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.
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.
Susan, one of our volunteer advocates, gives us a moving account of supporting one older person affected by cancer:
I am a volunteer advocate from Getting Heard (formerly Oxfordshire Advocacy) and a Cancer Older People and Advocacy volunteer, and one of my partnerships had significant interactions with the multi-disciplinary and multi-professional team. At each interaction, I as the advocate, was made very welcome and at no time did my client or I feel rushed, intimidated or feel that my client’s views were not taken into account. My client was involved in all decisions and staff took her views and concerns very seriously when developing her management plan, and she and I recognised that this was holistic patient centred care. Interactions with professionals and all other staff was extremely positive, medical and nursing staff welcomed the advocate when the role and responsibilities were explained, recognising the emotional and practical support available for the patient.
Susan
The specialist nurse made the initial referral as she was aware that my client lacked support attending consultations. I supported my client when she attended the gynaecology outpatients department for her first consultation with the surgeon following a diagnosis of uterine cancer. My client was determined that she was not going to undergo chemotherapy and my role was to support her achieve her wishes. Both the surgeon and specialist nurse listened to my client and when I intervened to clarify what was being said and questioned whether she understood the impact of her decisions, both clinicians were supportive of my client’s wishes.
I supported my client pre-operatively and interacted with the nursing and support staff. At the post-operative consultation following keyhole surgery, she was seen by the consultant gynaecologist when she was informed that the cancer was invasive and they had been unable to remove it completely. My role was to support my client reiterate to the consultant that she did not want chemotherapy but agreed to have radiotherapy.
By her first oncology consultation my client’s physical condition had deteriorated and she had developed further symptoms, and the oncologist decided that she should have more investigations including a CT scan. By the second oncology consultation CT scan results indicated further spread, and the plan was for four sessions of palliative radiotherapy. My client asked me to attend a meeting at home with the hospice specialist nurse for moral support, at the meeting the specialist nurse discussed hospice support and pain management. I attended her first two radiotherapy sessions, however by the 2nd session she had increasing pain and discomfort, weakness, urinary and bowel symptoms. By attending the radiology department, I was able to give physical and emotional support and assisted my client discuss her concerns with the radiographers.
My client fell at home and was admitted to the local hospital where I visited her in A&E and on the ward, where I met kind and caring staff. She was too unwell to be transferred to the hospice and died soon after following a stroke.
I was so glad to support my client during her various medical interventions both at hospital and at home, in order to support her through her cancer experience. I was able to offer support, and help her navigate the system and help her ask those often difficult questions and understand the response from professionals. It was a privilege to meet so many kind and compassionate members of the multi-disciplinary team, everyone my client met treated her with dignity and respect and nothing was too much bother. Feedback from professionals regarding the experience of working with an advocate was always positive and it was recognised that a well-informed and well-supported and empowered patient facilitated a positive staff : patient relationship. It was also recognised that the advocate had the time to support their client when professional staff had limited time and that support was consistent and flexible.
Susan Mackie Volunteer Advocate, Getting Heard (formerly Oxfordshire Advocacy)
Claire from Oxfordshire Advocacydescribes her recent experiences as a cancer advocate and the value of an advocate having a shared common experience with the person they are supporting.
I was diagnosed with breast cancer in 2013 and despite lots of treatment – chemotherapy, mastectomy, radiotherapy, reconstructive surgery and targeted drug therapies – I learnt in 2015 that my cancer had spread and I am now living with secondary breast cancer.
Last year, I decided to volunteer as a peer advocate in Oxfordshire because I could see at first hand, as I was going through my treatment, that there were many people who were struggling to find their way through the healthcare system in our area and to access the support they needed. It seemed obvious to me that a person who has been treated for cancer is potentially in a very strong position to support another person going through the same or similar treatment and experience.
Anne (not her real name) was diagnosed with breast cancer in 2015 and was referred to Oxfordshire Advocacy by her specialist breast nurse. Anne lives alone, struggles to get out and had become very isolated & depressed. When I first met her, she talked often about the diagnosis being the “final straw” and I recognised the many of the feelings that I had felt when I was first diagnosed: anger, fear, sadness, even despair.
In the first few weeks when I visited Anne at her home, we often would just talked and shared experiences and I know that she really appreciated that someone had taken the time to sit and listen and talk. I knew that when you are first diagnosed with cancer you do get quite a long appointment slot with your consultant and your specialist nurse, but you are in a state of shock and you can’t really take things in, and you are certainly not able to talk through how you are feeling. You need lots of time to process what is happening to you and it is weeks later when you are ready to really think about what is happening to you.
