We started the New Year with a fantastic opportunity to spend some time with Steve Ford, CEO of Parkinson’s UK.
He shared some truly inspiring stories along with insight into how Parkinson’s UK and it’s local and national teams are working alongside people with Parkinson’s to push for progress in all aspects of care, treatment and the quest for a cure.
We take a look this week at Steve’s journey as CEO and the evolution of Parkinson’s UK under his leadership. Next week we will bring you Part Two in which we focus on the real issues that matter to people with Parkinson’s and what treatments and innovations might be around the corner.
A Man on a Mission
Steve is a wonderful interviewee – focused, concise and knowledgeable with a genuine compassion for the work he does and the people whose lives he impacts every single day. He is considered in his responses, yet the impression is that he wants to give a full and appropriate reply rather than frame his answer politically. He does not shy away from difficult questions or emotive subjects and is happy to acknowledge areas of improvement and frustration.
Parkinson’s Gets Personal
Steve goes on to explain how his transition into the role included the chance to fill this initial gap in his understanding. He describes now knowing literally thousands of people with Parkinson’s and how so many are willing to share their stories and experiences. He even shares how one ‘lovely lady’ emails him every few weeks with updates on her husband’s journey through treatment and care. There are moments like this in the interview when he becomes briefly reflective and still and for just a moment it easy to see how Steve can still be so passionate about what he does after 15 years. He is reminded every single day of the need for progress and hope in a world full of frustration.
We discover how he has had his own personal experience of the condition when he reveals that “ironically” his own Father was diagnosed with the condition a few years ago and sadly passed away recently. It is not a subject he dwells on and while he admits that it “brought some things closer to home” he quickly adds that he “wouldn’t say, actually, that that made a massive difference” because he’s “having that kind of involvement and contact with people on a day to day basis…” and was clearly already committed to the cause.
All Change at Parkinson’s UK
He describes how the Charity he walked into had a feeling of “being there to do good things for the poor people with Parkinson’s”. While he precursors his comment with “it’s perhaps a little unfair,” one senses that he has no other way to explain the ethos at the time. He set about change. An era of consultation followed in which he ensured that people with Parkinson’s were heard and their needs acted upon. Much of the money was spent on expanding local services which would make a real difference to the way people were able to go about their daily lives – campaigning for more nurses, education and training of health and social care professionals and services, and more staff locally to work with the local group volunteers.
What’s in a Name?
In 2010, these changes were cemented by a change of name and a total rebranding of the organisation. Becoming Parkinson’s UK was an acknowledgement that they were now a collective body – or a “movement” – with a common cause. People with Parkinson’s themselves were “providing the drive, the energy, the inspiration, the ideas” and the public image needed to reflect that.
It was not, however, Steve is keen to point out, merely a question of imagery and name. The rebranding was accompanied by a radical shift in values. Everything the Charity now does is “driven by the views and experiences of those living with the condition”. Steve himself must answer to the Board and demonstrate how each proposal “has been shaped by those living with Parkinson’s” and every team must do the same with its activities.
Onwards and Outwards
When asked what the best way to support the Organisation would be, he is quick to reply with information about the Research Support Network. With nearly 6000 people signed up already, the “Take Part Hub” section on the Parkinson’s UK website invites those with and without Parkinson’s to be part of various projects around the country seeking solutions.
Steve poses the question during our interview “what kind of organisation do we want to be?” and states that it is still very much an ongoing issue.
Having now experienced the genuine passion, drive and understanding shown by the man at the wheel (so aligned to our own endeavours and ethos) we are reassured that Parkinson’s UK is in safe hands and will continue its evolution into whatever the Parkinson’s Community need and want it to be.
Please keep an eye out for the next week’s post! 🙂