When I first went there I was given a sheaf of papers to sign and in that sheaf one was white with a red surround that appeared different but I was told leave it in the pile and just sign, the forms appeared carbonated so the signature would go through many of the forms, this to me is not normal practice.
The only medication offered has been chemotherapy, which to me is not the best situation as it is a delaying tactic and very corrosive injurious treatment.
The Doctor said there are all types of different things going on in treatments but was only offered chemo plus she wanted to add another drug as well that was age related treatment?
Can anybody shed some light on the situation and is there another path?
I have had endoscopy (camera up bum) and had very intrusive numerous biopsies(bits removed) numbering in the dozens which seemed extreme, to find the reason for three months of the screaming sh*ts. I am keeping this running dialog for referral if in the future, I feel that my treatment seems not to be of a reasonable expectation by a member of the public in a similar situation.
10.01.2011
I have sent two letters, one to the Liverpool Medical Officer of health and one to the Chief Medical Officer of the Royal Hospital Liverpool a copy of the letter follows.
Patient ID RQ 64474025
Dear Sir
I have been attending the Linda McCartney Clinic at the Royal Hospital for about three years after being diagnosed with CLL , I have just had a watching brief as to blood tests, weight etc, but recently I have been told that I am shortly needing treatment of chemotherapy etc.
I have on a number of occasions asked that my Doctor be kept informed as to my situation with blood test results etc and she says she is not receiving them.
I this Monday asked the Senior nurse, as there were no Doctors available due to ill health whether I was being treated as an NHS patient or as a voluntary test patient and received no reply, I normally have a blood test before the interview with the Chief nurse or the Doctors but have been told that on my next visit I will have my blood test after the interview, a number of things do not feel right as to the way things are being done, I have to take the blood results by verbalisation not actually seeing the results, nor my own Doctor being aware, I had an endoscope and biopsy done when a large number of biopsies in the number of about two dozen were taken and this to me seemed over the top.
I just want to know that I am being treated as an NHS patient and not put on a test programme, I know the Linda Mc Cartney Clinic is a research establishment and want to be assured that I am being treated as an normal NHS patient and ask you to please look into this matter for me.
I am due to be seen again in approximately three weeks, I would like to know if I am being treated properly and if the proposed treatments are normal and correct.
Yours faithfully.
My quote to two dozen biopsies relates to the taking of approximately two dozen samples during one treatment and not separate operations. The latest thing is that the charge nurse wants me to have my blood test after the next interview with them, this means that I like my GP doctor will not be aware of the results till the following session. The charge nurse wants me to have a prostate biopsy and wanted me to be referred by my GP Doctor, she gave me an examination and a blood test related to the prostate, the charge nurse still wants me to have a biopsy to establish the cause of my continuing loose bowel motions that are extremely active and have been for over four months now and I believe a test on my movement would be far beneficial to finding out what is causing them, the chief nurse said I could send in a sample and it would be tested, I am happy with that as I believe I have caught a bug which is affecting my system.
The continuing requests for biopsies and referral's to my own GP for her to request them gives me more cause to be concerned as to their actions being research motivated, as the Doctor said we cant do anything till you are well, well I am ill, you have told me that, so is it well enough to be able to carry out research?
17.01.11
My letter appears to have been useful as I received a phone call from the chief nurse who told me I was only signed up for blood tests and use of biopsy extras for storage and use, I have a number of options, first being do nothing and wait, second have tablets which is easier option poss normal for NHS, third have tablet and drip, fourth have stronger drip, fifth have stronger drip with other medication, I have never been told that I could wait and the tablet idea was quoted but glossed over for the six session drip as being the doctors mode of procedure, this gives me the impression that there is a lack of positive information giving the patient an opportunity to decide what procedure they are happy to go ahead with and not be led into undergoing treatment that they are not happy to have but feel is being given to them as the one too chose. am writing this as a diary and to inform other future patients may be aware of procedures that may be proposed and as to their rights.
26.01.11
Went to see Doctor at my GP centre and met a locum, who was very good and through my son told him that the Linda McCartney(chief nurse) wanted me originally to have a Prostate biopsy to establish if it was in order, the locum said that my blood test had come back high 7.9 when it should be 4.0 and another test was quoted at 9.7 and due to this and the request he would put me forward to be tested as this was too high, we also asked that my son and daughter receive copies of any letters sent to me. We also asked that the system of renewal of prescriptions be looked into as I was in danger of running out due to chemist/doctor liaison failures taking up time longer than the number of tablets I was left with even after giving two days notice to the chemist.
My next appointment is on the 02.02.11
Met professor who told me that I was still not ready for treatment but would probably be ready within a year, he said that the request for a prostate examination requested by the charge nurse would be followed up by them as a date was not set as yet, I told him about blood tests being carried out at a new clinic on the second floor and that people were not being redirected and were still going to the previous clinic who had stopped carrying out tests for the clinic, I then met a new charge nurse who answered my questions on types of medication that were available, next visit in six weeks.
I
