“People can sympathise but they can’t empathise”: Peer support group praised for combating isolation in young stroke survivors
A UK-wide charity has made young people feel validated through its peer support group aimed at tackling loneliness in stroke survivors.
Different Strokes is an organisation that connects young people across the country, including Yorkshire, through their shared experiences.
Being run by young stroke survivors for young stroke survivors, the charity set up its own peer-support network, Befrienders, in 2020 after finding a lot of its members felt alone in their journey.
Marketing manager of Different Strokes, Lauren Hartney, said: “A lot of young people have come to us with similar experiences of feeling isolated after their stroke. Many young people end up on wards which are full of older people, and it can be hard not to know anyone else your age who’s been through it.
“We saw this as a huge gap in support available for young people, so we set up the Befriending service to help overcome this.”
The service currently has four volunteers that offer support to other stroke survivors in a range of ways from answering questions and concerns to just having a friendly chat.
The conversations can happen over the phone, text or video call and can be as often or as little as the young person wants.
Befriender and occupational health administrator, Ailie Mess, 26, from Aberdeen, said: “As a survivor, I had a lot of support from my family and friends, but nobody had been through it.
“A lot of young people say, ‘I feel like the only young person who’s had a stroke’, so I wanted to give back to the charity and show young people they’re not alone.”
Some people who come to the charity might have read stories that have resonated with them so request particular volunteers, whilst other Befrienders are matched based on experiences and interests.
The matching process is undertaken by the Different Strokes family support officer, Genise Turnbull, who works closely with the group to ensure everything runs smoothly and is available to answer any questions should the volunteers need extra advice.
Volunteer and purchasing manager, Daniel Payne, 28, from Berkshire, said: “My fiancé works on a stroke ward and whilst she’s been amazing, it’s just not the same as talking to someone who’s also been through it. People can sympathise but they can’t empathise.
“I think it’s great being able to talk to someone who’s a similar age as it’s not just about both having had a stroke, it’s about that generational gap.
“Someone who’s older is at a very different stage in their life than someone who is in their 20s and 30s.”
The impact of the generational divide between older and younger stroke survivors is a sentiment shared by Ms Mess, who was just 21 when she had her stroke while on holiday in Iceland.
She said: “Although the matching is about age, it’s not just about matching people for the numbers.
“For me, I had my stroke when I was 21 so I was just starting out in my career having never worked full-time before. People who’ve had a stroke at 40 are still young, but they’ve already had a lot of the experiences that young people haven’t yet.”
The service is available to stroke survivors aged from 16 to 25 with many of the participants praising the validation the scheme has given them.
But the scheme has also been beneficial for the volunteers with Mr Payne, who had his stroke aged 23, enjoying being able to see the progress people make.
Mr Payne said: “It’s great seeing gradual improvements in people. It might start off with them being quite shy, but slowly people open to you and having both had a stroke, it gives you a way into a conversation.
“I can talk to people once who just need a question answered, but others I speak to on a longer-term basis where we just catch-up on general life, but from a stroke perspective, which is so beneficial.”
Although the pair are in a good position in their recovery, the charity recognises that every young person’s stroke journey can be very different.
Ms Hartney said: “Recovery isn’t linear and Different Strokes likes to keep its relationship to those we support open-ended.
“Acceptance is a life-long pursuit and whilst some will hit the different steps of their recovery and move on from the service, some will also come back and that’s absolutely fine too.”
Although everyone’s stroke experience is different, the Befrienders find that recurring points come up during their conversations with young stroke survivors.
The most common is the fatigue that many can face after their stroke as well as anxiety, navigating the dating world and feeling isolated.
Ms Mess said: “The fatigue is probably the most misunderstood and underestimated symptom as it’s invisible.
“I’ve found that other people might say to me that I can’t be tired as I’m only young, but they don’t realise I’m a stroke survivor.”
The volunteers hope by sharing their experiences, it will help other young people on their journey to recovery, and enable them to open-up about how they’re feeling.
Although it can be difficult to relive the experience of having a stroke, volunteers like Ms Mess believe that the positives outweigh this.
Ms Mess said: “Sometimes it can be hard if it’s a very similar story as it can bring up memories, but the good really does outweigh the bad and it can be so interesting and informative hearing about other people’s experiences.
“Stroke recovery can feel like going through the five stages of grief, and I wouldn’t have volunteered if I wasn’t ready. For me, it’s been a really cathartic experience and I’m so glad that I got involved.”
To find out more about the Befriending service visit the website hereFind out more about Different Strokes here
Sheffield allotments are “un-walkable, unfriendly, and inaccessible”
A resident in Sheffield has claimed that there is currently only one accessible allotment in the city for disabled people.