Since then, I have been able to help Anne in a number of ways. For example, I contacted Breast Cancer Care (I knew how good they were from my own experience) and ordered a number of information leaflets for her – some on treatments she had been advised to have, specific information on lymphedema and some on other issues such as her benefits entitlement. Anne suffers from cataracts as well and so I made sure I ordered the information in large print so that she could read the text.
Anne had a specific issue with one of her drugs that was making her feel unwell – I recognised the issue because I had suffered something similar – so I printed some information from the MacMillan website ( Anne doesn’t have a computer or access to the internet) and took it to her and read it through for her. I also helped her prepare some questions about this for her next GP appointment and as a result she was able to discuss the issue with her doctor and get the drug changed to minimise the side effects.
Most recently I was able to help Anne with her application for a one-off MacMillan support grant – she wanted to use the money to help with her heating oil. She had being finding it difficult to fill in the form and so she dictated to me what she wanted to say in her application and I was able to write it down for her (and I could use my experience to help with the spellings of all the drugs she was taking!). She said that receiving the money was very important to her as it eased her worries about putting the heating on in the winter.
I hope that with these few examples I have managed to convey that working with Anne has also been very rewarding for me. Cancer treatment is often quite technical and complicated and over time you are forced to become quite an expert in the healthcare system & how to get support. I am really glad to be able to put my experience to good use.
In this blog Neil Topping, a volunteer advocate for Oxfordshire Advocacytells us about his support of Maria (not her real name)
BACKGROUND
My advocacy partnership with Maria, a nursing home resident began in March of this year after a referral from Social Services. Maria, a Portuguese citizen, had been diagnosed with terminal bone marrow cancer and had a life expectancy of 12 months. Some years ago, she had also been diagnosed with schizophrenia.
THE PARTNERSHIP
The partnership agreement centred upon providing support to Maria in accessing her Portuguese bank account, assisting her in managing her account on line, helping her to understand her care cost liability and reconciling her budget and providing information for her to decide on whether to sell or rent her property. From the outset, Maria accepted that her illness was terminal and she would not be returning to her flat.
In mid-June, I attended a meeting at the nursing home where Maria decided to sell rather than rent her property and the social worker confirmed that the Council Money Management team could handle the sale. It was also agreed that she would bring a representative of Money Management to the next meeting with Maria. I agreed with her that I would also attend this meeting and that provided that she was satisfied with the arrangements being made, the advocacy partnership would conclude.
Neil Topping
THE OUTCOME
Shortly after I returned from my holiday, I was contacted by the nursing home manager to be advised that Maria had just died. She asked me for any information that I could provide to assist her with the funeral arrangements and in a few days we were able to piece together some details of her life and some idea of her wishes as she hadn’t made a will. I concluded the partnership having satisfied myself that the nursing home would organise the funeral and that Money Management would deal with the estate and financial matters generally.
CONCLUSION
The partnership was made easier because Maria understood the severity of her illness and wanted to deal with the implications. This, of course, is not always the case with those who are terminally ill. However, I learnt at an early stage that we had to let Maria control the pace of her decision making process and let her take time to understand her options. I also learnt that afternoon meetings seemed to suit her best. It may have been due to her schizophrenia, but it took a little time for me to gain her trust. Therefore, throughout the course of our meetings, both the social worker and I asked her if she was ‘happy with the way things were going’ and how we were supporting her.
In future cases, I would check at an early stage whether or not the care/nursing home, has clear information on file regarding the clients wishes following his or her death. With cancer, life expectancy projections are difficult to get right. Those of us supporting Maria were attempting to deal with the issues facing her in a way that was sensitive and recognised her prognosis but, as it turned out, was unrealistic in terms of the time that was left to her.
by Neil Topping – Oxfordshire Advocacy Volunteer Advocate
I am Rosie Young, retired nurse and Cancer Champ for Oxfordshire Advocacy and I have blogged before about my experiences as a patient living with lung cancer.
I just want to share the shock I felt when the consultant phoned to say my Ablation had been cancelled. It was almost like a mega bereavement process, having been so ‘psyched up’ for this operation. I felt cheated in an odd way. In April there was the shock of the cancer coming back and then the long wait for the first operation date finally set in late June which was then postponed due to lack of hospital beds. And then the wait for a new date in August. And now the second cancellation and another 3 month wait as it seems that the area they were worried about in my lung has shrunk, my next scan will be in late October.
Rosie
It’s a very strange emotional upheaval to go through. Everybody is incredibly happy that the possible tumour has shrunk and can’t understand why I am not over the moon. I have had to pretend that I am happy too. I have been feeling so guilty and conflicted, not wanting to burst the bubble, even with my advocate Linda. I didn’t expect to feel like that.
