Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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‘I don’t know where to start’

Kathleen Gillett of Dorset Macmillan Advocacy looks at the plight of older carers:

We are currently supporting a lady in her late 70s who has a long term health condition and was until only a few weeks ago cared for by her husband.  A sudden deterioration in his health owing to a progression in his cancer has turned the situation upside down and she is now his carer.  With no family in the local area she must alone cope with taking care of things at home that were formerly his domain and at the same time communicating with many professionals with unfamiliar job titles.  No wonder she felt anxious and said ‘I don’t know where to start.’

There have been many reports about the needs of carers over the years.  The importance of supporting carers is widely recognised but until now there has not been a lot of detail about older carers.  Carers Trust have published Caring About Older Carers: Providing Support for People Caring Later in Life which is a toolkit aimed at commissioners of health and social care in England to highlight the needs of carers over the age of 60.

The statistics are compelling. The number of older carers is increasing at a greater rate than for carers as a whole.  Three in five of carers aged over 85 are male and most carers over 80 spend more than 50 hours a week caring.  Carer’s health deteriorates incrementally with increased hours of caring.  Older carers are more likely to have age related illness themselves – two thirds of older carers have long term health problems. One third of older carers have cancelled treatment they needed due to their caring responsibilities.

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Carers of all ages deserve recognition and support. Older carers need the support perhaps more than anyone.  From a financial perspective research has shown that carer breakdown is often a factor in emergency hospital admissions and admission to residential care.

The toolkit chapters identify areas of need for older carers including health and wellbeing; financial concerns; social isolation; concerns for the future; information and advice; assessment, support planning and involvement and finally bereavement and life after caring. Examples of tried and tested practice are given with each of the chapters and particular mention is made of the role of advocacy services in representing and supporting carers with assessment, support planning and involvement.

We were able support the lady at an appointment with the hospital’s palliative care coordinator. Then we accompanied her to view a nursing home where her husband could be admitted to receive the palliative care he needs. She was able to make preparations and the following week her husband’s planned discharge from hospital took place.  The nursing home location is easier for visits and there are no restrictions on visiting hours and the possibility of overnight stays for family members.

Older carers struggle to remember their own needs and to look after themselves.  The support and encouragement that peer volunteer advocates can bring to older carers affected by cancer can make a huge difference to them.


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Build, Learn, Share at the Macmillan national Volunteers Conference 2016

Today we hear from Bob and Maddy Smith:

Back in May three volunteers from the Dorset Macmillan Advocacy service at Help and Care were fortunate to be able to attend the Macmillan Volunteer Conference in Hinkley, Leicestershire as volunteer Peer Cancer Advocates. We were really enthusiastic about this although a little apprehensive too. We arrived at the hotel and were immediately made welcome by the friendly hotel staff and the Macmillan welcome team.

Bob and Maddy with friends

Bob and Maddy with friends

After check-in we made our way around the exhibition area which had many stands showing different aspects of the Macmillan organisation and ideas to help us as volunteers. Did you know for instance that there are Macmillan trained Boots No7 beauty advisors who know how to help people with cancer best use their products and feel good about themselves?

Throughout the Friday and Saturday there were sessions in the main conference hall as well as workshops we could attend on topics including Networking, Communication, Getting Your Story into the Media and Managing Stress to name just a few.

There were very interesting speeches from Lynda Thomas (CEO, Macmillan), Joelle Leader (Volunteering Director) and several others.

Lynda Thomas

Lynda Thomas

There were so many interesting facts to learn for example in one year Macmillan:

  • Supported 5.8M people affected by cancer
  • 590,000 were supported by Macmillan nurses
  • £260M was raised to fund Macmillan (£27.5M from coffee mornings alone)

Also we heard that

  • Mobile services are provided for hard to reach areas
  • Discussions are ongoing with government departments to better support those affected by cancer.

All new information to the both of us.

We managed to speak with both Lynda Thomas and Joelle Leader about Cancer Advocacy. Speaking to them opened up opportunities to raise our profile and present Cancer Advocacy to Macmillan Customer Service Centre staff and those who operate Macmillan mobile service buses in the South of England. We also spoke with many of the delegates to find out about them and tell them what we do. Many were interested including a GP (also a Macmillan volunteer) in Brighton who is now actively promoting Cancer Advocacy. So an excellent conference, lots of learning, networking and a lot of fun too. On the Friday evening there was a gala evening to celebrate what volunteers do with dancing to a live band afterwards.

Volunteer conference 2016 dinner

A theme for the conference was:

BUILD on your existing skills and knowledge

LEARN from other Macmillan volunteers

SHARE your stories and experiences

We certainly did all these as well as recognising and celebrating the value that Macmillan volunteers give back to our communities. It was time very well spent and we would encourage others to apply to go along next year. We came away invigorated and excited with new ideas on how to better promote Cancer Advocacy and ready to help even more people affected by cancer.

Bob and Maddy Smith, Dorset Macmillan Advocacy

(N.B. Dorset Macmillan Advocacy is funded by Macmillan Cancer Support)


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I have found this a really rewarding task and confirmed what I know that ICANN is a good and well led charity.

