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.
Kath Curley of Cancer, Older People and Advocacy delivery partner Beth Johnson Foundation and Staffs & Wolves Cancer Advocacy and Support Project Manager shares a post recently published on their own project blog. She tells us about her attendance at a recent conference marking Dying Matters Week:
Dying Matters Week in Staffordshire was celebrated by a Palliative and End of Life Conference organised by University Hospitals of North Midlands on Thursday 11th May. The Conference was entitled “I didn’t want that: Why patients’ wishes matter” and was attended by over 250 delegates from across the Midlands. BJF had a stand to promote the dementia and cancer advocacy projects and was therefore able to join the Conference.
The conference was packed
There were some eminent speakers including Dr Sara Russell, Head of Research and Clinical Innovation at Hospice UK, who showed a very thought provoking film from ZdoggMD; “Ain’t the way to die” which you can find here
Sara’s message was that professionals should be asking “What matters to you?” rather than “What’s the matter with you?”
Amanda Cheesley, Professional Lead Long Term Conditions and End of Life Care with the Royal College of Nursing followed on and very much reiterated Sarah’s messages. She opened by talking about the “essence” of the person – who we are, what we are – doesn’t go away when someone dies or is dying. We should look at what is important to people emotionally, physically and spiritually.
Jan Cooper, Regional Liaison Advisor at the General Medical Council discussed the End of Life/ Palliative Care Guidance. Decision making should be a partnership and this will require a change of culture. At one time professionals made the decisions, then it swung to patients making the decision but it should be co-production – joint decision after listening, discussing and sharing information.
After lunch there were two more “professionals “ presentations from Claire Henry – the Chief Executive Officer of the National Council for Palliative Care and Dr Katherine Bristowe , a post-doctoral researcher at the Cicely Saunders Institute, Kings College, London. She has a particular interest in widening access to palliative care, and recently worked on the ACCESSCare project (funded by Marie Curie), a national qualitative interview study of LGBT people facing advanced illness and bereavement.
At this Conference the best was most definitely left until the end. The Conference closed with a presentation from Tommy Whitelaw, Project Engagement Lead for Dementia Carer Voices. He was a carer for his late mother Joan for 5 years as she had vascular dementia. He told us about his beautiful mother, Joan Whitelaw, NOT the disruptive lady in bed 6! He talked about his experiences with health professionals during his time as a carer and the importance of reassuring carers that they are doing a wonderful job.
Tommy travels across Scotland to raise awareness of the impact of dementia on families and the importance of empowering carers to carry out their difficult but vital role. Lessons to be learnt for people caring for someone with any terminal condition. There was not a dry eye in the Conference!
Joe Potts, Macmillan End of Life Care Facilitator, University Hospitals of North Midlands is to be congratulated on a stimulating, thought provoking conference – a job really well done.
Kath Curley, Staffs & Wolves Cancer Advocacy and Support Project Manager
Kathleen Gillett of Dorset Macmillan Advocacy (DMA) tells us about the acknowledgement that someone is needed to act as the “glue in the system”:
At the 2016 Macmillan Professionals national conference which I attended last autumn Fran Woodard, Executive Director of Policy and Impact, Macmillan Cancer Support, spoke about personal experience of cancer in her family and said that the system is impossibly difficult to navigate as treatment gets more complex and people are living with more co-morbidities. Her welcome address was about workforce. She said there is a need for a focus on coordination, navigation and support with one person who is the ‘glue in the system’.
A new role has been trialled in some parts of the country titled Macmillan Support Worker and a number of these posts will be funded by Macmillan in Dorset over the coming year. Support Workers will be based in hospital Trusts alongside clinical staff and there will be some flexibility for each Trust to define their role and which cancer pathways they will support.
During break time I spoke with Simon Philips, Executive Director of Strategy and Performance, Macmillan Cancer Support, about how the advocacy service might mesh with the new Support Worker roles in Dorset. I am hopeful that the Support Workers will have a remit to know about what support is available in the voluntary and community sector. We will offer them an opportunity to meet the peer volunteer advocates and hear directly about the difference advocacy makes to older people and carers.
