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.
We were delighted to be able to thank our volunteers around the time of Volunteers Week for the energy and enthusiasm they give to helping people affected by cancer in Dorset. Staff from Dorset Macmillan Advocacy delivery partners Help and Care and Dorset Advocacy along with Macmillan Partnership Quality Lead Paula Bond and Macmillan Volunteer Services Manager Sam Hudspith joined the volunteers for a very informal cream tea.
The volunteers were then presented with some donated goodies as well as certificates of appreciation from OPAAL. The garden at The Grove Hotel in Bournemouth, which is open to cancer patients and others with serious illness, was a perfect setting for the afternoon on what must have been the hottest day of the year.
Steve Hewlett’s recent interviews on Radio 4’s PM programme about his experience of cancer have been widely acclaimed. Steve is a writer, broadcaster and media consultant – he is also the editor of Radio 4’s Media Show and was diagnosed with oesophageal cancer in March 2016.
From the outset Steve understood that his treatment was always going to be about extending lifespan rather than curative and Steve has been open and frank about his feelings and experiences both with his family, colleagues and the nation!
As a seasoned journalist, maybe it comes as second nature to him to research and report on his cancer experience but the resultant articles and particularly the interviews with PM’s Eddie Mair have provoked a strong response in those that have heard them with listeners reporting things like remaining sitting in their cars on their driveways to hear the interviews in their entirety. Others have commented on the positive effect of hearing a man (or men as Steve’s 3 grown sons are also interviewed on one occasion) discuss his feelings so openly.
Steve in his cold cap during chemo
From the outset, Steve’s experience has been characterised by choices. Initially choosing the best hospital and treatment and, latterly investigating the possibility of participating in clinical trials.
Faced with a terminal diagnosis and potentially a short window of opportunity (he was told that, left untreated, he would lose the ability to eat or drink within 8-10 weeks) Steve describes himself as being “reduced to tears” but the inefficiencies of the NHS administrative process in securing appointments.
At his very first appointment at his local hospital, Steve describes being seen by a Registrar who suggested a treatment regime but made no mention of an additional drug that Steve had been expected to be offered based on his own research. So Steve politely mentioned it. Leaving the room, a brief corridor discussion between Registrar and Consultant led to the Registrar returning and offering to include the additional drug. On questioning the Registrar agreed that research does suggest that, although patients may tolerate the treatment regime less well, the additional drug provides a 10% improvement in response. Steve comments wryly that 10% seems a lot more significant when faced with a prognosis like his but his main point here is that he felt aggrieved not to have been offered the choice. Unsurprisingly this hospital was not in the end Steve’s choice for his treatment, opting instead to attend the Royal Marsden in London.
The Macmillan Cancer Nurse Specialist present during one interview underlined the importance of taking a second person with you to appointments not least for emotional support but also to be a second pair of ears. Steve agreed that this was great advice but wondered how his 80 year old mother would cope with this process if he found it so hard. “Would she have been able to access the information, would she have been able to get on and off the phone chasing her appointments and ultimately challenge the doctors? How many people just go along with it all passively?”
Here we see an educated, articulated and self-advocating individual describe his experience of navigating the cancer pathway and struggling. As advocates we traditionally support those less able to have their voices heard but Steve’s testimony makes the case for cancer advocacy clear. Even when health care professionals are doing their very best, many of us would find advocacy support invaluable if faced with a difficult diagnosis.
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.
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
It is a sad truth that the people we support at Dorset Macmillan Advocacy have been diagnosed with cancer or are caring for their loved one who have cancer. It is not unusual then that we come into contact with people who have experienced a great deal of loss in their lives or may experience loss during the course of the advocacy partnership. We, as advocates, often find that we are supporting people though some of the most difficult times in their lives and so it is not surprising therefore that we find ourselves personally affected by their circumstances. This is particularly true of our Macmillan Advocates as they themselves have had experience of cancer, and so are likely to recognise parallels at times, with those people they support. As well as supporting people who are bereaved we too experience loss in our roles as advocates and can sometimes be so focused on supporting others that we do not recognise the loss that we experience ourselves.
