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.

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 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.

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

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.”

 

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

 

 

 

 

 

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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It’s as tough, if not tougher, for the family as for the patient

Family is still the most important support that we have on the cancer journey according to Colin Pritchard, Research Professor at Bournemouth University’s School of Health and Social Care.   ‘If you have no family it is very hard for a patient to go home from chemotherapy treatment alone,’ Colin said, ‘If you do have family it can be as tough if not tougher for the family as for the patient.’

Colin was speaking from his personal experience of cancer in reply to my question on quality of life for those people living with and after cancer.  He felt that the type of ongoing support that we can offer through Dorset Macmillan Advocacy was invaluable especially for people who are isolated.  He also described the ‘rollercoaster experience’ over several years of a friend having to cope with cancer recurrence.

I attended the public talk by Colin as part of the Bournemouth University annual Festival of Learning.  He presented his research under the title ‘Just how good or bad is the NHS in reducing cancer deaths? A comparison with the USA and the other Western nations’. He co-wrote the research with Dr Tamas Hickish, a consultant medical oncologist at Poole and Royal Bournemouth and Christchurch hospitals in Dorset.

Kathleen Gillett and Professor Colin Pritchard

The research, which is shortly to be updated, shows that the  NHS in England and Wales has helped achieve the biggest drop in cancer deaths and displayed the most efficient use of resources among 10 leading countries worldwide, according to the study published in the British Journal of Cancer in 2011.  At Dorset Macmillan Advocacy, one of our challenges is to help people living with and beyond cancer to enjoy a good quality of life through the support of our peer volunteer advocates.

PROMS

Volunteer cancer advocates work with people affected by cancer to help them reflect on what is important to them in terms of treatment and care.   Cancer and cancer treatments affect your quality of life and this area is increasingly recognised as being of importance by health professionals.

PROMS or Patient Reported Outcome Measures are now an essential component of any clinical trail, treatment evaluation or service assessment for cancer patients.  Researchers from across the UK came together in Wessex last month to explore the creation of an Academic Health Science Network to promote collaboration.

The meeting Promoting Understanding: Research and Clinical Application of Patient Reported Outcome Measures in cancer patients was organised by Dr John Ramage, Consultant Physician, Hampshire Hospitals Foundation Turst and Kings College Hospital London, and Mr Colin Johnson, Reader, University of Southampton, and Honorary Consultant Surgeon, Southampton General University Hospital.

The speakers gave an overview of the work being done across Europe in this area and then described how questionnaires are developed to gather patient’s views on their own quality of life throughout the cancer journey.

To round off the afternoon Dr John Ramage gave his predictions for the future:

1 PROMs will be automatically collected in clinics.

2 Questionnaires for different cancers will be shorter and computer adaptive

3 Areas of concern will be picked up and treated, for example by a psychological intervention

4 PROMS scores after treatment will be available

5 Patients will get graphs to see PROM measures and be able to understand quality of life data predictions

6 Support will be available to explain the meaning of PROMs and if a person’s cancer is not curable they will have more information on how they might feel as a result of their treatment.

The Silver Line: 0800 4 70 80 90 The free, 24 hour, confidential helpline for older people.

I would like to congratulate Esther Rantzen’s on her latest initiative to support lonely older people. Working with older people affected by cancer has opened our eyes to the fact that so many are lonely and frightened, these older people are not necessarily isolated, and can appear to have the support of many caring people. However, some older people with cancer have told us that even when they may be surrounded by family and friends nonetheless they can feel unbearably lonely struggling to cope with the impact cancer has on their lives. Unwilling to burden others, in particular family or friends with their worries and fear they try to struggle on alone. This is when our volunteer advocates can help, providing friendly, caring and sympathetic support. They listen to older people’s fears and concerns, and help to address these in practical ways aiming to remove all obstacles enabling older people to address these fears knowing they have support for as long as they need it.

Loneliness can cause serious damage, physically and mentally, as dangerous as smoking fifteen cigarettes a day, more dangerous than obesity. A survey by the Campaign to End Loneliness found that 42% of older people reported that if they need help, they do not know where to turn.

The stigma attached to admitting loneliness, the reluctance in older people to ask for help because “there are so many other people far worse off than I am” and “I don’t want to be a burden” has meant that we have ignored and neglected the deep unhappiness created by loneliness, which is afflicting so many elderly people.

Why does The Silver Line exist?
The statistics about older people and loneliness are frightening. More than half of all 75 year olds in the UK live alone and one in ten suffers “intense” loneliness but is reluctant to ask for help. In a poll conducted to mark the national launch of The Silver Line on 25 November 2013, 9 out of 10 older people told researchers that “a chat on the phone” is the most helpful solution when they feel lonely but 1 in 4 older people say they never or seldom have someone to chat to on the phone.

About the Silver Line Helpline
The Silver Line is the confidential, free helpline for older people across the UK* open every day and night of the year. Specially trained helpline staff:
• Offer information, friendship and advice
• Link callers to local groups and services
• Offer regular befriending calls
• Protect and support those who are suffering abuse and neglect
*Silver Line Scotland will be delivered by Age Scotland in partnership with The Silver Line during week days, 8am – 8pm. At all other times calls will be answered at the nation helpline HQ.

Who is it for?
The Silver Line is a helpline for older people – the Silver Generation. We have no strict age limits but most people we speak to are over 65. So, if you think it’s for you, it’s for you.

Are All Calls Free?
The Silver Line Helpline is free to callers.
Relying on charitable donations from organisations and individuals who care about the welfare and safety of older people to fund this vital new service.

Are all calls confidential?
The Silver Line is a confidential helpline.
Callers are free to express their feelings and describe their lives honestly, and can trust us to respect their privacy.
In cases of abuse or neglect, with the callers’ permission, we will involve specialist safeguarding organisations.

