“This is a different life and we need help to live it”
Having been left with significant bowel problems as a result of Cauda Equina Syndrome (CES), Sadie was left struggling for months with no support post-discharge from hospital.
After two rounds of surgery following diagnosis in May 2019, Sadie went home with no support or appointments in place, having to cope with her ongoing bowel problems and being confined to a wheelchair with only her family to turn to.
She is now calling for greater awareness of CES and its life-changing impact, and for more to be done to support patients.
“When I left the hospital I didn’t get physio until about 13 or 14 months later,” she told the CES Festival and Conference.
“I did take a lot of healing as I had internal stitches, and that may have been the reason, but I still feel that was a long time. I wanted to push forward and do what I could, but I felt they were always pushing me back.
“It was only three months ago that the incontinence team got involved, I think that’s a very long time, I had 12 months of community nursing. There was no support, the community nurse wasn’t the right way forward I feel. I had no independence and it got me to a very dark place.
“There was no home assessment on leaving hospital, they did ask if I wanted a handrail for the bed which I had, but apart from that, I was sent home and left to get on with it.
“You realise how much you’ve taken for granted – all of a sudden you don’t know how to go to the toilet anymore, that sounds really stupid and other people don’t get it, but you don’t get the feeling to wee, you don’t know what that feeling is anymore.
“I didn’t feel I had any control of anything. My bowel had the biggest impact on me physically but it affected me mentally as well.”
Despite the devastating impact it can have on a person’s life, CES remains little known and understood by many, even within the medical profession.
The syndrome is a rare and severe type of spinal stenosis where the nerves in the lower back suddenly become severely compressed, and failure to diagnose and receive appropriate treatment can lead to greater risk of long-term consequences including incontinence or paralysis, as well as problems with sexual function.
Sadie believes the trauma of CES and its impact is made worse by the lack of provision put in place for patients once they are discharged from hospital.
“Before I’d even discharged from hospital, I was struggling to deal with a lot of things mentally, physically, and with my bowel function. You need some kind of information to leave the hospital with, contact numbers and certainly some kind of mental health support,” she says.
“CES is major, life changing, and these things really need to be before you’re even discharged.
“You’re fighting for appointments as soon as you leave hospital, no-one is interested, but if you could make them before you leave hospital with anybody who is needed, I think that would be totally different.
“Throughout the whole of this you have to try and remain positive but that’s really hard when you’re battling to get appointments and trying to move forward and get some independence. It’s a different life and we need help to live it.”
Sadie is grateful for the support of her partner – “from day one, no matter what is thrown at her, she takes it and carries on reassuring me” – and from the CES community, which is represented by the Cauda Equina Champions Charity.
The charity has created the first-ever CES Festival and Conference to help increase awareness of the condition, bringing together healthcare professionals and patients to share stories and help inform best practice. The week-long event will culminate in International CES Awareness Day on Friday.
“It can be endless, but we need to stay positive although that’s very hard to do. We need to rely on each other,” says Sadie.
“While things are changed in how CES patients and treated and looked upon, we need to lean on each other.”
To attend the remainder of the CES Festival and Conference, register here
P.A.U.L For Brain Recovery – ‘We know it’s difficult, that’s why we exist’
Paul Spence tells NR Times how his own brain injury has led to the creation of new support for fellow survivors
An organisation established in response to the lack of community-based brain injury support is now helping to change the reality for survivors across East Yorkshire and Lincolnshire.
P.A.U.L For Brain Recovery has helped hundreds of people living with brain injury since its inception in 2016 and has created a dedicated centre in Hull to offer support to individuals and their families as they seek to rebuild their lives after the devastation of brain injury.
The charity was formed by Paul Spence, who sustained a brain haemorrhage in 2012 in an unprovoked attack, leaving him struggling to cope with the new reality he faced. Having been forced to give up his career and deal with the breakdown of his relationship, Paul’s situation was amplified by the lack of community support post-discharge from hospital.
But through discussing his experiences via social media, connecting him to other brain injury survivors, Paul realised the impact he could make on so many lives by leading the way and filling the void in community support – and through the creation of P.A.U.L For Brain Recovery (which stands for Positivity, Awareness, Understanding, Love) he and his growing team are delivering life-changing impacts to people in Hull and beyond.
The growing charity routinely works with people as far afield as Lincolnshire, who travel to its base in Hull’s Wilberforce Centre for access to its many sessions, delivered on both a group and one-to-one basis, which range from health and wellbeing, education, social groups, peer and family support and advocacy.
A youth group has also been created, alongside a ‘Heroes Group’ who share experiences and help determine the future direction of the organisation.
P.A.U.L For Brain Recovery – which has secured funding from NHS Hull CCG in recognition of its role in community brain injury support – also arranges social outings and allotment sessions for its group.
And for founder Paul, he is proud of the difference the organisation continues to make to the lives of people like him and his family, who left the outstanding medical care of Hull Royal Infirmary to be discharged to minimal support in the community.
