Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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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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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


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Be Bold for Change on International Women’s Day

Today is International Women’s Day and the campaign theme is Be Bold for Change.  Big Lottery Fund are speaking to women who have made a big change in their lives and their communities.  Our volunteer peer advocates make a tremendous contribution, choosing to give their time to support their peers because they know that they can use their personal experience of cancer to make a difference to other older people’s lives.

 

Today we’re focusing attention on Claire’s Story, from our recent publication Time: Our Gift to You, which features volunteer peer advocates talking about why they volunteer, and what they themselves gain from their volunteering experience.  Claire has used her own experience of breast cancer to support Sally, her advocacy partner who has the same diagnosis.

Claire’s volunteering story:

“Last year, I decided to volunteer as a peer advocate in Oxfordshire because I could see at first hand, as I was going through my treatment, that there were many people who were struggling to find their way through the healthcare system in our area and to access the support they needed. It seemed obvious to me that a person who has been treated for cancer is potentially in a very strong position to support another person going through the same or similar treatment and experience.

One of the older people affected by cancer that I’ve supported is Sally (not her real name). She was diagnosed with breast cancer in 2015 and was referred to Oxfordshire Advocacy by her specialist breast nurse. Sally lives alone, struggles to get out and had become very isolated and depressed. When I first met her, she talked often about the diagnosis being the “final straw” and I recognised many of the feelings that I had felt when I was first diagnosed: anger, fear, sadness, even despair.

In the first few weeks when I visited Sally at her home, we often would just talk and share experiences and I know that she really appreciated that someone had taken the time to sit and listen and talk. I knew that when you are first diagnosed with cancer you do get quite a long appointment slot with your consultant and your specialist nurse, but you are in a state of shock and you can’t really take things in, and you are certainly not able to talk through how you are feeling. You need lots of time to process what is happening to you and it is weeks later when you are ready to really think about what is happening to you.

Since then, I have been able to help Sally in a number of ways. For example, I contacted Breast Cancer Care, I knew how good they were from my own experience, and ordered a number of information leaflets for her – some on treatments she had been advised to have, specific information on lymphedema and some on other issues such as her benefits entitlement. Sally suffers from cataracts as well and so I made sure I ordered the information in large print so that she could read the text.

Sally had a specific issue with one of her drugs that was making her feel unwell – I recognised the issue because I had suffered something similar – so I printed some information from the Macmillan Cancer Support website. Sally doesn’t have a computer or access to the internet. I took it to her and read it through for her. I also helped her prepare some questions about this for her next GP appointment and as a result she was able to discuss the issue with her doctor and get the drug changed to minimise the side effects.

Most recently I was able to help Sally with her application for a one-off Macmillan support grant – she wanted to use the money to help with her heating oil. She had being finding it difficult to fill in the form and so she dictated to me what she wanted to say in her application and I was able to write it down for her and I could use my experience to help with the spellings of all the drugs she was taking! She said that receiving the money was very important to her as it eased her worries about putting the heating on in the winter.

I hope that I have managed to convey that working with Sally has also been very rewarding for me. Cancer treatment is often quite technical and complicated and over time you are forced to become quite an expert in the healthcare system and how to get support. I am really glad to be able to put my experience to good use.”

Read more about the inspirational volunteers who are being bold for change on behalf of and alongside their peers here

Marie McWilliams, OPAAL


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The system is impossibly difficult to navigate..

Kathleen Gillett of Dorset Macmillan Advocacy (DMA) tells us about the acknowledgement that someone is needed to act as the “glue in the system”:

At the 2016 Macmillan Professionals national conference which I attended last autumn Fran Woodard, Executive Director of Policy and Impact, Macmillan Cancer Support, spoke about personal experience of cancer in her family and said that the system is impossibly difficult to navigate as treatment gets more complex and people are living with more co-morbidities.  Her welcome address was about workforce. She said there is a need for a focus on coordination, navigation and support with one person who is the ‘glue in the system’.

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A new role has been trialled in some parts of the country titled Macmillan Support Worker and a number of these posts will be funded by Macmillan in Dorset over the coming year.  Support Workers will be based in hospital Trusts alongside clinical staff and there will be some flexibility for each Trust to define their role and which cancer pathways they will support.

During break time I spoke with Simon Philips, Executive Director of Strategy and Performance, Macmillan Cancer Support, about how the advocacy service might mesh with the new Support Worker roles in Dorset. I am hopeful that the Support Workers will have a remit to know about what support is available in the voluntary and community sector.  We will offer them an opportunity to meet the peer volunteer advocates and hear directly about the difference advocacy makes to older people and carers.

Simon Phillips Executive Director of Strategy and Performance MCS and Kathleen Gillett DMA

Simon Philips and Kathleen Gillett attempt a selfie

Simon asked me about volunteer retention and whether we had any problems keeping volunteers. I was glad to be able to tell him that we still have on the team several of the volunteers we recruited for our pilot phase in 2012.  The size of our volunteer team is growing every year because despite a few volunteers retiring or going on to other roles such as hospital governor the majority are staying because they are so passionately committed to their roles.  They always arrive for their informal interview with a high level of motivation but once they are trained and ‘matched’ with an adovacy partner that motivation only increases as they see the real difference they are making to people’s lives. No two advocacy partnerships are the same and so the volunteers tackle the challenges that each new case brings with great energy.  They frequently tell us of the emotional rewards that they gain from the role.

As a service we benefit enormously from retaining a team of trained peer volunteer advocates that has increasing experience. In fact at our most recent volunteer networking forum at Help and Care my colleague Jo Lee and I were completely left out of most of the discussion while new and more seasoned advocates got to grips with a case study.  Could peer volunteer advocates work closely with the new Support Workers to be ‘the glue in the system’ that Fran would like to see?

Can you see peer advocates as part of the answer? Let us know what you think.

Kathleen Gillett, Macmillan Project Coordinator, Dorset Macmillan Advocacy


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Time: our gift to you

We’re absolutely delighted today to be launching our new book of volunteer stories from the Cancer, Older People and Advocacy Programme. Telling 19 different stories of peer advocates and cancer champions, it’s called “Time: our gift to you”.

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We’ve spent lots of time on this blog telling you about the difference our volunteers make to the older people affected by cancer they support. We thought it was about time we gave those volunteers an opportunity to tell their own stories.

Prior to developing this new publication our peer volunteers told us some of the reasons they’ve chosen to become involved:

“It makes a real difference to those we support. It ticks lots of boxes for me, I wanted to continue to use skill, experience & knowledge to help others, to make a positive difference to people’s lives.”

“I want to help people affected by cancer, and am happy to help people through the ‘cancer experience’. For me it’s all about putting something back, I was well cared for and I’m aware that a lot of other people are not so fortunate.”

“Because I believe I can make a real difference, I can help people practically & personally. I have a good idea of what people are going through. I can help them with their concerns or fears for the future. I enjoy being part of a team, and I enjoy the training offered to us all.”

“I feel I can relate to my advocacy partner very well due to my own experiences. I find it useful to have something in common with my partner in addition to the cancer. I am an empathetic person, a good listener and able to support others to express their concerns and worries.”

In addition to making a difference for others, Cancer, Older People and Advocacy volunteers also tell us they themselves benefit from their volunteering role.

You can read and download all 19 stories and find out why cancer advocacy volunteering is making such a difference by clicking here

Marie McWilliams, OPAAL