Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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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

 

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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.

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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

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

 


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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.

 

Sarah Turner and Graham Willetts at CCG Stakeholder event 3  September

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

Kathleen Gillett, Dorset Macmillan Advocacy


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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.


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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.”

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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.

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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


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‘Tis the season to promote Advocacy

The most interesting quotation that I gathered from a service user for the advocacy stories was this,

“If you are an older person with younger relatives who will make a fuss you will be alright.  If you are an older person, on your own, you get ignored”

This is particularly true at this time of year, and not just in relation to advocacy.  People are more aware of the support systems that they have in place and those that they lack.

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As part of our ongoing promotion of the Cancer Advocacy Project and Sefton Pensioners’ Advocacy Centre as a whole, I participated in a Christmas Tree Festival, held at a local church.  Over 40 local charities and organisations each decorate a tree which is displayed for a week.  Members of the public visit the festival and make donations as they see fit for each tree/charity.  The event is very well attended locally by all age ranges and offers us the chance to raise awareness of advocacy in a different way.

Our tree

Our tree

I decorated the tree with phrases associated with advocacy such as ‘independent’, ‘free to access’, ‘confidential’ and ‘helping older people to have their voice heard’.  In addition to this I had laid our plenty of our leaflets!  I hope that the tree will have been thought provoking for the people who saw it and that they will remember it if they are looking for support in the New Year.

Helen Vernon, Advocate, Sefton Pensioners’ Advocacy Centre


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December 10th is Human Rights Day

OPAAL has signed up to a Human Rights Day letter from civil society groups. Providing an opportunity for groups to join together and speak up for the importance of human rights laws for us all, this sits well with OPAAL’s commitment to advocacy and thereby to empowerment and to ensuring that the voices of older people are heard.

The letter states:

Sixty-five years since the adoption of the Universal Declaration of Human Right (UDHR), we ask political leaders to acknowledge the continued relevance of human rights both on the global stage and here at home. As leaders of civil society groups we see the vital role of human rights in ensuring a fair and healthy democracy, and helping us all to live with dignity and respect. Yet we are concerned that the value of human rights, which so many across the world look to for inspiration in setting down domestic laws, rarely feature in the current Westminster rhetoric.
 
This Human Rights Day, we ask political leaders to ensure that recent commitments at the United Nations Council to ‘work tirelessly for the promotion and protection of human rights, both domestically and abroad’ are made a reality. We hope that the UK will stand firm on the European Convention on Human Rights and our Human Rights Act, both inspired by the UDHR and providing vital protections to us all here at home. There is much to do to ensure these human rights have meaning for all people in the UK; our political debates should focus on making this happen rather than taking us away from the universal human rights standards long-championed by the UK.
We hope that those in positions of responsibility are able to support human rights for everyone. It’s time for the recent lambasting of the Human Rights Act here in the UK to end and a more considered approach to be taken.