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  • June Okochi

Mentoring Children and Young People living with Sickle Cell

The model I created will be a lasting legacy

In August 2017, the NHS commissioned myself and 2 other amazing humans I work with (through the national charity) to design and develop a model of care that is primarily focused on mentoring children and young people (C&YP) between the ages of 10-24 living with sickle cell. It was commissioned specifically in the boroughs of City of London and Hackney. For someone who thrives on change, my life choices and goals have been primarily my responsibility but I know I have a significant indecisive personality when it comes to taking major risks or making a difficult decision. So often times, when I am faced with major ambivalence, I would prefer people I trust (mentors if you like) to make those decisions for me or at least support and lead me down the path of clarity. Mentoring Think about who a mentor is to you. People have so many definitions of who a mentor is and what mentoring means to them. I have all kinds of mentors. Some of the approaches are formal and structured (specifically my career mentors) others probably just adhoc and informal- many of the people I look up to as mentors are actually totally oblivious of the level of inspiration they fill me with. Some, close loved ones. But heath mentoring? What is that?

The Department of Health (DoH) defines health mentoring as:

…a relationship between an experienced and a less experienced person in which the mentor provides guidance, advice, support and feedback to the mentee. It can be a focused, planned relationship where the mentor assists the mentee achieve greater self-awareness, identify and plan alternatives and initiate and evaluate actions.

Mentoring relationships have a clear start, evolution and ending. Health mentoring has become a recommended social model of care endorsed by Public Health England, one primarily aimed at peer support. The model highlights this type of peer support promotes better health and wellbeing for people living with long-term health conditions but the evidence behind the outcomes is still very theoretical. That said, there are small pockets of research going on globally to identify and pin down the benefits of the model.

It’s a difficult one to isolate health benefits (singularly) to just because people are usually healthy or well due to multi factorial reasons. (see HRQoL) However, it is usually considered an enhancer to a combination of a number of other coping strategies. Now one of the things I enjoy about life is creating from scratch. Creativity brings out a number of different emotions for me. I enjoy being given blank pieces of paper to formulate, to develop. It’s why I enjoy jobs no one has ever done before. I make it mine and I create strategies (that work) for a population and deliver them. It’s a passion of mine and when there is passion, you are likely to succeed, if you are driven.

I believe everyone can be anything as long as they have some level of logical reasoning and creativity. So redesigning and transforming services, developing strategies/ policies and implementing them is something I have been doing for several years in career and so I was excited after being approached to look out for this (health mentoring) model.

And because it was a fairly new model, there was essentially a need to make this model become a ‘proof of concept’, one acceptable to the health care commissioners and funders, to enable them see the value for money and return on investment, the importance of sustainability and the reduction in service demands for heamoglobinoptahy services - but more importantly, the outcomes for C&YP and their parents who are at the center of it all. So my team and I got to work and essentially designed a model. I was made lead mentor for the programme. I had the leadership skills but I didn’t have a template to work with. There wasn’t a lot on the Internet or in reality to provide an opportunity to replicate something, anything, so it was always going to be a case of ‘inventing the wheel’.

We soon began set up processes, policies and operating procedures. We designed our model of care including articulating quite clearly the outcomes we wanted to see from these C&YP who suffer the same condition as us. Their goals and their well-being was our priority.

With my experience of working with the NHS and the combined experiences of my two colleagues who had legal and business development backgrounds respectively and a wealth of experience mentoring young people, we knew we could do it. We started to mentor children and young people in face-to-face sessions. Sometimes jointly with their parents specifically the under 15s.

It soon became an issue of capacity given that I work full time, run other projects nationally and personally, run my charity and of course and more importantly, I have a life outside all these things. I started to resign from different roles and functions that I was involved with before the work started. For example, I resigned from being the volunteer coordinator for the Sickle Cell Society, a role I led on (voluntarily) for more than 2 years. I couldn’t support a cause I cared much about- led by Action4London - a cause that supports the most vulnerable communities in London and I also had to take a back seat from the Board of my support group, Solace. I left my social book club, stopped attending the poetry cafe, reduced creativity, socialising began to decline, I actually travelled less.

Even time with my partner was compromised but he is my biggest encourager so he didn’t mind. He just nudges in the background to keep going recognising when he needs to stop me for my own good.

