Making a career transition to support another important [family] transition

This is a story about a career change moment. I have prepared for this for over 10 years, and it didn’t end the way I originally planned, yet I couldn’t be happier about where we have landed.

There are tips at the end that I hope will help fellow carers, future carers and anyone else that may be thinking of a change. In advance, thanks for reading, and for those of you who know me day to day, thanks for all the support and kindness this past 10 years.

Let’s first wind back to 2012. Top movies included the Avengers, Dark Knight Rises and the Hunger Games. Adele was leading the charts with 21, and Emeli Sandé had the best-selling album of the year. The Space Shuttle took its final flight, which was an end of an era, but we landed on Mars, so it looked like the possibility of Space exploration wasn’t going to be over for many. It felt like a hopeful year, and it became clear to me that our family would always need to care for our youngest daughter Georgia. We were carers, but we would be long-term carers, and better make changes.

Georgia wasn’t developing, and we didn’t have the clarity in diagnosis we do now – but we knew as parents that her future wouldn’t include the independence we hope for in our children. That empty nest would never come; it was a year of acceptance. We had done fairly well as a family and worked from humble beginnings to have a nice house, but we knew that it wasn’t orientated to make long-term care easy. My wife had a lot of experience of being a carer with her mother and others in the family - and some properties just aren’t orientated to basic equipment we knew we’d need, like a wheelchair or to have a wet room for bathing vs a conventional bathroom. We made a decision, and we moved home – we love the area we are in, and many thought it strange that we moved right next door. The property next door wasn’t a copy; it was unique, and we saw all the possibility of being a carer home in this. We had care plans all sorted for Georgia, and we knew all her specialists in the area, so moving out just wasn’t on the cards. In 2012 we began our 10-year journey – the journey to supporting Georgia to become an adult.

Georgia will be 18 in December, and she has the exact care needs she had in 2012 – she’s just got a lot bigger, and we know her diagnosis now. She has a DDX3X gene mutation, and we are told this was a spontaneous mutation within a DDX3X gene at conception. It is linked to intellectual disabilities, seizures, autism, low muscle tone, abnormalities of the brain, and slower physical development. Georgia has all of these traits aside from slower physical development – she’s grown up now, and in static photos, you can believe she is a typical 17-year-old looking forward to 18. She has no comprehension of this moment – the moment when she is no longer a child – the moment that legally she becomes a citizen and is no longer the dependency she’s been. Although Georgia will never buy alcohol in a bar, desire to drive a lorry or stand for election as an MP or any other number of legal changes to becoming 18, she still becomes an adult. An adult with challenging behaviours that we can work with and cope with but are extreme to some.

As I share the next part of this story, know that as a family, we are happy. My eldest, Jade, is 21 now and doing brilliantly – she’s in a job that she enjoys, in a positive relationship and has a great bunch of friends. There are obstacles in the way of a young carer and a sibling for a sister with special needs, and yet she’s worked through all she needed to, and we are so very proud as parents. My wife Tracey is astounding in her levels of calm, and we celebrate getting to the end of every day in the same way we always have, and I expect it always will be. Georgia is in a house that is designed for her needs, and we’ve seen a reduced number of meltdowns in the past 6 months.?When the meltdowns happen, they are harder to deal with as she is bigger, yet we have experience, and we can cope when Tracey and I tag team. We are happy, but change is coming, and a bit like Winter, it’s not going to be avoided by ‘sitting this one out’ – it’s happening.

Since that moment in 2012, we took the house we bought and adapted it. It’s got a wet room, all doors and spaces are wheelchair accessible, the architects-built space for a lift for later and in the meantime all stairs and steps have been revisited to be wider or, if possible, removed. We’ve made choices on furniture, kitchen equipment and electrics throughout to mitigate the risk of Georgia being harmed yet still maintain quality of life for the rest of us. We’ve created room for independent carers to stay over too, as if either Tracey or I get injured or are ‘offline’ for whatever reason, we may need to call on support. The thousands and thousands of decisions involved were hard at times, as not everyone understands decisions aren’t always made on the appearance of things but also on the potential risk. Many made micro judgements along the way, and we even had arguments in front of us by builders and planners when debating matters of safety (which they’ve apologised for). If anyone is reading and wants to talk about adaptive homes and planning for a long-term care plan and carer experience, just let me know.

This blog entry isn’t really about the moment in 2012 or about the house and happiness. It’s about work and career. All of this is my life context. I’ve brought purpose into my work and managed many change projects relating to new treatments, new health technology, innovations, and I believe I have contributed to improvements to society – through these, I’ve re-learned to have hope when at times, it felt like hope was lost. I’ve leaned into Mental Health communities, Neurodiverse communities and supported People Engagement initiatives in this decade, and I tried to be generous and understand the life context and moments that matter from the people I’ve worked with. I’ve been working my way also to not working – with my Plan-A being a full-time carer when Georgia transitions. To those that only work with me every now and then the easiest phrase to use was retirement but for those of you who know what full time care means – it’s far from a pensioner’s lifestyle – and I would have been comfortable to make that leap to focus on being a carer. My career aspirations aren’t to get to the top, rather to orientate around my purpose, maintain my happiness and looking ahead to the struggle of prioritisation between home and work has felt stressful and a far from happy place to imagine.???

About 6 months ago, I started the dialogue with Accenture on what that meant and why it was important. Accenture is a good company, outstanding at times, and I’ve always felt I’ve had rounded support, but my plan to leave the company was a surprise to some. The company, and critically, the senior leaders, enquired more into my ‘why’ and wanted to find a way to continue working if I wanted to. It felt like they were saying, ‘It’s 2022 and not 2012 after all – we’ve all been through a pandemic – technology for home flexibility is mature – and if we cannot work out a way to support an employee during a big life change, then what sort of modern leaders are we?’ and so I explored. I listened, they listened. I talked, they talked. We met many times, and we found a way.

