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Seizure death inspires awareness campaign

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Epilepsy Action UK receives £159,300 from the Big Lottery Fund: Llinos Williams raises awareness for the condition which killed her brother at the age of 18

Epilepsy Action UK receives £159,300 from the Big Lottery Fund:
Llinos Williams raises awareness for the condition which killed her
brother at the age of 18

THE TRAGIC death of a teenager from an epileptic seizure sparked his sister to support an awareness-raising campaign for his condition.

Llinos Williams spent years trying to come to terms with the tragedy of her brother’s untimely death before she too was diagnosed with the same condition as him.

She reports that her diagnosis made her even more determined to support Epilepsy Action Cymru, who recently welcomed the news that they were chosen to receive £159,300 from the Big Lottery Fund.

The grant money will be used to improve access to information about epilepsy at different stages of care.

30-year-old Llinos Williams from Pwllheli was diagnosed with epilepsy following her having a seizure in her workplace.

The realisation that she’d been diagnosed with such a dangerous condition, especially one which had devastated her family the way it had, shocked her due to the fact that she had absolutely no idea that she was suffering from it.

Llinos said: “One of my brothers, Dylan, passed away after having a seizure when he was just 18-years-old in 2007. It was such a huge shock to the family as even though we knew he’d had epilepsy for about ten years, we didn’t know that people could die from it.

“I was diagnosed with epilepsy in 2012 after I’d had a seizure in my work place. After visiting my GP I later found out that it had been triggered by an infection.

“I was really scared because I was just thinking about what had happened to my brother, and to add to everything else as well I was scared for my other brother, Carwyn, who had been diagnosed in 2010 too.

“I had no idea that I had epilepsy for a long time, I had no problems at all when I was a teenager but that first seizure turned everything around.”

However, with the support of Epilepsy Action Cymru, Llinos and her family have managed to overcome many of the challenges that they face and are now championing awareness of the condition and helping others to learn more about it.

“Thankfully I’m really healthy now. I was lucky enough to find out about Epilepsy Action Cymru shortly after I was diagnosed and they have been so helpful with getting not just me, but my family to come to terms with my condition.

“Through them I’ve become a volunteer to raise awareness of the condition and give people advice on how to manage it, and have even spoken at conferences about my experience.

“It’s fantastic that the Big Lottery Fund has awarded this money to Epilepsy Action Cymru. The work that they do to help people like me is brilliant, and it’s important to be able to provide that support to as many people as possible.”

Ann Sivapathan, Wales Manager at Epilepsy Action Cymru, said: “We are delighted to receive this grant from the Big Lottery Fund.

“The money will allow us to provide a vital service to the 8,000 people living with epilepsy in Wales in the language they feel most comfortable with.

“We will be able to give accessible support and information, provide a voice for people with epilepsy on important healthcare issues and limit the social isolation felt by some people with epilepsy in this area.

“We believe this role will be a real lifeline for many people living with epilepsy in Wales.”

There are 13 other projects across Wales which have been granted a share of the £3,881,083 ‘People and Places’ funding from the Big Lottery Fund.

Leonard Charity Disability will be using £498,960 to expand their ‘Can Do’ programme from Cardiff, Newport, Swansea and Wrexham into more of Wales.

It is hoped that this expansion will offer 1,200 more young disabled people volunteering opportunities on community projects that will enhance their life skills and levels of independence, and ultimately break down social barriers that they face in day-to-day life.

Michelle Impanni, Senior Programme Coordinator for Can Do in Wales, said “We are delighted we can now develop the programme to reach even more young people across Wales to benefit from this volunteering programme.

“Can Do aims to support and equip our participants with the skills and confidence they need to live their lives fully and participate in society.”

Time to Change Wales, which is a partnership between Mind Cymru, Gofal and Hafal, have managed to secure funding from the Big Lottery Fund to deliver a brand new anti-stigma campaign for children and young people.

Antony Metcalfe, Programme Manager of Time to Change Wales, stated: “We are delighted to have secured funding from the Big Lottery Fund to deliver a brand new anti-stigma campaign for children and young people.

“We are really pleased to have the support of schools and teaching professionals across Wales and look forward to working with them to improve the lives of young people.

“It is crucial that action to improve mental health and reduce discrimination starts at a young age and we believe that this campaign will play an important part in this agenda.”

The People and Places programme seeks to award grants of between £5,001 and £1 million for a broad range of different community projects.

Highlighting the importance of this, Rona Aldrich, Wales Committee Member for the Big Lottery Fund, said: “Programmes like People and Places are making a difference to the lives of so many people in communities across Wales.

“It delivers on our promise to use National Lottery funding to regenerate and revitalise communities, tackle disadvantage head on and leave a lasting legacy.”

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Community

Ceredigion lifesavers go the extra mile during lockdown

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Loyal blood donors in Ceredigion have responded to a request from the Welsh
Blood Service to ‘donate differently’ by rolling up their sleeves to make a
lifesaving donation at one of the Service’s new regional hubs.

Across Wales, of the 6,808 individuals that visited a Welsh Blood Service donation
session in May 63% of donors attended a clinic that was not their usual donation
venue.

In Ceredigion, 293 donors came forward to give blood in May, with 34 attending a
donation session for the very first time.

Following a series of Covid-19 related venue cancellations and social distancing
restrictions, the Welsh Blood Service was unable to host donation sessions at the thirty
community venues it would typically visit across Wales each week.

