‘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.’

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

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

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 

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.

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

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.

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

 

We’ve been listening to the Reith Lectures this year, have you?

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.

Jenny Rimmer, Senior Macmillan Advocate, Dorset Macmillan Advocacy

 

Engaging with the Dorset Clinical Commissioning Group

Graham Willetts, chair of Dorset Macmillan Advocacy’s Cancer in Older People Development Group has participated, along with other group members, volunteer advocates and staff, in recent consultations by Dorset Clinical Commissioning Group (CCG) about Cancer and End of Life services.

Two Public, Patient and Carer consultation events asked ‘What is good about current services and what could be better?’ and the Stakeholder (service providers from NHS and other sectors) consultation event asked participants to consider the collected responses to this question and to discuss in groups five areas including:

• What does it mean to plan and tailor cancer care around patients and carers?
• Do we need to focus more on survivorship? What do we need to do to support increasing number of patients living with cancer for 5 years or more?

The Cancer and End of Life Services clinical commissioning programme (CCP) is one of six set up by the Dorset CCG. The CCP is reviewing the priorities set in 2013 and looking to future trends and challenges, including the Better Together programme for integrated locality health and social care teams. The Dorset CCG will also launch a Clinical Services Review in the autumn.

Within the groups and during the closing plenary we described the benefits of independent advocacy to cancer patients and their carers and distributed copies of the case studies publication Every Step of the Way. Tracy Street, Regional Macmillan Involvement Coordinator, described the benefits of support groups.  Tracy and Paula Bond, Regional Macmillan Development Manager, were invited to facilitate two of the discussion groups.

In summing up Dr Lionel Cartwright, a local GP and clinical chair of the Cancer and End of Life CCP, said he was encouraged by the discussions. He also said that he would like people to be empowered in terms of deciding the type of care that they want.

 

 Pictured Sarah Turner, Principal Programme Lead, Dorset CCG and Graham Willetts

Kathleen Gillett, Dorset Macmillan Advocacy

Hello my name is…Kate

Six months ago I heard about Dr Kate Granger. In August 2011 Kate then aged 29 was diagnosed with a very rare cancer, Desmoplastic Small Round Cell Tumour (DSRCT), a terminal diagnosis.

Kate is a hospital doctor who treats and cares for older people. Kate came into my life when I was feeling particularly uninspired at work, concerned as to the future funding of our cancer support work and to cap it all health worries had resurfaced with two of our four elderly parents. I ordered and read her two books, The Other Side which is the story of Kate’s gargantuan struggle coming to terms with being a patient, and the follow up The Bright Side which explores her return to work after a prolonged absence. Both these books had an immediate impact on me, apart from making me humble and grateful that I was not so diagnosed and having to cope with such a distressing prognosis, they served to give me the proverbial ‘kick up the backside’, giving me a fresh impetus to tackle our work with renewed vigour and energy.  Soon afterwards my elderly parent’s health turned a corner and we heard we’d been awarded the £1,000,000 from the Big Lottery Flagship team to continue and further expand our work supporting older people affected by cancer.

This award, along with our own recent publication Every Step of the Way which tells the stories of 13 older people’s experience of the difference advocacy support made at various stages along their cancer pathway, served to raise our profile somewhat and I was invited to speak about our work at the national annual NHS Confederation conference on 4th June. Kate had also been invited to this conference as a speaker, a very important speaker as she had been invited to close the conference on 6th June.

I was unable to be present on the 6th as I had a prior commitment elsewhere, however I was able to catch up recently, and once more found myself profoundly moved by this young woman’s story and her commitment to improving the lot of patients with her latest ‘my name is campaign’. A simple message yet one with the power to transform the relationship between doctor and patient. Kate has always been a strong believer in getting to know people’s names as part of building good working relationships with both patients and other colleagues. It is the first rung on the ladder to providing compassionate care and often getting the simple things right, means the more complex things will follow more easily and naturally.

Kate’s campaign has gathered momentum and will impact on many future relationships between doctor and patient, however until all patients can feel comfortable talking to the medical staff who care for them we will continue to need armies of advocates to step in and simply ‘be the voice’ of older people to help ensure they get heard by those in such powerful positions determining their treatment and care.

If you have a few moments do please watch the video below.

If you, like me have been inspired by Kate and wish to learn more of our work and how you too could become a trained advocate for older people in your area then do please get in touch simply email me kath.parson@gmail.com and I’ll point you in the right direction.