Simon Philips and Kathleen Gillett attempt a selfie
Simon asked me about volunteer retention and whether we had any problems keeping volunteers. I was glad to be able to tell him that we still have on the team several of the volunteers we recruited for our pilot phase in 2012. The size of our volunteer team is growing every year because despite a few volunteers retiring or going on to other roles such as hospital governor the majority are staying because they are so passionately committed to their roles. They always arrive for their informal interview with a high level of motivation but once they are trained and ‘matched’ with an adovacy partner that motivation only increases as they see the real difference they are making to people’s lives. No two advocacy partnerships are the same and so the volunteers tackle the challenges that each new case brings with great energy. They frequently tell us of the emotional rewards that they gain from the role.
As a service we benefit enormously from retaining a team of trained peer volunteer advocates that has increasing experience. In fact at our most recent volunteer networking forum at Help and Care my colleague Jo Lee and I were completely left out of most of the discussion while new and more seasoned advocates got to grips with a case study. Could peer volunteer advocates work closely with the new Support Workers to be ‘the glue in the system’ that Fran would like to see?
Can you see peer advocates as part of the answer? Let us know what you think.
What stops health professionals signposting to services like our peer advocacy support service? In today’s post Kathleen Gillett of Dorset Macmillan Advocacy tells us what some Macmillan Health Professionals feel is the reason:
There are over 9000 Macmillan professionals working across the UK in a wide range of roles. Those of us in cancer advocacy services that are funded directly by Macmillan Cancer Support are labelled Macmillan professionals. Once a year we are invited by Macmillan to a national conference and I was fortunate to attend for the first time last autumn.
Lynda Thomas, CEO of Macmillan welcomed the 300 participants and began her keynote speech with some statistics. In 2015 Macmillan reached 5.8M people in total and Macmillan professionals supported 600,000 people.
Lynda said that in her view face to face support is the most impactful. I see the impact that our peer volunteers have every day by actually being there in person for their advocacy partner and I couldn’t agree more. She went on to say that her aim is to focus on areas of most severe need and on what makes the biggest impact. She believes that the best services and support need to be local and need to understand the needs of the local population.
The majority of Macmillan professionals are in clinical roles and this was reflected in the attendance at the conference. There were two representatives of the Cancer Older People and Advocacy projects, me and Kath Curley from Staffordshire and Wolverhampton Cancer Advocacy at the Beth Johnson Foundation as well as a number of Macmillan Welfare Benefits Advisors from across the country and the team of Support Workers at Brain Tumour Support who are funded by Macmillan.
Kath Curley, Staffs and Wolverhampton Cancer Advocacy and Kathleen Gillett, Dorset Macmillan Advocacy
Every year conference delegates are asked a number of questions and respond with live voting gadgets. The first 2016 question was ‘What is the biggest barrier to Macmillan professionals in signposting people affected by cancer to sources of support in the voluntary and community sector?’ This question appeared to be aimed at the Health professionals. The top three answers from options given were: 33% Lack of knowledge of what is available; 25% Holistic Needs Assessment (HNA) is not routinely done; and 25% Health leaders and managers don’t see it as the responsibility of Health professionals.
The question which led on from this “What would make the biggest difference to help Macmillan professionals to signpost to support?” saw 56% respond Access to clear information on what is available, how and where to signpost to; and 24% respond HNA.
I took away from this that Macmillan professionals in clinical roles want to signpost to support outside of Health but don’t yet feel that they have an easy way of finding out what support is out there and what the most appropriate time to refer would be. Those of us providing services such as peer volunteer advocacy have not always found it easy to make those working in Health aware of our service and to find opportunities to educate them to understand the benefits of advocacy and its relevance at all stages in the cancer journey. At the next conference in autumn 2017 Macmillan Cancer Support will report back to delegates on the steps it has taken to improve access to this knowledge.
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
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.
In today’s blog post Kathleen Gillett from Dorset Macmillan Advocacy looks at the issues facing older people affected by other long term conditions as well as cancer:
Coping with cancer is one thing, coping with cancer and one or more other long term condition is another. Peer advocates listen to the people they support to discover what matters most to them and may be surprised to find that having cancer can be the least of their worries.
At Dorset Macmillan Advocacy we have collected some information on the long term conditions and health problems that the people we are supporting are living with. We have found that of 110 people referred to us for support in 2015 50 have at least one other long term condition, 26 have two conditions including drug and alcohol dependency issues and 7 have 3 conditions. The conditions include sensory loss, diabetes, heart condition, memory problems, arthritis, MS, ME, epilepsy, hiatus hernia and mental health issues. Not everyone wants to disclose all their health issues and we have not in every case methodically recorded where this information has been given so I think it is safe to say that there are likely to be more issues than we actually know of.
