Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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We’re marking World Cancer Day

Since today, 4th February, is World Cancer Day, we wanted to mark it by sharing a story from our recent publication: Facing Cancer Together – demonstrating the power of independent advocacy.

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Charlie’s story (as told by Karen his advocate with input from Pat, his wife)

Charlie was referred to the advocacy service by the Macmillan Benefits Advisor. He’d been a hospital inpatient for 9 months as he was still being fed through a PEG (a line straight into his stomach) after radiotherapy to treat throat cancer. He hadn’t been able to return home as an appropriate Care Package had failed to be put in place. Although he was free to leave during the day, he had to spend the night on the ward while the liquid feed was slowly fed into his stomach.

Charlie believed that the radiotherapy had ‘burned a hole in his throat’ and he had wanted to pursue a complaint about this but in fact this turned out not to be the case. Working with Karen his advocate he was able to understand better what was happening and why he was experiencing the symptoms he had. Charlie was also understandably really fed up at being stuck in hospital and wanted to get back to living as independent a life as possible.

Charlie and Pat

Charlie and Pat

Charlie had a long history of alcohol abuse although he had long periods of sobriety. Throughout his adult life, during his more functional periods he had sustained a relationship with Pat and after his diagnosis she was there to support him. Unfortunately, prior to his diagnosis Charlie had been drinking heavily and found himself in a vulnerable situation where his flat was frequented by (often unwelcome) visitors and neither the location nor the condition of the flat meant it was a suitable place to be discharged to and for nursing staff to attend.

Due to his alcohol use, Charlie’s memory was very poor and when he was drinking he had been exploited financially by some individuals in his life. As a result a Power of Attorney was lodged with the local authority and his finances were controlled by a Deputy there.

Pat was keen to support Charlie and Karen his advocate quickly got to know them both. Together they were struggling to get things in place to facilitate Charlie’s discharge. Pat’s flat was too small to accommodate the medical equipment and visiting medical staff that this would entail and she understandably felt unable to take on the medical aspects of his care.

Pat describes Charlie at the point when he was first introduced to Karen, “He got very depressed. They kept saying they’d release him from the hospital, but it didn’t happen. They couldn’t sort out his care at home, so they couldn’t work out how to discharge him. He couldn’t eat, but he could drink alright. He told me he’d had enough.”

Charlie’s future was far from certain when Karen first met him, he’d had radiotherapy to treat his throat cancer but there was no definitive prognosis. Karen attended appointments with him and his partner (and latterly wife) Pat.

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Karen supported Charlie at appointments, reminding him, ensuring hospital transport was in place and liaising as requested with health care professionals to ensure that he understood what was happening. She ensured he was supported to return to being able to eat some foods as soon as possible rather than taking all his nutrition via the PEG.

 

Once Charlie’s diagnosis became terminal, the focus of the advocacy centred on supporting him to stay in control of his life right to the end. Charlie desperately wanted to leave hospital and Pat and Charlie wanted to finally get married. The advocate was able to represent Charlie to both the Deputy administrating the Power of Attorney and his Social Worker to facilitate not only these wishes but also his wish to die at home.

Karen helped Charlie and Pat get appropriately graded on the housing list and successfully bid on a two bedroomed bungalow. When relations broke down with the Social Worker Karen negotiated on Charlie’s behalf so that he no longer had to deal with the individual who had made him feel very judged and misunderstood. When relations also broke down with the appointed Deputy all negotiations were carried out by Karen which alleviated some of the stress for Pat and Charlie.

Karen’s challenge to the attitudes Charlie encountered from some health and social care professionals meant that his wishes were respected and that, in spite of them not necessarily understanding his decisions, they were respected.

Karen and Pat

Karen and Pat

Charlie’s cancer returned shortly after he had begun to slowly eat solid food again and he was faced with a terminal diagnosis. Sadly, he passed away in December 2015.

