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.
Aneesah, advocate at our delivery partner ICANN, tells us about Valerie (not her real name) and her issues around divulging that she is HIV:
I received a referral for Valerie who had used us as a service in our previous advocacy work. She was diagnosed with breast cancer but was in the very early stages of recovery. Therefore, she was extremely emotional when we initially met. Because I already had an established relationship in our previous advocacy service Valerie felt comfortable to talk to me openly about her feelings and concerns.
Valerie’s ethnicity and cultural background played an important role in how she felt and how she mentally perceived how she should be handling her medical problems. She’s from African descent and although she was living with her sister she was of the strong opinion that she needed to be emotionally strong and expressing her true feelings and worries was a great sign of weakness. Yet equally it was clear to me that these vulnerabilities and insecurities were taking a very big toll on her and was having a far deeper rooted impact on her mental health.
These feelings of guilt and shame were exasperated as she had also been diagnosed as HIV positive some years ago. Due to Valerie’s concerns she felt that this was another medical condition that needed to be keep hidden. What came through in our conversations was that although fortunately she had a very good and trusting relationship with her consultant the diagnosis of breast cancer meant that she had to constantly disclose the fact that she was HIV positive to other medical health professionals, particularly during the period she was undergoing chemotherapy as the requirement was to have regular blood count checks. Because she was highly conscious and anxious about her diagnosis of HIV coming to light, she found the whole treatment procedure very tense and traumatic.
By the time she established contact with me she had many unexplored and suppressed worries. Her main reason for contact was an approaching benefits assessment. Valerie felt she was forced into a situation where she would have no choice but to discuss medical issues she was highly uncomfortable with.
In our meetings which followed over a couple of weeks I was able to talk and reassure her that she should not feel shame or guilt towards her condition. As time went on we met regularly and Valerie was able to make the vital step of being able to talk about her condition without supressing her true feelings. I was able to reassure her that for the purpose of the benefit assessment it was vital to disclose both of her medical conditions in depth as her eligibility would depend on this.
Aneesah
Over time I was able to build a trusting and secure relationship with Valerie and this really helped me to advocate on her behalf. Consequently when we were in the assessment she was able to depend on me to talk on her behalf on occasions when she found things difficult to explain to the assessor or when she became uncomfortable.
As a result, Valerie was successful in receiving the benefit and the experience allowed her to recognise that professionals in general work using the ethic and principles of being impartial and non-judgmental. The experience clearly demonstrated to her that although she felt that by disclosing her medical conditions she would be judged and perceived in a negative and possibly prejudiced way, this in reality was clearly not the case.
As a result of this experience and advocacy support we were then able to arrange specialist focused counselling services as a more long term plan to deal with her anxieties.
This particular experience demonstrated to me and to Valerie that by working on her emotional insecurities and coming to terms with her health condition it was going to enable her to consciously make the effort to attend future appointments in relation to regular health checks at the hospital. Ultimately advocacy support empowered her to be in control of her health, which hopefully now will contribute to improving her quality of life.
Today Jen Rimmer, advocate from Dorset Macmillan Advocacy and Dorset Advocacy, looks at the barriers to patients being more involved in decisions affecting their care:
BBC Radio 4’s Inside Health (listen here: http://www.bbc.co.uk/programmes/b07vs2p0) reported on NHS Wales’ new initiative ‘Choosing Wisely’ which is attempting to challenge the general atmosphere that doctors know best and encourage patients to engage more actively in the decision making process around their tests and treatments.
Dr Paul Myers, Chair of the Academy of Medical Royal Colleges in Wales who is leading the new initiative was interviewed on the programme. He explained that the NHS is, “often too quick to offer patients treatments and interventions that don’t always benefit them and may even harm them…up to 10% of interventions in healthcare are inappropriate and perhaps even harmful”
To tackle this, patients are being encouraged to ask 4 key questions of their clinicians:
What are my options?
How likely is the treatment to benefit or harm me?
Do I really need it?
What can I do to help myself?
In tandem there is work going on to ensure that the clinicians are more receptive to patient questioning in an NHS culture dominated by time constraints and clinical decision making processes increasingly driven by guidelines and protocols.
Dr Myers describes findings that patients, “continually express that they’d like to be more involved in the decisions made about them” but at the same time many patients state that they have difficulties having conversations with their clinicians.
The Choosing Wisely initiative acknowledges that failing to understand patients’ needs and wants often leads to high levels of patient dissatisfaction and that spending time in the initial consultation listening and identifying the concerns, values and preferences of the patient pays dividends later down the line.