Commitment; I was committed to making the pilot a success- and essentially the measure of success was very much focused on the happiness, considerably good health, better quality of life and achievement of goals for these kids.

The business development side was important but secondary. I mean it became primary towards the later part of the year when other boroughs started requesting business cases and we had to complete the evaluation report for commissioners. And because each child and young person are so different with very unique health challenges and life goals, it was exciting yet interesting learning about their challenges, their resilience and determination to be better at everything and of course I had to create different techniques for each and every one of them.

To be honest, these upcoming millennials are incredibly brilliant. They amaze me. They taught me a lot about my own self. But considering how different they all are, I realised the golden thread was that they all just wanted to stay well and pain free and ultimately, have a better quality of life.

Our mutual health experiences was what I used as a model for the programme and I hoped that would enable them see that life is totally what you make it to be. Anyway, so I started squeezing sessions in after work most weekdays and mentoring full time on the weekends. It soon became incredibly important that I had to adopt a booking system to stay organized to be able to joggle work, my children (the mentees) the business development side of things, my own health and well-being, my personal and social relationships, travel, my self-development, projects and other personal pursuits. 24 hours in a day was never enough to do all my work. The benefit from this was that I became super organised. All that admin after a session, ah! There is nothing as dreadful as administration when you just need to practice. I am a writer, I shouldn’t complain, but admin is boring! However, when you are dealing with children, it’s absolutely necessary and paramount – safeguarding kids is one of my many values.

A mentoring meeting is typically held in a café, library, and other social hubs (usually mutually convenient for both parties) over coffee or hot chocolate, cake and sometimes food. Sometimes I would visit my mentees in hospital when they are unwell. Other times, but very rarely, in their homes with the request of their parents when they are too unwell to make it out, and when the weather becomes unpleasant, we do virtual. Now, living with sickle cell has meant that there were times growing up where I couldn’t be around humans a lot just because I was either too ill or in a lot of pain to stand company. This resulted in a level of isolation and a need to just not want to be around people as much. A part of me still remains that person.

Many children living with an illness feel extremely isolated and generally always don’t tend to be as sociable as other kids which infact could generally have an impact on their self-confidence growing up and we know what a lack of self-confidence does to a child and the impact it can have on them as adults.

So one of my strategies recognising this was an issue with some of the kids was to develop a great level of trust and rapport with all of them to enable them feel comfortable to discuss whatever they felt comfortable to discuss with me, I had to find ways to manage this and one of them meant providing equal and unlimited access to contact me anytime they had to talk – and I am glad they could do so.

I have currently delivered over 200 sessions, a combination of face to face sessions and virtual sessions. As a team, we have probably delivered an estimated 500/600 sessions over the last 12 months. Its absolutely incredible. I mean I shared tips, offered information, advice and self-management programmes. I provided support to them by going to their schools and colleges to educate their tutors and teachers; I supported the older ones with housing applications. I helped them with their UCAS applications, their university dissertations, their CVs, apprenticeships and volunteering applications, I coached them on interviewing skills, I visited them in hospital when they were unwell, provided moral support and tried to uplift them when their morale was rock bottom. I shared everything within my professional and personal boundaries with them. I spoke to airlines on their behalf, organisations and companies.

I got calls from their parents asking for all sorts of guidance for them, whether it was a gap year abroad, or a long haul trip to the Caribbean and how to deal with that or just a call from their parents to say they are unwell and needed to speak to me. I wrote to doctors and nurses on their behalf and advocated for them to authorities for whatever issues they had.

I told them to be kind always, it’s the best karma in the world, to be resilient, to work only within the constraints of their health or pain levels- to maintain an ‘energy bank’ because we are not genetically formed like others. I encouraged them to be kind to themselves, treat themselves right at all times. I told them education was everything and learning wasn’t only constrained to schools and there are other non-conventional ways of learning.

I told them its was very important for them to be sickle health literate and that also meant it could be a path and a strong focus for them to grow. I encouraged them to understand their triggers, avoid them and learn how to cope if they are mildly unwell. I told them health was their number one priority and therefore they cannot miss hospital appointments and have to be compliant with their medication, treatment and doctor’s orders. That without that basic practicality, they may miss a small window of opportunity to be well and do all the amazing things they want to do.