Did you know that as part of our work we’ve developed Quality Standards for the provision of advocacy support for older people affected by cancer? The standards set out what clients should expect when they receive independent cancer advocacy services.  They are the standards that are demonstrated on a day-to-day basis by good older people’s cancer advocacy services.

The standards are a way of us reinforcing and demonstrating professionalism and commitment in our cancer advocacy service delivery. There are organisational, partnership, monitoring and evaluation, service provision and training, supervision and support standards. Each standard contains a series of statements that, taken together, signify what a good older people’s cancer advocacy service looks like.  It puts the interests of clients first, is safe and effective and promotes trust through a professional and person centred approach.

ICANN is the first of our delivery partners to go through the cancer advocacy Quality Standards audit process and we’re delighted to say, the first to receive their compliance certificate from OPAAL. Many congratulations to them.

ICANN QSCertificate

In today’s blog post, Sandra from ICANN tells us about the process:

As a volunteer with ICANN based in Preston Lancashire, I was flattered to be asked to consider looking to see if ICANN is meeting the Quality Standards for the provision of advocacy support for older people affected by cancer. Was it something I might like to have a look at, as to whether we would be eligible to apply? As always Janet treated me as a volunteer so no pressure however a chat over coffee and I was happy to have a go.

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I spent a couple of hours at home looking through all the audit requirements and going through all the data on the ICANN website that I thought would fit. I was pleased to see that ICANN could measure up to meet most of the requirements and was aware in a couple of areas there would be more material available by talking to other volunteers.

Sandra

Sandra

I set aside a Monday morning with Janet in the ICANN office and we went through all the standards categories filling in some of the blanks. Only one area needed to be addressed which we talked to the CEO about. Later I also spoke to two other volunteers for help and input in their speciality areas, which was very useful.

A few weeks later I spent a further two mornings in the office mostly spent writing up a fair copy, and checking policies and procedures were as requiredI am pleased to report that the area missing is now in place. I found it useful to complete most of the work in the office as Janet and Pat (Admin) were on hand to help with any queries.

I have found this a really rewarding task and confirmed what I know that ICANN is a good and well led charity. Going for the Quality Standards is the right thing to do and I did not find it too onerous.

Sandra, ICANN


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How our steering group helps us to network and build partnerships

Our Local Cancer Champions Board, the steering group for Dorset Macmillan Advocacy, changed its name in 2014 to Cancer in Older People Development Group.  Members wanted to create a group that could, in addition to overseeing our service at strategic level, bring together people interested in improving patient experience for people over 50 affected by cancer and their carers. They felt that the new name was more self explanatory and we are fortunate to have an interesting mix of people on the group.

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As Dorset Macmillan Advocacy is delivered by two organisations in partnership the steering group sought to meet alternately on different sides of the county.  Meetings have been hosted since 2014 by Lewis Manning Hospice in Poole and since last year by Joseph Weld Hospice in Dorchester.  We have benefited from learning about the hospices and our presence there has raised our profile with their staff and visitors.

We also invite local guests to the group meetings such as the project lead for the Macmillan Information Scoping Project which took place last year and the director of Dorset Living Well Active, a physical activity project which is a partnership between Macmillan and Sport England.  The group can explore joint working at both strategic and operational level and this really enhances the daily  networking that staff and volunteer advocates do.

The new Chief Executive of Weldmar Hospice Care Trust, Caroline Hamblett, joined our last meeting in May and described the variety of community services that the hospice provides. Senior Sister Sally-Anne Baverstock then gave the group a tour of the facilities which include 14 in-patient beds all with views over the beautiful garden and countryside beyond.  We’ll arrange a visit for our team of volunteer advocates in the near future.

Steering group visit Joseph Weld Hospice

Pictured left to right are Sally-Anne, Paul Hickman, Chair of Trustees at Help and Care, Emily Brown, Senior Volunteer Coordinator at Dorset Advocacy, Jenny Rimmer, Macmillan Senior Advocate at Dorset Advocacy, Bob Smith, volunteer advocate.

Kathleen Gillett, Dorset Macmillan Advocacy

 

 


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Understanding and motivation from another angle

Kathleen Gillett from programme partner Dorset Macmillan Advocacy writes in the second of two posts about how our peer advocates can support older people affected by cancer achieve voice, choice and control in their cancer journey:

Whilst getting to grips with the notions of ‘health literacy’ and ‘patient activation’ that I read about in a report by Macmillan Cancer Support I went on to think about how health literacy and patient activation might interact and found it easiest to use a graph.

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So, person A has a high level of health literacy but a weak level of patient activation.  They know and understand a lot but lack motivation to move forward.  Person B has very strong patient activation but is hampered in decision making by lack of knowledge and poor understanding.  Person C has a balance represented by their position on the dotted line.  Their level of health literacy and patient activation are sufficient to allow them to move forward without one impeding the other.