“There was no training or support. I was in a bubble and my family were looking after me, it was very difficult for them trying to muddle through. We very quickly realised there were very limited services in the community, not adequate services for the support brain injury recovery needs,” he says.
“I couldn’t explain how I was or how I felt because I didn’t know. I was like one of those people you see in the movies who sits there staring into space. All I knew was that my life was different and difficult.
“It has taken me years to make sense of it. But then when the insight does improve, that’s when the depression comes because you realise what your life actually is now and it pulls you down.
“My relationship broke down, my social circles faltered, and you certainly find out who your friends are during times like that. People were having to grieve for the old Paul because he wasn’t coming back, and that was incredibly tormenting and frustrating for my family.
“I had worked as an electrician since I was 16 and I had a good job as a foreman, and to be told it’s likely I would be able to continue in that career was very difficult and really frightening. I did go back to work but had gone from being the strongest link to the weakest link. The lads had my back and tried to help me, but I had to admit that jobs I once could’ve done with my eyes shut, I couldn’t do at all anymore. It was a daily reminder of what had happened to me.
“All your life you work on building your identity and then suddenly that is stripped away. You become very vulnerable, and life becomes incredibly tough. I’m privileged to have amazing family and friends, but they don’t know how to help you and there’s little to no support there to help any of you.”
Determined not to let his injury beat or define him, Paul turned to exercise as a therapy, initially running a half marathon to raise money for Hull Royal Infirmary, which raised over £17,000, with thousands of pounds in further funds raised since.
Wellbeing became a significant factor in Paul’s ongoing recovery – his story even being documented in Men’s Health magazine – with him realising the positive impact exercise, eating well and spending time outdoors were having on his life.
“Training gave me a purpose, I was giving something back to Hull Royal Infirmary but also enriching my own recovery, my brain function relies very heavily on looking after myself,” he recalls.
“It gave me discipline and helped me to realise a lot of things. I would go to the gym and at first just wandered around sitting on the machines, but I realised I was different so pushed myself to get past that.
“It also made me think about my health in general, which included my mental health, and looking back it was a mistake to not open up about my mental health earlier. I had a lot of time on my hands, which I actually needed, because that time alone gave me time to process and accept what had happened.
“I now understood what happened in the early days of my recovery a lot better, and the reasons I struggled. I also realised there must be more people like me, and I wanted to help make a difference to them too – until I understood myself, I couldn’t work with other people, but I had reached that point.”
From sharing his journey and thoughts on Facebook, Paul found growing numbers of people coming to him for advice, requesting his support in-person, with Hull Royal Infirmary also asking him to come in and speak to patients and families. He also did a number of talks in local schools to highlight the devastating effects that One Punch can have.
“I wanted to raise awareness of ABI anywhere and everywhere, in any way I could. I had been to the NHS Hull CCG and said I didn’t think the support on offer was enough and told them about the service I was providing myself. They told me to put a business plan together and come back, which was the start of all of this,” says Paul.
With the support of key contacts he had made, all impressed by the tireless work Paul had done in promoting brain injury recovery, Paul put together the business plan and secured funding from the NHS Hull CCG for a dedicated space in the Wilberforce Health Centre.
Since 2016, P.A.U.L For Brain Recovery has built a five-strong team, delivering support to people and families whenever they need it.
Leigh North joined as business lead five years ago and has worked alongside Paul in building the charity’s services and reach.
“Our approach is very much about making the pathway from acute to community care as smooth as possible and to support people in that, helping them to avoid falling into crisis,” he says.
“In some respects, this was initially a research project, which over the past five years has enabled us to develop focused, person-centred support plans to optimise recovery and minimise the long-term effects of brain injury.
“Our overall aim is to help make life easier after brain injury and help survivors reach their new potential. We offer practical coping skills and knowledge to help them accept and manage their life-changing disability and provide healthy activities to improve emotional and physical wellbeing, so they can go on to rebuild a meaningful life.”
And for Paul, he is proud of what has been created, and of the difference the charity is making to so many lives.
“What we do is based on the lived experience of people who understand. We know what it’s like and we know it’s difficult, and that’s why we exist,” he says.
‘Surfing is helping me rebuild my life post-stroke’
Survivor Sally Freeman lost both her job and home, but is now looking to a more positive future
A survivor who lost both her job and home after her stroke is rebuilding her life after finding salvation in surfing.
Sally Freeman had her first of two strokes just four days before Christmas in 2015, turning her life upside down. Without any prior warning, an aneurism suddenly burst in her brain.
“I don’t remember a thing about my stroke,” says 62-year-old Sally, from Devon.
“I was out with my friend and I suddenly collapsed and that was it. They called my kids to come to hospital and told them they didn’t know if I was going to pull through.”
