NHS England’s National Medical Director for Long Term Conditions looks at the importance of listening to, working with and helping to empower patients:

I was down to present at two conferences recently. The first session was on the challenges of long term condition management. It seemed like a good idea to do this with two experts.

Katie and Isaac volunteered to join me for the session as they, between them, have more years’ experience of managing long term conditions than I have. Ticking medical boxes, they have accumulated 18 conditions between them!

I had prepared a PowerPoint presentation until I realised that a far better way to run the session would be to ask Katie and Isaac to speak first and set out what they would design if they had control of the system. I would then respond setting out what we were (or were not) doing to deliver that vision. If you like, modelling how we should commission?

The clarity with which both of them set out what they would like the system to do to support them was enthralling.

The first thing was a desire for their lived experience to be acknowledged and respected. As Katie said: “I have 20 years of living with my problems – I know what I want”.

Isaac pointed out he wanted to be seen as a person, “I want clinicians who think about me as a person not as a condition”.

Top of Katie’s list was a care plan, designed with her, for her and in her control. It needed to address her physical, mental and other relevant needs. It should identify who is responsible for what so she knows who to access easily when she needs them. It needs to be flexible and adaptable over time. It needs to be accessible wherever she is.

She made an appeal for better training and support in managing persistent health problems for people with those problems. Not just as a one off but over time as people’s problems change.

Katie also pointedly asked why there was so much variation and lack of consistency in what is routinely offered.

Isaac had very similar points and he also wanted the bar raised. He wanted a change from seeing people as just surviving to seeing people as thriving. He wanted to be seen as an asset and to be treated with respect and dignity.

I set out what we are doing. But even as I said it I knew that there is a long way to go before we have a system that delivers what Katie and Isaac want.

It reminded me of an aphorism I came across in a book on leading change: “Changing an individual’s behaviour will not change the system, but changing the system will change individuals’ behaviour”.

We need to create a system that supports self-care and respects the person as an expert in their own right. People and professionals need continuity of information. We need to equip professionals with new skills for a new role, support professional collaboration and best practice with measures and incentives that do not deter the behaviours Katie and Isaac want to experience.

I then travelled to Glasgow, to the RCGP conference, where I participated in a workshop with clinicians who are motivated and willing to embrace a new role but, like Katie and Isaac, find they are defeated by a system of measures, incentives, rules and infrastructure that they have to overcome.

Some are trying to do what Katie and Isaac want despite the system but few because of it.

What I do know is that at a national level much of what Katie and Isaac want is recognised and serious work is in train to create what is needed. It won’t be easy, it will take time but we need to do it with the people for whom it matters most – people with lived experience and the professionals who want to do a good job.

• Self Care Week takes place 16-22 November 2015 and has the theme “Self Care for Life.”
• The 17th Annual Self Care Conference is being held on November 11 at the RCN in London and delegates will be from local authorities, CCGs, GP surgeries and third sector organisations.