But what are the barriers to achieving this and how can these be addressed? Well for those of us who already work in healthcare advocacy, one useful strategy is clear!
Dr Margaret McCartney, a regular contributor to Inside Health, highlights some of the issues – time constraints in appointments and the problem in assuming that every patient is able to take in and process the information given to them in such a way as to reach an informed decision.
Jen Rimmer
As advocates, we see this all the time. Ensuring that a person with a known cognitive impairment or learning disability is supported to digest information and come to the decision that is right for them is a given but we also see usually assertive and self-advocating individuals floored in the face of important and stressful medical decision making processes. This can be due to the emotional and psychological shock they are feeling or simply being unfamiliar with the medical domain. Advocates have both the time and the skill to support patients to make decisions and, as we have seen here in Dorset, both cancer patients and clinicians report positive outcomes as a result of Independent Advocacy involvement before, after and at appointments.
It is great to see initiatives such as ‘Choosing Wisely’ and similar programmes are set to roll out across the UK later in 2016 but if the NHS fail to consider how Independent Advocacy could support this, they might be missing a trick!
Jen Rimmer, advocate, Dorset Advocacy & Dorset Macmillan Advocacy
Having recently revisited some of the cases of older people affected by cancer who received support through advocacy, it became apparent that not only did we have a professional relationship as advocate and client whilst dealing with their issues, but also that during their journey we had become friends.
What I didn’t envisage was that through supporting them, I would get to know them so well. In so many cases I’ve learned about their lives from an early age, where they grew up and all about their families. I love to hear about and feel privileged to hear their stories, and how their cancer journey has affected them and their loved ones.
Valerie McGregor
I have found that as an advocate, and especially whilst dealing with older people affected by cancer, it becomes apparent that very often, the client will minimise their issue and I hear them say they they feel there is someone else more in need of this service. The joy of this service is that we do have the time to spend in getting to know people, and giving them as much time as they need to identify the areas they would most benefit from some help. In this getting to know each other period, it really can begin to feel like chatting with old friends.
It’s always good to hear positive feedback about the Cancer, Older People and Advocacy project and the service it provides, but it’s also good to know that having an advocate has been so helpful, that we are now regarded as friends. It’s clear that being there to listen or to talk things through can make such a big difference.
So many of the people who have accessed this service have said that they feel they have a friend for life which I find so humbling that I have been able to make such a positive impact.
Today we hear from Emily Brown, Interim volunteer manager and independent advocate at Dorset Macmillan Advocacy:
I am new to Dorset Macmillan Advocacy service, not to Dorset Advocacy, but I am a newby on this project. I have been blown away by the dedication given to it by staff at Help and Care and Dorset Advocacy, the members of our Cancer in Older People Development Group and of course by all of those volunteers who give their precious time and share and draw from their own experiences in order to support those that need it. I have come at an exciting and challenging time as we strive to illustrate the benefits, positive outcomes and impact of the service on the people we support…we know the impacts because advocates see this first hand, but how do we convey its importance to others when times are tough, and how do we show that advocacy can also be a benefit to the NHS?
Jenny Purcell and Karen Piggott of Dorset Advocacy were invited to speak at the Clinical Commissioning Group’s (CCG) lung cancer pathways information day last month. They presented to a number of professionals on the benefits and impact of advocacy. We often talk about the benefits of advocacy for the individual which is, without doubt, the most important thing but what is not always considered are the benefits of advocacy for the service providers.
We have recently received an independent evaluation of our service which illustrates exactly this. Essentially what the evaluation does is highlight how the introduction of advocacy support can help to ensure that the choices that the person makes are well informed, that the individual has a consistent person throughout their journey, and that as a result the input of advocacy can help the process to move more swiftly, advocates can ensure that people can keep to their appointments and that the individual’s other concerns are being addressed allowing them to focus on decisions about treatment.
In fact there was a recent example with one of our cases when a health professional at Dorset County Hospital postponed an appointment by a few days in order for an advocate to be able to meet their partner and attend this appointment with the patient. This action alone indicates to me that this health professional recognised the value in having an advocate present to support at the appointment.
Our work continues with the CCG in Dorset to initiate the introduction of advocacy as a recognised standard of good practice on the lung cancer pathway. We are not there yet but the evaluation along with our Case for Support will, we hope, enable us to convey the impact of advocacy and put together a pilot scheme that can illustrate the values of the service for the service providers as well as those who receive it.
Evidence of the impact of small, community-based services is often hard to convincingly portray. We can tell stories about the people who have used our services. These stories generally generate positive responses about how “obviously” a good service is being provided. However, when it comes to securing on-going funding for services, more robust evidence is required.
