30 GMT.

Event: Epilepsy Action in Bristol – Treatment Options – 16th Feb, 2013

Epilepsy Action  - Logo

For More Information About This Event, Please Visit This Link: http://www.epilepsy.org.uk/involved/local-events/treatment-options

When ? : 16 February, 2013
Time of Event: 12pm to 4pm
Where ? : The Watershed, 1 Canons Road, Bristol, BS1
Cost of Event: £6 / £4 (cons)

[box]CLICK HERE TO BOOK YOUR TICKET FOR THIS EVENT IN BRISTOL[/box]

This series of half day events across England and in Wales will give information to people with epilepsy. They will be about the options for treatment beyond medication in difficult to control epilepsy.

People attending will have the opportunity

  • To gain knowledge on epilepsy and medication to control seizures
  • To be aware of treatment options beyond medication
  • To be aware of surgery as a treatment for people with epilepsy
  • To gain knowledge on the social aspects of living with epilepsy and the support available from Epilepsy Action

Cyberonics, manufacturers of the vagus nerve stimulation system (VNS) have generously sponsored these events.

The sessions will cover

  • Epilepsy and medication to control seizures
  • Surgery for epilepsy
  • Vagusnerve stimulation (VNS)
  • Ketogenic diet as a treatment for children with epilepsy
  • Complementary therapies
  • Personal experience of using VNS

Information about epilepsy and the work of Epilepsy Action will also be included

Each event will have presentations from medical staff and Epilepsy Action staff. Volunteers will be present providing information for people to take away with them.