Your Call - Issue 17

YOUR CALL.

The patient transport service is my lifeline.

“I’ve turned my life around.”

111 Health Advisor Laura

The 999 twins who could both save your life

The birds are chirping, the days are getting lighter and the smell of the new season is palpable. who doesn’t love the anticipation that spring brings?

We’ve got some fresh new faces in this edition of people whose stories are very different but so remarkable. We hope by giving our staff, patients, volunteers and public a voice to share their life experiences, that Your Call is relatable to you. If we can help just one person with the topics covered, we will be very happy.

Perhaps it is right we draw on mental health in this edition and in 2022, we took 91,207 calls relating to it. 999 Emergency Call Handler Barry and NHS 111 Health Advisor Laura found themselves needing our help. They bravely talk about their addiction battles and how they have turned their lives around for the better.

If you know somebody with an addiction, you will know it is a cruel illness that can take over and ruin lives. From putting people into financial distress to straining family relations, and it is no exaggeration to say it can be deadly in some extreme cases. However, Barry and Laura are inspirational proof that there can be light at the end of the tunnel for many, with the right help and support. There are lots more stories inside, we hope you enjoy reading them.

YOUR

If so, please get in touch by emailing: communications@nwas.nhs.uk.

SHOWING THE CARING SIDE OF OUR PATIENT TRANSPORT SERVICE (PTS) CREWS.

Claire Hunter, Postive Action Officer spent some time with one of our PTS crews in Merseyside to find out a bit more about the people in the role.

A DISABILITY YOU CAN’T SEE; ME AND MY STOMAS.

Sarah Sutton, 111 Senior Clinical Advisor, opens up about the diagnosis that left her with a lifelong disability.

THE 999 TWINS WHO COULD BOTH SAVE YOUR LIFE.

Meet Christina and Philippa from Preston. They are non-identical twins working in different areas of our emergency service in Lancashire.

Paramedic Alan was diagnosed with Asperger’s Syndrome at the age of 47, he talks about his experience of being diagnosed as an adult.

CALL MAGAZINE TEAM

LIVING WITH ASPERGER’S - ALAN’S STORY.

CAN HAVE IT ALL, BUT MAYBE YOU DON’T HAVE TO HAVE IT ALL AT ONCE.”

We sat down with Non-Executive Director and Vice Chair, Alison Chambers to talk about her career-to-date and her role at NWAS since joining in 2019. But what we gained, was so much more.

From taking career risks, to being a strong leader, to always remaining value-driven and how after decades of walking the career path (or sprinting down it in her case!), Alison has one clear, important message on maintaining a balance, re-charging and making choices that are right for you.

Alison first qualified as a chartered physiotherapist in 1985. In the mid-90s, she took on her first academic post at the University of Salford, as a lecturer in physiotherapy. Alison then spent the next two decades at various universities across the country, working across development, employability, health, social care and setting up a department of Allied Health Professions. Alison did all this while raising two young sons.

Before we start to bang the drum insisting working mothers really can “have it all”, Alison has some learnt advice. She says:

“I work with many people and always look to encourage a balance. Whether you want to climb the career ladder or stay exactly where you are in your role or you want to make more time for your family or wellbeing, or you want to manage it all in one go, it is completely up to you, it is your choice, your happiness. Never allow anyone else to tell you that the choices you make, aren’t the right choices for you.”

She continues: “I once went on a leadership development programme where I had to create a vision board of what my ambitions, goals and priorities were. Cutting images out of magazines, I loaded my board with so many different ideas and right in the centre, I stuck down a picture of a chimpanzee mother with her baby. This image of a mother was the most important part of that board, because family and children are to me, more important than anything. In a career-driven world, some people find that quite shocking, but balance is key. I’m extremely proud of where I’ve got to in my career but I’m most proud of the time I have given to my family, always making them my priority.”

Both in her role and personally, Alison is interested in being more involved in the trust networks, having been to a few meetings by the newly launched Women’s Network in the last few months. She says: “It’s important to say that finding the right balance is for everyone, not just women, not just working mothers. I have of course resonated with a few young women on leadership programmes, where I try my best to be real using my own experiences. I am not a hero, my skirting boards are not as clean as I’d like but putting my ‘whole self’ forward matters, it keeps me grounded and I hope encourages others to work on getting the career, work and home balance that works for them.”

As Alison’s first non-executive role, she praises Chair Peter White for his support and guidance, she says : “I’ve learnt so much from watching Peter in board meetings and as a boss he’s up there with the best of them.”

Attracted to the role through her previous Allied Health Professions background, Alison felt as though she “already had some affinity with NWAS and is determined to give something back.”

She continued: “Being a non-exec is a privilege, you get to work with great people, our role is to ask good questions, hold the executive to account and probe and seek assurance on behalf of the people we serve. There is no doubt that we are living in challenging times, I’m proud of everyone in the NWAS family and proud to be part of it. We can all make a difference and I hope I do.”