Norma Smith, 67, claims Burncross allotments is the only site that she would be able to use, as she is disabled.
Ms Smith regularly attends physiotherapy for fibromyalgia and arthritis, claiming it is up to Sheffield City Council to change the accessibility of allotments in the city.
She said: “Nearly all of the allotments in the city are unwalkable and inaccessible for me to get to.
“I have to get my husband to drive me to the closest possible spot to the entrance as I am unable to walk very far on uneven and dangerous paths.
“Another main issue is that most of the people who deal with the allocation of allotments are unfriendly; I am seventh on the list for an allotment but I see spare ones getting overgrown every time I go.”
Sheffield City Council state they manage over 3,000 allotment plots on over 70 sites, but with only “some” designed for disabled people.
They also say they can “create accessible plots at some sites when needed.”
Ms Smith stated the problems occurring in allotments in Sheffield include inaccessible parking, limited car space, lack of wheelchair ramps, unsafe roads and damaged paths.
On top of the existing physical issues of the sites, Sheffield City Council charges three times more for hiring an allotment than neighbouring committees such as Doncaster.
To use an allotment for the year, Sheffield charges from £80 to £100, whereas Doncaster charges around just £20.
Ms Smith claims the allotment in Hag Hill, Rivelin, has a side road that could be used, with many spare allotments going to waste as it is inaccessible for gardeners like her.
Allotments like Endcliffe Student Village are physically accessible, but are privately owned by the University of Sheffield and therefore unavailable for the public to use.
Ways to make allotments more accessible include raised beds, wheelchair friendly tables, and more seating around the site.
Sheffield City Council have been contacted for comment.
“I could have died at home”: Young stroke survivor supports Yorkshire-backed campaign after migraine misdiagnosis
A teacher has voiced her support for a health campaign backed by Yorkshire charities after being sent home by doctors despite suffering a “life-threatening” stroke.
In August 2021, Manchester teacher, Lili Vachon, 27, thought her contact lens had slipped after her vision suddenly became blurred.
Despite taking out her contacts, her eyesight didn’t improve and she knew that something was wrong.
Ms Vachon said: “I just remember everything going sideways, I was trying to speak but nothing was making sense. Luckily my housemate was in and she’s a nurse, so I had no choice but to crawl across the corridor to reach her.”
The pair didn’t even consider it was a stroke, so rang 111 and an ambulance was dispatched. But after waiting in A&E for hours and receiving no tests, she was sent home with a migraine.
Ms Vachon, from Lancashire, said: “I could barely speak and my vision wasn’t right, but the doctor just said it was a migraine and sent me on my way.
“Looking back now it was quite a traumatic experience and I can’t believe they sent me home in such an unsafe state.”
After her symptoms didn’t improve, Ms Vachon was sent for an MRI scan as an outpatient to determine the cause of her collapse.
It wasn’t until two weeks later that Ms Vachon got her stroke diagnosis via a phone call.
Ms Vachon said: “I was on my own and just broke down in tears when I got the call. I always thought that strokes were rare and only happened to people in their 70s, so it was such a shock.
“I was also really angry just knowing if the clot hadn’t passed, I could have died at home.”
Ms Vachon feels she was also let down after her diagnosis. It took until February 2022 before she had an appointment with a stroke consultant. During that time, she received no help with speech or physiotherapy and the community stroke nurse only phoned her once.
Ms Vachon said: “I told them how badly I was struggling and they said they’d refer me for some counselling, but they never did. One of the community nurses asked me if I could feed and bathe myself, which I could, so they discharged me.
“The GPs and the consultants spent more time arguing over whose responsibility it was to make the referrals, when I didn’t care who did it, I just wanted some support.”
Ms Vachon has since been diagnosed with PFO, which is a hole in the heart that hasn’t closed naturally at birth and can make people susceptible to strokes. It is treated with an operation where a device is fitted to close the hole meaning people don’t have to be on blood thinners for the rest of their life.
Usually it’s an easy fix, but for Ms Vachon the operation didn’t go to plan and was abandoned halfway through when they realised the hole in her heart was bigger than initially thought due to a birth defect.
She said: “I was so stressed before the operation, but I kept thinking at least it can be fixed and I can finally get my life back.
“When it was stopped, I really struggled to come to terms with it as I knew it meant being put back on that waiting list.”
The waiting list feels never-ending and Ms Vachon expects to be on it for at least three years as her consultant only works one day a month.
