Hi all, I am finally feeling a bit more like my old self and am trying very hard to make some progress with my dissertation. Some of you will already know that I am trying to find a way to make Ports more easilly available on the NHS after having such a difficult time trying to get my own and knowing what an enormous difference having one has made to my life.
Please read the rest of this post to see if there is any way that sharing your experiences might be able to help me achieve that goal. - THANKS!
When I was told that my veins were no good and I would need 'a line', I really didn't know what that meant. At my next visit, having done some research, I told the doctor I wanted a Port rather than a PICC line. He told me that it was not an option unless I went private or to a hospital with private funding that meant they could afford to do it for me. To cut a long story short - I did not accept the decision, I pursued it within the Surrey PCT and eventually I was given my Port. I was told that the reason they gave it to me was because they were able to justify the cost based on the expected length of my treatment.
At the time this was going on I was preparing to write a dissertation as part of my MBA. When the chemo nurses told me they would like more people to be given the option of a port without having to fight for it, I said I would make this the topic of my dissertation. It makes sense to me that if there is a point at which a port becomes cost effective then it should be a standard policy that those patients meeting the criteria are offered on.
I have subsequently learnt quite a lot about ports and I'm continuing to learn about policy decision making within the NHS. For example I have discovered that there is no national policy not to give ports on the NHS (as I was first told). I have also been told that the Marsden (who do use ports) don't manage to do it because of special funding. I have been told that the Surrey PCT does not have a policy not to give ports - in fact they have no policy relating to ports at all. The information I have been given is that it is the decision of the clinician. If the clinician says yes, then it will be funded. This is totally at odds with the experience I had and so I am now on a quest to find out if the clinicians have a policy on when they will deem a port to be appropriate.
I know that there are limited funds within the NHS but I also know that in certain circumstances, giving a patient a port would SAVE the NHS money.
One way to overcome the postcode (or clinician) lottery is to have NICE render a judgement on when it would be appropriate for Ports to be offered. The NICE decision would then become a national standard (I'm checking to see if they have already done this in the hope that the issue is one of policy deployment).
As I said - this is all going to form part of my dissertation which when finished I will offer to the PCT and NICE for consideration.
To do this properly - I need some help. I need to write a couple of case studies of people who have tried to get a port. I can use my details but I really need a second case study in order to demonstrate the lack of consistency in the process. Ideally, I would like to use details of someone who has been unsuccessful, in order to bring the differences into sharp focus. It would be ideal if the request was made of the Surrey PCT but if NICE has already rendered a judgement then that may not be an issue. It would also be helpful to find someone who was offered a port on the NHS without having to fight for it. Can you help? I promise that I will anonomise the case studies so that your identity will not be known from what I have written (as this is important to me too). Please let me know if you would be willing to join in with this.
In addition to case studies I will be developing some questionaires to gain insight into the issues associated with PICCS and PORTS in an effort to make the impact that the treatment type has on us count for something too. If you can help with that, please let me know so that I can then let you know when I have the questionaires ready.
If I am successful in this work it will mean that more people will be able to have Ports fitted without experiencing long delays and lots of red tape. It will mean that fewer people will have to find a way to fund this privately - because that extra expence is something that many of us just cannot afford.
Please help me if you can.
Many thanks,
Noj x