“YOU

My patient transport service colleagues inspire me.

Claire Hunter is a positive action officer and her role involves working with our harder-toreach communities to help people find a career with us across all our services. Claire spent some time with one of our Patient Transport Service (PTS) crews in Merseyside to find out a bit more about them and their role.

“When I became a positive action officer, I couldn’t wait to be able to spark excitement in those who may have thought they couldn’t work for the ambulance service. I want to inspire people to be the best version of themselves and understand why the service is an employer of choice.

“I worked in our 111 service and was familiar with our 999 service, but our PTS was a mystery to me. I needed to know the role to really engage with our communities about it. I spent a day shadowing a crew to find out more.”

Claire went out with Ambulance Care Assistants (ACA) Shaun and Jim who in a single day, transformed her thoughts around PTS: “I knew I would enjoy the day and like the role, but I didn’t expect to walk away with the love and passion that I have.

“From start to finish it was very clear how passionate Jim and Shaun are about their roles and helping their patients. We all work in the ambulance service and do the job because we want to help people in one way or another. However, through the dark clouds of the current demand on the NHS it was wonderful to see the love and light they still shine for their role and for their patients.”

“Their knowledge about each of their patients amazed me they ensured they knew all about them from their history, their hobbies and their families. They didn’t just make conversation, they spoke with genuine feeling, intrigue and concern. They turned anxious moments that patients may find upsetting into memorable moments with a smile and laugh. You could see the love their patients had for them in return.”

On the shift Jim explained to Claire how interactions with patients are so important, he said:

“We may be the only people our patients speak to all day. You get to know all about them, what they love to do. Likewise, if I turn up and I see my patient isn’t well, I can feed that back, safeguard and know I am making them safe.”

Shaun added: “You meet people from all walks of life, you hear their stories, you get to know them, and you go on the journey with them, that’s what I love most about the role”.

Claire was blown away by the professionalism and dedication: “Shadowing my PTS colleagues made me realise that they are the heart of the communities they serve. I have no doubt that all the other ACAs carry the same light and passion Shaun and Jim. The dedication they have for their role, their patients but also their colleagues is inspiring. They make the experience of our PTS the most positive it can be.

“I can’t thank Shaun, Jim and their patients enough. I have walked away feeling one day I would love and aspire to be an ACA. I just hope I live up to Shaun, Jim and all the incredible ACAs we have here at NWAS.”

Multiple Sclerosis diagnosis

Back in 2018, volunteer Rupak was living down south with his family and had just set up his own business after a successful career in media and advertising. Rupak had noticed that he was starting to fall over a lot and went to hospital where an MRI scan discovered lesions on his spine.

This led to him being diagnosed with Primary Progressive Multiple Sclerosis (PPMS). PPMS is a very rare type of MS affecting about 10-15% of people diagnosed with MS and affects mobility and speech quite rapidly. Rupak’s condition has left him unable to work and he ended up losing his business which he put so much effort into.

Rupak, his partner and three children were then forced to move in with family in Liverpool to ensure the children had a stable home environment and Rupak later moved into a wheelchair-accessible flat.

Due to regular routine appointments with his condition at various clinics and hospitals, Rupak has since become dependent on our non-emergency patient transport service (PTS).

Our PTS ambulance crews collect patients who are eligible for transport and take them to their appointment and back home again. Rupak uses it every week and would not be able to attend his appointments without the service.

Rupak has always had a positive experience with our PTS crews over the past two years of using the service

and recently met with PTS Ambulance Care Assistant, Hannah, after getting in touch wanting to thank her for her support on a recent transfer. Rupak said:

“It was lovely to see Hannah and to also thank her in person as she safely transported me to my appointment whilst being able to stay in my wheelchair. This is a big thing for me as I struggled with my mobility. She made sure I was in my home safely. It was a very good experience and I’m so grateful for service as it is a huge part of my life.”

With Rupak becoming a frequent user of the service, he decided to join the trust’s Patient and Public Panel (PPP) back in July last year as a way of giving back and improving the ambulance service by sharing his feedback with a lived experience of using PTS.

YOU CAN JOIN OUR PPP

Our PPP is open to members of the public living in the North West region over the age of 16 to influence improvements to our core service lines.

With three different flexible levels of involvement, you can take part in a way that suits you best, even if that’s in person or online.

Visit nwas.nhs.uk/panel to find out more.

“My primary progressive

changed my life.”

TACKLING STEREOTYPES. A DISABILITY YOU CAN’T SEE; ME AND MY STOMAS.

Sarah Sutton, 111 Senior Clinical Advisor, is opening up about the diagnosis that left her with a life-long disability, to raise awareness and banish the stereotypes that still linger for people with disabilities.

