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Reigniting a fight for change

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It has been seven years since I last wrote a blog. I’ve meant to reflect on my journey as a newly qualified nurse for some time. Every time I started, it just didn’t feel right – there was a pressure to enter this chapter as a perfect version of me, with no vulnerabilities or previous motivations exposed. I wanted a fresh start, no expectations, no preconceptions.

I tried to keep my head down, but my values for patient advocacy keep creeping up and seeping out. Over a year in, I feel energised to fight for quality, for improvements, development and to celebrate excellence, prioritising patient care and staff wellbeing.

My platform as a young person improving health care services was incredible and I achieved so much. Sometimes widespread policy change feels easier to achieve than being on the ground trying to show your face above the precipice. Change is slow and much more difficult.

This is my pledge to continue to harness the energised committed kind health care professionals we have and look after them.

To keep advocating for staff and patients.

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.” -Mother Teresa

Happy 70th Birthday to the NHS!

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The NHS…. Its 70th Birthday? Well that is something to celebrate, something for our Country to have pride in.
I was fortunate to receive an invitation to attend the service at Westminster Abbey this morning – it was the most beautiful service and must admit that I am still in awe at the pure beauty that Westminster Abbey held. Today was so special, a pure example of the gratitude we hold for having a National Health Service thGroup outside with Simon Stevensat is free at the point of entry.
Testimonials represented the appreciation and highlighted just how much a difference the NHS can make to people. I believe there were elements that resonated with everyone. They certainly resonated with me. I couldn’t have more pride for being invited alongside some incredible staff, volunteers and friends.
The NHS has transformed my life, whether that is with regards to the 21 years as a service user or my personal journey through participation, patient voice and volunteering. That life that I lead now, wouldn’t exist if it wasn’t for the NHS. I couldn’t be more grateful for those people who continuously push for patient voice to help the NHS to live to its expectation and to continue to evolve alongside us.

Kath, Lucy and IIIn the Abbey - NHSYFTom, Rowan and I

I pledge to continue to strive to represent and provide a platform for children and young people to have their say, for them to have the opportunity to develop just as I have. Happy 70th Birthday to the NHS!

My Social Identity through Twitter

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People create a online social identity of the person they want to portray to the world, an identity that can convey whatever meaning they wish. There are pros and cons to this across many different aspects and I certainly have experienced both. Today it is the positives.

Over the last few weeks it has become more apparent to me that alongside many others, those close to me in the ‘expert patient,’ ‘patient leader,’ ‘advisor’ roles use this far more than people realise.  There are times when we strive to do everything we can to promote patient voice because we are so passionate at reaching out and making a difference. Those stories are the ones we tell, the stories that explain our achievements and often ‘conveniently’ forget a large proportion of the negatives. We may not always acknowledge the challenge nor the wider holistic issues that are continuing around us.

I try to convey the positive message as much as possible, the benefit I have is that my social identity through twitter reminds me of my positive events, the achievements I never believed I would have. The days where I have achieved something and made a real difference. The last few weeks have been testing to say the least but what I can take from that is how I have continued to make more and more achievements, increasing my opportunities and development tenfold.

This evening I take my step into true independence, I was halfway there but needed a nudge to make the full jump – I have to leave Somerset behind for a minimum of a month. I have to take the step to balance my own psychological & physical needs as a priority and I cannot do that without a level of separation – I need to not have the distractions that are based there, I need to take time to grieve the losses I have had this year and to overcome recent challenges. I began this step today in an effort to nurture myself and prioritise self care. It turns out that my first plane journey since I was about 6 years old, taught me the true meaning of putting your own oxygen mask on first. My dog and I

Some personal and some voluntary roles I am taking a short break from (particularly those in the South West). This also means no more photos of my best friend #PoppyDog as I have had to leave her in Somerset for the time being. 

I will always want to make a difference, and this will continue – I hold onto my social identity as portrayed by twitter as it reminds me of the changes I have made as an individual, the memories and the continuous progress. One of my proudest moments this year being, the utter privilege to speak at the HCA Forum in March – seeing just how much of a role there is to improve young adult experience. But also looking at my standing – I stood to give that presentation. This is the first time I have ever managed to deliver a presentation in standing and seeing that photo make me proud – beyond proud. It is an example of the hours that I have had to put into my continuing neuro rehabilitation. The aspects that get me there may not always be shown the photos shown of #NHS1000miles potentially don’t show, the grazed knees, the crawling I still use to navigate the rough terrain on cliffs, the bumshuffling to get down 100s of steps nor the handhold/catching I still need at certain points. I know the effort it takes for me to get there and that is the story I hold in my heart as a reminder, but my social identity that I created via twitter is there for me to remember and celebrate with you the achievements whilst I take time to reflect on the harder moments.