Residential Care Review by the Older People’s Commissioner for Wales

OPAAL would like to commend the Older People’s Commissioner for Wales for her ongoing Residential Care Review. Having already had nearly 2000 responses to her Care Home Review Questionnaire the Commissioner, Sarah Rochira, is determined to ensure that those who use residential care services get the opportunity to voice their opinions.

She said recently: “When I launched my Residential Care Review last year, I made it clear that I wanted to give a voice back to older people and their families and for those who run our services to understand the day-to-day realities of living in residential care in Wales. The overwhelming response from across Wales provides a very robust starting point for this and I would like to thank everyone who took the time to complete the questionnaire, as well as those who helped to distribute it on my behalf, for the part they have all played in driving change for older people living in residential care.”

The second phase of the review is due to start in the spring and will involve visits, some unannounced, to 100 care homes throughout Wales. The Commissioner is also making steps to ensure that the voices of those with protected characteristics such as race, sexual orientation, religion or belief are also heard.

All of this is inspiring and is to be commended.  We at OPAAL would love to see similar activity in England. Not only do we need an Older People’s Commissioner but also a similar review of residential care. OPAAL members have been raising concerns for years about the situation of older people in some residential care homes. Our own Partnership Development Hub is currently focused on developing the evidence base for the provision of independent advocacy for older people in residential care. Not only is there a need for advocacy support for those already living in residential care but there is also a call to provide such support for those considering moving into residential care.

As a society we know we need to do more to safeguard older people in residential settings. Report after report has highlighted the issues. We want to be able to train and support those working in residential care to understand the benefits of getting independent advocacy involved in their day to day working lives. Not only would it benefit residents but it would also benefit care providers and their staff. Independent advocacy can support registered managers to meet inspection criteria and ensure that voice, choice and control are present for care recipients. It can also give staff an outlet to drive standards up and give much improved job satisfaction.

The time really is NOW! Let’s follow suit.

Marie McWilliams, National Development Officer, OPAAL

Why are we seeking to work in partnership with health professionals?

To the volunteers and staff at Dorset Cancer Advocacy who are offering peer advocacy support to older people affected by cancer, in order to give them ‘voice, choice and control’, it is very clear why our working in partnership with health professionals would benefit patients. To health professionals focusing on clinical outcomes it may not be so clear why they should work in partnership with voluntary sector organisations.

Ways for individual health professionals to take action on health inequalities and how they might do this through using the resources provided by voluntary sector organisations is a theme running through the March 2013 report from UCL Institute of Health Equity: Working for Health Equity: The Role of Health Professionals.

Three extracts from the Executive Summary highlight the importance of the issue:

Workforce education and training

Key recommendations: Communication, partnership and advocacy skills will help professionals to tackle the social determinants of health…specific practice-based skills, such as taking a social history and referring patients to non-medical services…should be embedded in teaching courses.

Working with individuals and communities

Individual health professionals can tackle the social determinants of health by helping to create the conditions in which their patients have control over their lives.  Giving information that can help to improve the social determinants of health mainly consists of referring patients to non-medical services.  These should cover a broad range of sectors and issues, beyond lifestyle and disease management programmes….Such activity may reduce the number of consultations with and prescriptions from GPs.

Workforce as advocates

Professionals can use their understanding of the factors that are influencing a patient’s health, and act as advocate in order to help these patients to access services both within and outside the health service.

Kathleen Gillett, Dorset Cancer Advocacy

Uncertainty and cancer

It is unnerving to write about cancer.

In my experience C has a life of its own and sometimes disrupts well intentioned plans -it encroaches on the ability to think straight, state your case – to advocate for yourself or to be heard. Of course, you may disagree and there are those who find unusual ways of telling others about a diagnosis the  Rev. John Graham told Guardian readers he has cancer through the clues for a crossword.

C can effect your ability to really hear what it being said and what you are being told . I can remember sitting in meetings  with medical and social care staff  and I thought i had heard what my options were and the implications of my diagnosis but I had only heard bits of it. Fortunately for me I have a very attentive partner who in the midst of it all managed to keep focussed, asked the right questions and got clarity so we could both think things through and make well informed decisions.

Anyone who is affected  by C will find themselves with tiny and big questions. You might not even know what the questions or options are.

If you need space to think things through or someone to ask the difficult questions on your behalf or to attend a meeting because you just can’t face it that day then an independent advocate can and will help. Of course there are lots of people out there who also help. The thing that sets an advocate apart is their independence. Advocates are there to listen and to act on what you say, to turn up the volume on your views and questions and to ensure that the right people listen and respond to them. So wherever you are at with C – there is an independent advocate who can stand beside you when you  speak for yourself or stand up for you when you it is time for you to rest.