Charlie’s wife Pat says, “Our advocate, Karen, helped with such a lot. She used to speak up to the County Council for me, because I didn’t want to get into another argument. She helped Charlie to get to his hospital appointments on time. She’d meet him in Poole to make sure he arrived. I’d have been lost if it wasn’t for Karen.”

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You can read more stories about the power of independent advocacy support for older people affected by cancer in Facing Cancer Together which can be accessed and downloaded here

 

 

 

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Watch our for our forthcoming publication of volunteer stories. It’s called Time: Our Gift To You. It’ll be available to read and download very soon.

 

 

 

 

Marie McWilliams, OPAAL


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Facing Cancer Together: we’re demonstrating the power of independent advocacy

We’re really excited today to announce the publication, in partnership with Macmillan Cancer Support, of our latest collection of older people’s cancer advocacy stories entitled Facing Cancer Together.

In 2014 we published Every Step of the Way, a set of patient stories which illustrated the need – and value – of peer advocacy services for older people living with cancer. In this, our second publication, we bring together a further twelve stories of overcoming struggle, loss and anxiety, illustrating a new reality of what older people living with cancer can and should experience.

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But these stories also speak to a broader societal truth, and contradict the common narrative that the pressure from an ageing population with increasingly complex needs is overwhelming our health and social care system. At the heart of that narrative is a prejudice that older people are somehow too needy, too frail, too dependent and a burden the rest of society is expected to carry. This kind of prejudice robs older people of voice, choice and control. Advocacy – such as in the stories contained in Facing Cancer Together – seeks to return them.

When we read stories like these, we aren’t just reading about the experiences of one older person with cancer; we’re also being gifted rich insight on the big challenges facing policymakers, commissioners and practitioners, such as how to deliver high quality, compassionate, person centred care that enables people to be equal partners in their care; and how to tackle marginalisation, social exclusion and uncertainty; and how to manage the impact of cancer
on family, or emotional health, or housing.

Those challenges are for us all, regardless of age, and the methods of addressing these challenges, by investing in peer advocacy and support, greater community engagement and creating the motivations of staff to involve patients in their own care have a net benefit for all of society.

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Stories are powerful not least because they have the capacity to tell us something about ourselves.
The twelve stories in Facing Cancer Together represent the wide range of experience that our advocacy programme
has encountered across 1500 plus cases over the past five years.

 

We hope that they most of all resonate as examples of the actual support available to provide reassurance, companionship, dignity and, most importantly of voice, choice and control.

We want to thank all of those who were willing to share their stories with us, and the many advocates involved in
the programme.

Jagtar Dhanda, Head of Inclusion Macmillan Cancer Support & Kath Parson Chief Executive OPAAL


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Clinicians and Patients: Balancing the Conversation

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.

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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.

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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


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“Advocacy kept me going”

Today we hear from Helen Vernon, advocate at programme partner Sefton Pensioners’ Advocacy Centre about Peter, one of the older people affected by cancer she has supported:

Peter referred himself to the Cancer Older People and Advocacy project after a diagnosis of cancer in June 2015. He had recently been told he was palliative.  He had spent 16 months in hospital with a collapsed lung.  Peter had moved in 2014 but regretted the decision due to some issues with the housing association. 

Peter had discovered that there was an electrical cupboard/water tank next to his flat.  His bedroom wall was on the other side of this cupboard and he found his sleep was severely disturbed.  We looked into the option of rehousing but Peter felt that since his diagnosis was terminal he didn’t want to spend the time he had left on a waiting list or moving house. Instead we asked that remedial work be carried out to alleviate the problem.

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I negotiated with the housing association who had put in a request for the job to be completed, but it had been delayed because a surveyor hadn’t been to the flat.  The housing association actioned the job immediately.  I then continued to liaise with the housing association to make sure the job took place and that Peter was satisfied.  