 The moment that will further carve my social identity links to this very special week of #NHS70, it’s a special and means more a lot to me. I am invited for the NHS70 Westminster Abbey service that I am beyond privileged to be able to attend. I am putting in place protective factors, but this upcoming day is special – it is a pinnacle moment for me – something that in months and years to come I can look back at as is stored in my social identity. The identity I feel privileged to share with you.

@Adsthepoet 3rd Memorial Talk

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Over the last few days I have felt beyond privileged to be in the company of some rather incredible individuals that all support helping the NHS to be as influential as possible – meeting these people face-to-face meant so much to me. I may be attending as a young person but in reality I feel that I am in a community of people that share the same values – sometimes when those around me are also so dedicated about promoting good practice I feel like I don’t need to be that ‘young person’ I can in fact be me amongst a room of friends and colleagues. After speaking to Rob Webster I realized we are all representing the ‘patient’ on some level. Yesterday was an example where I felt no negativity, it was simply pure constructive positivity about how we can move forward, together. There is still so much to do but we can manage this by utilizing a positive approach.

The very special Adam Bojelan is responsible for connecting people and his legacy still continues to spread. He is the person that truly touched my heart, when I started to care about the patients voice. Dr Emily Harrop led the 3rd memorial talk, representing Helen & Douglas House, whilst Kath Evans chaired it and initially asked how we knew Adam? This was simple for me – he was the person that inspired and provided me with the confidence to promote patient involvement. I always heard from Kath Evans and many others just what an incredible young man he was and how his incredible poems really did reflect what we all thought – the Brit awarded Adam could convey such power with his poetic words and thoughts, and his writing continues to do so.

 Ads the Poet

Dr Emily Harrop spoke about Palliative care and how the work that both Dr Emily and Zoe Bojelan fed into the NICE guidelines. The way guidelines are presented definitely does make a difference. I am someone who quite enjoys reading the plain text however when leaving the talk, I reflected and realized that the emotive aspects were what made me engage. Hearing the simplicity of the statement from a child saying that providing some help with the pain meant he could enjoy his cuddles again towards the end of life, really tugged at a heart string. This approach is something I plan to take forwards. 

 

Thank you for allowing me to be part of such a special and energizing day – I pledge to continue to feed Adam’s beliefs and words into the collective ‘patient voice.’ He is fully embedded in the heart of promoting patient experience in my eyes and will continue to be so.

Link to periscope of talk  – https://t.co/kUgmDKMbqB

Mothering Sunday is more than 1 day, but an opportunity to express just how much she means to me…

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Whilst I acknowledge that every day it is important to appreciate those around you every single day, I believe it is special to have a dedicated ‘Mothers Day.’ I don’t believe that it requires any lavish gifts but I think for my mother it offers an opportunity for her to remember how valued she is, and not under-estimate how much my sister and I care about her. Those who know me, will know I am grateful for a lot, I view most endeavors as a fantastic opportunity and learning curve and will readily offer a thank you accompanied by a handshake or hug. Despite my ability to thank people, I am very similar to my mother in the way I avoid expressing sentiment…. I am the person who won’t buy a card if it has a soppy message in. The exposure of sentimental raw emotion is something I am not familiar with expressing verbally as much as I try. My friends and family know that a verbal compliment from me is high praise indeed. Mum and I - Lyme

Today is the day my mother will finally get that true appreciation, but through these written words as once again I back out of saying it to her.

The teenage version of me was polar opposite to how I am today, from naturally being a stubborn defiant teenager alongside struggling with my mental health and physical health – my relationship with everybody wasn’t straightforward. My mum stood by me and was my carer but that doesn’t mean she had it easy by any means – really didn’t. Being my carer was not easy, it meant altering her entire life and entering new territory for us both, whilst in reflection we would never change her involvement, I now realise, I definitely didn’t appreciate it at the same level as I do now.

As a young adult, I am fully aware that I don’t just share aesthetic features with my mother but I have so many similar traits and hold the same life values and beliefs. Together we are those people who have the ability to know what the other is thinking, we will turn around, simultaneously saying the exact same words. We thrive in each others company and can work alongside each other with no problems at all. We never argue as one of us will admit we are grumpy before we say something we regret and if the odd occasion occurs where we have very different opinions, we explore it and debate those  interesting views and perceptions.

When I celebrated mothers day with her a day early (yesterday), she presented me with a very special cuddly toy. I have had a tough few weeks and she knew this, so she bought me up the same toy that she bought for me when I was on a pain management course in Bath as a teenager. We were staying in flats associated with the hospital and I had refused to goWinnie out with her and I think it would be safe to say that I may not have been as polite or diplomatic as I  have learnt to be. Despite being hurt and upset she went to the Disney store and purchased me ‘Winnie the Pooh.’ I love to feel different textures so to receive him yesterday is just one example of her thoughtfulness and how well she knows me.

