The Dorset Macmillan Advocacy steering group (Cancer in Older People Development Group) met at Lewis Manning Hospice on a sunny day in Spring with the usual packed agenda.
A key discussion topic was how learning from the advocacy services can feed in to local service improvement. We noted how the team of peer advocates from Getting Heard in Oxfordshire had produced a report with suggestions which had been well received by the local Trust.
There were plenty of informed contributors: Tracy Street, Macmillan Engagement Coordinator for Dorset attended to lead the discussion on user involvement (Tracy had been responsible for patient involvement at the Dorset Cancer Network); Paula Bull who has joined the steering group has been a part of the Dorset Cancer Patient group for many years; Lynn Cherrett, Lead Cancer Nurse at Poole Hospital is working closely with the new Dorset Cancer Partnership (DCP) (the local Cancer Alliance). Together with the DCP chair Lynn is working to create a new Dorset Cancer Patient Experience Group.
Informal discussions after the meeting Front L to R Julie Cook, Acute Oncology Nurse, Dorset County Hospital, Rachael Brastock, Macmillan Psychological Support Lead, Genevieve Holmes, Macmillan Coordinator/ Senior Advocate for Dorset Macmillan Advocacy at Dorset Advocacy, Cait Allen, CEO Wessex Cancer Trust Back L to R Graham Willetts and Charles Campion-Smith
It was agreed that the advocacy service will have a part to play in future local cancer service improvement. People affected by cancer (patients and carers) are steering the service, delivering the service and benefiting from the service. They have unique insight into how people in Dorset are experiencing the current cancer care pathways which can be usefully added to the views of trained patient representatives.
Bob Smith, peer volunteer advocate and Paula Bull
The group also welcomed Cait Allen, Chief Executive of regional charity Wessex Cancer Trust as a guest. Cait gave an update on the development of services in Dorset including the Bournemouth Cancer Support Centre which offers drop in support.
The working group argues that ‘currently there is a negative cycle in cancer care, where a short-term approach leads to rising costs in cancer, makes fewer resources available, provides inadequate patient support which re-enforces the need for a short-term ‘just managing’ approach.’ It proposes ways to break the negative cycle.
To address this challenge, The Patients Association and Bristol-Myers Squibb are working alongside experts and patients from across the cancer space to identify new models of service delivery, showcase best practice, and provide real improvements in patient care.
The report discussion includes sections and recommendations on:
Identifying, incentivising and implementing best practice
Developing effective prevention strategies
Implementing best practice in the early diagnosis of cancer
Delivering timely access to treatment
Engaging patients in delivering innovative care pathways
To my mind the report blurs the issue of patient engagement and involvement in service improvement and that of individual patients who are ‘engaged’ and active in their own healthcare journey. Both are important and worthwhile while distinct from each other.
I think that the argument for ‘engaging patients in delivering innovative care pathways’ reads like a explanation of the benefits of independent advocacy support:
‘Educating patients with cancer about self-management and empowering them to play an active role in the decision-making process was considered to likely result in an improvement of patients’ knowledge, understanding of their condition, adherence to treatment and engagement in their healthcare. Whilst not all patients will want to play an active role in their treatment and care, it is important to provide patients with the opportunity and the choice to make their preferences clear and also tell us what a “good” treatment outcome looks like for them.
‘The Working Group described these users as “activated patients” who can lead the charge for the adoption of best practice care. According to Working Group attendees, the evidence suggests that “activated” and informed patients use an average of 20% fewer resources than less informed counterparts.’
Advocacy support is unfortunately still relatively unknown and it is not uncommon to read policy reports in both health and social care spheres that appear to describe it and recommend it without ever using the term. I believe that independent advocacy support and particularly that provided by peer volunteer advocates has a role to play in breaking the negative cycle of cancer care. It can certainly be preventative and facilitate timely access to treatment in addition to empowering patients. I would like to see it recognised as an integral part of the cancer care pathway, recognised as best practice and implemented nationally.