In addition to this I contacted the Department of Work and Pensions to ensure that Attendance Allowance had been started and I explained to him when the payments would take place.

Peter’s family all live abroad and he felt strongly that they should be allowed to live their lives without worrying about him.  He spoke to me at length about his life and his feelings about the cancer. 

When the case was closed I asked Peter what he had thought about the advocacy process.   He said “(Advocacy) gave me a lot of hope that things would improve and they did improve, it (advocacy) kept me going”.

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Helen Vernon

I recently contacted Peter again and he has asked me to revisit him as there are now some issues around his hospital care.  He would like me to write to the hospital on his behalf and to attend appointments with him.  A new case will bring new challenges as his health is declining, but with advocacy support Peter’s wishes will be represented and his voice heard.

Helen Vernon, advocate, Sefton Pensioners’ Advocacy Centre


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‘Health literacy’ and ‘Patient activation’

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. 

Let’s talk about it: Improving information and support describes the role of health literacy and patient activation in a chapter on Improved Communication.

‘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.’

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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.

Kathleen Gillett, Dorset Macmillan Advocacy


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Be more challenging in involving patients

Bob Smith, volunteer advocate, and Kathleen Gillett of Dorset Macmillan Advocacy attended the recent ‘Dorset Cancer Alliance 2016 and Beyond’ conference.

The Dorset Cancer Alliance (DCA) comprises the three Dorset NHS Foundation Trusts, the Dorset Clinical Commissioning Group and the Dorset Cancer Patients Group. The other volunteers who attended and brought the patient perspective were Paul Grant, Trustee of Living Tree Bridport, and three members of Dorset Cancer Patient Group including group chair Emma Willis.

Emma (who is also Director and Founder of Shine Cancer Support) made a presentation on Improving Cancer Patient Experience.   Emma concluded ‘we need to be more challenging and more brave in involving patients at higher levels, ask for more from patient representatives, ask the question ‘How can I utilise the experience of patients to help with this?’ aiming to build strong and inclusive patient involvement in cancer services.

Emma Willis and Bob Smith

Emma Willis and Bob Smith

The Dorset team for Macmillan Cancer Support was there. Paula Bond, Macmillan Development Manager, has been instrumental in arranging funding for several services (including the advocacy service) and research/scoping projects locally, and Tracy Street, Macmillan Involvement Coordinator, has given capacity building support and guidance to Dorset Cancer Patient Group and to the independent cancer self help and support groups.

It was a full afternoon which included presentations from clinicians, commissioners and representatives of the Wessex Strategic Clinical Network.  We considered the current situation in Dorset and related it to the Wessex and the National Cancer Strategy.  Another factor in Dorset to take in to account is the current Clinical Services Review by the CCG.

Breakout groups discussed the different stages of the cancer journey and priorities for improvement.  One group focussed on patient experience and chose ‘Communication’ as the main priority: Both ‘how people are communicated with’ and ‘what information is communicated’.  We heard an example of a patient receiving their diagnosis in a way that left them both shocked and confused.  Macmillan GP Lavina Sakhrani-Clarke was interested to discuss the idea of letters from secondary care clinicians traditionally sent to GPs actually being addressed to the patient instead and written in layman’s terms. The GP would still be copied in and would, she felt, have a better chance of understanding the content.

Paul Grant and Bob Smith

Paul Grant and Bob Smith

Kathleen explained to the discussion group how volunteer advocates can support people at appointments and in understanding the content and implications of the letters they are sent.  Some advocacy partners that we have supported in Dorset have told us they were afraid to read their letters or printed information, keeping them tucked away out of sight, until they had their advocate with them to discuss the contents.

Kathleen Gillett, Dorset Macmillan Advocacy 


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Advocates in Integrated Care: making a difference..

