Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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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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My night at the UK Blog Awards

Kath Parson, OPAAL Chief Executive, tells us about her exciting night at the UK Blog Awards:

It began 24 hours beforehand wondering what to wear of course! The invitation said formal so long dress with all the trimmings, shoes, bag and jewellery to match.

Enjoying the evening

The event took place at the Westminster Park Plaza London in the shadow of Big Ben. I knew it would be a special night as the paparazzi were out in force clicking away at every gorgeous girl alighting from the fleet of taxi’s lining the entrance.

Once divested of coats we were directed to the huge ballroom three floors below street level. My first surprise the sheer number of people, around 500 guests mingling and networking amongst the many attractions provided by headline sponsors The Odeon. The second surprise was the average age of the guests, I definitely felt like an old lady as most people were in their late twenties early thirties. No doubt a reflection of those who drive social media today. I met many fantastic and inspiring people all keen to learn about our blog. I’m sure I’ll stay in touch with several.

The event was sponsored by Odeon

Wonderful hospitality, we were wined and dined like kings. Then came the main business of the event, the awards ceremony itself.

Opened by Gemma Newton, CEO, UK Blog Awards, Chrissie King, Online Influencer and Charly Lester, Head Judge we were told there were 2,400 entries, and 94,000 public votes. Entries were whittled down to a short list of 240 all read by no less than 42 judges across the dozen of more categories. For each category there were individual and company winners.

We were in the Health & Social Care category company section and up against stiff competition, seven amazing blogs all doing a wonderful job informing and supporting their constituency audiences.

We were in the Health & Social Care category company section

We didn’t win, but then I had not expected to. I am just so very proud of our partners and OPAAL staff that we had reached the final’s stage at all. We would not have a blog if the older people we support and our wonderful dedicated volunteers had not agreed to share their many inspiring stories with us, so my sincere thanks to all of you.

The winner in our category was Mentalmovement

I reserve a special mention for our Operations Manager Marie McWilliams who tirelessly manages our blog, well done Marie you can feel very proud of this achievement.

Finally I’d like to thank all those people that voted for us, without you we would not have reached the final. I’m already looking forward to UK Blog Awards 2018, so please keep those stories coming in.

Kath Parson, OPAAL Chief Executive


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Impetus Cancer Advocacy Service gains second Quality Mark

Congratulations and well done to our cancer advocacy delivery partners who have achieved the OPAAL Quality Standards for the provision of advocacy support for older people affected by cancer. Today we find out more from Macmillan Brighton and Hove Impetus:

“Special thanks to Rebecca Turnull-Simpson, a local lawyer and one of our dedicated volunteer cancer advocates. Her time given to the quality mark audit process has enabled the hard work of our whole fantastic team to be recognised.” So says Sam Bond, Macmillan Impetus Cancer Advocacy Service Manager.

 

Impetus staff and volunteers with their Quality Standards certificate

The first quality mark achieved was the Advocacy Quality Performance Mark which is a national quality assessment and assurance system for providers of independent advocacy. Impetus achieved it in September 2016.

Quality standards have been awarded for the provision of specialist advocacy support for people affected by cancer. These standards set out what clients can expect and are a way of demonstrating professionalism and commitment in independent cancer advocacy service delivery. The service puts the interests of clients first, is safe and effective and promotes trust through a professional and person centred approach.

Macmillan Impetus Cancer Advocacy service is a free service funded by Macmillan. The service is provided by Brighton & Hove Impetus – a charity working to reduce isolation and improve well-being.  We provide 1:1 support to people affected by cancer who are often facing challenging life situations. The service supports them to express their needs and have increased choice and control.

 

Do you know someone who is affected by cancer or who has a close family member affected by cancer? Impetus can provide a trained advocate who will visit them at home or in hospital, build a relationship of trust and find out what is important to them.
Do you want to become a volunteer Cancer Advocate?

Please phone 01273 737888 or email canceradvocacy@bh-impetus.org

Sam Bond, Service Manager, Macmillan Impetus Cancer Advocacy


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The complex interplay of practical, physical and mental factors affecting patient experience

Today Kathleen Gillett of Dorset Macmillan Advocacy considers the barriers preventing older people affected by cancer accessing the help they need:

We explore the physical, emotional and attitudinal barriers that older people may face to speaking up for themselves in a case study about ‘Stan’ during our volunteer induction.  In the case study Stan is given his cancer diagnosis and goes home alone without being offered any further sources of support or information.   Stan’s story is part of the OPAAL Cancer, Older People and Advocacy national training pack for peer volunteer advocates.  Stan is an archetype but in considering his story we put ourselves in the shoes of an older person facing cancer alone.At our most recent meeting for practising advocates we also considered a case study, this time a real one.  Jo Lee, Senior Advocate and Coordinator, outlined the situation of advocacy partner ‘Kevin’. Kevin had got in touch with Dorset Macmillan Advocacy himself after seeing a Macmillan TV advert and then searching the internet for local support. Jo gave a brief overview of Kevin’s medical history, the advocacy issues that he identified at the first assessment and the issues that subsequently presented or were identified by her during that assessment.

