Today’s post is from Rosie Young a peer advocate at Getting Heard (formerly Oxfordshire Advocacy). Rosie is also a local and National Cancer Champion and an older person affected by cancer who has used the Cancer, Older People and Advocacy service herself:
I read with interest the final report from Patty Doran, Cathie Marsh Institute for Social Research, The University of Manchester.
A month ago Oxfordshire Advocacy’s Patient Experience Group, who are a group of volunteer advocates working on the Cancer, Older People and Advocacy Project, currently also receiving cancer services themselves gave feedback to Healthwatch on our experiences locally. Surprise, surprise! this mirrored the key elements of the report and I share a few examples from this group below but first, a reminder of the Law on Consent, Risk and Information…
Montgomery v Lanarkshire Health Board Judgment 11th March 2015
The Supreme Court was fortunate in having submissions from Andrew Smith QC on behalf of the GMC. The GMC submitted that an approach based upon the informed involvement of patients in their treatment, rather than their being passive and potentially reluctant recipients, can have therapeutic benefits, and is regarded as an integral aspect of professionalism in treatment. This was repeated in the Judgement in the Supreme Court
The court specifically stated that a patient must not be bombarded with technical information It is not up to the patient to find the correct expression of words. The onus is now firmly placed on the doctor to find out what their patients want to know
The doctor is under a duty to take reasonable care to ensure that the patient is aware of any: potential benefits, risks, burdens, side effects of each option, option to have no treatment and no pressure on the patient to accept advice.
These stories are from Getting Heard’s Patient Experience Group who are not backwards in coming forwards!!
One volunteer was told by the consultant “It’s your body – it’s up to you whether you have a biopsy or not”. She added ‘I was given no explanation by my consultant as to what the consequences would be if I didn’t have the biopsy or what the follow up would be. Because of the change in my PSA reading (which had been stable for the past 5 years of tests) I decided to have the biopsy which indicated the presence of cancer. At no stage was I given any advice whether to have the procedure.’
Another volunteer felt some pressure to accept the ‘Gold Standard’ and alternatives were dismissed. ‘After an operation in my left lung for cancer I was diagnosed a year later with a primary in my right lung. I was under considerable pressure to have a lobectomy from the Clinical Fellow and Specialist Nurse despite having significant risk factors which would have impeded recovery. In consultation with my GP, Palliative Nurse and family I opted for an ablation. The Specialist Nurse when I told her (having submitted a risk assessment) contacted my Palliative Nurse to question my capacity to make a decision.’
Below are some more examples from our volunteers where they felt they should have been given better information.
Number of operations required
‘The number and extent of operations should be clearly spelt out. I was told that I would need a second operation for my agreed implant only as I was going to the theatre for my mastectomy. The implant later had to be removed in a third operation’
Long term effects of operations i.e. nerve damage
‘I have gone from a sixty plus active person to needing a blue badge, upper limit attendance allowance with severe restrictions on my social life because of pain’
Dismissing the long term effects of treatment
‘The long term effects of chemotherapy and radiotherapy should be clearly identified. I was never told about the lifelong problems to be encountered with radiotherapy, from which I am still suffering.
Attitude of my oncologist dismissing treatment that is causing anaemia as of little consequence – putting in an email that he would ring me if he had time – ‘
Side effects and effectiveness of drug therapy
Medication, such as Anastrazole, should be discussed and the side effects clearly spelt out. I have just cancelled my final two years of Anastrazole due to side effects and having discovered, with some difficulty the percentage risk increase of a recurrence of cancer is only 2%.
Overall our Patient Experience Group felt that urgent retraining in the legal and professional practical application of all aspects of Consent, Risk and Information is needed fast and nationally. We must remember that this is about quality of life and life expectancy not about bureaucratic posturing and pounds, shillings and pence.
Rosie Young, Getting Heard (formerly Oxfordshire Advocacy)