It has taken over two-thirds of my life (more if I die sooner than I think) to feel valued as a professional, let alone as a human being.
Those who know me can testify that when I am not centered, there is an unproductive edginess in my style, borne of a deep vulnerability – my ambition has often been predicated on a sense of scarcity (aka ‘there is not enough for me’) and my involvement work can be fueled by a longing for love and belonging. And when I am irritated by a sense of grievance or injustice, I can not only rock the boat but create a veritable Poseiden Adventure.
So what? Well, when the penny drops that you are valued, it means a lot.
Patient Director – what’s that?
I have started work as Patient Director for Sussex Musculoskeletal (MSK) Partnership Central. It’s a partnership of healthcare organisations working together to provide services for people with joint, muscle and bone problems. The way we provide services is new and as I see it, based on a model called ‘The Accountable Lead Provider’. See: http://www.rightcare.nhs.uk/downloads/Rightcare_Casebook_accountable_lead_provider_Aug2012.pdf
Basically, this is a way of providing more joined up care so that people don’t have to go here, there and everywhere when they have a problem – to the hospital for an out-patients appointment, back there two weeks later for an X-ray, referred to a physio somewhere else, etc etc. Instead our organisation is paid by the commissioners to bring things together so that patients have a better experience that is ‘joined up’ and involves them and carers more in their own care and treatment.
In the posh policy-wonk jargon, this is called ‘integration’.
We bring staff (nurse specialists who can also refer people for operations, rheumatologists, orthopaedic doctors, physios and pain management specialists, psychologists, etc) and the kit (X-rays, MRI, ultrasound, hydrotherapy, etc) into one place in community-based locations.
Sussex MSK Partnership promised that the service would be truly ‘patient-centered’. During planning, the team did something truly remarkable to actually make that happen. In conversations about their structures, they discussed how to ensure that roles and responsibilities around ‘patient experience’ and patient and public involvement were given the status they deserved.
They were mindful that most NHS organisations place these roles a few levels ‘under’ the auspices of a clinical or nursing director. Immediately, this means that professional power over patients is mirrored in the DNA of the organisation.
They did something that no organisation has done before: They drew a box at Director level and filled in the title ‘Patient Director’. So, now the leadership team comprises a Managing Director, a Clinical Director… and little ‘ole me, as Patient Director.
My job is to make sure that the work to ensure that ‘patients are in control’ and ‘supported self-management’ and ‘shared decision making’ and ‘patient and public involvement’ and, and, and…. actually happens.
Except I am not so ‘little’ any more (though maybe ‘ole). For the first time in my professional life my worth is being truly valued. But it is more than that. This could be, I hope, a model for other organisations. As we learn what the role really means (and this will be a steep, exciting and challenging learning curve) perhaps we will see more of these types of position emerge. Michael Seres (@mjseres) has always held that nothing will change in the patient movement until we have ‘Patient CEOs’. He may be right. He often is.
However, it was more than this that persuaded me to apply for the job.
I visited the offices before applying. I wasn’t sure I wanted to be an ‘insider’ again. I was shown around and was surprised to see a large bank of call handlers in an open plan office. These were ‘Patient Care Advisers’. Their job is to phone people who have been referred into the service and offer them a choice of locations and timeslots for their appointments in the community clinics being set up around the county. They also provide information, advice and support for patients and carers to make things easier for them.
I listened in on some of the calls, and as one of them came off the phone I asked him whether he enjoyed his job. He replied that he loved it, that he felt he was making a difference and he felt part of a great team. He felt valued. I sensed that the patients he had been talking to also felt valued. That was when I decided to apply for the job.
Why this matters
I had a nervous breakdown at the age of 25 and went six years in and out of psychiatric institutions. I slowly built a career as a patient and public engagement practitioner as I wanted to make things better with, and for, others.
I suffered from bullying behaviour at work and had another bout of depression when 42. Last year, after I felt frustrated with what I saw as the system marginalising our work on patient leadership. I again became depressed. Though I call myself a former mental health service user, I am often closer to the edge than I let on.
Between these times, I have been labelled as a ‘usual suspect’, as having ‘an axe to grind’, as having a ‘personal agenda’, or as ‘going native’. The systematic marginalisation of patients in the system continues to trigger angst, as much as it keeps me going. I am the son of a Jewish refugee and tackling injustice has always been in my blood.
As another blog has pointed out the emotional labour of patient leadership can be intense and trigger feelings of vulnerability linked to the experience of being ill. See: https://futurepatientblog.com/2015/04/26/paying-the-price-the-emotional-labour-of-patient-leadership/
The lot of a patient leader – someone who has had life-changing illness, injury or disability and who wants to influence change through working in partnership with professionals – is not an easy one. But when you finally feel valued, this makes it all worthwhile.
Last week, on my first day in Sussex, two interesting things happened: Firstly, I had to continually remind myself that I was an equal of the wonderful Managing Director, Jon Ota. I kept slipping psychologically into a position of ‘child’ and inferior. I had to pinch myself that I was this man’s equal. Valuing myself personally still comes slowly.
Secondly, while talking to new colleagues, I suggested a new way of doing things. The reply came ‘sure, why not?’ That is very different from the last three years of patient leadership work and testimony to a very different sort of NHS culture. And it made my heart warm – I felt professionally valued.
May this sense of being valued come to you too. Preferably before you’re as old as I am.