Patients in Control of their lives and health…this is just the start


Yesterday NHSE held a wrap up meeting in Leeds to share the work and learning from two years of projects carried out by CSUs. (Commissioning support units)

This was my contribution on behalf of the excellent work done by South East CSU…

I am a patient activist, otherwise known as a patient leader. I responded to an invitation last summer to become involved in this project about putting patients in control of their Health care.

I have subsequently co-designed and facilitated the seminars we have delivered to some 14 CCGs, with several more planned.

It has been a real pleasure to work with these guys from South East CSU. It’s also been an inspiration and education.

I have found out huge amounts about person centred care, providing the right information at the right time, shared decision making and planning, social prescribing, care navigation and coordination, shared electronic records, patient activation…

And I have used my slightly obsessional interest in all things medical and patient related to mine Twitter and the Internet for research, evidence, reports…anything that is out there that we can use to support our case

… that enabling people to take control of their lives in health care is good for them, good for the NHS, and good for the economy.

I have told my story as a patient with several LTCs. I have spoken about what great care for people with dementia might look like.

I have challenged clinicians who say they treat conditions not people.

And GP commissioners who say they have no time to change they way they do things.

That their patients don’t want to take control or responsibility for their health.

And I have been supremely heartened by CCG board members who really get it. Who are already making changes to support and empower patients to be in control.

And who are working with voluntary and social care provider organisations provide holistic support wrapped around patients’ needs.

The paradigm is changing. Patients will become equal partners in their care. But we need to keep this movement going.

Martin McShane told us recently that change in the NHS takes 5 to 7 years. So 20 half day seminars are not going to achieve much lasting change. It’s just the start.

I urge NHSE to continue to support this work.

If you want change to happen. If Simon Stephens wants the five year forward view to happen.

We have a proven model for working with commissioners and organisational knowledge that will be lost if it is not used.

There is nothing more important to us patients. And you exist to provide us with the healthcare that enables us to live well.

We must make this happen.

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