This last year I can truly say has been hard – it is nearly a year since I embarked on the 8 month admission that altered my life. To have an unexpected emergency admission into a London hospital was something my mother had always feared, but we had never anticipated the severity of it. To be miles away from me unable to see me but knowing I was so unwell was heartbreaking, even when I was repatriated to Reading or in neurorehab, it was still over 100 miles to get to me. It was tough for her to step back and not see me very often but during these 8 months we reestablished the amazing relationship we were destined to have. I became an independent Young Adult that happens to be her Daughter, and she became my mother rather than my carer. I still have times where I need a little help (somehow haven’t quite learnt to fit housework in yet – but it is likely that I conveniently accept her help on that one). She is always there when I need her and we have mutual respect and love for each other. The mother-daughter relationship we have is so very special and holds memories neither of  us will ever forget. These are good and bad, some have humour only we understand. Having to persevere and fight for every part of my care and treatment has strengthened our relationship and whilst I may struggle to open up and explain if I am upset, I undoubtedly know that she is there and will drop everything to be by my side whenever possible. I couldn’t ask for anything more from her.

The last year has contained numerous ups and downs for both of us, including a number of close bereavements and we therefore strive to continue to be open and honest, to do those things that mean something to us and to make memories every single day. My mum may always naturally worry about me, but is incredibly special to me and never stops me from living the life I want to lead. To grow up learning from her as my role model gives me phenomenal strength and determination that I vow to always utilise in my life. I will never forget the first time she saw me speak at an event and just how much pride she held.

Mum – thank you for being the rock that you are, never forget your value and lets continue to share  the rest of 2018 (and many more years) together, making those memories as a family unit and never holding regrets. We both have so much to give to the world and I consider it an honour to be able to call you my mother (as well as my partner in crime).

I can create my own Uni lifestyle…

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How do I balance education with health? To get an accessible room, I live with first year students – ‘freshers’ and the majority of my flat are very clear that they want to make the most out of drinking and making noise as that matters to them. When attending University, my main apprehension was that I wouldn’t ‘fit in,’ years of being self-taught and profound social anxiety made me worry I wouldn’t find people that liked me or could accept me for who I am. It is bizarre when I am representing other people, my purpose enables me to manage and function ‘normally’. But when I have to show myself as a young person with no cover, that is when I struggle.  But I don’t need to struggle…blog

Not everyone at University enjoys the social life that is encouraged and promoted, and I really don’t fit into the clubbing or drinking scene. I fought so hard to get to University that I just want to perform academically – that is #whatmatterstome. Only now am I realizing that I don’t need to feel pressured to go out or to see people every night – it does mean I don’t make the contact with friends that maintains the relationships, but I don’t want to pretend to be someone else. I am the person that needs to take time to be true to myself, I need to continue to spread my wings and accomplish the tasks that are important to me.

 

 

We are all human…

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Before I start, this blog is in no way a reflection of a specific trust or ward – it has been created from my personal experiences, but I intend to keep it general and all of it is my personal opinion, it is not linked to any specific affiliations I have with organisations. All names have been changed to protect confidentiality.

 

I so often write and document about the patient experience but what I want to do today is to acknowledge the staff perspective.

I remember arriving on a ward where I was greeted, and they wanted to know how to transfer me between beds. Nurse Sarah stood there and asked me about if I could shuffle or use the pat slide – I made a sarcastic comment that would have been quite funny for those who knew me but it lacked appropriate timing. It was clear it wasn’t the best timing and I realized that it had been taken the wrong way so apologized immediately – we spoke again afterwards, and it made sense (she was doing my nurse a favour and so hadn’t had handover as to what was wrong.

 

Nurse Sarah was on shift the next night as well, and as soon as I saw her I once again expressed my apologies and it was all forgotten. This communication was so important – we understood each other.  It was a very tough shift for the staff, but as patients we often are only aware of what is occurring in close proximity to us. Sometimes we need to take a step back and realise there is more going on than what we think.  We may hear noise or abuse but other than that, have no idea what is happening in other bays or behind closed doors.

I witnessed such a heartfelt moment and it really resonated with me the journey that staff have to go through. I know that when I show familiar staff my progress, the pride they feel can be overwhelming, they too share my success – we all have participated in the journey together.  Mine is a good story, many a time I have shared the highs and lows with staff, but others stories aren’t as positive.

When people are on end of life care, the staff are equally involved – it can be tough. It doesn’t matter how long or well you know someone, witnessing the family grieve or being the last person to sit and hold someone’s hand can be hard. I have witnessed this happen numerous times and find it hard as a patient, but when it isn’t happening in front of you, we still expect staff to carry as if nothing has happened.  They may be in a professional capacity, it doesn’t make them mechanical or indestructible, even those with the toughest of exteriors still feel emotions and need to take two minutes to digest what has happened.

