Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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Advocacy services as part of the wider picture of patient involvement

The Dorset Macmillan Advocacy steering group (Cancer in Older People Development Group) met at Lewis Manning Hospice on a sunny day in Spring with the usual packed agenda.

A key discussion topic was how learning from the advocacy services can feed in to local service improvement. We noted how the team of peer advocates from Getting Heard in Oxfordshire had produced a report with suggestions which had been well received by the local Trust.

There were plenty of informed contributors:  Tracy Street, Macmillan Engagement Coordinator for Dorset attended to lead the discussion on user involvement (Tracy had been responsible for patient involvement at the Dorset Cancer Network);  Paula Bull who has joined the steering group has been a part of the Dorset Cancer Patient group for many years;  Lynn Cherrett, Lead Cancer Nurse at Poole Hospital is working closely with the new Dorset Cancer Partnership (DCP) (the local Cancer Alliance).  Together with the DCP chair Lynn is working to create a new Dorset Cancer Patient Experience Group.

Informal discussions after the meeting                                                                                                                   Front L to R Julie Cook, Acute Oncology Nurse, Dorset County Hospital, Rachael Brastock, Macmillan Psychological Support Lead, Genevieve Holmes, Macmillan Coordinator/ Senior Advocate for Dorset Macmillan Advocacy at Dorset Advocacy, Cait Allen, CEO Wessex Cancer Trust
Back L to R Graham Willetts and Charles Campion-Smith

It was agreed that the advocacy service will have a part to play in future local cancer service improvement. People affected by cancer (patients and carers) are steering the service, delivering the service and benefiting from the service.   They have unique insight into how people in Dorset are experiencing the current cancer care pathways which can be usefully added to the views of trained patient representatives.

Bob Smith, peer volunteer advocate and Paula Bull

The group also welcomed Cait Allen, Chief Executive of regional charity Wessex Cancer Trust as a guest. Cait gave an update on the development of services in Dorset including the Bournemouth Cancer Support Centre which offers drop in support.

Kathleen Gillett, Macmillan Project Coordinator, Dorset Macmillan Advocacy (Help & Care)

 

 

 

 


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Advocacy support is unfortunately still relatively unknown..

Today Kathleen Gillett of Dorset Macmillan Advocacy argues that advocacy support has a role to play in breaking the negative cycle of cancer care:

The Patients Association has chaired a working group on ‘Transforming the cycle of cancer care’.

The working group argues that ‘currently there is a negative cycle in cancer care, where a short-term approach leads to rising costs in cancer, makes fewer resources available, provides inadequate patient support which re-enforces the need for a short-term ‘just managing’ approach.’  It proposes ways to break the negative cycle.

To address this challenge, The Patients Association and Bristol-Myers Squibb are working alongside experts and patients from across the cancer space to identify new models of service delivery, showcase best practice, and provide real improvements in patient care.

The report discussion includes sections and recommendations on:
Identifying, incentivising and implementing best practice
Developing effective prevention strategies
Implementing best practice in the early diagnosis of cancer
Delivering timely access to treatment
Engaging patients in delivering innovative care pathways

To my mind the report blurs the issue of patient engagement and involvement in service improvement and that of individual patients who are ‘engaged’ and active in their own healthcare journey. Both are important and worthwhile while distinct from each other.

I think that the argument for ‘engaging patients in delivering innovative care pathways’ reads like a explanation of the benefits of independent advocacy support:

‘Educating patients with cancer about self-management and empowering them to play an active role in the decision-making process was considered to likely result in an improvement of patients’ knowledge, understanding of their condition, adherence to treatment and engagement in their healthcare. Whilst not all patients will want to play an active role in their treatment and care, it is important to provide patients with the opportunity and the choice to make their preferences clear and also tell us what a “good” treatment outcome looks like for them.

‘The Working Group described these users as “activated patients” who can lead the charge for the adoption of best practice care. According to Working Group attendees, the evidence suggests that “activated” and informed patients use an average of 20% fewer resources than less informed counterparts.’

Advocacy support is unfortunately still relatively unknown and it is not uncommon to read policy reports in both health and social care spheres that appear to describe it and recommend it without ever using the term. I believe that independent advocacy support and particularly that provided by peer volunteer advocates has a role to play in breaking the negative cycle of cancer care. It can certainly be preventative and facilitate timely access to treatment in addition to empowering patients. I would like to see it recognised as an integral part of the cancer care pathway, recognised as best practice and implemented nationally.

Kathleen Gillett, Coordinator Dorset Macmillan Advocacy


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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