Seven years ago, Sarah was working as a nurse at Royal Blackburn Hospital. She loved her job, caring for patients, knowing she was making a difference, and helping people when they needed help the most. However, in 2015, she fell ill. She told us, “I started experiencing severe pains in my stomach, irregular bleeding and discharge. I went to the doctors and after tests, I was told I had vaginal cancer. They told me it was an aggressive cancer, so I needed to start treatment immediately. It was a shock but I was determined to beat it. I underwent chemotherapy, radiotherapy and brachytherapy.”

After her treatment concluded, Sarah was told that because of the aggressive treatment, her bladder and bowel had been damaged so it was likely she would need a stoma bag in the future. She explained, “I was fine the year following my treatments, but it was in 2017 when I started with incontinence and I knew having a urostomy was going to be the only solution. A few months later, I had surgery to fit the stoma bag. It was a difficult time. After my surgery, I developed pneumonia and sepsis, so it was a scary few weeks.

“A year after, I then had to have a colostomy also. I found adjusting to living with a colostomy was a lot harder than the urostomy. It was very hard to manage both and I found it very difficult at first, both physically and emotionally.”

In between her surgeries and after she had recovered, Sarah still worked as a nurse. However, after her stoma operations, her working environment became one she could no longer work in. Reluctantly, she gave up the job she loved.

Just a few short months later, Sarah applied for a job at 111, and after a successful interview, she began her new career as a senior clinical advisor.

She told us, “The support I have received from my managers has been incredible, I can’t fault them. From the very first week, I have been fully supported.”

Although she is well supported at work and her colleagues

are understanding of her disability, unfortunately, Sarah has faced some grief from people outside of work. She explained, “From the very first day, I have had comments from people when using lifts. After my surgeries, I used a lift and someone actually said to me “you don’t need to use a lift.”

I have also had problems when using disabled toilets. Because people can’t see my stoma bags, they can’t understand why I would be using a disabled toilet and have frequently, voiced their opinions. This has made me feel embarrassed, ashamed and upset. Even in today’s society people still do not recognise that all disabilities are not always visible.”

Sarah is now on a mission to raise awareness of disabilities, especially those that you cannot see. She said, “I try, where possible, to raise awareness of disabilities like mine. I think it is important because there are still so many people who hide the fact that they have a stoma due to feeling embarrassed or ashamed. Although I have felt like this, I have learned to accept my disability and use it to raise awareness and educate people rather than it be something I am ashamed of.”

“You can turn your life around; I am living proof of it.”

Emergency Medical Advisor Barry is excited about the opportunities he has in his life. He is a recovering alcoholic, sober and in recovery since Friday 13 March 2020. Since then, he has turned his life around and taking 999 calls is something he believes he was born to do. He hopes that by sharing his story he can inspire those struggling with addiction that life can and will get better if you want it to.

Barry recalls having had problems with alcohol for a long time before his sobriety date, drinking heavily for the last 40 years. However, changes in his personal life led to his drinking escalating out of control.

“I had left my marital home, bought a narrowboat and moved onto it in January 2019. From this moment I started drinking day and night, and not eating. My alcohol consumption was spiralling and my health was deteriorating. I had no intention of stopping drinking. That was until 13 March at 10:13pm when little did I know, I had my last drink. Markedly it was the same time of day my daughter was born.

“I am not sure what happened on March 14, I didn’t wake up that day planning not to drink but I went 17 hours without a drink. At that point, I had become so ill I was with my sister and my condition was deteriorating. We had to call an ambulance.”

Barry’s body had gone into acute alcohol withdrawal, he was shaking violently in a way he could not stand up straight. He describes feeling like his head was going to explode as his blood pressure was dangerously high.

Paramedic Faye Preston and Emergency Medical Technician Barry Hall (pictured below) arrived to help Barry. “The ambulance crew turned up that day and it was the first time I told somebody the extent of my drinking. I believe their intervention saved my life and helped me get my life back on track for which I will forever be grateful.”

Barry was admitted to the hospital and says, “The moment I stepped over the threshold of the hospital, the desire to drink left me.”

He was discharged after two days, and his sister took him to an Alcoholics Anonymous (AA) meeting. From this point, Barry attended hundreds of AA meetings over the course of the next couple of years joining sessions across the world via Zoom. Barry’s business took a back seat whilst he focussed on his recovery with abstinence being the only way forward for him. He had psychology and counselling sessions to help him recover.

“I kept myself sober by doing the things I needed to do to keep safe, not going to the pub, avoiding people who drink. For me giving up alcohol wasn’t the difficult part. It was understanding why I turned to drink in the first place.”

Eighteen months sober Barry met his partner who he describes as an amazing support to him: “She believed in me and

when I started looking for work, she encouraged me to go for opportunities.”