 

I became aware of the deceased as heard the family grieving, it is always tough to hear and see – and it wasn’t easy for the staff either, the night was chaotic and filled with other noise and other pressing issues. Yet those nurses kept going. Sarah wasn’t my nurse but when she was continuously working non-stop and I could tell she was trying to keep going. The pressure and circumstances she was under was tough – it was not a good shift for any staff. I sat up and spoke to her as she passed me, I paused, held her hand and gave her a small bit of comfort whilst she started to shed a tear. She apologized that she was emotional and said ‘I should be comforting you, not you helping me.’ Now, for me, I would offer that to anyone – we all need that reassuring pat and those 2 minutes to pause and recalibrate.

We didn’t talk about the other patients, instead all we did was be present and feel those emotions –words aren’t needed. When something isn’t going right, it isn’t always that persons fault… sometimes we need to empathise with the work they are doing.

We are all human, we can all accidentally say the wrong thing and can all feel emotions. Next time, try and look at the situation from all perspectives – never forget that other things are happening around us.

 

What could have been a bad day…

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Everyone has different versions of a good and a bad day. For me, I believe a good day is when I can be productive, motivated, work well and most importantly, look after myself. Self-care underpins every aspect of a good day, if you get that right, then the other parts start to fall into place.

Over the last few days, as I have had a flare in my pain, it would have been so easy to stop, to lie in bed and to give in. But what does it achieve? The pain is constant however it is still at a manageable level so if I stop everything, it wins. The pain will get what it wants, I will lose strength, motivation and end up isolating myself. It will interrupt my rehab and put question on my ability to study. Now, there are times when I do need to stop everything to recover and that is completely ok but today wasn’t one of those days. Today was a day when I could still achieve things despite my discomfort.

Today, I went to give in and not do anything, but something made me pause – I remembered all my knowledge on pain management and recreated my plan for the day…. The day that was going to be unproductive, suddenly transformed.

What is important for me is to maintain a baseline of activity, to pace and keep a balance. So instead of stopping, I made the day manageable, I completed the essay but from a more comfortable position with plenty of breaks. I dedicated time to rest and relax. I contacted the ouTrainerstside world. I carried out my physio exercises and I went for a walk for #NHS1000miles. These activities are the equivalent of my baseline, but what made today different was that I made sure that I provided myself with the self-care I needed, I took breaks, I ate properly and I maintained my purpose.

Today actually turned out to be a great day, yes I’m still hurting, but no more than I was this morning. I know that carrying out physical activity won’t make my chronic pain worse as long as I am sensible. I respected my body and gave it what it needed without completely giving in. I avoided entering the viscous cycle of boom and bust. More importantly though, I created a purpose for the day and I made it a day to be proud of! Being receptive to my body and applying my personal toolkit of pain management isn’t easy and can be frustrating but today taught me a lesson, it taught me that respecting myself and providing self-care can transform my day from a physical and mental health perspective.

 

I am significantly happier this evening because the things I have dedicated my time to have been meaningful, of good quality and worth it – I would go as far to say I have been more productive than a ‘normal’ day.

Looking after yourself matters, listening to your body matters and how you feel matters.

The frustration could have taken over but instead, I still have the control and am further forward than I was this morning and ready to deal with whatever happens tomorrow.

The end of 2017 and accomplishment of pacing my activities today…

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So it is nearing the end of 2017. Usually to me the transition between years makes no difference to me. This time, it is different. So much has happened for me in 2017 that is good and bad but either way has allowed me to gain understanding, confidence and enabled me to actively promote my wellbeing – 2017 has transformed my life. Everything that has happened has played its part for a reason, and I finally think I understand and feel capable to self care and self manage my health and wellbeing.

Tonight, as the last day of the year, my family are out bowling and celebrating the New Year. Mother and I have been busy all day and together we supported my step-nan through the final hours of her end of life care in the nursing home. I came home and realized just how physically and emotionally exhausted I was… I wanted to rest but struggled to admit it. I  What was significant was that I was able to reflect on the year and say ‘actually, I can’t join you tonight – I need some rest.’ That statement is horrible to say as I always want to join in however I am so proud that I stuck with it. Today’s achievement means a lot, I am leaving 2017 knowing that I am capable of recognizing my limits and altering my activities. My whole life operates through pacing but it can be tough as often my  mind wants to do more and I have to accept I can’t do everything and I must prioritise.

It’s the first time I have felt that I care enough about my body to value it and respect it, it means I can go into 2018 on a blank slate and not in recovery mode. I know I am not superwoman but that is ok – I would rather reduce my activities so that I have time to focus on the aspects that matter to me.