mental state

As all the stuff was going on today I actually began chuckling to myself. I think that sometimes that some of the medical staff loose sight of the fact that this is my life they are dealing with and that small decisions make big decisions.

From the outside it might look like the whole process has been slow and perhaps slightly dis organised. I have a very different opinion about this. I, from the beginning of this process understood that it was a new process and that it would take time and there would be complications, panics etc as we go along. I feel lucky to be given the opportunity of having the transplant and the treatment.

I have also felt that the most crucial things have been dealt with within time and well. I will at this point note a few things that could be included within a wider patient care bundle for the next patient that goes forward for this treatment. This could not have been available for me as I am the first at the unit. I also think that it makes it easier for the doctors to have me as the patient as I basically understand what is going on and can challenge/remind suggest to the doctors what I think and want. I also can remind people that this needs to be done or that needs to be checked. This has made it easier for the medical staff. I am not trying to blow ,y own trumpet, but do think it is important that people realise this. If a patient has less knowledge or confidence it would mean that they would need more support and structure organisation.

For a patient bundle I would

Explain the reasons for the treatment - verbal and written

Explain some of the major side effects

Provide a person to chat things through with. Perhaps not a doctor but a nurse who is not directly related to the treatment. This is as much as a supportive role as anything else.

Have a clear timescale for all that is needed. Including work up for donor. Include surgeons meeting, ethics meeting, cross matching, plasma, rituximab etc... I think this is important.

I will write a proper document - "the patients perspective" at a later date.

My final comment is this.

I know that the worst thing in medical treatment is the waiting for results and information. This is particulary bad - people who are not used to the health service do not understand this and it causes stress and anxiety. This does need to be improved - it as simple as you can expect to here your results on ... OR "we are unsure of the problem at the moment and we need to do some more tests"

Most patients actually find it easier to deal with things when they have the information, the waiting is awful and stressful. Often the waiting is just because something has not been updated.