The founding members of Islington Patients' Group  quickly realised that the participation structures set up by the CCG are not fit for purpose.  Meetings are very infrequent.  The agenda is set by the CCG and patient's views are presented individually (ie it is difficult for us to get together to form opinion). 

Further, patient representation is fragmented.  There are meetings at the surgery, locale (the borough is split into three areas called locales) and pan Islington level, but non of these groups have any formal relationship with each other.

Those of us who voiced opposition to these arrangements decided to form our own group.  The CCG is happy for us to do this and has agreed to work with us.

We think that regular meetings and careful observation of the actions of the CCG will allow us to formulate policies that will be in the best interests of patients.  It will also create a network where we can canvas opinion.  Unlike the CCG our intention is to make strenuous efforts to co-opt as many local groups and individuals as possible, so that we genuinely reflect the views of users in the borough.

Two examples will suffice.  The recent attempt by the government to upload all the data held at GP surgeries (care.data) has raised a number of issues, especially about he security of the data and the rights of patients.  Who is speaking for the patients in Islington?   There were no meetings of the area groups in the period following the issue becoming publicised.  Had the Government gone ahead the data would have been uploaded with no input from any patient group.

The CCG has held 'consultations' on the out of hours service.  This service has been run by Harmoni and surrounded by controversy.  The 'consultation' consisted of one or two badly attended meetings.  Most people (even interested parties) had no idea that the 'consultation' was taking place.  Again a united voice of the patient would have been impossible to ignore.

If you are reading this with an eye to either affiliating personally, or affiliating your organisation, we strongly urge you to do so.   If you read the article 'how we work' you will see that you can have a great deal of influence.