In the summer of last year, Barry was searching for a job in which he could give something back: “I was struggling to find anything as being 59 and open and honest with my recovery and addiction was proving to be a barrier.”

Barry saw the job advert for emergency medical advisors pop up on his screen and knew instantly that this was what he has been looking for. “I worked hard to get an interview, get through the typing test whilst being very open and honest with the interviewees about my addiction and the fact I am a recovering alcoholic. I had extra blood tests to ensure I was able to do the job.

“When I got the job I was elated. North West Ambulance Service took the time to understand me as a person and saw a quality in me that I could make a good contribution to society. People in recovery do have value, they can make a difference and get a job.”

In October 2022, Barry recalls walking into the training classroom with people much younger than him: “I was older than most people but I really enjoyed it. I turned 60 in training and to have this job opportunity at my age I feel is amazing.

“I love the control room environment; it is the most fulfilling and rewarding job I could ask for and I feel fortunate and privileged to do it. I am passionate about championing mental health and have great empathy for people, particularly those with mental health conditions and addiction. There seems to be ignorance about alcoholism and addiction, everyone thinks you choose the drink but you don’t it is a disease.

“I am keen to show people that you can turn your life around and get an amazing job, I am living proof of it.”

Barry took his first call last month and whilst he said it was pretty daunting, he enjoyed it. “You have to care about people in this job and I do, I try to understand the person on the other end of the line and put myself in their position. My experience has helped shape the call handler I am and my new role has played a tremendously important part in my recovery.”

“In born never

Laura Almond has her dream career working in a job where she feels she can make a difference. As a call handler in our NHS 111 service, she helps people get the right care they need. She is happy and content in her life with her husband and four beautiful, healthy children. But it hasn’t all been plain sailing.

Laura has struggled with mental health for as long as she can remember but never asked for help. She bravely opens up about her alcohol and drug addiction which stemmed from being in an emotionally abusive relationship.

“My ex-partner gaslighted me into thinking I was ugly and stupid. After years of being told this, I started to believe it. I started using alcohol as a crutch, drinking every night and then my partner introduced me to drugs. I spent years using drugs and alcohol to hide my mental health problems and to cover how much I disliked myself and my life.

“I knew I needed a way out, so I got a second job and started to hide money and was eventually able to get a new house for my children and I without him knowing.”

This is where Laura’s addiction became even worse as she struggled to raise three children alone with two jobs. Laura says using drugs gave her the energy to do this, but she hated who she was and the life she was leading. “I felt so alone, I put on this act that I was the happiest person in the world. I wanted everyone to believe I was a good mum and could raise my children on my own.”

It was at this point Laura got in contact with an old friend and built a wonderful loving relationship with him. “He was amazing with my children and had all the patience in the world regarding my mental health. He had no knowledge of my drug and alcohol addiction, nobody did. I was a fully functioning addict.

“I hid it from him for two years and I hated myself. I adored this man but I couldn’t be honest with him. I tried to end my life as I couldn’t cope the guilt and hatred I had for myself. I thought my children would be better off if I wasn’t here.”

Laura spent some time in hospital and attended acute therapy sessions which taught her skills to change her negative thought processes into positive ones as well as how to handle her emotions. sadly, on completing her training Laura still felt lost and reverted straight back.

Covid soon hit and Laura’s lockdown drinking and drug taking became out of control. Laura made a second attempt to take her own life, suffering a cardiac arrest, then being revived, receiving further treatment in hospital. ”While on the ward, I had no contact with the outside world, my partner rang the hospital and stated that I had to stop drinking and taking drugs and get the help I desperately needed.

“From my hospital bed, I contacted Inspire and the mental health team. I desperately wanted to change and make my partner and my children proud of me.

“I was discharged home under the mental health team and drug and alcohol rehabilitation team. Lockdown and isolation was the best thing that could have happened to me. I quit smoking, drinking alcohol and taking drugs immediately. I had some serious making up to do to get my children, my family and my partner to trust me again.”

Five weeks later Laura discovered she was pregnant with her fourth child. “I was put under the perinatal mental health team and had my own drug and alcohol rehabilitation midwife. The support and care I received was amazing.

“Six months into my pregnancy lockdown had lifted, I couldn’t shake the feeling something bad was going to happen to either me or my baby. My mental health support worker suggested some time out in a house that supported people with mental health crisis. My family could visit, and I stayed there for seven days to give me the support and guidance I so desperately needed.

“Whilst in the home I was diagnosed with borderline personality disorder and instantly put on medication that would control my symptoms. I could finally see light at the end of the tunnel.

“In December 2020 my beautiful boy was born and he saved me in ways he will never know or understand. I’m now three years clean and sober.”

Laura hopes that by sharing her story, people will see that you can change. “If you are going through something similar, it might not seem like it but things will get better. You need to believe in yourself. Help and support is out there but you need to want to ask for it and work at it. It’s your life and only you can change it.”