Kathleen Gillett of Dorset Macmillan Advocacy looks at the plight of older carers:
We are currently supporting a lady in her late 70s who has a long term health condition and was until only a few weeks ago cared for by her husband. A sudden deterioration in his health owing to a progression in his cancer has turned the situation upside down and she is now his carer. With no family in the local area she must alone cope with taking care of things at home that were formerly his domain and at the same time communicating with many professionals with unfamiliar job titles. No wonder she felt anxious and said ‘I don’t know where to start.’
There have been many reports about the needs of carers over the years. The importance of supporting carers is widely recognised but until now there has not been a lot of detail about older carers. Carers Trust have published Caring About Older Carers: Providing Support for People Caring Later in Life which is a toolkit aimed at commissioners of health and social care in England to highlight the needs of carers over the age of 60.
The statistics are compelling. The number of older carers is increasing at a greater rate than for carers as a whole. Three in five of carers aged over 85 are male and most carers over 80 spend more than 50 hours a week caring. Carer’s health deteriorates incrementally with increased hours of caring. Older carers are more likely to have age related illness themselves – two thirds of older carers have long term health problems. One third of older carers have cancelled treatment they needed due to their caring responsibilities.
Carers of all ages deserve recognition and support. Older carers need the support perhaps more than anyone. From a financial perspective research has shown that carer breakdown is often a factor in emergency hospital admissions and admission to residential care.
The toolkit chapters identify areas of need for older carers including health and wellbeing; financial concerns; social isolation; concerns for the future; information and advice; assessment, support planning and involvement and finally bereavement and life after caring. Examples of tried and tested practice are given with each of the chapters and particular mention is made of the role of advocacy services in representing and supporting carers with assessment, support planning and involvement.
We were able support the lady at an appointment with the hospital’s palliative care coordinator. Then we accompanied her to view a nursing home where her husband could be admitted to receive the palliative care he needs. She was able to make preparations and the following week her husband’s planned discharge from hospital took place. The nursing home location is easier for visits and there are no restrictions on visiting hours and the possibility of overnight stays for family members.
Older carers struggle to remember their own needs and to look after themselves. The support and encouragement that peer volunteer advocates can bring to older carers affected by cancer can make a huge difference to them.
Back in May three volunteers from the Dorset Macmillan Advocacy service at Help and Care were fortunate to be able to attend the Macmillan Volunteer Conference in Hinkley, Leicestershire as volunteer Peer Cancer Advocates. We were really enthusiastic about this although a little apprehensive too. We arrived at the hotel and were immediately made welcome by the friendly hotel staff and the Macmillan welcome team.
Bob and Maddy with friends
After check-in we made our way around the exhibition area which had many stands showing different aspects of the Macmillan organisation and ideas to help us as volunteers. Did you know for instance that there are Macmillan trained Boots No7 beauty advisors who know how to help people with cancer best use their products and feel good about themselves?
Throughout the Friday and Saturday there were sessions in the main conference hall as well as workshops we could attend on topics including Networking, Communication, Getting Your Story into the Media and Managing Stress to name just a few.
There were very interesting speeches from Lynda Thomas (CEO, Macmillan), Joelle Leader (Volunteering Director) and several others.
Lynda Thomas
There were so many interesting facts to learn for example in one year Macmillan:
Supported 5.8M people affected by cancer
590,000 were supported by Macmillan nurses
£260M was raised to fund Macmillan (£27.5M from coffee mornings alone)
Also we heard that
Mobile services are provided for hard to reach areas
Discussions are ongoing with government departments to better support those affected by cancer.
All new information to the both of us.
We managed to speak with both Lynda Thomas and Joelle Leader about Cancer Advocacy. Speaking to them opened up opportunities to raise our profile and present Cancer Advocacy to Macmillan Customer Service Centre staff and those who operate Macmillan mobile service buses in the South of England. We also spoke with many of the delegates to find out about them and tell them what we do. Many were interested including a GP (also a Macmillan volunteer) in Brighton who is now actively promoting Cancer Advocacy. So an excellent conference, lots of learning, networking and a lot of fun too. On the Friday evening there was a gala evening to celebrate what volunteers do with dancing to a live band afterwards.