This is the situation I was in a few years back when I was a Macmillan Information and Support Service manager of an innovative service based in Manchester’s community libraries. We were lucky, after 3 years of Macmillan funding, I was able to secure another 3 years of funding from The Big Lottery. My experience of running the service, and the endless task of proving its worth, spurred me on to complete a MSc in Social Change at The University of Manchester. I enjoyed the experience of returning to study, and now I am researching full-time towards a PhD focussing on the social support needs of older cancer patients.
Through my research I have maintained contact with Macmillan and established new links with OPAAL and the Cancer, Older People and Advocacy project. The work being carried out by the Cancer, Older People and Advocacy delivery partners directly parallels with my theories about the support needs of older cancer patients. The stories that are shared through this blog highlight the important and valued role that the cancer advocates are playing.
Patty
I am now in the position to support the evaluation of the Cancer, Older People and Advocacy project by conducting independent research into the impact of advocates on the experiences of older cancer patients. I am hoping to travel to several of the Cancer, Older People and Advocacy delivery services to carry out interviews with older cancer patients who have used the services, hear their stories, and draw together an analysis of the impact of advocacy.
So far, I have interviewed two people who have used the ICANN service. Recruitment of participants for this research involves the support of the advocacy organisations involved, and I am very grateful for the support from Janet Cullingford from ICANN for her support in arranging the first two interviews. Recruitment is dependent on the organisations’ advocates and workers, and requires negotiation and in some cases persuasion on their behalf to get participants on board. However, the potential benefits are high. Hearing the stories of older people affected by cancer who have used an advocacy service provides a contrast to the more common ‘expert patients’ used in many other qualitative studies.
Patty with Janet from ICANN
Listening to the stories of older cancer patients provides important insight into personal experiences of having cancer treatment. From these experiences we can learn about how the principals of shared decision-making are applied in treating cancer, if indeed they are. Initial findings suggest that from the patient’s perspective there are limited decisions to be made, and health professionals are trusted and relied upon to make the treatment decisions.
Support during the cancer journey is highly appreciated, especially post-treatment. One older person said that “without [my advocate’s] support I don’t think I would have got through it”.
However, more interviews are needed to explore these initial findings further. I am now hoping to recruit several more older cancer patients to be interviewed. For more information, contact Patty Doran, Cathie Marsh Institute for Social Research, The University of Manchester, patty.doran@postgrad.manchester.ac.uk
I read a fascinating blog recently by Owen Jarvis published by the Clore Social Leadership Programme. In ‘When Bees Meet Trees’, Jarvis argues that major funders have a critical role to play in building collective approaches to social problems.
Funders have the ability to design their programmes so that organisations work together as a community with a common goal. Some people call this “collective impact networks”.
As Ruth Marvel says, large organisations, ‘trees’, feel they have to do everything themselves – including social innovation. This doesn’t play to their strengths.
They can achieve social mission and find new ideas more effectively if they supported the work of others, “bees”. These are smaller groups like OPAAL, entrepreneurs and charities – nimble, creative and fast-moving, often lacking size and impact.
This support can include investment. However, the strengths of “trees”, working nationwide, strong brands, networks and influence, can be used to encourage adoption of new ideas by government, the public and other organisations.
Our Cancer, Older People and Advocacy project is one example, and has shown that large charities like Macmillan Cancer Support can play different roles in supporting individual organisations to overcome competition to work collectively.
We are very lucky having Macmillan’s support. In addition to funding us they play a very special role in making their many specialist staff available to us providing OPAAL with a readily accessible ‘extended family’ of experts to support our work to improve the lives of many older people struggling with the impact of a cancer diagnosis and the effects this has on everyday life.
We are currently reaching the end of a six months programme bringing together 24 partner organisations to help us plan our £1 million Flagship bid to the Big Lottery Silver Dreams programme. This funding is critical and (if successful) with additional investment by Macmillan Cancer Support will help us support over two thousand older people over the next three years. Together we’ve involved hundreds of older people up and down the country in this planning stage, we all hope the decision makers at Big Lottery are influenced by the “When bees meet trees’ report and willing to invest further in this type of social change.
Like Jarvis and Marvel I too believe social change happens when “bees meet trees”, this report needs to be widely disseminated to inform other potential ‘trees’.
Older people tell us our work is exciting, innovative and in many cases changes lives. Wish us luck with our bid, and if you are a social media ‘tweeter’ do please pass this one to your networks.
Visit the Clore Social Leadership Programme website to download a copy of the “When Bees Meet Trees” report
Older People Living with Cancer 