What Simon Stevens should focus on in 2014

When I heard Simon Stevens had been appointed as the next chief executive of NHS England, it was news to me.

Since I am also active in health and social care, as a disability consultant, patient expert and experienced service user with cerebral palsy, I can only imagine some of the confusion in the next few years as people mistake us for each other. But jokes aside, I felt it would be interesting to highlight some of the issues the other Simon Stevens needs to consider.

‘It’s time the focus on patients being customers of services changed to patients being partners’

First, it is important to understand that as a commissioner of many less known and unfashionable services, NHS England plays an important role for many disabled people, who would not necessarily be a priority for clinical commissioning groups and could easily have their needs lost and forgotten.

One such service I have personal experience of is alternative and augmentative communication, which provides many children and adults with a literal voice so they can be contributing members of society. The current problem is understanding CCG services and NHS England commissioned services in an evolving system, and ensuring the average GP is aware of the many complex clinical pathways.

Partners in health

Patient involvement is nothing new, but it’s time the focus on patients being customers of services changed to patients being partners in managing their own health.

‘The NHS needs to be far better at supporting people on their emotional journey of trauma and long term illness’

The era of treatment and cure is over as the focus of the NHS has become about managing long term conditions and ensuring patients can manage their health throughout their life. This means patients need to be more responsible for their health and medical professionals need to communicate much better with patients. Doctor no longer knows best, but is now an expert adviser, supporting patients to be in control of their physical and emotional health.

And here is one of the greatest challenges the NHS is facing, which is to recognise that someone having and effectively managing a long term condition does not necessarily mean they are “sick”. We must learn as a society to accept the natural frailty of the human body and that the fact that if someone is not in perfect health, it does not automatically make someone unfit for work and society.

The NHS likes to wrap patients in cotton wool, always saying what people can’t do, and this instils a level of righteous negativity that causes problems with the work capability assessment. If the “good” NHS doctor says take it easy and the “bad” Atos doctor, who is the expert, says you are fit, people will go with the good kind doctor, who has not been asked to accurately assess someone’s employability.

The NHS should be working with the Department for Work and Pensions and Atos to ensure a more consistent positive message on employability to avoid professionals being played against each other.

Healing process

Linked to this is that I believe the NHS needs to be far better at supporting people on their emotional journey of trauma and long term illness. I say that from personal experience and from watching how many of the current generation of disabled anti-cuts activists appear to have not yet completed the grieving process, shown by their discomfort and even hatred for their situation.

‘It would be a disaster if my local hospital was responsible for funding my independent living’

This is having major consequences for those of us who are happy at being sick and/or disabled, and wish to be considered as equal citizens, not vulnerable objects of pity who should not work.

Disability rights, fought hard for, for over half a century, are quickly being destroyed by medicalised “welfareism”. The NHS has an important role to play in rescuing people from the unnecessary emotional despair they often find themselves in.

My final point for Mr Stevens to consider is that while I generally agree with the idea of integrating health and social care, it may not work with all aspects of social care, such as providing independent living to working aged adults so that they are able to work and be contributing members of society.

While issues like discharging, intermediate care and enablement will work well in an integrated system, unless the NHS can radically change its cultural thinking towards younger disabled adults, it would be a disaster if (as Labour is planning) my local hospital was responsible for funding my independent living, as the priorities of a clinical pathway would be very different to how I wish to lead my life.

I do hope the other Simon Stevens is willing to take these issues on board. I am sure if we were to work together, as I hope we do, having two Simon Stevens on the case would be a force for good.

Simon Stevens is an independent disability issues consultant, trainer and activist