Today Bec Hoare from Cancer, Older People and Advocacy programme delivery partner Getting Heard (formerly Oxfordshire Advocacy) explains about an exciting new report by peer advocates called “Our Cancer Journey” and a film featuring Linda and Rosie:
Over the last year or so, a number of our Peer Advocates, who are also members of our Local Cancer Champions Board, have got together to share their experiences as patients receiving treatment within the Oxford University Hospitals Trust.
They have produced a report that encapsulates some of their feedback, comments and thoughts about their own experiences and those of their clients. This has led to a number of recommendations for changes to certain aspects of some hospital services, ranging from facilities and practical matters within hospital waiting rooms to issues around car-parking. They have also considered the important area of informed consent and the ways in which patients are given and receive information.
The report has now been shared with senior staff within the Oxford Hospitals, and has been very positively received, with a real readiness to work together to address the recommendations. You can access the report by clicking here
To accompany the report there is a short film clip of one of the Peer Advocates who is also a Cancer Older People and Advocacy client, and a contributor to the report, discussing with her Advocate the very positive impact of advocacy in her own situation. You can watch the clip of “Linda and Rosie” by clicking on the film below:
We very much hope you find the report and film clip helpful and illuminating, as well as challenging.
In today’s post John, one of our dedicated peer advocates tell us his story:
I came to volunteering following my retirement. I wanted to use some of the skills I had acquired during my working life in hospitals and my own personal experience of cancer to support others.
As a volunteer advocate for Age Connects Cancer and Older People Advocacy project, I provide non-judgemental support ensuring that the older people’s views and wishes are represented. As a volunteer advocate I ensure there is a better understanding of the clients’ needs, and follow instruction solely from my client; confidentiality and trust is key to this role.
One call was to support a lady with her decision about moving. I went to visit her at home and found she lived in a top floor flat with no lift. She had difficulty walking so was finding herself increasingly staying at home and going out less as she couldn’t face the thought of struggling with all the stairs.
She asked if we could gain some information from her Housing Association, so with her consent they were contacted and the information was obtained on her behalf. This information was discussed when I met with her face to face and we chatted at length about her possible options. She liked living in a flat as it was small and manageable. She also liked living on a higher level as she felt safe. However, she understood that with no lift and an impending operation which would incapacitate her even further, life in her top floor flat was going to become even more isolated and difficult. We talked further about the possibility of improvements she may find in her daily life if she moved to a property that had access to a lift and following this she felt more confident to phone the housing association to discuss her options and take it further. Having someone to talk to was vital for this lady, she had limited family and initially she didn’t know how to start the process of enquiry about moving, or even whether it was a viable option. Having spent time with her talking this through, I feel this empowered her to then make the next step on her own.
Another call was to visit a lady in Llandough Hospital. She had battled hard against her cancer and was now receiving end of life care in hospital. There was an absence of relatives so she was pleased to see a visitor. I had previously assisted her with some paperwork when she was at home, so it was nice to see her again, albeit in sad circumstances. I sat with her, held her hand and waited to see if she wanted to talk. When someone’s very unwell they may not want to listen to a chatterbox! Just being there and holding hands can help a person feel better.
She said she had declined physiotherapy because she was frightened in case she should fall. I spoke with the ward nurse and voiced the clients concerns – we arranged that the physiotherapy would start again. I enquired about my clients care as there had been some queries about a move to another hospital, at that point in time she was too poorly for a move to take place and going home was not an option as there was no one to take care of her. The process of what was currently happening was explained to my client and she understood why these decisions had been made. I made arrangements to visit again the following week, but very sadly my client passed away.
Through my volunteering work I support older people who have been touched by cancer with a range of issues, and hope to continue to do so. I can’t help with everything but I do my best. I make the extra effort to give my time and listen – I always listen.
John, peer advocate, Age Connects Cardiff & the Vale
Living in Cardiff and the Vale? If you or someone you know over the age of 50 is affected by cancer and could benefit from our service, please get in touch to discuss how a volunteer advocate could help you.
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%.
Rosie
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.
Older People Living with Cancer 