DIFF podcast: A tale of two carers

Host Bharat Sagar, chair of the DIFF, was joined by Gareth Herbert, chief distribution officer at Mortgage Advice Bureau (MAB), and Charles Morley, director of mortgages at Metro Bank.

Herbert said he has always kept his work and personal lives “very separate”, and only “people close to me in my career… know what I’ve been through”. However, he said his daughter Evie’s birth was “pretty traumatic” because his wife’s waters broke when she was 28-and-a-half weeks pregnant, with Evie being born “hugely premature” and living “a lot of her first weeks in an incubator”. When she was nine-and-a-half months old, a doctor told Herbert and his wife that Evie would never walk and would need care, which Herbert said hit him “like a freight train”.

He described how his world view shifted following Evie’s diagnosis, having previously “wanted to be chief executive”, but “I had to recover quite quickly to deal with something that wasn’t part of a life plan.”

He added: “I struggled with acceptance when she was first in a wheelchair and she told me: ‘Dad, don’t worry about it.’”

Morley said Herbert’s story resonated with him, with regards to how “it changes your outlook on life”. Morley knew his son Harry was going to be very ill as lung issues had been diagnosed in the womb, but his autism diagnosis “hit us between the eyes completely”. Having only received a leaflet from the doctor, Morley described the resources and support from organisations like the National Autistic Society as “an absolute godsend”.

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He echoed Herbert’s thoughts on how his work life changed following Harry’s diagnosis: “At the time when Harry was born, I was head of sales at Kensington. I was probably an arrogant 36-year-old that thought I was going to rule the mortgage world. And then, all of a sudden, my life changed and things became completely different for me. And I think I became more tolerant, more caring.”

The changing dynamics of adulthood

Herbert said Evie attended mainstream schools and then a specialist school, but mainstream college did not work out due to “being able to tailor for Evie’s personal needs”, so they are currently in the process of getting Evie into specialist college.

He said: “When your young disabled child becomes 18, everything changes, because they obviously go from childcare to adult care, and those choices and support also change.”

He added: “She wants to go on to further education, and I want to give her that, but it needs to be different.”

Morley said Harry attended a “special needs college from the age of 16-20”, with the college having extended his stay by two years, creating an additional course for the final two years, as well as life skill lessons like cooking and building furniture. Once Harry became an adult, Morley and Harry’s mother had to go through the Court of Protection process, which gives them the “authority to make both financial and medical decisions on his behalf because he’s not capable of doing it”. However, the process was long and complicated, with “no guidance”, and Morley said he understood why people “just give up” with it.

Now, Harry goes out with his carer four days per week, which includes attending a farm and taking part in activities. Alongside this, he visits Jackie’s Drop-In, a charity that a former NHS carer set up “with a pound in her pocket and just dedication”. Morley said the charity now supports over 400 people and is currently working with the MAB Foundation, and he supported it when he ran the Naples Half Marathon last year.

Herbert highlighted the Footsteps charity, which provides physiotherapy for young adults with cerebral palsy and for which he had run a marathon. Evie also attends classes for wheelchair dancing and theatre, “and that’s all helped by charitable companies that have been set up, very similar to what Charlie said. They want to do amazing things and give back. And… it makes you want to give back. It makes you want to don a pair of trainers and go running”.

Working life

When Sagar asked how the speakers found the time they needed to care for their children, Herbert explained that he and his wife were both working full-time and had a discussion as to “who could earn the most to support our daughter and what’s going to come”.

He added: “That’s a hard conversation because my wife’s very career-minded and she was, at the time, heading up a training department in financial services.”

When it came to Evie having an operation in the US, hospital meetings and physiotherapy sessions, Herbert said MAB has been present and supportive throughout.

Morley has been “very open about Harry, right from the very start”, saying: “Ultimately, I never felt that I couldn’t ask a question or… pick Harry up or take him to a hospital appointment or take him to tests… and be worried that I was going to be judged on that. They were very much: ‘That’s more important, go and do it’.” He noted that this influenced his own leadership.

The inevitability of guilt

Herbert said he had felt guilt “all the way through”, as “work/life balance has always been a difficult one – whether you’re male or female, it’s hard”, but “I felt proud that I was able to give Evie everything she needed to help her”. He said “moments of guilt” were inevitable but “you do the best you can”.

Morley said the guilt he feels largely revolved around his other child, as “a lot of your focus goes on the child with a disability” because they occupy “more of your time”. As a consequence, the weekly film nights he had with his other child “became absolutely sacrosanct to us”.

Listen to the full podcast in the video below, hosted by Bharat Sagar, chair of the DIFF, with speakers Gareth Herbert, chief distribution officer at MAB, and Charles Morley, director of mortgages at Metro Bank.