December my beautiful boy was born and he saved me in ways he will never know or understand.”

THE 999 TWINS WHO COULD BOTH SAVE YOUR LIFE

Meet Christina and Philippa from Preston. They are non-identical twins working in different areas of our emergency service in Lancashire.

Christina, a dispatcher in our emergency operations centre coordinates all the ambulance resources in her area sending the nearest ones to those patients needing them the most. Philippa, an emergency medical technician works on an ambulance crew attending to the sickest patients that need our help.

Born within 18 minutes of each other, Christina and Philippa have had a close bond since their birthday. Philippa says, “As babies/kids we were inseparable, we literally shared everything including a desk and a bed!”

Christina adds; “Every birthday, first day at school, first jobs, first heartbreak, first holiday and now our children share a lot of firsts together. She’s always by my side and my go-to person and there is no one else in the world I would want by my side to share those firsts with.”

Their bond has continued to adulthood where they tell us they are not only sisters but best friends. It isn’t surprising then that they have ended up working together, for the same trust, in the same service.

Philippa was the first to opt for a career in public service and joined the ambulance service fourteen years ago. She started in our patient transport service before progressing to the emergency medical technician in our emergency service. It was only when Christina came back from travelling four years later that Philippa talked her into applying for a 999-call handler position.

Philippa who affectionately calls her twin “Kicks” says, “I desperately didn’t want Kicks to go off travelling again so I knew I needed to find her a good job. When the job

opportunity arose, I helped her to apply, and the rest is history.”

Christina worked as a 999-call hander for nine years before transitioning over to being a dispatcher in the last year. In her current role, Christina often finds herself on the same shift as Phillipa and often dispatches Philippa and her crewmate to emergencies. Christina says, “I love working alongside my sister, it feels so nice particularly if you are having a particularly stressful day to hear her voice on the other end of the radio.”

While the pair share a love for each of their individual careers, they admit they could never do what each other does. “I am so squeamish that I can’t bear the sight of blood or sick or anything like that. I have such admiration for my sister, and I am so proud of how she helps people in her role.” Says Christina.

Philippa says, “Kicks is kind, funny and a genuinely lovely person which is why she has been successful in her career. She has lots of empathy and patience with callers which is something you need when taking 999 calls. She is also very calm and measured under pressure which is what makes her a great dispatcher. For me working at a desk isn’t something I could do, so swapping with Kicks won’t be happening anytime soon! Besides I love the camaraderie of working on the road with my colleagues.”

Sharing things in their lives has been common ground and their working life is no different. They both share the same best friend, they have the same circle of friends, they both love working within the green family and they both love working to help their community.

“I love working alongside my sister, we share ideas and experiences with our collective group of friends and together we like to think we make a difference.” Says Christina.

Unfortunately, as we have reported before violence against our staff is far too common. Staff who are abused and attacked when they are trying to help people is disturbing. However, while we encourage them to report it, incidents don’t always result in a prosecution.

Emergency Medical Technician (EMT2) Debbie from Northwich is encouraging her colleagues to speak up, so perpetrators don’t get away with it. Last summer she was punched in the face by a patient who she had treated just moments before.

“We got him on the stretcher ready for transport to hospital but realised he was facing the wrong way. So, between me and my colleague, we tried to turn him around. As we did that he sat bolt upright and threw a fist right at my face. He then ran off down the road, coming out of his “seizure” very quickly. Then threw himself on the floor a hundred metres on the road.”

Debbie reported it to police officers who came to the scene and took a statement. In December she received a phone call confirming the man pleaded guilty to assault against an emergency service worker and received six months suspended sentence, six months on a community payback scheme as well as three months wearing a tag and a three-month curfew and ordered to pay her £200 compensation.

“I understand it can be difficult to get a conviction to stick, and I’m very satisfied with the sentence. I hope it serves as an example that you can get justice. Attacks on ambulance staff are awful. I hope the person involved in mine now thinks twice about doing it again and all his mates that know about his conviction would think twice as well.”

“There have to be consequences. He could’ve caused me a more severe injury, I’m glad he didn’t but he could have. I’ve seen it with my colleagues and in the press, paramedics being stabbed and punched… all sorts. It shouldn’t be tolerated. We need to take the time to report these crimes as it can make a difference.”

I was attacked by the person I was treating.

EMILY BRAVELY SHARES HER TRANSGENDER STORY

Every year on the 31st March International Transgender Day of Visibility is celebrated. A day dedicated to transgender people and raising awareness of the discrimination they face worldwide.

Emergency Medical Advisor Emily Hughes has been part of the North West Ambulance Service (NWAS) family since October last year.