I told them its perfectly okay to cancel social engagements if they were unwell, that they didn’t need to please their friends or try to impress boys or girls for attention and that its ok to be selfish for their own wellbeing because hell sakes, they already have a lot on their plates. I taught them to share with others specifically by showing empathy for other kids who may be passing through the same or different health challenges as them. I taught them to be patient with their parents as its never equally easy for parents who look after a sick child.

I advised them of the importance of the stories they tell themselves and how that could provide implicit limitations or a world of possibilities for them. I told them they could in turn mentor the younger generation after them. But ultimately, with love in my heart, silently, in my own space, I would pray for their wellbeing, good health and for their successes- whatever they define as success. My other 2 colleagues were also just simply spectacular to their mentees – probably different styles but uniquely beautiful.

We got an overwhelming positive response from the C&YP and their parents about the programme.

Word soon spread across East London about the success of the model through specialist doctors and nurses, parents, the kids and young people, social workers, psychologists, schools and colleges etc and therefore we moved from not just the borough of City of London and Hackney but also all 7 boroughs in East London and even flowed geographically to Essex, Hertfordshire, South London and North Central London. We accepted referrals from all London boroughs. Even a couple of requests to be mentored came from the United States, which we obviously had to decline. The best outcomes was to see their sickle hospitalisation rates decreased, they had less sickle crisis, less missed school days, less bed days in hospital compared to previously, increased engagement with services.

Over the last year, I have mentored around 15 of them – maybe 13 consistently, my youngest 12 and my oldest now 25–(I actually received 2 referrals this week) and am I proud or what? I am beyond proud of these C&YP because what they have achieved despite their health challenges is incredible. I have watched them grow. I have seen them fight. After work a few days ago, walking home, I spoke to them individually over the phone, and wished them a good festive holiday, whilst reflecting on the major achievements and challenges they have had in 2018. It brought tears of joy and pride to my eyes. I told them to be proud of themselves. It’s not something I expect many people to understand. Dealing with pain and suffering, as an adult is never great nor ideal but we find ways of coping with life challenges because:

· Age Resilience

· Maturity of the mind

· Independence Life experience

Acceptance that challenges will come. For some, faith Others, love and support from family, loved ones and whatever works for most adults. But as a child, where do you start? We work so hard as parents, aunts, god-parents, grand-parents whatever to consistently preserve the innocence of children and provide the best life for them by showing them unconditional love and an affinity of care. We don’t want them to grow up quickly as a result of any sort of painful experience they may pass through. Because the truth is that they probably will if they did.

But you find children with genetic conditions, life threatening health conditions like cancers and other horrible illnesses who go through hell, fighting for their lives – dealing with challenges, they never signed up for or are never really mentally ready for and you as a parent or someone who loves them so unconditionally can feel totally helpless because you have lost absolute control of that self-preservation of their innocence, the ability to protect them from pain and suffering is negated right?

I mean I couldn’t even understand why I was sick a lot as a child, why I was in a lot of pain. I felt life was never worth living and I was only created to suffer a life of pain. As an adult, it feels sad thinking about it. The entire thing never made sense to me. My parents understood some of the issues I faced but it was never going to be a case of relatability by lived experience so supporting me through my pain was incredibly hard because they didn’t understand. No one did and therefore there was really no way they could help me – I mean they understood my triggers and protected me from perceived risks and to an extent, I had ‘cotton wool over my eyes’ but it was not their bodies going through pain so really how much could they really do?

My care was predominantly medicalised. I mean if I understood half the things I know now about my health then I probably would have had a better time navigating through my education and coping a lot more as a child. If I had a health mentor, one with lived experience, oh bless my soul…

But I am grateful for a father who mentally psyched me to look beyond my health challenges. Imagine having to copy and paste my life experience, model it into a structured guide and provide it as a driving manual to these kids, to shape them for the things that are yet to come, to help them build their resilience, to enable them see life beyond sickle cell, beyond hospital walls, beyond pain- that of course they use that sense of pain and suffering and turn it into an infinite well of strength that whatever, I mean whatever they face in this world, that they can rise above it and keep achieving.