The experience itself was difficult for her to deal with, but the waiting has put her life on hold for the foreseeable future, which has made it harder to stay positive.
The teacher at St Agnes school said: “Having a stroke is awful as a young person. It’s hard to think that people can look at you and think you look fine when in reality you’re struggling with everything from fatigue to cognitive difficulties.
“I went into that operation feeling so positive, but now my life is on pause and so much of my 20s has been wasted. Recovery is a postcode lottery and I can feel so lonely.”
Since her diagnosis, Ms Vachon has received great support from the charity Different Strokes where she’s found comfort in speaking to other young people who have similar experiences to her.
She said: “It’s not just helped me, but it’s helped my mum as well to understand a bit more about my symptoms and find positivity in hearing other people’s stories and knowing you’re not alone.
“The Facebook group at Different Strokes has been amazing and the community always makes you feel supported. There’s never a question that’s too silly to ask.”
Ms Vachon has also recently backed a campaign supported by Yorkshire charities to raise awareness for neurological conditions.
The Neurological Alliance runs a ‘Back the 1 in 6 campaign’ aimed at getting better treatment for those who have experienced conditions from strokes to MS. They are particularly eager to highlight the lack of mental health support offered to those living with such conditions.
The organisation is supported by Yorkshire charities including Neuro Key, who support people in North Yorkshire, and the Yorkshire and Humberside Association of Neurological Organisations (YHANO), which is a regional network of neurological organisations across Yorkshire providing a forum to share collective experiences.
Service development manager at YHANO, Sal Hastings, said: “With 1 in 6 people estimated to have a neurological condition it is vital that these voices are heard, we are much louder together than we are apart.
“Whilst each neurological condition will have differences, there are many similarities people will face. These can include; access to treatments, diagnosis, timely health and social care, equipment and adaptations.
“These are all areas which impact people with MND but also someone who has MS, Parkinson’s or a Stroke.”
The importance of raising awareness for neurological conditions like strokes across Yorkshire is echoed by Neuro Key, which has volunteers across North Yorkshire on hand to help care for those living with neurological conditions.
Head of operations, Jo Cole, said: “There are over 320 neurological conditions and on occasions people have more than one. Services are extremely fragmented now and people struggle in rural communities to find out the what, where and how they can have support or access the services they need.
“We deliver peer support across North Yorkshire to reduce the isolation people can feel when diagnosed and access a friendly face to share their experiences and feel comfortable
in how they are managing as there’s a chronic need for more understanding in public services about how people can manage their lives.”
The 1 in 6 campaign was based on a survey run from 2021 to 2022, which accounted for 8,500 people’s experiences. The group wants more government action to address the problems people face when diagnosed with a neurological condition like a stroke.
Ms Vachon said: “At least 1 in 6 people in the community, including in Sheffield, will have a neurological condition. It’s so important for people to take a joined-up approach to these services so that as many people as possible can get the support they need.
“So many people are dismissed and despite losing so much of myself, not everyone will be as lucky as I’ve been not to have any physical disabilities. I especially fear for those who can’t advocate for themselves.”
To find out more about Different Strokes visit the website here
Sign the ‘Back the 1 in 6’ petition here
Young stroke victims face “shocking” average ambulance wait of more than five times the NHS target
Young stroke victims face a “shocking” wait of more than 90 minutes for an ambulance.
Georgia Hanson, 20, suffered a stroke in Pontefract when she was 19.
She said: “It is shocking to hear that waiting times for an ambulance for someone suffering a suspected stroke is 90 minutes - it is however, very believable.
“If an ambulance can get to someone suffering a stroke quickly and get them to hospital, then it gives them the best chance possible of making a good recovery.
“It is sad and scary to see that this simply isn’t happening anymore, and as a stroke survivor it is even more concerning.”
The average emergency response time for category two issues in England has more than tripled from just shy of 28 minutes, to more than 92 minutes, according to Nuffield Trust Data, recorded between December 2020 and December 2022.
A category two issue is classed as a serious condition, such as stroke or chest pain, which may require rapid assessment and/or urgent transport.
The NHS’s Constitution highlights that all ambulance trusts should respond to category two issues within 18 minutes, and 90% of these calls should be responded to within 40 minutes.
However, this 18-minute target has only been met three times over the last five years.
Our Freedom of Information (FOI) Request revealed the ambulance service is performing considerably better within Yorkshire, with a Category 2 response time average of 41 minutes.
But this is still more than double the NHS target and one young stroke victim had to wait more than five hours for an ambulance to arrive.
Strokes remain a crucial, life-threatening condition, and more than 90% of stroke patients in Yorkshire, under the age of 30, have been classed as category two issues in the last five years.