One of the coordinators on our Macmillan advocacy project felt that inviting volunteers at Dorset Advocacy to come together and share their experiences and feelings on the subject of bereavement might help us to recognise these emotionally difficult times and use them to identify ways of protecting and looking after ourselves.
Initially it was thought that this would be specifically for Dorset Macmillan peer advocates, but through the course of discussions about the training we found that the issues raised were likely to affect all of those volunteers who support vulnerable people across the county and that paid advocates too could benefit greatly from this training, so we decided that it should be opened up a wider group at Dorset Advocacy.
Kate Woodhouse (trained bereavement counsellor) facilitated this training on a sweltering hot summer’s day in late July and a dozen or so of us crammed in to the sauna that was Dorset Advocacy’s training room. There was a mixture of advocates from our volunteer base and paid advocates, all of whom work/volunteer for Dorset Advocacy projects. We spent some time chatting over lunch and sharing ideas and experiences before we reorganised ourselves and sat in a circle. This was a no-barriers style training and so we were not behind tables with note pads: we were sitting opposite our colleagues, ready to listen and to share. Kate ensured that we felt safe within this space and asked us to be considerate and respectful to those who spoke as well as those who chose not to.
Despite the heat it felt as though those who attended were comfortable enough to explore the sensitive subject of bereavement/loss and what it meant to them. We took turns to choose and present objects that represented our own experiences of loss. Many individuals in the group used these objects as a means through which to explain a loss they had experienced and reflect upon it.
We were also encouraged to relate personal experiences, worries, anxieties and difficulties to marbles and add them to a jug of water prompting us to consider how we as people can only cope with so much before we run out of capacity. We explored ways that we, as individuals, can look after and protect ourselves alongside offering support to others so as to ensure that we are in a position to give support.
What this training highlighted to me was the importance of having a free and safe space to enable advocates to speak honestly and openly about their experiences. All of the people at the training had different experiences and had been affected differently by them. We must remember this and ensure that those people who are offering support and sharing the weight of worries and emotions with others are, in turn, able to share theirs and are encouraged to take time and recognise when to focus attentions on themselves.
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.
In today’s post Karen Pigott, from programme partner Dorset Advocacy and Dorset Macmillan Advocacy, tells us about some recent training delivered after a range of delivery partners identified a need for support on complex case work:
On the 16th and 17th February 15 brave souls from a variety of projects across the country attended Complex Case Training in London. The training was commissioned by OPAAL for the Cancer, Older People and Advocacy programme and designed by Jenny Purcell from Dorset Advocacy and delivered by her and myself.
This was the first time the training was delivered so a big ‘thanks‘ to the participants for their suggestions and patience as we tweaked some timings and content to accommodate everyone’s needs.
There was a good mixture of volunteer peer advocates and paid staff with a range of experience which really added to the dynamics and depth of the two days. The importance of being able to share ongoing complex and challenging issues in a supportive environment with a problem solving approach cannot be underestimated.
At the end of the course all but one participant scored themselves as having increased confidence in approaching complex case work.
Every participant received a ‘Tool kit for Complex Case Training’ to enable them to cascade it through their own organisation.
It was an intense two days but hopefully everyone is confidently applying everything they learnt and shared in whatever situation they find themselves in!
The first of our Cancer, Older People and Advocacy films provides a strong introduction to the Cancer, Older People and Advocacy programme. It’s a short film intended to give a flavour of the programme, demonstrating the difference independent advocacy makes for older people affected by cancer.
This film also brings a focus to the support we offer to older people affected by cancer who don’t have cancer themselves. It features Mike Pochin from Dorset Advocacy talking about the emotional pressures that carers feel, the role peer advocates can play in being a listening ear for carers and helping give clarity about the help they feel they need and the additional services that they might access to get that support.
This film features older people affected by cancer, and volunteer peer advocates talking about the need for independent advocacy, the benefits having the support of an advocate can bring for any older person affected by cancer and encourages you to find out more about our programme:
We’ll be back tomorrow with a film aimed at encouraging new volunteer peer advocates to join us.
