Reigniting a fight for change

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

NHS Volunteering at Expo

Yesterday was Health and Care Innovation Expo – a wonderful opportunity to be amongst others who want to utilise innovation, good practice and technology to improve experiences for service users and to ensure sustainability for the NHS.

YSA planning ExpoUntil the end of the day, I didn’t have much chance to sit down and reflect, record or think about next steps. When I did get those few moments of time, I realised (a) that there were so many useful conversation and learning opportunities, and (b) that when you sit down, you realise that Expo is tiring, and you must have walked further than you realised!

The project I am currently working on, as a Youth Social Advisor for NHS England, aims to improve the quantity and quality of youth volunteering in the NHS. We, as people who regularly volunteer, have truly recognised the invaluable positive impact that it can have on ourselves as individuals and on others. Today re-emphasised, just how many other positive impacts it can have. It isn’t just the volunteer that reaps the rewards, it can also be the patient, the family, the health care professionals, management teams, the future NHS workforce (the list continues….). There really are far wider impacts that volunteering roles can have. As we move towards long term planning and sustainability for the NHS, it really does seem vital that young people can volunteer.

To aim for a long-term plan, the future generation of professionals need to have opportunities to gain insight from the NHS, to develop skills and strategies. To experience a positive journey as a volunteer. These aspects may shape their choice for future career prospects and may ultimately lead to an informed and empowered NHS workforce in the near future.

 

@Adsthepoet 3rd Memorial Talk

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…

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…

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.

 

 

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

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.