Why are so few kidney patients willing to speak up?

[rfhkpa]

Read my Update message in the latest RFHKPA Newsletter

* Meet the Royal Free KPA

* A "Work of Art" for new Royal Free AKI unit.

* Understanding early CKD

* "Back to work" seminar for kidney & liver patients

* Nephrologist treks Everest

* Scientists make lab-grown kidney

* Faith & Organ Summit report

* We encourage our patients to attend NKF annual conference

To download, click on the link

royalfree.nhs.uk/pdf/RFHKPA...

[Mungo]

Some questions for you from a transplant patient:-

1) Was the conference well publicised amongst patient groups?

2) Was there a charge to attend?

The reason I ask specifically about item 2 is that historically any conferences attended whilst I was working were fairly expensive. A lot of patients may not be working and have limited finances to attend such functions. They also may consider that these sort of conferences are for health care professionals, and therefore they would not qualify.

Some thoughts from an professional engineer who no longer works, and has limited finances.

[rfhkpa]

Yours are valid queries.

I was told by the conference organiser that a number of patients had been invited. There was no charge for this event but you are quite right, many events require payment to attend.

In the case of the Royal Free KPA, we do pay towards patients' cost of entrance for worthwhile events, like the NKF conference, but sadly we are in the minority. This highlights an area that needs support for patients to well informed and have the opportunity to speak up about how we can play a part in improving treatment and care.

[NKFCEO]

The NKF Conference is advertised widely in Kidney Life magazine and on the NKF website. The 2013 Conference can be found at kidney.org.uk. Sadly as this is a three day event there is a charge, however you can just attend on the Saturday if that is your wish. All attendees are heavily subsidised by the NKF thanks to the generosity of its sponsors. This Conference is for Kidney Patients.

Kind regards Tim Statham NKF CEO

[Hidden]

I had my transplant over 25 years ago and have attended and spoken at the kind of meeting you describe. Assuming it fitted in with my schedule, I would have been interested in going to the meeting on the National Service Framework. But I saw or received no advanced publicity about this meeting (unlike the NKF conference, which is very well publicised).

It's not enough to invite patients to meetings and hope for the best. If meeting organisers really want to get more patients involved, they should make sure that patients know about these events. It would be really quick and easy to post an invitation with a link to the meeting programme on this site or on other patient forums, or ask the NKF website to post a notice. A bit of advance warning would be appreciated, too. In my experience, often very little notice is given, which gives the impression that patients are a bit of an after-thought.

Patients are willing to speak up, but can only do if the professionals who organise the meetings get their act together.