What can independent advocacy support potentially do for persons A, B and C?  Provide emotional support to build confidence and source practical help to reduce barriers thus enabling person A to strengthen their patient activation (and move closer to the dotted line). Source information in an appropriate format and create opportunities for discussion to check understanding with person B thus increasing their health literacy.  Help person C to maintain their balance and grow in both knowledge and confidence throughout their journey (travelling up the dotted line).

There’s no right place to be on this graph, just as there’s no single right way to handle a cancer diagnosis.  In reality persons A, B and C will have their own views on what help they need and the role of advocacy is to empower them to express those views.  They can be supported to move in a particular direction only if they have expressed the wish to do so.

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What of people with both low health literacy and weak patient activation? Older people may be more likely to be in this situation with the risk of low general literacy from limited educational opportunities, having to contend with multiple long term conditions that sap time and energy and having only patchy social support networks.  Tailored empathetic peer advocacy support that comes to them at home and stays with them for as long as needed can nevertheless help them to achieve voice, choice and control on their cancer journey.

Kathleen Gillett, Dorset Macmillan Advocacy


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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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this is about quality of life and life expectancy not about bureaucratic posturing and pounds, shillings and pence

Today’s post is from Rosie Young a peer advocate at Getting Heard (formerly Oxfordshire Advocacy). Rosie is also a local and National Cancer Champion and an older person affected by cancer who has used the Cancer, Older People and Advocacy service herself:

I read with interest the final report from Patty Doran, Cathie Marsh Institute for Social Research, The University of Manchester. 

A month ago Oxfordshire Advocacy’s Patient Experience Group, who are a group of volunteer advocates working on the Cancer, Older People and Advocacy Project,  currently also receiving cancer services themselves gave feedback to Healthwatch on our  experiences locally.  Surprise, surprise! this mirrored the key elements of the report and I share a few examples from this group below but first, a reminder of the Law on Consent, Risk and Information…

Montgomery v Lanarkshire Health Board Judgment 11th March 2015

The Supreme Court was fortunate in having submissions from Andrew Smith QC on behalf of the GMC.  The GMC submitted that an approach based upon the informed involvement of patients in their treatment, rather than their being passive and potentially reluctant recipients, can have therapeutic benefits, and is regarded as an integral aspect of professionalism in treatment. This was repeated in the Judgement in the Supreme Court

The court specifically stated that a patient must not be bombarded with technical information It is not up to the patient to find the correct expression of words. The onus is now firmly placed on the doctor to find out what their patients want to know

The doctor is under a duty to take reasonable care to ensure that the patient is aware of any: potential benefits, risks, burdens, side effects of each option, option to have no treatment and no pressure on the patient to accept advice.

 These stories are from Getting Heard’s Patient Experience Group who are not backwards in coming forwards!!

 One volunteer was told by the consultant “It’s your body – it’s up to you whether you have a biopsy or not”.  She added ‘I was given no explanation by my consultant as to what the consequences would be if I didn’t have the biopsy or what the follow up would be. Because of the change in my PSA reading (which had been stable for the past 5 years of tests) I decided to have the biopsy which indicated the presence of cancer. At no stage was I given any advice whether to have the procedure.’

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Another volunteer felt some pressure to accept the ‘Gold Standard’ and alternatives were dismissed. ‘After an operation in my left lung for cancer I was diagnosed a year later with a primary in my right lung. I was under considerable pressure to have a lobectomy from the Clinical Fellow and Specialist Nurse despite having significant risk factors which would have impeded recovery. In consultation with my GP, Palliative Nurse and family I opted for an ablation. The Specialist Nurse when I told her (having submitted a risk assessment) contacted my Palliative Nurse to question my capacity to make a decision.’

Below are some more examples from our volunteers  where they felt they should have been given better information.

Number of operations required

‘The number and extent of operations should be clearly spelt out. I was told that I would need a second operation for my agreed implant only as I was going to the theatre for my mastectomy. The implant later had to be removed in a third operation’

Long term effects of operations i.e. nerve damage

‘I have gone from a sixty plus active person to needing a blue badge, upper limit attendance allowance with severe restrictions on my social life because of pain’

Dismissing the long term effects of treatment

‘The long term effects of chemotherapy and radiotherapy should be clearly identified. I was never told about the lifelong problems to be encountered with radiotherapy, from which I am still suffering.

Attitude of my oncologist dismissing treatment that is causing anaemia as of little consequence – putting in an email that he would ring me if he had time – ‘

Side effects and effectiveness of drug therapy

Medication, such as Anastrazole, should be discussed and the side effects clearly spelt out. I have just cancelled my final two years of Anastrazole due to side effects and having discovered, with some difficulty the percentage risk increase of a recurrence of cancer is only 2%.

Rosie

Rosie

Overall our Patient Experience Group felt that urgent retraining in the legal and professional practical application of all aspects of Consent, Risk and Information is needed fast and nationally.  We must remember that this is about quality of life and life expectancy not about bureaucratic posturing and pounds, shillings and pence.

Rosie Young, Getting Heard (formerly Oxfordshire Advocacy)