A theme for the conference was:
BUILD on your existing skills and knowledge
LEARN from other Macmillan volunteers
SHARE your stories and experiences
We certainly did all these as well as recognising and celebrating the value that Macmillan volunteers give back to our communities. It was time very well spent and we would encourage others to apply to go along next year. We came away invigorated and excited with new ideas on how to better promote Cancer Advocacy and ready to help even more people affected by cancer.
Bob and Maddy Smith, Dorset Macmillan Advocacy
(N.B. Dorset Macmillan Advocacy is funded by Macmillan Cancer Support)
Did you know that as part of our work we’ve developed Quality Standards for the provision of advocacy support for older people affected by cancer? The standards set out what clients should expect when they receive independent cancer advocacy services. They are the standards that are demonstrated on a day-to-day basis by good older people’s cancer advocacy services.
The standards are a way of us reinforcing and demonstrating professionalism and commitment in our cancer advocacy service delivery. There are organisational, partnership, monitoring and evaluation, service provision and training, supervision and support standards. Each standard contains a series of statements that, taken together, signify what a good older people’s cancer advocacy service looks like. It puts the interests of clients first, is safe and effective and promotes trust through a professional and person centred approach.
ICANN is the first of our delivery partners to go through the cancer advocacy Quality Standards audit process and we’re delighted to say, the first to receive their compliance certificate from OPAAL. Many congratulations to them.
In today’s blog post, Sandra from ICANN tells us about the process:
As a volunteer with ICANN based in Preston Lancashire, I was flattered to be asked to consider looking to see if ICANN is meeting the Quality Standards for the provision of advocacy support for older people affected by cancer. Was it something I might like to have a look at, as to whether we would be eligible to apply? As always Janet treated me as a volunteer so no pressure however a chat over coffee and I was happy to have a go.
I spent a couple of hours at home looking through all the audit requirements and going through all the data on the ICANN website that I thought would fit. I was pleased to see that ICANN could measure up to meet most of the requirements and was aware in a couple of areas there would be more material available by talking to other volunteers.
Sandra
I set aside a Monday morning with Janet in the ICANN office and we went through all the standards categories filling in some of the blanks. Only one area needed to be addressed which we talked to the CEO about. Later I also spoke to two other volunteers for help and input in their speciality areas, which was very useful.
A few weeks later I spent a further two mornings in the office mostly spent writing up a fair copy, and checking policies and procedures were as required. I am pleased to report that the area missing is now in place. I found it useful to complete most of the work in the office as Janet and Pat (Admin) were on hand to help with any queries.
I have found this a really rewarding task and confirmed what I know that ICANN is a good and well led charity. Going for the Quality Standards is the right thing to do and I did not find it too onerous.
Our Local Cancer Champions Board, the steering group for Dorset Macmillan Advocacy, changed its name in 2014 to Cancer in Older People Development Group. Members wanted to create a group that could, in addition to overseeing our service at strategic level, bring together people interested in improving patient experience for people over 50 affected by cancer and their carers. They felt that the new name was more self explanatory and we are fortunate to have an interesting mix of people on the group.
As Dorset Macmillan Advocacy is delivered by two organisations in partnership the steering group sought to meet alternately on different sides of the county. Meetings have been hosted since 2014 by Lewis Manning Hospice in Poole and since last year by Joseph Weld Hospice in Dorchester. We have benefited from learning about the hospices and our presence there has raised our profile with their staff and visitors.
We also invite local guests to the group meetings such as the project lead for the Macmillan Information Scoping Project which took place last year and the director of Dorset Living Well Active, a physical activity project which is a partnership between Macmillan and Sport England. The group can explore joint working at both strategic and operational level and this really enhances the daily networking that staff and volunteer advocates do.
The new Chief Executive of Weldmar Hospice Care Trust, Caroline Hamblett, joined our last meeting in May and described the variety of community services that the hospice provides. Senior Sister Sally-Anne Baverstock then gave the group a tour of the facilities which include 14 in-patient beds all with views over the beautiful garden and countryside beyond. We’ll arrange a visit for our team of volunteer advocates in the near future.