Emily started her transition journey in April 2022 after years of not feeling her true self. She explained, “I have always known I was trans. However, I didn’t feel it was the right time for me. For a long time, I pushed it to the back of my head. But on 24 April last year, I took the leap and began my trans journey. Before I started I was very nervous but I had the whole support of my family and friends. I was so lucky to have that. Some people going through the same transition don’t and have a much bigger mountain to climb emotionally.”

Looking back now on the difference she feels after transitioning, she told us, “I feel complete and the happiest I have been in a very long time. I have had nothing but positive reactions, so I have been lucky. I know not everyone receives the same reaction, sadly.”

After an eight-month career break to focus on her transition, Emily joined Team NWAS answering 999 calls. She told us, “NWAS was my first job as Emily, so I wasn’t sure what to expect. From my very first day of training, I was treated like everyone else. That’s all I could have asked for. The inclusive friendly atmosphere that the Education Team created, made it a safe space for me.

Along with my colleagues, who I trained with, they were nothing but supportive.”

When we asked Emily about any barriers she has faced, be that personal or at work, she said, “The biggest obstacle for me was wearing a wig. I just couldn’t get used to it and felt it took away my natural face shape and was very itchy. I made the decision halfway through my training to stop wearing one and to have a short style until my own hair grows. I remember the first day I came in not wearing the wig. I was so nervous. However, I was instantly put at ease by the reactions. This has followed throughout my training in EOC.

“NWAS truly is the most inclusive organisation I have worked in. The support in place for staff is amazing. I am proud to work for them.”

Although Emily is accepted at work, she feels the trans community is, to this day, still discriminated against. She explained, “I chose to share my story because it’s important to raise awareness. There has been a lot of negativity lately regarding the trans community which can cause a ripple effect. It’s about putting positivity back out there to counteract that negativity.”

Meet one of the bravest 14-year-olds in the North West

Operations Support Administrator Hazel Tracey’s life was turned upside down last year when her daughter, Mia, was diagnosed with two extremely rare lifethreatening conditions. Hazel is sharing her story to raise awareness of bone marrow registers and the difference you can make in somebody’s life by signing up to one.

In May 2022, Hazel noticed her daughter Mia was not acting herself. She told us, “She was tired all the time which at first, I thought is normal for a 14-year-old, but she then started to bruise easily so I took her to the doctors. They ran blood tests and after additional tests, Mia was diagnosed with severe aplastic anaemia. She went from being a book-loving teenager to being too tired to even read a chapter.”

Severe aplastic anaemia is a rare and life-threatening blood disorder caused by the bone marrow not functioning properly. The condition is so rare that up to only two in one million people have it. In some cases, aplastic anaemia can be controlled using medications and blood transfusions. Unfortunately for Mia, her diagnosis is severe and, with the additional diagnosis of paroxysmal nocturnal haemoglobinuria (PNH), another rare, life-threatening disease of the blood, which she was diagnosed with in December last year, she will need more intensive treatments.

Hazel said, “Currently, Mia is transfusion dependant, which means she has been in and out of hospital since October last year for platelet and blood transfusions. But this is only a temporary solution, Mia desperately needs a bone marrow transplant. If a donor is found, Mia will undergo either chemotherapy which will help her body get ready for transplant. If not, we will have to explore other limited options.”

In children, a transplant can be curative much of the time. Mia’s mum, dad and little sister were not a match, so they are now looking to the donation register for a stranger’s

match. However, the register of donors is very limited. Hazel explains, “Not many people are aware of the bone marrow donor register and how easy it is to join. By simply sending in a cheek swab, you will be told if you are eligible to join the register. Statistics show that in 90% of cases, donating bone marrow is just the same as giving blood. It’s not as scary as what you might think. My daughter is now doing everything she can to raise awareness and hopes that she can encourage at least one person to join the donation register to help people in similar situations to her.”

Mia has taken to social media, spoken to her school and her family’s employers to shine a light on her condition, and raise much-needed awareness.

Just four months later, Mia’s family received the call they had been waiting for, a match had been found. Hazel said, “In late February we got a call to say not only had they found a match but they had four matches, all from complete strangers! We were over the moon. They chose the best match and after extensive checks Mia had her bone marrow transplant on the 10 March. It’s been tough on her but she’s now on the road to recovery.”

Hazel said, “Mia has been amazing throughout. She is such a fighter. She has her down days, but she is determined to get better. I have reached out to my colleagues to ask them to consider joining the register. Everyone at work has been so supportive, especially my manager. I can’t thank them enough.”

For more information about the bone marrow donation register, visit antonynolan.org and dkms.org.uk.

Asperger’s Syndrome.

Many famous people have Asperger’s: Microsoft inventor Bill Gates, Pokemon creator Satoshi Tajiri, actor Sir Anthony Hopkins and activist Greta Thunberg. World expert on Asperger’s Professor Tony Attwood describes it as different, not defective, like“being left-handed.”