I guess I’d like every advocate out there to be really aware of the emotional roller coaster a patient goes through when there is a cancellation of an operation or change to planned treatment. When this happens you feel like you’ve lost control cos you can’t do anything practical to help yourself. Really listen carefully and do not make any assumptions or have expectations when this happens.
It seems to me from all the research I have done that no one has really got to grips with the psychological impact of cancer both on you and others around you who are in some ways more frightened than you.
I am a volunteer advocate from Oxfordshire Advocacy and a Cancer, Older People and Advocacy volunteer.
I first met J at the Churchill Hospital in Oxford prior to her first consultation with the surgeon following a diagnosis of cancer of the uterus (womb). J was a delightful 83-year-old lady, tall, elegant wearing red lipstick and bright red nail varnish on her fingers and toes, and she reminded me of an elderly Meryl Streep. J was a widow, had no immediate family and her next-of-kin was a disabled sister in Birmingham, she did have some very supportive young friends who had young children but who were unable to attend consultations during the day.
The first time we met was at the entrance to the hospital and we went to the gynae outpatients department where a very attractive male doctor (J’s words not mine) told her that the plan was for a hysterectomy within the next few weeks. A Specialist Nurse was in attendance and gave J information about endometrial cancer and treatment. J was not surprised about the plan for surgery, but was determined that she was not going to have chemotherapy as a friend of hers had died following chemotherapy for liver cancer, although she was willing to have radiotherapy. My role at that consultation was to support J in getting across to the medical team that she did not wish to have chemotherapy.
After each hospital visit we went for a drink at the hospital café, which gave J an opportunity to talk about the consultation and any concerns she had.
On one occasion we visited the Maggie’s centre where we spoke to the volunteer staff and received information about Attendance Allowance from the Benefits Advisor.
I visited J at home several times to go through the information that she had been given regarding surgery and treatment options and to help her complete the benefit forms. I supported J at her preoperative assessment and at her consultation after her keyhole hysterectomy. I supported J in discussing her wishes at her appointment with the oncologist. By the second visit to the oncologist the results of the CT scan were known which indicated that there had been further spread, and the plan was for four sessions of palliative radiotherapy. The specialist nurse spoke to J about the support available from the local hospice. However J was very upset as she felt that hospice intervention meant that she was dying. She continued to deteriorate and she asked me to attend for moral support when the specialist nurse from the hospice visited her at home. This meeting went very well and the specialist nurse was able to give J advice on diet and pain management.
I went with J for her first two radiotherapy sessions. She telephoned me at the weekend after the first radiotherapy session, extremely distressed and weak saying that she was unable to eat or drink or walk. I visited her at home 40 miles away and supported her to get something to eat and drink and encourage her to take her analgesia.
J never did have any more radiotherapy. I went away and on my return I contacted her and she sounded very frail . I went to visit the following day but when I arrived a neighbour informed me that J had fallen that morning and had been taken into the local A&E department. I visited her there where she was in a lot of pain, frail but cheerful and glad to see me. However over the next week or so her condition deteriorated and I visited her in one of the inpatient wards at the local hospital (she was too unwell to be transferred to the hospice). Unfortunately J had had a stroke and was unresponsive, she looked very comfortable lying in bed with radio 3 playing in the background (J was a lover of classical music and a pianist) and I was still reminded of Meryl Streep. She sadly died the following day.
Susan
I was so glad to have met J as part of the Cancer Older People and Advocacy project and to be able to help her through her cancer experience. As she had no friends and family nearby I was able to offer her support, and help her navigate her way through the system and help her ask those often difficult questions and understand the response. I was a shoulder to cry on, someone to give her a hug when she needed it, an arm to guide her through the hospital corridors and in the end someone to push her in a wheelchair to her last radiotherapy appointment. My involvement with J was a real privilege and J was extremely complimentary about the assistance the Cancer Older People and Advocacy project had offered her.
Susan Mackie, Volunteer Advocate, Oxfordshire Advocacy
In this post we hear a volunteer’s perspective on managing the unexpected and developing a Plan B: Linda Forrest is a volunteer advocate at Oxfordshire Advocacy
I have felt a growing awareness of the responsibility of the peer advocate role when the advocacy moves into the unplanned and unexpected. This has now happened on three occasions and for two of them there has been a clash with my family commitments. The concern that I won’t be available and how to deal with it has been preying on my mind. I feel a big responsibility as an advocate to my client, more so when a crisis occurs. I am aware what a difference my support makes to her, especially at these times.
Linda
I want to share this because it can be overcome, as they say, a problem shared…….., and so I have discussed this with my supervising advocate (the Independent Cancer Support Advocate) and we have agreed that I will share all appointment dates with her and she will step in at moments of crisis if necessary; sort of a job share but with me in the front seat, she will be my back up. More importantly my client agrees because it means she will not have to face uncertainty at these difficult times and I can set aside my guilty feelings in the knowledge that we will both be well supported.