A discussion ensued about potential courses of action and then Jo explained what had actually happened.  The ethos of our service meant we were guided by the wishes of the advocacy partner at all times. There was a successful outcome in our having swiftly obtaining a grant and arranging the electrical upgrade and shower installation.  There remained other ongoing and unresolved issues.  At this point Jo ‘unmasked’ the volunteer advocate who was partnered with Kevin and we were able to question him more deeply.

Why had Kevin become disengaged from his healthcare team and been missing his outpatient appointments?

Kevin had longstanding depression, he lived alone with no family in the UK.  He was no longer employed owing to an alcohol problem which might have been linked to pressure at work. His lifestyle meant that he would often watch TV all night and sleep most of the day. Effects of surgery meant that it was extremely difficult for him to make himself understood on the telephone. Fatigue was affecting his mobility and he found public transport to attend appointments very inconvenient. His nutrition was not as good as it could be and he had continuing pain.

The outpatient appointments that Kevin was sent were invariably early in the morning.  Kevin had his letters well organised in a file and knew when the appointments were but did not get up in time to go.  Kevin was in contact with his GP surgery but always seemed to be seen by a different doctor so did not experience any continuity in his primary care.

So we discovered a complex interplay of practical, physical and mental factors affecting Kevin’s ‘patient experience’ and his ability to benefit from the healthcare on offer.

Kevin and his advocate enjoyed an afternoon visit to the seaside once the initial issues were resolved.  It was a rare outing from the flat that was not about medical appointments for Kevin and an opportunity to get to know Kevin as a person for his advocate. The partnership continues and steps are being taken to investigate Kevin’s ongoing pain issues.

Health professionals are dependent upon patients engaging with them.  The barriers to engagement that patients have will sometimes be outside of the scope of their role. Kevin’s advocate has worked with him to resolve the issue that was concerning him most, has coordinated his care in and outside hospital and paved the way for him to reengage with his healthcare team.

Kathleen Gillett, Dorset Macmillan Advocacy


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The transition from professional to volunteer which brings a wealth of expertise

The volunteers who have shared their stories in Time: Our Gift to You come from all walks of life but I felt it was significant that several were retired Health or Social Care Professionals.   I wanted to know more about what motivates them to train as an advocate so I asked Mike Goodman, a newly retired Clinical Nurse Specialist who joined Dorset Macmillan Advocacy last year, why he volunteers and what he feels former Health Professionals in particular can bring to the role. Kathleen Gillett, Coordinator, Dorset Macmillan Advocacy

‘I was interested in becoming an advocate because, despite being retired, I still have an interest in helping people live with and recover from a diagnosis of cancer. After many years as a health professional you do build up a wealth of expertise and numerous medical contacts which it seems a waste to suddenly abandon just because you retire. The transition from professional to volunteer is a tricky one and it can be rather easy to slip back into a formal or professional approach to a situation rather than acting and speaking as a lay person – or simply imagining being the patient. However empathetic professionals think they are, because they have been trained/educated and because they are busy they quickly slip into “professional” mode and forget just what it is like being a confused, slightly scared, often lonely recipient of health care services.

Mike Goodman

I am sure advocates can be effective whether they have been cancer patients themselves, or have been the carer of someone with cancer or have been health care professionals. All those experiences will enable you to be a help and support. They would all bring different skills and abilities to the many and varied problems that the cancer partner is grappling with. Probably the greatest skill lies with the Macmillan Senior Advocate or Volunteer Coordinator in choosing which advocate to link up with each new partner.

Health Care professionals do have the ability to understand how the wheels turn in a hospital department or what a GP really needs to know in order to change the experience for a patient who is in a crisis. They will understand that it is hard to get something done on a Friday afternoon when most departments in a hospital are winding down for the weekend or that a referral between teams will have to go through an MDT meeting before a decision is made. Explaining that there is no simple blood test or screening process for some cancers comes as a shock to some people in the community who are reading the tabloids and grasping at every tiny news item that has the word cancer in its headline.

Retired professionals can play an important role in advocacy but, at the end of the day, it is that human touch, that word of encouragement, that listening ear that every person affected by cancer needs and wants and that is a role that every advocate seeks to fulfil.’

Mike Goodman, retired CNS.

Our thanks to Mike for sharing his thoughts.


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Do we expect too much of our doctors?

Today, Dorset Macmillan Advocacy‘s Coordinator Jen Rimmer considers patient – Doctor communication and how advocacy might help:

Working as a cancer advocates, we witness the communication between patients and their doctors all the time. When that goes well, the outcome is good for everyone involved; but when it doesn’t the effects can be truly distressing.