Juliet Bouverie OBE, Chief Executive of the Stroke Association said: “Stroke is a medical emergency and time lost is brain lost.
“This is why it’s incredibly important that you act FAST.
“It is our responsibility to know the signs and be on the lookout for stroke.”
According to the Stroke Association, 39% of people do not recognise stroke as a medical emergency.
FAST is the all-important acronym that, when followed, could save a stroke victim’s life.
Remember the signs:
Face: Is the person’s face drooping, can they smile?
Arms: Can they raise both of their arms; do they have weakness on one side?
Speech: Is their speech compromised or slurred?
Time: It’s time to call 999.
For more information on spotting the signs of a stroke, click here.
“I had no idea a baby could have a stroke”: A mother’s story of her son’s perinatal stroke
Nine years ago, Rebecca Merritt embarked on what she thought would be the happiest day of her life, the birth of her first child.
Yet what transpired in the following 24 hours was traumatic rather than joyful, and it would only be three months later that doctors would be able to tell her the reason why, leaving her “completely shocked and silent.”
Her son, Jacob, suffered a perinatal stroke in the womb during birth. Rebecca, 17 at the time, wouldn’t find this out until much, much later. Now 26, looking back on the traumatic event, she said: “I honestly had no idea a baby could have a stroke.”
Perinatal strokes affect 1 in 2,300 live births, and a stroke was certainly the last thing she, and the doctors, thought was wrong with her newborn child.
Rebecca had a difficult birth resulting in a caesarean section, and Jacob began to have seizures as he was being born. The doctor’s instantly attached a main line of antibiotics to his heart and ran a plethora of blood tests. The possibility of a stroke was never put on the table.
The mother-of-two, from County Durham, said: “We went to see the paediatrician and what he said left me completely shocked and silent.
“There was never a conversation that it might be a stroke. When the diagnosis came, it was a massive shock.”
Jacob’s mother candidly admitted she wasn’t even aware a baby could have a stroke, admitting she thought “it won’t be that'' when the doctors eventually suggested a brain scan almost a year after Jacob was born, which revealed the truth.
Now nine-years-old, he has received muscular-skeletal and speech therapy throughout his life. The decision is now being made whether he will enter a regular secondary school or one which will provide him with more support.
Most survivors of perinatal strokes go on to have permanent disabilities, such as cognitive development difficulties or epilepsy.
Throughout the whole process, Rebecca has been left confused. She feels as though healthcare providers aren’t equipped with the right information around perinatal strokes.
She said: “Although you get some guidance you don’t get all of the guidance you need, and I feel like that’s down to the fact that not all healthcare providers are readily equipped with the knowledge of neonatal strokes.
“This is something I've come across in conversations in both a healthcare setting and during my day-to-day life as people just don’t know that this is something that can happen.”
Despite a lifetime of troubles for her son, Rebecca is left constantly frustrated with people’s lack of awareness around his hidden disabilities, with them often saying “he doesn’t look like he’s had a stroke.”
She said: “He’s a typical little boy, he loves being messy and gaming, but he also has a lot of difficult days.
“He struggles with mood swings, especially if he has had difficulty sleeping, which we have been told is as a result of his stroke.”
Rebecca also said that although Jacob is a loving boy, he has difficulty interacting with people outside his family, adding: “The stroke has definitely affected him in terms of making friendships.”
His mother wants to see that stigma eradicated, and for more awareness to be created around perinatal strokes.
She said: “If the information was relayed to me from the start of my pregnancy, I would’ve made a lot of different choices. If I knew the chance of brain injury, not just strokes, was so high in a difficult birth, I would’ve opted for a C-section from the start.”
Around 303 babies will suffer a perinatal stroke during their birth this year, completely changing the course of their lives. Their mothers, preparing for one of the happiest occasions of their lives, are living in the dark about the issue that will soon take over their lives.
Awareness around perinatal strokes needs to improve so that mothers up and down the country can have the knowledge Rebecca was never given.
That’s all from South Yorkshire
That all from the Sheffield Wire, a busy day at the count, with not much change in South Yorkshire.
Across the country Labour have made sweeping victories against the Conservatives, with the Lib Dems also making big strides in former Tory strongholds.
In Barnsley, Labour increased there overall majority, in Sheffield, the makeup of the council chamber has remained the same.
Stay tuned to the Sheffield Wire for more news from around the region.
How it stands: Sheffield
Next to no change in Sheffield, with all parties ending the day how they started. The city still remains without any party having overall control.
