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Appeal after tragic epilepsy death

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Jen Morris: With Michael, who tragically died following a seizure

Jen Morris: With Michael, who tragically died following a seizure

AN AMMAN VALLEY woman is appealing to others affected by epilepsy to monitor their seizures in a bid to protect their health and wellbeing, following the tragic death of her brother aged just 47.

Jen Morris, from Glanamman, lost her brother Michael in January after he suffered a fatal seizure at his home, despite being fit and healthy.

Michael was diagnosed with epilepsy when he was just 11 years old, but had managed his condition well into adult life and was “totally independent,” Jen said.

She added: “By the time Michael became an adult he hadn’t had a seizure in many years. At one point his doctor even suggested that he might be able to come off the medication, but he decided to keep on it as he was going through a very difficult time in his life.

“We were worried that he would end up having a seizure because of the stress he was under. He came home from work one day and he was due to meet his partner to have dinner, but he never showed up. Unfortunately he was found dead on the floor at home.

“Michael was self-managing his condition and he was totally independent – he was a partner in an estate agency – and he didn’t need anyone checking up on him. He was fit and healthy and was playing football the night before he died.

“The coroner phoned us the next day to say what the cause of death was. I just don’t understand how there was never any warning about it – it came totally out of the blue.

“I’m desperately trying to raise awareness so that people know more about epilepsy, the risks, and the steps that can be taken to reduce the chances of something like this happening.”

Jen’s appeal comes during Epilepsy Awareness Month, which has seen her helping to raise awareness of the Sudden Unexpected Death in Epilepsy (SUDEP) Action charity, which cares for the bereaved and works with families and professionals to help save lives.

A useful free app to help people self-manage their condition has been developed by a collaborative in south east England, including Plymouth University; Cornwall Foundation NHS Trust; Royal Cornwall Hospital and SUDEP Action, and is available to download at https://www.sudep. org/epilepsy-self-monitor.

Hywel Dda University Health Board is also doing its bit to help people with epilepsy manage their condition at home by appointing a specialist Sapphire Nurse, Claire Larkin, on a permanent basis.

Claire runs supportive clinics across the health board for people with epilepsy, and provides home visits, care plans and new ways of working to keep people independent at home. She has recently started running clinics in Aberaeron, Tenby, Prince Philip Hospital in Llanelli and Glangwili General Hospital in Carmarthen, where she works alongside a neurologist.

Kathryn Davies, Executive Director of Commissioning, Therapies and Health Science at Hywel Dda University Health Board, added: “Specialist nurses are such an important part of epilepsy care and Claire’s role is proving to be a huge support and help to people with epilepsy across the area.

“This enables the health board to improve our pathway of care for people with epilepsy, and provide more specialist care locally.”

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Health

Those eligible for the Spring Covid-19 booster should get jabbed by end of June

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ALL those eligible for the Spring Covid-19 booster are being urged to take up their offer of the vaccine before the end of next month.

A deadline of 30 June has been introduced to ensure all those eligible for the spring booster will have a long-enough interval between this and the autumn 2022 booster, if they are also eligible.

An announcement by the Joint Committee on Vaccination and Immunisation (JCVI) about which groups will be eligible for the autumn booster is due to be published shortly.

The JCVI has advised that people over-75, older care home residents and all those aged 12 years and over who are immunosuppressed are eligible for the spring booster.

Those who are 75 on or before 30 June, can get their booster at any point up to the deadline.

Health Minister Eluned Morgan said: “It is important we continue our very high take up levels of the vaccine to help protect us against the risk of serious illness from Covid-19. I would urge everyone who is offered a spring booster vaccination takes up the invitation.”

If someone eligible for a spring booster has had a Covid infection recently, they will need to wait 28 days from the date they tested positive before they can be vaccinated. They will still be able to get vaccinated after 30 June as part of this campaign if they have to postpone their appointment.

All those eligible for spring boosters will be invited by their health board or GP.

It is not too late for anyone who needs a primary dose (first, second or third) to be vaccinated.

Please check for local arrangements.

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Health

Young people in Wales being failed when moving from child to adult mental health services

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MENTAL HEALTH SERVICES are failing young people when they move from child to adult services, says a mental health charity.

Mind Cymru is calling for Welsh Government to make urgent changes to improve the system.

Nia Evans, Children and Young People Manager at Mind Cymru, said: “Young people have told us that their needs, thoughts, and feelings about moving to adult services are often unheard, or ignored.

“Welsh Government must support Local Health Boards to make sure this doesn’t happen, change the way services are run and make sure our young people are being heard and properly cared for.”

Mind Cymru has published a report, in ate the result of interviews with young people about their experiences of moving from Specialist Child and Adolescent Mental Health Services – (SCAMHS) to AMHS.

They highlighted five key areas where services are failing young people:
– Poor information offered to young people, particularly on their rights
– Inconsistent use and follow through of care and treatment plans
– High thresholds for SCAMHS and AMHS referrals to be accepted
– Feeling abandoned / cut off from SCAMHS
– Age still dominates decision making process for moving from SCAMHS to AMHS

Nia Evans said: “Any one of these issues could make the process of moving from children’s services to adult services difficult for our young people. But often, more than one is happening at any one time.”

“Our young people have a right to care and support from a mental health system that has been put in place to help them recover. Action must be taken immediately to make sure support systems are robust and doing the job they were designed to do.”

Mind Cymru is asking people to email their Member of the Senedd (MS) and amplify the voices of these young people whose experiences are often unheard, and use the #SortTheSwitch hashtag on social media.

The full report is available here, including what a good move from SCAMHS to AMHS would look like for young people, and where the current system could improve.

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Business

Average UK price of diesel hits record of more than £1.80 a litre

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LESS than two months after Chancellor Rishi Sunak announced a 5p a litre cut on the average price of fuel – diesel prices have reached a record high price of 180.29p a litre.
The previous high of 179.90p was recorded on March 23rd 2022 – the day of the Spring Statement from Sunak.

In recent weeks, the UK government has tried to move away from its reliance on importing Russian oil, following President Putin’s invasion of Ukraine.

Worryingly for drivers of petrol cars, the price per litre is fast approaching the record levels of 167.3p per litre set on March 22nd.

This latest price rise adds another challenge to UK households, as the cost of living crisis continues to impact families across the country.

RAC fuel spokesperson Simon Williams said: “Sadly, despite the Chancellor’s 5p a litre duty cut the average price of a litre of diesel has hit a new record high at 180.29p.”

“Efforts to move away from importing Russian diesel have led to a tightening of supply and pushed up the price retailers pay for diesel.”

“While the wholesale price has eased in the last few days this is likely to be temporary, especially if the EU agrees to ban imports of Russian oil.”

“Unfortunately, drivers with diesel vehicles need to brace themselves for yet more pain at the pumps. Had Mr Sunak reduced VAT to 15% as we call on him to do instead of cutting duty by 5p, drivers of diesel vehicles would be around 2p a litre better off, or £1 for every full tank.”

“As it is, drivers are still paying 27p VAT on petrol and 29p on diesel, which is just the same as before the Spring Statement.”

“The average price of petrol is also on the rise having gone up nearly 3p a litre since the start of the month to 166.65p which means it’s less than a penny away from the all-time high of 167.30p set on 22 March.”

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