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.
It is also evident that he is a man on a mission, happy in his work, with a real vision and sense of purpose. Underlying this contentment with his lot is the understanding that he has some very real issues to deal with – and that people with very difficult lives and challenges are looking to him for answers. Not one topic is discussed without some reference from Steve to the people he serves. It’s not a word he uses himself – yet the inference is there. Every question or choice he is faced with is accompanied by the foregone conclusion that he will seek the opinions of those he works for – a quality manifest in his style of leadership and underpinning the very heart of what Parkinson’s UK stands for.
Parkinson’s Gets Personal
Steve had had a successful career in the Health Service culminating in a Chief Executive position when the opportunity arose to take on the role of CEO of Parkinson’s UK. He has been in the post for 15 years now and reiterates several times throughout our interview his feeling of privilege regarding his position. He admits that despite managing services for people with Parkinson’s within the NHS and being “familiar” with the condition, he “didn’t really understand the issues and challenges”. He is very animated as he posits “that’s maybe one of the issues isn’t it?” and it becomes clear further into our interview that the training and education of those working within the care services is a fundamental part of what Parkinson’s UK does to improve the daily experience of those living with Parkinson’s.
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
Under Steve’s leadership, the Charity has undergone a huge and fundamental transition. Formed in 1969 as The Parkinson’s Disease Society, it was in “a strong position financially” when Steve stepped in but “didn’t really have a clear vision for what it wanted to do”. Steve is generous in his description of the state of affairs and describes how his first task of creating a plan “to spend the money” was “a great opportunity” coming from the Health Service! He punctuates his explanations with quick smiles and animated body language and his wonderfully expressive face lends tone to his comments.
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.
The beauty of this structure and the nature of the informational support offered means that the Charity doesn’t necessarily need to spend resources researching case studies as they are working every single day alongside the very people for whom changes are being made. The organisation is operating at a grassroots level and people living with Parkinson’s – bringing their stories and experiences – are an intrinsic part of the Charity’s activity, volunteering and working alongside staff locally.
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.
The rebranding has been a success and the increased accessibility along with the upbeat tone and contemporary inclusive language has attracted both service users and funders alike. A ‘refresh’ of the brand last year allowed a second wave of creative energy with Steve acknowledging that the strict control over the brand was allowed to loosen a little and staff and service users can try new ways of operating and reaching people with their new-found confidence and identity.
Onwards and Outwards
The challenges faced now are about keeping the doors open and continuing to drive change. Steve is passionate about avoiding assumptions by staff who don’t live with Parkinson’s and regularly operates lunchtimes sessions at which people with Parkinson’s share their stories. He touches on criticism relating to the number of people with Parkinson’s who are actually employed by the Organisation and suggests there is some way to go on that front.
He is determined to involve people from all areas of the Community and his furrowed brow is a clear indication that he doesn’t feel he’s quite there yet. He admits that it is a big challenge for health charities, but with “plenty of willing volunteers” with the time, energy, passion, experience and knowledge – “if we can’t get it right, who can?”
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! :)