In fact 70% of people with cancer have one or more additional long term condition according to research carried out by Macmillan Cancer Support. It’s clear that the situation for people with limited social support networks, such as older people, can be very difficult. Independent advocacy services such as ours can be flexible and support people with their concerns when they are wider and more complex than the cancer diagnosis.
Health professionals are aware of the implications especially as regards treatment options for older people. The British Geriatric Society has a special interest group (SIG) for Oncology which met for the first time last September and Kath Parson of OPAAL gave a presentation about the Cancer, Older People and Advocacy programme. In a write-up of that event Dr Lucy Dumas said ‘Older patients with multiple medical co-morbidities and/or issues with care or coping at home represent a significant challenge when it comes to evaluating whether or not they will be able to tolerate potentially toxic therapies’.
Over the next year we hope to gather more information about the wider health issues of the people that we support. As well as asking for their feedback on the difference our service has made we may be able to gather their views on how their other conditions have impacted on their cancer patient experience.
These are terms that we are used to seeing in the context of independent advocacy support. I have in fact picked them out of the revised Code from regulator, the Nursing and Midwifery Council (NMC). Although my own background is not in health I was familiar with the previous Code from 2008. Section 4 of that version states ‘You must act as an advocate for those in your care, helping them to access relevant health and social care, information and support’. At Dorset Macmillan Advocacy as part of the training for our volunteer advocates we had discussed how this might make health professionals more open to the support that we can offer but how it might also lead to them seeing it as unnecessary since they already act as advocates for their patients.
The revised Code has widened this aspect considerably and now says: ‘Make sure that people’s physical, social and psychological needs are assessed and responded to. To achieve this, you must: … act in partnership with those receiving care, helping them to access relevant health and social care information and support when they need it, and act as an advocate for the vulnerable, challenging poor practice and discriminatory attitudes and behaviour relating to their care.’ The NMC says that the Code has been written with the input of many patients, carers, nurses and midwives. It is shaped around four statements, which state that good nurses and midwives will:
Prioritise people • Practise effectively • Preserve safety, and • Promote professionalism and trust.
Jackie Smith, NMC Chief Executive and Registrar, said on 31st March: “This is a landmark day for every nurse and midwife in the UK, and for the people they care for. The Code is fundamental to protecting the public. It sets out what patients want from nurses and midwives, and puts public expectations at the centre of professional practice.” Macmillan Cancer Support have noted that ‘The changes to the code include new sections that outline professional duty of candour, and the responsibilities of all nurses and midwives to raise concerns. The focus of the revision is to drive continuous improvements in the quality and safety of care.’
I asked one of our own volunteer advocates with a unique perspective, since she is also a practising nurse, whether she felt that the revised Code would make it easier for our peer volunteer advocates to work with health professionals in supporting their advocacy partners. She said “The new Code will bring benefits regarding better communication between health staff and advocates. We now have the professional duty to facilitate communications among everyone that is taking care of a person. The new code has underlined even more the centrality of the patient, which means ‘do the best for them’, and implies cooperation among all their carers. Another important point that for me from the advocacy perspective is that nurses have to delegate to whomever can do the best for the patient and can complete the task at the required standard, even if they are not a health worker.”
I really recommend reading the revised Code to get an insight into what the NMC has found to be the most important aspects of patient and public expectation. The Code is extremely readable and well-constructed. We will be referring to it in our volunteer training. Indeed many of the requirements of nurses would be transferable to the role of independent advocate especially those concerning clear communication: ‘use terms that people …can understand, use a range of verbal and non-verbal communication methods…check people’s understanding’.
Most importantly for me the Code recognises for the first time that a patient may be supported by an advocate and mentions the role directly in the third section entitled Preserve Safety. ‘Be open and candid with all service users about all aspects of care and treatment, including when any mistakes or harm have taken place. To achieve this, you must… explain fully and promptly what has happened, including the likely effects, and apologise to the person affected and, where appropriate, their advocate, family or carers.’ I feel that the revised Code will serve as a strong foundation for effective cooperation between peer volunteer advocates, their advocacy partners – the older people affected by cancer, and the clinicians delivering their treatment and care.
