iDKA Chair's Report

IDKA Chair's Report

Hello everyone, my name is Doug Swayze and some years back my wife, Susan, suffered kidney failure and eventually had to start dialysis. After a while she was lucky enough to get a transplant which, of course made an incredible difference to our lives and brought us back to some normality. That is a very short story which cannot possibly explain all the anxiety, frustration, uncertainty, fear, panic and feelings of isolation that we both went through during that time. I do not claim to speak for everyone nor understand how every individual feels but I have come to realise how kidney disease impacts everyone who comes into contact with it whether they suffer themselves, are family members or are the main family carer.

IDKA was formed over 20 years ago by a few people who had suffered from kidney disease but benefitted from the dedication of the staff at Ipswich Hospital. They wanted to put something back into the system, to offer support to other kidney patients and help relieve suffering that can result from kidney disease. Since that time dialysis has moved from a portakabin in the car park to a purpose built unit with 20 chairs (and no car park!) plus a unit at Aldeburgh. Over the years IDKA has tried to make time spent on dialysis a bit more bearable by providing facilities including TV sets, CD & DVD players, ice makers and fan heaters. They have also made welfare grants to individuals, provided facilities for cheap family holidays and organised a number of social events.

However, as the unit has grown times have changed - and communication has become more difficult. There seemed to be a lack of awareness of IDKA. The committee had tried all it could to reach out to patients but their efforts were not working and about a year ago there was a possibility that IDKA would cease to exist. was decided that the 2013 AGM would be make or break for IDKA. Almost simultaneously we discovered two very motivational people - Sandy Lines, NKF’s Regional Advocacy Officer who encouraged the committee to carry on, and our own Les Talbot who convinced us that we could turn our AGM into a day that could be enjoyed by all our members. The result was an AGM attended by about 150 people.

Arguably, the hard work starts now! We have achieved our first objectives of getting some new committee members, with new ideas and are introducing a magazine and this website. I hope this helps every one of us to communicate with each other. Not just “the committee” with “the patients” but everyone with each other. If we had been able to share our concerns when we were first diagnosed maybe it would have made our life a bit easier and we would have been aware that we were not alone. Maybe there are people out there who think they are the only ones with a particular problem, perhaps finding that they are not is the first step to getting that problem addressed.

The IDKA committee is made up of volunteers trying to do our best and you can help influence what we do in the future by contacting anyone on the committee in any way that is convenient to you. We make no promises, other than we will do the best that we can. IDKA does not ask for anything in return – but we won’t turn down donations or offers of help. In particular if anyone could spare a few hours each month to help out by taking minutes at our meetings it would be very helpful.

Doug Swayze

Chair