More than one in 100 people are living in the UK with autism including Asperger’s Syndrome, with many more going undiagnosed. Often misunderstood and rejected, those with the condition can experience severe loneliness and isolation.

Consultant Clinical Psychologist Frank Chapman from Mersey Care NHS Foundation Trust says “Most of us learn the rules about how we communicate and interact and use them instinctively. We take a cue from others about how to express ourselves – through facial expressions, hand gestures, how close we stand to someone when we are talking.

“Someone with Asperger’s Syndrome can’t always read what others are thinking. It is not that they don’t care, quite the opposite. They know the rules but not how to apply them, and they worry constantly about getting them wrong.”

Masking is commonly used by people with Asperger’s and is compared by leading expert on Autism, Professor Attwood, to being on the stage all the time which he says is exhausting. “You have your role and your script and for that individual, they fear the mask must never come away because those who see it may not like the person who it reveals. This leads to anxiety and depression and the feeling that the inner me is so bad that I must hide it.”

Living with Asperger’s - Alan’s story

Alan is a paramedic based at Heswall ambulance station. He has been part of an ambulance crew for 18 years, his first four years spent as an emergency medical technician. Alan was diagnosed with Asperger’s Syndrome at the age of 47. It was in 2020 just before the pandemic hit.

“I was aware something was different to me than my peers in my teenage years. At school, I got easy questions wrong and difficult questions right. I found socialisation difficult, and I had few friends as I would struggle with social interactions. I was constantly anxious every day to the point it was crippling. I would mask to try and fit in, observe and watch behaviours and emulate them.”

Alan’s behaviours continued through adulthood but were magnified by extreme anxiety. There were milestones in Alan’s life he came across that would make him question his differences. Such as when he worked at a local hospital and a colleague’s child was diagnosed and he recognised some of their behaviours in himself.

It was only when Alan’s daughter came along and was diagnosed with Asperger’s at the age of four did Alan look to get a diagnosis for himself. He spoke to his GP who started him on his diagnosis journey which took over two years.

“I could see certain behaviours in my daughter that I could relate to. She has extreme anxiety at such a small age. My wife took it hard as for years she just thought our daughter took after me and was her dad’s daughter. She

FIVE THINGS

Five things you can see, describe one thing to yourself.

Four things you can hear, and describe one thing to yourself.

Three things you can touch, describe one thing to yourself.

Two things you can smell, describe one thing to yourself.

One thing you can taste, describe it to yourself.

has, however, been my pillar of support.

“Being diagnosed at 47 at the time gave me rationale and relief. Then I went on a bit of a downward spiral blaming myself for my daughter’s diagnosis. As time has progressed, I have got better at coping with that element.

“My behaviours are me. I like order, I still line the cups up in cabinet. The blinds and ornaments have to be a certain way. I find social interactions just as hard as I ever have, and I tend to listen to conversations and don’t join in. I feel comfortable with only a select few people.”

When it comes to talking about his role, Alan believes being a paramedic helps him with his Asperger’s. “I like routine and it is almost as if in my job I have a script that makes me feel completely comfortable and at ease.

“My managers and colleagues have been a great support since finding out about my diagnosis. They have tried their best to understand Asperger’s Syndrome. I would like to thank Newly Qualified Paramedic Siobhan Deeley, Emergency Medical Technician 1 Emily Harwood, Senior Paramedic Team Leaders Bex Gibbs and Robbie Cameron for helping me and supporting me through it.

“I am now looking at having a work health passport in place which identifies my trigger points and strategies to help. If I am feeling overwhelmed and need a few minutes out, I can take it to practice some techniques to help calm my anxiety.”

VISUALISATION

Try and think of a place you are happy and that you associate with a good memory and put yourself in that moment.

What can you see / hear / smell / touch / taste?

If you would like support, the National Autistic Society provides information about Asperger’s Syndromeautism.org.uk yourself.

Alan shares two tools he uses to help with anxiety to bring him into the present moment:

Finding love in the service.

Training and working as a paramedic is an emotional and physical journey, but imagine finding your one true love along the way to guide and support you through your experiences.

When Shelley Crook embarked on her paramedic training in 2019, after working as a health care assistant in the NHS, she didn’t imagine just four years later she’d have found the love of her life on the job. But in that time, she’s qualified as a paramedic, experienced personal struggles, covid barriers, raised two children from previous relationships and finally welcomed a new born baby girl with partner and fellow paramedic, Ian Williams.

It’s fair to say, when we spoke to the pair, they are definitely in-sync. When asked separately how they felt about each other and their relationship, they gave identical answers, saying: “You know when you watch a romantic comedy, and wonder if relationships ever work out like that? Well, it turns out they do, we just laugh at everything, it’s easy, simple and flows perfectly. We love the bones of each other.