Pictured left to right are Sally-Anne, Paul Hickman, Chair of Trustees at Help and Care, Emily Brown, Senior Volunteer Coordinator at Dorset Advocacy, Jenny Rimmer, Macmillan Senior Advocate at Dorset Advocacy, Bob Smith, volunteer advocate.
Kathleen Gillett from programme partner Dorset Macmillan Advocacy writes in the second of two posts about how our peer advocates can support older people affected by cancer achieve voice, choice and control in their cancer journey:
Whilst getting to grips with the notions of ‘health literacy’ and ‘patient activation’ that I read about in a report by Macmillan Cancer Support I went on to think about how health literacy and patient activation might interact and found it easiest to use a graph.
So, person A has a high level of health literacy but a weak level of patient activation. They know and understand a lot but lack motivation to move forward. Person B has very strong patient activation but is hampered in decision making by lack of knowledge and poor understanding. Person C has a balance represented by their position on the dotted line. Their level of health literacy and patient activation are sufficient to allow them to move forward without one impeding the other.
What can independent advocacy support potentially do for persons A, B and C? Provide emotional support to build confidence and source practical help to reduce barriers thus enabling person A to strengthen their patient activation (and move closer to the dotted line). Source information in an appropriate format and create opportunities for discussion to check understanding with person B thus increasing their health literacy. Help person C to maintain their balance and grow in both knowledge and confidence throughout their journey (travelling up the dotted line).
There’s no right place to be on this graph, just as there’s no single right way to handle a cancer diagnosis. In reality persons A, B and C will have their own views on what help they need and the role of advocacy is to empower them to express those views. They can be supported to move in a particular direction only if they have expressed the wish to do so.
What of people with both low health literacy and weak patient activation? Older people may be more likely to be in this situation with the risk of low general literacy from limited educational opportunities, having to contend with multiple long term conditions that sap time and energy and having only patchy social support networks. Tailored empathetic peer advocacy support that comes to them at home and stays with them for as long as needed can nevertheless help them to achieve voice, choice and control on their cancer journey.
Kathleen Gillett from programme partner Dorset Macmillan Advocacy writes in the first of two posts about how our peer advocates can support older people affected by cancer achieve voice, choice and control in their cancer journey:
I recently read the terms ‘health literacy’ and ‘patient activation’ in a report by Macmillan Cancer Support and found them useful labels for ideas that had been floating about in my head.
‘Poor reading and comprehension skills are not always taken into account when providing accessible information and support, with serious implications for health inequalities and outcomes. While the problem of functional literacy remains a huge challenge, it is possible to be fully literate and yet health illiterate. Health literacy concerns the ability to read, understand and act on health information, as well as navigate the health and social care system.’
Practically, low health literacy can impact on patients in a number of ways. These include their ability to follow treatment plans, seek support, participate in consultations, understand performance data, understand the implications of provided information, and communicate their own values and needs. Individuals vary in their level of patient activation – the measure of a person’s skills, confidence and knowledge to manage their own health.’
It helps me to relate theory to practice and I thought of two people that we supported in the early days of Dorset Macmillan Advocacy.
The first advocacy partner described herself as having been ‘a poor scholar’. She disliked written information and kept hospital paperwork out of sight. You could say her level of general literacy was low. Her health literacy or her ability to understand her condition, her treatment plan and its implications risked being affected by her general literacy. She knew that verbal processing of information through discussion worked much better for her. She had been able to ask a health professional for a translation into plain English ‘Does that mean…?’ With her advocate she was able to discuss her condition and the implication of treatment options at several key stages of her journey. She said that having an advocate also boosted her confidence.
The second advocacy partner sought to increase his level of health literacy. He undertook extensive internet research into his condition and travelled to see a specialist. He also had a very strong level of patient activation. In other words he was strongly motivated to be actively involved in clinical treatment decisions and make lifestyle changes that he judged to be beneficial to his situation. However his responsibilities as a carer presented a physical barrier that also put him under huge emotional strain. His advocate worked with him to put arrangements in place that permitted him to move forward with his own treatment.
The two people described had different cancers, different personal circumstances and different personalities but both benefited from advocacy support which is always tailored to each individual’s needs and situation.
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)
Older People Living with Cancer 