The biggest news coming out of Sheffield was this morning's announcement that the leader of Sheffield City Council, Labour's Terry Fox, will resign with immediate effect.
How it stands: Barnsley
Not much change from the start of the day for Barnsley, Labour have marginally increased there overall majority, moving from 46 to 48 seats.
The big news being the overturning of the two-decade strong Conservative seat in Penistone East in favour of Labour.
Mayor of South Yorkshire: “We need a new generation of leadership”
Oliver Coppard, the Mayor of South Yorkshire, reflects on today's results.
“A huge amount of respect for Terry”: South Yorkshire Mayor Says
The news of Terry Fox's resignation as leader of the council has dominated the election counts today, but there should still be a 'huge amount of respect', South Yorkshire Mayor, Oliver Coppard, says.
The resignation was announced this morning and followed a report criticising the Sheffield council for its handling of the tree felling scandal.
Liberal Democrats leader, Shaffaq Mohammed, has indicated the Information about the resignation had been embargoed for a week, before voting had finished.
South Yorkshire Mayor, Oliver Coppard, who was at the count in Sheffield, said: "A huge amount of respect for Terry — he took over the reins at a very difficult time and inherited a huge number of challenges and problems.
"He's worked tirelessly for this city, agree or disagree with the things that he's done, no one can doubt Terry's care, attention, or work ethic."
Sheffield somewhat curbs the national trend as Labour impressed throughout local ballots across the country. Indeed, although it has been placed under special measures by its national counterpart, Sheffield Labour will now have to negotiate with other parties on how to best move forward.
Mr Coppard said: "Across the country, the Labour Party has done really well, but there's always more work to do."
"We've got to have a negotiation with the other parties to understand how to move forward in this city."
St Luke’s hearing loops to improve disabled access in Sheffield
St Luke’s Hospice said it wants everyone to “hear and be heard” at its sites to coincide with this month’s Deaf Awareness Week.
The Sheffield charity, which cares for terminally ill people, introduced hearing loops in the public-facing areas of its Little Common Lane and Ecclesall Road sites.
The system improves the sound quality picked up by people with hearing aids, who might have struggled before.
John Highfield, media manager of St Luke’s said: “We are a charity that prides itself on the service we give to all people.
“There is much more focus on hearing issues, we are aware of that, and we are responding to that.
“We want people to feel they can come to us confident they can hear and be heard.”
Hearing loops are also being rolled out at St Luke’s charity shops across the city.
A member of staff at the hospice’s Broomhill Vintage Shop said: “We’ve had ours delivered, all we need to do is turn it one when it’s needed.
“It’s a great idea, absolutely, we’re all about inclusivity.”
Since the hearing loops were installed, Mr Highfield said that patients and visitors had shown their appreciation for them.
He said: “Certainly at our Little Common Lane site it’s gone down very well. It’s been very well received.
“And why wouldn’t it be?”
Mr Highfield also said that hearing loops are “just the latest in a long line” of disability supports at St Luke’s.
With the hospice caring for people with neurological conditions such as motor neurone disease, there is wheelchair access and support intended to keep people mobile.
Although Mr Highfield said the hospice wants to help its disabled patients throughout the year, he said: “These awareness weeks give any organisation a chance to say ‘oh, well we are doing this’.
“But Deaf Awareness Week has just given us an excuse to highlight what we are already doing.”
More information about St Luke’s can be found on its website.
Terry Fox resignation embargoed for “at least a week”, opposition coucillor says
Despite voters having just learned about Terry Fox's resignation as leader of the council, the information had already been embargoed for "at least a week," an opposition councillor has claimed.
The announcement came earlier today following a report criticising the council about their approach to the tree felling scandal earlier this year.
When asked about this information, Liberal Democrats leader and spokesperson, Shaffaq Mohammed, said Sheffield Labour had already known about it for "at least a week".
He added: "He's been thrown underneath a bus, but he's not the only one that was there when it all happened."
Having embargoed the information until only after the votes for this election were cast, has resulted in criticism regarding the national Labour Party's trust in Sheffield Labour.
Cllr Mohammed, added: "If I was a Labour voter yesterday, I'd be scratching my head thinking 'what on earth have I voted for', because those people have no power anymore.
"I'm now going to have to resist labour bureaucrats from London coming to Sheffield and telling us what to do when they have no democratic mandate whatsoever."
This comes as the Liberal Democrats increased their presence in the council after gaining 11 seats as opposed to the last election's 9 seats.
In the meantime, the Sheffield Labour Party will be placed into special measures until a new leader is found, placing into question the ability and power of decision-making of councillors in Sheffield.