Pat Vinycomb, Local Ambassador for Dorset of Carers UK, spoke at the recent Carers Meeting at Royal Bournemouth Hospital. The meeting was organised by the Patient Engagement Team and coincided with the launch of pages for carers on the Trust’s website.
Pat’s keynote address ‘Think Carer: Supporting Carers in a hospital environment’ invited the carers present to reflect on when it was that they realised that they had become a carer and the feelings associated with the realisation that life would never be the same again. In the hospital environment, said Pat, carers should be recognised for their skills and knowledge, feel valued, have the right information and advice and the choice to say no. She outlined the challenges facing carers who need to understand what has happened and where to go for further help and advice. She also explained the anxieties that carers may feel: ‘Can I ask staff a question and/ or challenge?’.
It was clear that Pat spoke from her own experience as she described a tendency for carers to feel they must hide their emotions and the inner conflict they can feel. She emphasised to the nursing staff present that little things really do mean a lot to carers: somewhere to be private, comfortable seating, refreshments, as well as kindness, empathy and hope. Above all good communication from hospital staff and being kept up to date is important for carers.
L-R Pat Vinycomb, Ambassador – Carers UK and Marion Summers, volunteer advocate – Dorset Macmillan Advocacy
Pat’s presentation finished with a summary of the many types of practical help and support available to carers in Dorset, Bournemouth and Poole and she urged carers to remember that their own health matters. The carers then took part in facilitated discussions to generate feedback for the engagement team.
Later I talked with Pat and with our volunteer advocate Marion Summers (also a carer) about the support that Dorset Macmillan Advocacy can provide to carers. Carers can be empowered by advocacy support to know their rights and feel more in control. I was grateful to the Patient Engagement Team to be invited to the meeting and to be able to provide an information stand. After Pat’s talk I personally had a much better insight into the challenges facing carers when the person they care for is staying in hospital and we hope to involve Pat in our volunteer training in future.
During national Carers Week from 8 June Jo Lee, Senior Macmillan Advocate at Help and Care, and other Dorset Macmillan Advocacy staff attended a number of events to raise awareness of our service among carers. The Carers Week campaign this year focused on Carer Friendly Communities and produced this useful Checklist tool for carers which includes a section on Health: Carers Week 2015 Checklist.
Here at Dorset Macmillan Advocacy we’ve been listening to the 2014 series of Reith Lectures on BBC Radio, this year delivered by surgeon and Harvard Professor Dr. Atul Gawande. Gawande is a well known author and was named as one of the world’s most influential thinkers by Time magazine in 2010.
As a cancer advocacy service we experience all aspects of our local cancer services and with the massive Dorset CCG Clinical Services Review underway we are all interested in thinking about how systemic changes could benefit patients and clinicians alike.
In the first lecture Dr Gawande describes the central act of medicine as, “the moment when one human being turns to another human being for help”. He reflects on what he sees as the underlying flaw in modern medicine: a failure to effectively and consistently apply the knowledge science has afforded us over the last century to achieve the best outcomes. The scope and depth of the knowledge we now possess, he argues, goes beyond anything implementable by any one individual hence the need for updated systems to enhance communication and delivery of services.
In his second lecture Gawande highlights the need for effective systems to underpin delivery of the best possible treatments. The premise is relatively simple: does everyone involved in the treatment process know their role – have all the bases been covered and has this been verified?
Gawande and his team have pioneered a checklist approach looking to fields outside of medicine for inspiration. So far this has yielded impressive results saving lives and reducing complications during surgery where trialled.
Dr Atul Gawande
This is an approach that he believes could apply to complex, long term conditions where patients often have more than one problem requiring treatment and could potentially not only improve patient experience and outcomes but also (and importantly) save money.
The experience for many older people affected by cancer is busy and complex with multiple individuals and agencies involved. Gawande argues that with this level of complexity the opportunity for oversight and errors is greatly increased unless there is a solid system in place to co-ordinate the treatment process. He draws on powerful personal stories to illustrate his point: he counted a grand total of 66 people attending to his own mother in her hospital bed during admission for a knee replacement, some of whom gave conflicting advice as a result of operating within their own, isolated remits.
The situations and dilemmas outlined in Gawande’s lectures highlight the role that advocacy can play to great effect in the cancer journey – when a person is at their most vulnerable and difficult choices have to be made and complex treatments and procedures understood and implemented, having an advocate can be key.