In her lecture ‘The Right Stuff: How Do We Make Moral Choices? Professor Gwen Adshead of Gresham College attempts to examine a central issue in patient doctor communication and it made for interesting listening.

Professor Adshead asks her audience to consider that doctors must consider not only what CAN be but also what SHOULD be done when making decisions about treatment. Previously a good clinical decision was equated with a good ethical one but this is no longer the case.

From a purely clinical perspective the path ahead can seem obvious– she gives the example of a heart failing due to lack of blood – but the complexities of the patient’s own unique personal and social values that inform their wishes should be considered. Things get even more complex when considering the more emotionally challenging aspects of healthcare (i.e. end of life care, decisions to refuse or discontinue treatment) or where an individual’s capacity is compromised.

Gwen Adshead

Although philosophy is taught at medical schools to support our doctors to make the inevitable ethical or moral decisions they will face, Adshead reports that one of the most common complaints aimed at medics is still “that they do not listen to the lived experience of ‘the patient’, or let the patient’s ‘voice’ be present and important”.

But it is reasonable to expect our doctors to be confident to make well informed, ethical decisions in every case? She asks, “whether it is just and fair to expect a group of people who are chosen for cognitive intelligence and intellectual skills in exam passing to become morally superior individuals?”

Is this where advocacy can offer most value? Helping the patient’s voice to be heard also has the secondary effect of supporting the doctor in their clinical role.

Advocates spend time with their partners and gain an understanding of that person beyond their illness. Can we expect a doctor to be able to glean and process enough information to make the best ethical decision for that individual within the 4 walls of their consulting room?

Adshead describes how a person’s decision making processes are affected by the past, the present dilemma and even their views and beliefs about the future. Often this is not obvious to an onlooker or even to the person themselves. Having an independent advocate can help unpick some of this complexity. Discussions take place in a neutral space allowing freedom to explore thoughts and feelings and work out what is right for them.

No matter what our life experience, there will be situations where we find ourselves in uncharted territory and struggling to navigate. As Adshead states, “vulnerability and neediness are not indicators of low status or even disability; they are aspects of a person’s identity that are part of the human transactions that are essential to social life.”

Advocacy recognises this and can offer the support to gain the best outcomes for all involved.

Dr Gwen Adshead is Visiting Gresham Professor of Psychiatry and currently consultant forensic psychiatrist at Ravenswood House. Prior to this post, she worked at Broadmoor Hospital from 1996, first as Consultant Forensic Psychiatrist, and then as a Consultant in Forensic Psychotherapy.

This lecture is part of a series The Right Stuff: Ethics and Moral Psychology and is available online here: https://www.gresham.ac.uk/lectures-and-events/the-right-stuff-how-do-we-make-moral-choices

Jen Rimmer, Dorset Macmillan Advocacy


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Learning more about independent advocacy in Northumberland

In today’s blog post we hear from Karen Renner, volunteer coordinator at AgeUK Northumberland about a recent advocacy learning and development opportunity for volunteers and staff:

On the 28th February Age UK Northumberland hosted an advocacy training day which was funded as the result of a successful Macmillan Learning and Development Grant application.

The Cancer, Older People and Advocacy Project in Northumberland  was set up by Macmillan Cancer Support and Age UK Northumberland to provide one-to-one support, help and information for people over 50 and their families affected by cancer.  The programme is only available in certain parts of the country and Northumberland is fortunate to be one of these areas.

Val Ford leads the training session

Current and new cancer advocacy volunteers attended the training day as well as Age UK Northumberland staff.  Val Ford, Director of Training from SEAP which is one of the leading UK advocacy agencies delivered the training.  Val who was involved in both writing the original training package for the project and delivering it nationwide to front line Macmillan staff proved an excellent facilitator.

The course provided an understanding and awareness of what Independent Advocacy is and highlighted the principles which underpin good practice in advocacy.  Some of the challenges that can arise with Independent Advocacy were examined and the strategies that could be used to resolve these. 

A number of group activities supported the learning process including several case studies which also examined the various issues faced by older people needing advocacy assistance. 

Discussion over exploring professional boundaries proved of particular interest to both existing and new volunteers.  The dangers of not adhering to boundaries were examined as well as strategies to employ should a boundary be broken.

After a very thorough and engaging day, all those present felt that their knowledge of advocacy had increased.  New volunteers felt they were better equipped with both the knowledge to pursue an advocacy role and the skills to maintain an independent and client led relationship.  Those people already familiar with the project found the day both motivating and a useful reflection on what they had already learnt to date.

Looking to the future, the project in Northumberland continues to gather impetus.  With continued investment in the training of our outstanding volunteer workforce, older people diagnosed with cancer will have the understanding and support needed to make the decisions that will guide them through their journey.

Karen Renner, Volunteer Coordinator