In September, I’ll be taking a ‘circuit breaker’. Time off between my old and new roles and time to focus on Georgia’s transition. There is a pathway, and as Blackpool Teaching Hospitals put it, “Transition to adult health services can be a challenging time… and we are working hard to improve the experience”, so I’ll give this focus and availability to make it easier for all involved. I’ll be meeting social care departments, meeting health specialists, meeting care workers, meeting charities that can support her in her “adult” life and putting more time into the legal processes including Deputyship and other steps that are necessary in order to maintain care for Georgia (and us) as we need.

In October, I’ll be staying on with Accenture. We’ve managed to find a way to balance the change in care for Georgia, the disruption we’ll be enduring as she transitions to adult care and the work I’d like to continue doing. I’m aligned and will support the strategy of Accenture Song, focusing on a few Life Sciences accounts with specific initiatives. I’m also aligned and will support the Strategic direction Accenture has in the regions in the UK&I and have taken on the role of North West Regional lead. I’ve handed over other responsibilities to people I believe will take the scope I’ve had and make it their own. The house we’ve adapted is in Blackpool, North UK, and I’ll travel less and be more of a carer.

In summary, sometimes plans change and when you involve others in the plans, sometimes they change for the better. Rarely does the macro picture change our minds, it can sometimes be the words of a colleague that shift our thinking. A few words of reassurance, a few words of support or just taking time to listen can significantly change our path.

I’ve tried to summarise the lessons I’ve learned from the past 10 years in the hope that sharing them might help other carers of younger disabled children on their unique paths:

1. Start planning early! I realised 10 years ago that I’d need to plan long-term care and I am so glad I did. If you haven’t started thinking about it, spend time today. It has taken 10 years to achieve some of the goals we set. Others took less time, but my advice is – plan early. Give the big decisions the time and space they need so you can get them right for you and your family. Some of the processes and pathways may feel glacial compared to your day-to-day work life. The social care system isn’t perfect, and you should feel confident to ask for what you are entitled to – in many cases, you will know more than some of the people in the system.
2. Know you aren’t on your own. National charities such as Mencap, Contact and Challenging Behaviour and foundations such as DDX3x have been invaluable in helping us to understand what is to come. They can also be useful to share with friends, family and work colleagues to help them gain an appreciation of your circumstances. In our case, links and guides from these sources have also been useful to share with new care workers who don’t have experience with our specific needs. These organisations can often run campaigns like Transforming Care (Homes, not Hospitals) that could do with your skills, time or if you have it, your money.
3. Join communities aligned to your needs. It can be lonely for your family at times, you have a unique need to cope with, and it can be hard to describe and for others to empathise. Joining local clubs that offer swimming, trampolining, or other sports for your child’s disabilities is good for them, and it’s also perfect for you. You meet parents in similar situations and can talk through how it feels and your options. Talking about your worries can find you a helping hand in the most unlikely places. I now volunteer at a swimming club for multi disabilities and met many others who are in similar care circumstances – and it’s also been good for my mental health.

I’ve also learned lessons that transcend my specific situation and might be helpful for anyone. Here are some tips to help maintain balance in your careers, whatever your life context:

1. Talk about your needs as if your mental health depends on them (as it does). There is always a balance to consider in the quantity you share. Still, what is true from all surveys, all research and all advisories is that keeping it to yourself is the worst option. Not talking about you and your needs, fears, hopes and aspirations with anyone is not going to help you, and this goes for colleagues at work too. Unfortunately, there isn’t much evidence of people with psychic and mind reading powers in the workplace, and often the companies we work with are very literal.?// Take time to read the work of and seek services from Mind, British Red Cross or others if you feel life is getting too much and you would benefit from specialist support.
2. Be clear on [your] expectations. Having rituals and habits that help you cope and live well is important, and you should take time to work out which ones help you and how you can balance these with your work needs. You should also know what you are looking to achieve, what you stand for and, more critically in my experience – what your purpose is. The latter is hard, yet with books such as Ikigai (The Japanese secret to a long and happy life), there are ways to frame your expectations, so you reduce disappointment.
3. Strive to be unconditionally positive with those around you. Being unconditionally positive about someone is not about liking someone or accepting everything they have done; it’s about respecting them as human beings and operating under the assumption that they are doing the best they can. Take some time to read up on this, find a course and study it. It has helped me a lot, and I wish I had this advice not just prior to the last decade but when I was starting out too. I’ve found the reciprocal value of adopting this mindset in my life is greater than the time and effort I put in to understand and practice it – immeasurably so.

Lastly, if my daughter Georgia could talk and comprehend, I know she’d have a lot to be thankful for also. Thanks to all the Health Care Professionals, Health Educators, Social Care advocates, Digital Health advocates, Clinical researchers, Health Policy advocates and Researchers, Health Data Scientists, Health Tech innovators and those willing and able to take the leap and venture into the unknown – not least the futurists who commonly get dismissed yet are vital to keep hold of those vital North Star visions. The hope she had 10 years ago is radically different than it is today, partly as we aren’t on the odyssey of diagnosis anymore and you all continue to contribute to the massive shifts in Health for all of us.

If we work together, see you in October. If you want to meet and discuss working together, see you in October. If you fancy a chat about care planning for disabilities or your own experiences, I’m available through all the usual channels from anytime. I know I’m not on my own, I know my family aren’t on their own and I, therefore, know you aren’t on your own. I may not be able to offer solutions, but I can listen.

This was a story about a career change moment. I have prepared for this for over 10 years, and it didn’t end the way I originally planned, yet I couldn’t be happier about where we have landed.