Do you want to see our Cancer, Older People and Advocacy (COPA) programme brought to life in film? Then stay with us all this week to find out more!
Our Older People’s Cancer Voices project is funded by Department of Health to September 2017. This project is about amplifying older people’s cancer voices into a wide range of settings to bring to life the effectiveness of independent advocacy support for older people affected by cancer.
Margaret and Vivian
A key output of the project is a set of films featuring older people affected by cancer, together with their volunteer peer advocates, and health and care professionals and commissioners, talking about the difference advocacy makes.
Throughout spring and summer 2015 these project partners worked alongside OPAAL and our filmmaker Meirion Harries of Webenable to bring together older people affected by cancer who wanted to use their knowledge and experience to develop better services for their peers. In addition to securing a fantastic team of volunteers and advocacy partners who were willing to go in front of the camera our project partners themselves participated. They were able to secure a wide range of health and care professionals and commissioners whose experiences will support and encourage their own professional peers to see the value of advocacy for older people affected by cancer.
As project partner Janet Cullingford from I-CANN reflected in a recent blog post:
Everyone who took part commented on how much they had enjoyed being a part of it, and were made to feel at ease by both the interviewer and Meirion. It also provided fascinating insights into the way that films are edited, cuts used, even the importance of lighting.
OPAAL’s Ang Broadbridge reflected on her experience of the filming process:
This series of films forms part of a package of capacity building support that cancer, older people and advocacy project partners can use to promote and develop their services. Each film has a call to action; for example to encourage new volunteers, to support health and care professionals to make referrals, and we are excited about showcasing these films and getting these key messages heard. I’m hugely grateful to the project partners and participants for their support in making these films a reality, I want to say a big thank you for all your support!
Thanks also to Meirion who has captured so well the experiences of older people affected by cancer, the motivation, commitment and passion of our volunteer peer advocates, and the understanding of advocacy that the professionals we work alongside have developed. Meirion’s own understanding of advocacy and sensitive approach to storytelling has helped us to really capture and amplify the voices of older people affected by cancer.
We’ll be releasing a film each day this week on the blog, starting with an introduction to the Cancer, Older People and Advocacy programme tomorrow, make sure you visit us again to be the first to see it.
Dorset Advocacy recently commissioned OPAAL to write a good practice guide drawing on the learning from Dorset Advocacy’s Memory Network project, which was funded by the Health and Social Care Volunteering Fund. The project had three key aims:
To help people in the earlier stages of dementia to capture their life stories
To train and support volunteers as life story facilitators
To use completed life stories as a resource for ensuring person-centred care planning continues, even if the person subsequently loses capacity
Volunteers were trained to help people to capture their memories on iPads, using the TimeBox app. The benefit in using iPads was that source materials such as historic photos, songs etc. could be retrieved during memory sessions and used as triggers for discussion.
Gary Kitchen was the OPAAL consultant given the task of compiling the good practice guide. At first, the project developed much more slowly than Dorset Advocacy had anticipated. There were difficulties in recruiting and retaining volunteers, and in identifying suitable sites for memory recording to take place.
Mike Pochin, Dorset Advocacy
Things have developed much more quickly over the past year, however, and this has generated useful good practice data. Gary’s completed report covers the benefits of memory recording, ethical considerations, creating a framework for a memory record, and other aspects too. A key learning point is the need for further consideration of whether, and how, memory recording could be undertaken with people who have already lost the capacity to consent to creating a life story.
Although Dorset Advocacy’s Memory Network project is now completed, work on developing life stories continues through the organisation’s involvement in the local Memory Support and Advisory Service, led by Alzheimers Society. Staff and volunteers are offering advocacy and/or life story facilitation to people who have received a recent dementia diagnosis.
The OPAAL/Dorset Advocacy Guide ‘Supporting People with Memory Loss to Record their Memories and Life Stories’ by Gary Kitchen is available from email@example.com