Monday, 17 November 2014

The Cardiothoracic Advisory Group Patient Support Group Meeting

On Wednesday Rob and I attended a meeting of the Cardiothoracic Advisory Group (CTAG) Patient Support Group as patient representatives for Papworth Hospital. There were other patients from some of the other leading transplant centres as well as representatives from several patient charities such as the British Heart Foundation, Cystic Fibrosis Trust, the British Cardiac Patients Association and Heart Reseárch UK. The group is a sub group of the Cardiothoracic Advisory Group and includes their members too: representatives from Britain's Transplant Centres, NHSBT and some lay members.

The role of the group is to provide a forum for members to meet with the chair of CTAG and the Associate Medical Director for Organ Donation and Transplantation and create a two way forum for patients to seek information and raise concerns with NHSBT and CTAG on aspects of donation and transplantation and to comment and provide feedback on policies or activities of NHSBT. 

We had discussions on several topics including: 

Updates on the urgent heart and urgent lung allocation lists: the urgent heart list is going to be changed to include a higher category of 'super urgent', as some of the sicker patients on the 'urgent list' need to be further prioritised. There is still ongoing discussion about an urgent lung list with some issues still to be decided. I asked about the situation for patients requiring heart and lungs together and there is still discussion, but there may be some provision made for these patients to go on the urgent heart list if the patient meets certain criteria. 

The allocation of the zone boundaries given for each centre: these boundaries were set many years ago and demand for organs at each transplant centre have changed over time, but the zone sizes haven't. Starting from this autumn the zone boundaries will be altered accordingly each year. 

The 'Scout Project': this is a project where the transplant retrieval teams work with ICU teams to help them collect the relevant information and help them implement good practice in managing the donor patient. A pilot project has been undertaken and it is now under discussion whether to try and continue the project as, although it is thought a successful project in increasing the number of heart transplants this last year, it is resource intensive for the retrieval teams and unsustainable with no extra funding. 

The latest NHSBT Annual Cardiothoracic Report: this gives all the statistics on heart and lung transplants performed at each centre and the statistics for survival rates. 

There is more information on issues surrounding organ donation and transplantation published by NHSBT on the following website: 

As the group is relatively new we discussed and agreed the 'terms of reference' that have been  drawn up for the group and the election of someone to act as a co- chair. 

It was good to meet everyone and get chance to discuss and find out more about organ donation and transplant issues, as well as have time to chat informally too. I got chance to meet and thank my transplant surgeon once more - as a friend said to me he has held both my hearts in his hands. It's a  hard one to get my head around: both the fact I can say I've had two hearts and the fact that someone has held them both and that's not even mentioning my lungs! 

I still cannot believe what has happened. It struck me as we were walking along to the university that I wouldn't have even been able to think of doing this just over twelve months ago and probably thought I'd not do it ever again. I had got up nice and early, walked round to the train station, walked up the steps and so on...just like all the other commuters. It took me back to the days when I used to commute to London, back to the old me. The only difference was that I wasn't going to work, but attending a meeting about transplant and organ donation, again something I never in a million years would have imagined myself doing a few years ago!

I met a lovely lady there from the British Heart Foundation and on Friday I suddenly got an email with copies of my photographs that they took for the feature on genetics that I was in, in their magazine 'Heart Matters', back in May. That was a kind gesture and a nice surprise!