But how did love’s young dream begin in the midst of working a demanding role where saving lives in urgent situations occur every shift? Shelley and Ian walk us down their very own ‘yellow brick road’.

Shelley says: “I first met him on placement. As students we were teamed up with a paramedic and naturally I was really nervous. When introduced to Ian, he was quite reserved and didn’t say much, it absolutely was not love at first sight!” Shelley explains with a laugh:

“It turned out, after just one shift together, Ian was really supportive and encouraged me to keep in touch during my training if I needed any advice or guidance. Ian then became my mentor towards the end of my first year and into my second.”

Once qualified, Shelley began working the odd shift with Ian every few months. Ian fondly recalls that once they began working together, he quickly developed feelings

for Shelley as their relationship grew as friends and work colleagues. It seems, the first push towards dating was all down to Shelley’s teenage daughter from a previous marriage who announced one day, “Mum, you really need to go on a date with Ian and stop friend-zoning him!”

With Shelley’s teenage daughter and Ian’s young son, acceptance of the new relationship was really important to them both. Shelley says, “Ian quickly became a trusted father figure to my daughter, he’s so family-focused, we both have great relationships with each other’s children.”

Fast forward to January 2022, the pair were delighted to discover they were pregnant with their first child together, after Shelley experienced a miscarriage a few months before. Delighted to welcome a new member to the fold, little Arabella was born. Now six months old, Shelley is enjoying maternity leave with the help of “brilliant dad” Ian.

Speaking on what it’s like to work and live with a fellow paramedic, Shelley explained: “As I’m relatively new to the role compared to Ian, there are things I’ve not done yet, not seen or experienced and it’s nice to be able to come home and discuss the good, bad and pressured days. I get to play out scenarios and offload onto someone who knows exactly how I feel. It’s nice to have someone who knows how to manage any post-traumatic situations too.”

A tale of three strangers.

When a festive family trip, turned in to an unexpected life-threatening event, it was the efforts of fast-acting by-standers, a firefighter, a former first responder and a public-access defibrillator that saved the life of a young, fit and healthy mum.

In late November 2022, an excited family with a young daughter venture out to Clitheroe to see the Christmas lights, an annual much-loved event that no-one would have expected to end in a crisis. We speak to survivor Nicola Chadwick, Lancashire firefighter Chris Archer and former CFR Gordon Fishlock about that winter evening and the importance of the Chain of Survival.

Nicola explains: “We’d had a lovely evening and were heading back to the car when I suddenly collapsed. I am a non-smoker, non-drinker, young and active so this was completely unexpected. My partner thought I’d fainted and put me in the recovery position.”

As Nicola’s partner tended to their daughter, by-standers swooped in to support Nicola. A lady noticed very quickly that Nicola’s breathing had stopped and began CPR. As more people gathered to help, locals took turns giving CPR while an emergency 999 call was made. The heroic efforts of locals began the first link in the survival chain. What followed, is a chance encounter that saw former CFR (Community First Responder) Gordon and firefighter, Chris pass by the scene, as Nicola lay unconscious.

Gordon says: “As I came to Castle Gate there was someone laid in the road with several people attending. As I had been a First Responder for the ambulance service, I stopped to see if I could help. CPR was being applied and the helpers were taking instructions from control. I noticed someone had collected the nearest defibrillator from the old phone kiosk and left it on the pavement. This was my chance to get involved. I quickly placed the defib pads and a shock was given followed by more CPR.”

Chris says: “I’d been dropping some stuff off at my sister’s shop, where Nicola had collapsed directly outside of. I arrived on scene and identified myself as a firefighter who could assist. An ex first responder, who I now know to be Gordon, was preparing to apply the defib pads. After about a minute, I was asked to take over the compressions.

Nicola began showing positive signs in relation to agonal breathing but still not breathing on her own.

Ambulance crews arrived moments later with both Gordon and Chris commenting that the paramedic was “exceptional, assertive and took control of the scene”. Several attempts to revive Nicola including shocks and continued compressions saw short bursts of returned breathing but once in the ambulance, all involved at the scene were unaware of what became of the young mum. Following further shocks, Nicola regained consciousness. She says, “I was in hospital for 11 days, under sedation for the first two. After many tests there is still no clear reason as to why I had a cardiac arrest but have been fitted with an ICD pacemaker to keep me safe. Amazingly I have made a full recovery.”

Nicola wanted to thank the people that helped save her life and took to Facebook in a bid to find them. The power of social media came through and Nicola was able to meet Gordon, Chris and other by-standers to thank them personally.

Nicola added: “I feel so lucky that all these people were there that night, I cannot stress enough the importance of learning CPR and having access to community defibrillators. There will never be enough words to thank all the people that helped me that day. My family and I will be grateful to them forever.”

Chris added:

“It warms my heart to know her little girl still has her mum today and that we, as strangers, had something to do with that. It’s something that will stay with me forever.”