Sam Bond, Service Manager at The Macmillan Impetus Cancer Advocacy Service in Brighton & Hove, explains why advocacy can make a real difference

“The use of health and social care by people with cancer” a 2014 study commissioned by The Department of Health, shows a clear link between cancer diagnosis and use of social care.  The report explains “For some social care is critical to their independence and ability to participate in society.”  However, use of social care by people with cancer is not equivalent to use of social care by people with other chronic conditions. A report by Macmillan in 2010 ‘Cancer should be as much a social concern as it is a health priority’, found that statutory social care was not meeting the needs of people with cancer. ‘People were often not referred for an assessment and did not know about the types of services which may be available. The research also found that those who commissioned social care services had limited understanding of the specific needs of people affected by cancer.

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However, recent updates to legislation aim to transform the delivery of health and social care. The Care Act now places a duty on local authorities to work more closely with health services in order to promote the wellbeing of adults and improve the quality of care they receive. The Care Act espouses core values of ‘wellbeing’ alongside ‘whole person’ care, promoting independence. It extends the right for eligible people to access independent advocacy so that they can be involved in social care assessment and safeguarding processes. But what about advocacy support for people to be involved in integrated health and social care processes? What will ‘whole person’ care look like for people affected by cancer? My understanding is that it must be based on the needs of the individual and their particular circumstances.

Cancer advocacy services, born of a collaboration between Macmillan Cancer Support and The Older People’s Advocacy Alliance, are responsive to people affected by cancer and their individual circumstances. The trained advocates, professional advocates and peer advocates with their own experiences of cancer, have time to build a relationship of trust with the client, listening and finding out what’s important to that individual (‘the whole person’).

When I started my role as Service Manager at The Macmillan Impetus Cancer Advocacy Service in Brighton & Hove, I had some concerns that health and social care professionals might view advocates warily. However, my experience so far, is that health and social care professionals welcome the opportunity to have the involvement of an advocate to support their clients.

Sam Bond

Sam Bond

I found a recent conversation with a health professional quite revealing on this matter. He told me that the hospital where he worked had had an experience where some paid carers accompanying clients to appointments sometimes behaved in an adversarial and accusing manner towards health professionals. He said he had found that particular carers sometimes had their own agendas when they accompanied patients to appointments. This caused the health workers felt defensive and sadly the patient’s wishes were getting lost in the middle of all of this.

Having worked as a paid carer myself for a number of years, it is not my view that paid carers generally act in an accusing way. However, this example does emphasise the value of properly trained advocates.  An advocate’s only concern is to represent the wishes of the person instructing them. Advocacy is certainly NOT about accompanying a client to an appointment equipped with a detective’s notebook and a suspicious frown! Of course advocates can and must raise concerns regarding the quality of care if clients wish them to. But this is just a fraction of what advocates do.

An advocate can extend the support that health and social care professionals are able to offer. For example, Cancer Advocates can provide support by helping people to prepare questions for appointments in order that the person can make the best use of time with a clinician, as well as attending alongside the person. Advocates can ensure the person understands, gathering information and explaining information that might not be clear or requesting clarification. They can write information down for the person, and/or talk through the information again later on. Advocates do not give advice but help ensure clients can access information and consider its implications in relation to their particular circumstances, so that they are able to make informed choices. The benefit of Advocacy is that the advocate is instructed by the person.  This puts the person in control at a time when they may feel that they don’t have much control over the cancer, the treatment, the side effects, or their life.

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Clients often say they are concerned about who will be their point of contact. There may be a number of different health and social care workers involved, which can be confusing for people. For a person affected by cancer an advocate can be a consistent person alongside them helping to access services, and navigate the health and social care system. An advocate can be an asset in assisting good communication between client and health and social care providers and between the professionals and client. An advocate can ensure the person’s views are represented, helping the client to get the most out of health and social care and promoting the client’s independence. Cancer advocates are great examples of the way in which advocacy support complements the work of both health and social care professionals.

Sam Bond 

Phone: 01273 737888, Email: Cancer Advocacy@bh-impetus.org