The Service introduced a new collections schedule at the beginning of April which saw
collections taken from five regional donation hubs at different locations in Wales each
week. Donors were asked to travel to donate at their nearest hub.

Alan Prosser, Director of the Welsh Blood Service, said: “When it became clear we
couldn’t continue with business as usual, we knew we’d have to ask donors to donate
differently. Our regional donation hubs have replaced our usual local collections
programme and the response from donors has been remarkable.

“98.3% of the appointments we’ve made available since lockdown have been taken
and many of these appointments have been taken by donors who have been prepared
to go even further out of their way than they usually would just to make a potentially
lifesaving donation.”

The Service has also observed a sharp rise in the number of new donors coming
forward to donate.

Mr Prosser continued: “In May 2019, around 11% of those that attended our donation
sessions were new donors. This May, around 19% of our attendance has been people
who had never given before.

“We’ve also see a surge in the number of donors who haven’t given in years returning
to our sessions to help us boost stocks. It’s been amazing and we’re hugely grateful.”

Blood stocks in Wales have remained healthy throughout the pandemic as the reduced
collections activity has mirrored a reduction in the volume of blood used by hospitals.
However, the Service is urging donors to continue to attend their local sessions as and
when lockdown restrictions are lifted.

“Blood stocks are currently very healthy thanks to the commitment of new and existing
donors but we need people to keep giving blood to ensure we can continue to meet
hospital demand in the coming months. Travel to donate is considered essential travel
and anyone who is fit, well and eligible to donate can book an appointment through the
welshblood.org.uk website.”

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Community

Porth Cymorth Cynnar supporting residents in Ceredigion

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During this challenging period, Porth Cymorth Cynnar has established a virtual platform to ensure that we are able to keep in touch with vulnerable residents across Ceredigion.

Due to the restrictions introduced to safeguard our communities against COVID-19, many residents are not able to access their usual provision or support such as parent groups or GP Referral Exercise Classes. Instead, we are ensuring that all residents whom are known to our services, and others, are kept in touch with, through regular welfare calls, should they wish.

Around 2000 residents from young people to families to carers, who may require or benefit from regular contact whilst their service is not operating in its usual form, will receive communication from our staff.

To date, almost 2000 welfare calls have been made, and have been well received by people across Ceredigion. Residents have said that it is great that someone is keeping in touch with them, to give them an opportunity to have a weekly phone call and someone to talk to.

Mrs Jones* (name changed for anonymity) who is 92 and lives alone, is used to receiving regular visits from Ceredigion’s mobile library was identified as benefiting from a weekly phone call, to check how she was doing, now that her usual library service would not be visiting for a while. Porth Cymorth Cynnar aimed to get in touch with Mrs Jones, but did not have a contact number. After tracking down a contact number through the local directory, a member of the Porth y Gymuned team was able to make contact. Luckily Mrs Jones has the support of family and neighbours to collect groceries, but nonetheless was extremely grateful to have someone to talk to, and to check that she is OK. A weekly phone check in has been organised with Mrs Jones, to ensure that she is doing well and to organise if she is in need of anything.

If you, or anyone you know would benefit from the Keeping in Touch Service, please get in touch with our Customer Services team on 01545 570881 or clic@ceredigion.gov.uk who will triage your query to Porth Cymorth Cynnar.

Porth Cymorth Cynnar are also regularly updating resource lists which are available on the Ceredigion County Council website here: http://www.ceredigion.gov.uk/coronavirus

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Community

The latest on plastic free Ceredigion

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At its meeting held on 17 March, the Council’s Cabinet received an activity update from the Plastic Free Ceredigion Task and Finish Group, which was set up after full Council approved a motion on 22 February 2018.

Full Council approved the ‘Plastic Free campaigns throughout the County, including Plastic Free Aberporth and Plastic Free Aberystwyth’ motion to ensure that the Council helps to reduce the amount of single use plastics used in our day to day operations.

The motion involved a number of factors including; reducing single-use plastics within Council facilities and offices and encouraging local businesses, organisations, schools and communities to move away from single-use plastics and use sustainable alternatives. Promoting the use of sustainable alternatives to single-use plastics at all Council supported events, supporting beach cleans and any other events which aim to raise awareness of the issues of single-use plastics.

Since 22 February 2018, the Council have removed 5 single-use plastic that were used across the local authority, implemented projects in conjunction with NRW with local primary schools, worked closely with communities throughout Ceredigion and commenced the provision of Water bottle re-fills on request to all visitors to our public facing buildings.

In January 2020, the Schools Service were successful in bidding for funding from the Circular Economy Capital Fund, which allows for the purchasing of milk dispensers which will remove the need for the provision of plastic milk bottles and straws by 1,979 pupils at Foundation and Key Stage 2. This is equivalent to a reduction of 376,010 plastic milk bottles per school year.

Councillor Alun Williams, Member Champion for Sustainability said, “These are initiatives which, together, make a real difference to the amount of single-use plastics going into the waste stream from Council activities. Whilst it’s important that everyone seeks to minimise their use of single-use plastics, it’s particularly important that large organisations like councils take these kinds of actions because they can have a wider effect which, in turn, can lead to industry changing to more sustainable practices. Ceredigion Council is trying to lead the way in showing what’s possible within an organisation.”

This supports one of the Council’s corporate priority of Promoting Environmental and Community Resilience.

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