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Get on Your Hobby Horse Session

Point 1 – Gordon Nicholas: Carers save the NHS in the region of £5 million a year and I think it is high time we patients work together to get some provision for these people to have adequate financial assistance and some respite care. I know we are a patients’ organization but we must remember that if it wasn’t for our carers, many of us wouldn’t be here today and at the moment it is just not there.

Point 2 – Neil McCauley: In view of the great shortage of donor kidneys, is it not time to reconsider the reintroduction of elective ventilation?

Tim Statham responds: The new Human Tissue Act does not deal with elective ventilation. However, a whole number of other procedures do become possible from April 2006. The perfusion of organs, for instance, is going to be permissible from that date and this is why non-heart beating donors have become such an important issue for us. We have evidence to show that organs from non-heart beating donors are just as successful as those from heart beating donors. The difference for us though is that heart beating donors come from the intensive care unit only and non-heart beating donors can come from anywhere in the hospital. In theory this could provide enough donated organs to completely get rid of the transplant waiting list.

Point 3 - John Aston: I do not understand why our hospital drivers have not had their 30p per mile payment increased despite petrol price increases over the past 5 years almost doubling the cost of petrol. Many drivers continue anyway, even at a personal loss, because they just want to help but many are unable to continue if they are loosing money. This becomes all the more ridiculous when the Hospital Trusts are prepared to let them go and pay taxis £26 a trip which would cost them £10 using a hospital driver. The hospital drivers really get to know their patients and this helps the patient. Also there is no parity between Trusts; some pay 30p per mile and others pay 45p per mile – isn’t this something in which the NKF could become involved?

Bob Dunn responds: This is one of the problems with devolving decision making to local level. Transport issues are a nightmare across the board and a completely new model is being looked into now. If you would like to get in touch with me I will see what I can do on this local issue, and then this might give me a better idea of how to tackle this on a National basis. (Editor - please contact Bob via the NKF (see details below) or use the Contact Us page).

Point 4 – Pat Potts: Patients in my area (Exeter) are being charged for Ambulance transport, and whilst I do not want this practice to spread by bringing it up today, I would like the Conference to know that it is spreading anyway.

Bob Dunn responds: The Ambulance Trust in the SW is one of the very few trusts who charge patients £10 for a trip to hospital. The difficulty is that in other areas of Devon and Cornwall patients do not have to pay. Certainly we are fighting this practice but at the moment this is seen as a NHS Cash Generation Scheme. But this is being dealt with at Government level and we are now dealing two reports that this generated. Unfortunately, these things do take time but please speak to me after this conference and I will look at it further with you.

Ken Tupling: The Labour Party last week was proud enough to confirm that the NHS is free from birth to the grave and this has just emphasised that it is not!

Further issues and questions were raised on topics:

• Dialysis in Spain where dialysis was refused under the E111 scheme and this ended up costing 1000 Euros. Despite one young patient making adequate and confirmed arrangements well in advance of his planned journey, these were cancelled by the dialysis unit in Spain – which is a very popular holiday destination.
  
• The issue of young men ‘crashing into’ the system due to the fact that they tend to be less inclined to see doctors if feeling unwell. Maybe they are the ones who should be opportunistically tested?
  
• The issue of what precautions should be taken by kidney patients in the light of an impending bird flu pandemic in the UK
  
• When a family has a history of PKD would it be a good idea to test any children early and if so at what age?