Are you a volunteer advocate? What are your thoughts on how responsible you feel about your advocacy partner?
Do comment and let us know. We’re genuinely interested to hear from you.
This question formed the basis of small group discussions at the recent Networking Forum for peer volunteers of Dorset Macmillan Advocacy at Help and Care. Our volunteers come together every other month to share experiences and learn from one another. In November there was a real buzz as our newly inducted team met our volunteers who have already had several partnerships. The groups formed for this particular discussion included a mix of experienced and rookie advocates so the question could be considered from a theoretical angle and looked at in practice.
There was enormous energy in the room and fierce engagement with this topic. Jo Lee, Macmillan Senior Advocate, invited feedback from the discussion and we captured many interesting points including those shown below. One volunteer commented afterwards that she felt that participants had been ‘courageous’.
‘A partner may have other issues such as social issues or co-morbidities which are of greater concern to them.’
‘By getting to know your partner you allow their priorites to become clear.’
‘Guard against saying “I know how you feel” – we all feel differently’
‘The practicalities of how we personally cope could be more relevant that how we ourselves feel or felt.’
‘It could help a partner to know that their peer volunteer advocate has come through difficult times.’
‘Create a safe space for your partner to think and speak in.’
We were very glad to be joined on the day by Rosie Young from Oxfordshire Advocacy (see Rosie’s recent post). Rosie stated how valuable she felt advocacy support had been for her and described her experience to us. Help and Care and Oxfordshire Advocacy are linked as part of the mentoring scheme for new delivery partners and Dorset Advocacy are similarly linked with AgeUK Bristol.
Rosie Young, Cancer Champion, Oxfordshire Advocacy, and Marion Summers, Peer Volunteer Advocate, Dorset Macmillan Advocacy
My personal situation is in 2013 I had a lower left lung removal. A follow up scan was booked for the 18/10/14 followed by an appointment to see my GP on the 28th October this year. I felt relatively happy but apprehensive. Sometimes being a Retired Nurse is both a blessing and a curse.
My advocacy experience
Linda my newly allocated advocate agreed to meet me on the 5th November for our first face to face meeting.
I felt that I could finally let go of being alone, totally in control and a supporter of family and friends to concentrate on me. Advocacy provided someone there to support me to help me be logical, nothing feels stable any more.
On 27th October my Consultants Secretary called me to tell me she wanted to see me on the 30th October. I questioned the need for the appointment but the response was “She wants to see you urgently”.
I was horrified, I needed to call Linda my new advocate but in my panic I couldn’t find her number. Thankfully I found the number for Oxfordshire Advocacy (OA) and explained my situation to Julie. OA sprang in to action and arranged for Linda to come with me to my GP’s appointment. Unfortunately Linda could not make the Consultant’s appointment so OA found me a second advocate.
GP’s Appointment
My GP is wonderful but with Linda by my side to support me, take notes and ask questions that I may forget I felt fairly confident that is until…
There was a new finding “a suspicious node in the right middle lobe”. I immediately went into an out of body experience where you just can’t get back in to you.
Linda could see something was happening and asked questions of my GP, writing everything down so we could have a discussion later.
Linda (L) and Rosie (R)
Linda and I then planned the next few days and what that meant for me.
Keith my second advocate who was coming with me to the consultants’ appointment wanted me to provide him with a briefing as were unable to manage to meet beforehand.
Appointment with my Consultant
The 27th dawned and Keith (my advocate) and I attended the meeting with my consultant together. Her first words to me were “It’s alright it is good news!!!” I should have felt happy and relieved but I was shell shocked, as I had been when they told me I had cancer, and angry for the anguish I had caused my family and friends.
How advocacy benefited me
Keith had written down all the facts from the meeting with the consultant, listening when perhaps my thoughts may have wandered.
Linda and Keith provided reassuring support, without which I am sure I would have gone insane whilst waiting.
What next
I have a scan in 6 months’ time so focus on one day at a time. I am not alone anymore; I can say how I truly feel. There is no need to choose my words nor have guilt at asking and receiving my advocacy support.
I continue to champion the Cancer, Older People and Advocacy project in Oxfordshire so no one has to face cancer alone.
Most recently I was able to help Anne with her application for a one-off MacMillan support grant – she wanted to use the money to help with her heating oil. She had being finding it difficult to fill in the form and so she dictated to me what she wanted to say in her application and I was able to write it down for her (and I could use my experience to help with the spellings of all the drugs she was taking!). She said that receiving the money was very important to her as it eased her worries about putting the heating on in the winter. 
Older People Living with Cancer 