People Affected by Cancer: Not Alone

“What’s that tardis-like box doing in Churchill Square?” That’s what shoppers in Brighton were asking on the last Friday in August.

The isolation box, a touring art installation by Macmillan, was raising awareness that ‘cancer can be the loneliest place’.

Members of the public were invited to try the isolation box and experience how it feels to be alone in a crowd. Once inside participants could listen to 2 real-life stories told by local people, John and Sarah, about their experiences of having cancer. John, 64, from Hove talked about how lonely his diagnosis made him feel. A few passers-by shared their own stories.

From the outside you could see into the box, but once inside I could see only blurry figures. Amidst the buzz of the busy shopping centre, with people all around me, I felt cut off from the crowd. For those few minutes, despite being aware of people and voices surrounding me, there was a barrier between me and the rest of the world.

The isolation box

People affected by cancer can feel incredibly lonely even when they have friends and family. Research has shown the devastating impact of loneliness, causing people to skip meals, attend vital appointments alone or even refuse treatment. Over 60% of patients go for surgery and radiotherapy appointments alone. Many said this was because they didn’t want to burden friends or family, or the person they wanted to go with them was not available. Some people had nobody to ask.

So what support is there for isolated cancer patients in Brighton? The Macmillan Impetus Cancer Advocacy Service works with some of the most isolated people affected by cancer in Brighton & Hove: older people, people with mental health problems, people with learning disabilities and people with autism spectrum conditions.

They may have limited support networks, or find it less easy to access the information or support they need.

For someone affected by cancer there can be lots of information to take in and decisions to make. Navigating the complexity of health and social care systems can be frustrating and difficult.

Cancer is a life-changing experience. It can generate anxiety and stress and people may lose confidence. This may limit their ability to deal with life in the same way as they did before becoming ill.

Sam Bond

Having someone to help can make all the difference. Advocates act for the person they are supporting. They can visit the person at home or another setting. Advocates have time to listen and find out what is important to the individual. They can help people sort out many of the issues that arise when someone is affected by cancer, as well as general-life difficulties which the person may find it harder to deal with. Advocates can find out about support and activities in the person’s own community.

Cancer Advocacy support aims to reduce isolation, link people up with the support they need, and ensure they are able to make informed choices and express their wishes.  This benefits the individual and everyone involved in their care.

Reach out to someone affected by cancer who may be isolated and lonely. If you know someone who would like the support of one of our cancer advocates, contact The Macmillan Impetus Cancer Advocacy Service on:

01273 737888 or email canceradvocacy@bh-impetus.org

Sam Bond, Brighton & Hove Impetus

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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.

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