I don’t come to them telling them how great my life is. I tell them about my challenges, every layer of it and how I navigated through them. I share the fact that I stayed well and crisis free for many years, that it made me career driven, I travelled, I started my business, my charity and did so many things in society that I am incredibly proud of, and that it’s absolutely do-able if they find what works for them and I share little tips and tricks with them but I also tell them about the medical complications I have experienced as a result of this bloody condition. No pun intended there. No need being all flowery about the reality. What makes everything beautiful and makes my heart light up is when they send me these little text messages outlining their achievements, their growth, their resilience after a bad hit. That’s what I thrive on.

The odd texts saying:

June, I got 3 offers to university! I have passed my driving test. I got nominated to be a public speaker at Ted. I got a job in Parliament as an intern. I coach other students June and thanks for referring me to that NLP course. Thank you for introducing me to xx. They helped me a lot. I have been well for a whole year – no hospitalisation. Hurray! I have had mild pain, but I have managed it at home without going in. I haven’t missed any of my medical appointments.

I feel confident talking with my consultants about my care. I am able to travel without fear and I have been to xx number of countries so far, thank you!

One of them actually wrote a blog about her phobia of going away and being on a plane and actually said she couldn’t have done it without me. I cried! I had a first class June. Yes Lord! (millennials are freaking smart) I am able to manage my chronic pain and have mustered the confidence and made the first step to go out in the last 4 weeks. I did a walk for charity at college and I raised xx for xx charity. I got an offer from college to go to Belize or New York to do work experience.

I got a job after you worked on my CV. My confidence is better and I feel empowered to manage my sickle better. and so on and so on and so forth. The achievements are endless and when you have sickle, one small achievement is worth everything. Getting out of bed for some is a huge deal.

I tell them all the credit is theirs alone. We get messages too from parents, Teachers, Nurses, Doctors But above and beyond developing this model and leading on it (which quite frankly I could have done as a consultant in a different situation and be completely detached from it) is the rewarding feeling of fulfilment, pride and honour mentoring these C&YP and watching them grow from strength to strength, achieving, some having less sickle crisis, others more empowered to cope with it, all of them doing so brilliantly with their goals and their lives as they mould it. When I was appointed as lead mentor, I had a slight anxiety about my involvement with children (particularly the teenagers) given that I had never raised one. I am not a parent. I am just an aunt and a god-mother. Moreover, as much as the generational differences are not as stark as I thought, I feared for reliability. They wont budge because they consider anyone remotely older than them ‘ancient’. But they all warmed up. I carry a motto that we should all be open to learning from each other regardless of age. There was mutual respect.

I depended on a few comforts: that I love children, I have nieces and nephews and several god-children whom I love so much.

That I could support young people through a journey I have lived and share everything I know. That I worked with crazy teenagers in London for a few years earlier on in my career (difficult ones too who were mostly offending and reoffends) That I support a friend to co-run a charity to support BME teenage students who are aspiring medical doctors. And that I formally coach and mentor upcoming managers in career.

Quite dynamic experiences. So when I logically travelled through those accomplishments, which of course were challenging without a doubt and coupled with the fact that I had formally trained as a coach and mentor, my anxiety died a natural death.

Now, I share all of this not to feed my ego, to self-gratify or seek your praise to be commended because it has never been about me. Its about the young ones I serve.

What has been ABSOLUTELY rewarding other than the 60 plus children and young people who have entered the programme is the fact that I was presented with an opportunity to use a condition that has affected and impacted potentially every aspect of my life for 36 years, the ability to turn it around on its face and inspire (I hope) many children, young people and their families to just live a life of happiness, to not view a health condition as a boundary that stops them from achieving anything, to strive towards a greater quality of life, to maintain good mental and physical health and to achieve their life goals – education being the foundation of their lives because many haven’t had the opportunity to complete their basic education because they have been too unwell to. That’s exactly what I have always wanted.

I have an infinite desire to give more, to aid, to share, to support.

And beyond the mundane and material accomplishments, has to be the profound and life changing. This is one on the list my legacies, one, I will hold dear to me even when it’s all over. The sense that I could share all I had. That I could give something to a young person to shape them regardless of my perceived and actual limitations is worth everything. Because if we all don’t recognise the need to change this crazy world in any little way we can, make another human being's life even better, then we live without purpose.

I am thankful.

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