Silver Line Friends and Silver Circles
If callers would like to be put in touch with Silver Line Friends, they can receive a regular weekly friendship call or email. Or they may like to join a Silver Circle and take part in a regular group call on subjects that interest them.
Silver Line Friends are volunteers who have contacted The Silver Line because they enjoy talking to older people. They are vetted and trained, and work in pairs for safeguarding and support.

Silver Line Forums
For those who want to connect online with others who have similar experiences, there are forums on a wide range of subjects that you can contribute to.

If you want to learn more about The Silver Line please click here. http://www.thesilverline.org.uk/

Advocacy and social exclusion

Common sense tells us that poor health can lead to social exclusion and that increased social exclusion can in turn lead to poorer health and quality of life.  People working in the field of advocacy for older people know that timely intervention by an advocacy service can be preventative and break a vicious circle.   It’s not always easy to explain this in a concise way and I was heartened to read the proof in a report that coherently argues that social exclusion is not inevitable or irreversible with age.

‘Policy makers should encourage greater development of outreach provision to reach the hardest to reach before crises occur’ suggests a report from the International Longevity Centre and AgeUK:  Is Social Exclusion Still Important for Older People argues that ‘outreach programmes could encourage more targeted volunteering and advocacy to ensure those with fewer resources receive the services and support that they may need’.

Working in partnership to deliver the Dorset Cancer Advocacy service voluntary organisations Help and Care and Dorset Advocacy are well placed to reach the ‘hardest to reach’ with their established networks across the county and the service complements the range of other support services they offer.

Getting back to the report I found it useful in trying to understand the notion of social exclusion that ‘for older people the notion of social exclusion is grounded in the preservation of independence and autonomy.’   While I have been reading recently about the social determinants of health this report shows that, conversely, health (as well as demographic and socio-economic) characteristics are associated with older people’s levels of social exclusion.

‘Poor mental and physical health’ is ‘associated with higher levels of social exclusion…people whose self-rated health changed from good to bad/poor were five times more likely to become excluded from local amenities compared to people whose health remained very good’.  The amenities which the report demonstrates to be increasingly difficult for older people to access include local shopping facilities and hospitals.

I already knew that the work we are doing through peer advocacy support to help older people get the best out of their cancer treatment and care was important to those people both when having treatment and in coping with the after effects.  What I now understand more clearly is that our work can be instrumental in preventing a downwards spiral:  The poorer your health the more likely you are to become socially excluded, the more socially excluded you are the less likely you are to get the support you need.

In making the case for outreach and advocacy the authors state: ‘Our analyses highlight the precarious position occupied by those who are socially excluded in accessing the necessary services and support that they need.  Socially excluded people… are (i) those who are likley to be less engaged with civic structures and have access to information; (ii) are those who have difficulties in physically and economically accessing social, financial, cultural and civic structures and institutions: and (iii) are also likely to have lower levels of negotiation and fewer avenues of social support to help in accessing services and support.’

The financial case for reaching the hardest to reach is also made clear ‘Loneliness, cutting meals, and not receiving care to help with the activities of daily living are negative outcomes in themselves, but can also be viewed as precursors of much more serious, and costly events.’

‘Tell us what is really happening to you’

Health professionals want and need to know about the side effects that people are experiencing as a result of cancer treatment.  This was the message that came across strongly from Dr Rachel Hall, Consultant Haematologist, and Lisa Hammond, Stem Cell Transplant Specialist Nurse, when they spoke to the Dorset Myeloma Support Group in September.

Marion Summers, a volunteer advocate with Dorset Cancer Advocacy, is the support group’s organiser and works with the Group Leader Carole Jones. Dorset has double the national incidence of this rare cancer of the bone marrow owing to demographics but still a GP may only see one case in their whole career. For this reason Dorset GPs are visiting the clinic at Royal Bournemouth Hospital each week to increase their understanding of the disease and its diagnosis.

Rachel stressed that ‘one size does not fit all’ and that each individual needs to be carefully assessed when considering treatment options. The assessment takes in to account factors such as their environment, their support network and any other illness or health problems that they face.  Rachel said that she favours a multidisciplinary team approach and continuity from the health professionals’ side.

Front L – R Marion Summers, Rachel Hall, James Summers; Back L – R Lisa Hammond, Carole Jones

The management of side effects is crucial in aiming for good quality of life for patients. Lynn Maxwell of the Community Cancer Nursing Service, said that her team advise patients to document their side effects and bring this record with them to appointments.  Rachel Hall said it helps to be able to look back over several months and pinpoint possible causes of certain side effects. She described how having a diary on hand avoids the possibility of seeing the doctor after a particularly good week and forgetting to mention that the previous three had been very difficult.

Some patients may feel they can’t or shouldn’t talk or complain about side effects but Lisa Hammond said ‘Be honest… tell us what is really happening to you.  Don’t be afraid that we will stop your treatment. A lower dose could reduce or eliminate the side effects.’

Rachel recommended that patients prepare for an appointment by writing down any specific questions about their treatment, then if the answers given aren’t clear asking for more explanation. Taking up the opportunity to talk to the nurse specialist at a separate appointment for more information and to gain a thorough understanding can help too.

Marion said afterwards ‘I think the participants benefited from Rachel Hall’s talk because she was able to explain the aims of treatment in achieving a remission or plateau of multiple myeloma, to preserve a quality of life, extend remission and length of life and to prevent complications and control symptoms. She also explained better use of existing drugs and what new drugs are on the horizon.  Participants had the opportunity to question Rachel and Lisa about different treatments, the advisability of having vaccination against Shingles, and the time scale of when new drugs will become available.  The feedback from the members after the meeting was very positive.’