Sally was in hospital for the following four months, including an initial three-week stay in intensive care in Derriford Hospital, Plymouth – but while successfully fighting for her life, beyond her hospital bed, Sally’s world was falling apart.
“My kids couldn’t afford to pay the rent on my home when I was in hospital. I had to find somewhere else to live,” she recalls.
“All my furniture went to my ex-husband’s home for storage. My kids did the right thing but it meant we had to start again.
“I was in hospital and I was homeless. They wanted me out and I said I can’t because I’ve got nowhere to go.”
In a further devastating blow, the stroke also cost Sally her job and she had to rely on benefits.
“I had recently started working nights at Sainsbury’s packing online grocery orders after being made redundant at Beaford Arts Centre. I’d worked at the arts centre as a kitchen assistant for 20 years and it was a job I really loved,” says Sally.
“After the stroke I couldn’t work because I get dizzy and very tired.
“The aftermath of the stroke was something I couldn’t come to terms with. It was really traumatic but I got through it with the help of my family.
“My grandson Sonny was just two and he used to visit me in hospital. He would come running into the ward and cheer everyone up, even the doctors!”
Sally began the process of rebuilding her life and was able to find a supported living flat in Barnstaple, and two years later moved to a bungalow in Torrington to be near the care home where her late father was then living.
And in an unexpected twist, Sally found a love of surfing, which has helped to inspire her ongoing recovery. The course was enabled by The Stroke Association through its partnership with The Wave Project at Croyde.
“The first time I went I was very nervous,” said Sally.
“My balance is quite bad at times. I found it very difficult walking on the sand because I was so wobbly and had to be helped.
“The first session I chickened out and just watched but the second time I got the confidence to have a go. I absolutely loved it.
“Going in the water is just amazing. You switch off completely from worrying about anything. It’s a lovely feeling. You feel ‘Wooo, this is good!’
“So far I’ve only been on my stomach. I would be too wobbly to stand up but I’d like to try it on my knees. I feel quite proud of myself and I would like to keep it up now that this course has finished.
“The Wave Project staff and volunteers were absolutely brilliant looking after you and giving you confidence.”
Sally is sharing her story to support the Stroke Association’s Hope After Stroke campaign, highlighting the difficulties stroke survivors can face and moments that can give them optimism on the road to their recovery.
‘I’m determined this won’t be the final chapter in my life’
Survivor Adrian Day is looking to the future with hope after having a stroke and being made redundant within a week
Having had a stroke and lost his job within a week, Adrian Day is now committed to showing others there is hope even during the bleakest of times.
The 61-year-old had a stroke in May last year, during the height of the first wave of the COVID-19 pandemic, and only days later was told he would be made redundant.
But after a difficult year, Adrian is now looking to the future after making strong progress in his rehabilitation, and is determined to walk his daughter down the aisle on her wedding day in 2023.
“I’ve never felt depressed, or asked myself, ‘Why me?’ I actually consider myself lucky as haemorrhagic stroke kills more often than not but I’m still around to tell my story,” says Adrian.
“I’m also still here for my wife and daughters and I hope all of that brings inspiration and hope to other stroke survivors.”
It was while at home during COVID lockdown that Adrian began to realise something was not right, when he felt light-headed and could no longer feel his left arm or leg.
His wife noticed a slight droop in his face and called 999, explaining she suspected Adrian was having a stroke.
“The ambulance was on the drive in ten minutes. I was conscious and lucid throughout the stroke and I gave the paramedics as much information as possible on our way to hospital,” recalls Adrian, from Warrington.
A CT scan soon revealed Adrian’s stroke had been caused by a bleed on the brain and he would spend three days in Whiston hospital before being transferred to Warrington hospital.
But just one week after this, Adrian received devastating news about his job as an international development manager.
“On May, exactly one week after my stroke, and still paralysed, my boss emailed me to say that I would be redundant from May 31,” he says.
“The world was at the start of a global pandemic, the UK was in lockdown, I had suffered a stroke, I was paralysed and had just lost my job – I couldn’t believe what was happening.”
But despite two life-changing events in the space of a few days, Adrian has stayed determined in his recovery and getting his life back on track.
He began intensive sessions of physio and occupational therapy, while setting himself the goal of walking out of hospital by his 61st birthday.
Now back at home and continuing his rehabilitation, Adrian wants to show others that there is hope after stroke.
“Whilst I accept that I wont be the person I was before the stroke, I’m determined that it won’t be the final chapter in my life,” he says.
“I want to get another job, I’ve even had a few interviews and I want to drive again too.
“I knew life for me was going to be very different from now on. I was worrying about being unemployed and looking after my family.
Adrian and his family have been supported by The Stroke Association in being able to rebuild their lives.
“The Stroke Association spoke to my wife Carol, drafted a letter to my former employer and put me in touch with Citizens Advice,” says Adrian.
“They also offered me the opportunity to talk. They were sympathetic, they listened, offered advice and it helped, it really did.”
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