Older People Living with Cancer

Peer advocates supporting older people affected by cancer


1 Comment

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.

Advertisements


Leave a comment

I became a peer advocate because having had cancer, I felt that I could be of help to other people.

Deb McGarrity, delivery partner AgeUK Northumberland’s paid advocate, gives us an insight into what it’s been like delivering the older people’s cancer advocacy service in Northumberland recently. In what is Volunteers Week, Deb also introduces us to Marion, an older person affected by cancer, who has become a peer volunteer advocate:

volunteers-week-2016-logo

Since the end of last year the Age UK Northumberland Macmillan Cancer Advocacy and Older People project has steadily been receiving referrals, there have been 24 cases since December 2015.

Without a volunteer coordinator it has been a challenge to keep our volunteers engaged and supported, this has partly been achieved through a good relationship with local Macmillan who opened up their volunteer training schedule to our volunteers. Our volunteers have taken advantage of the Macmillan training by participating in training in Bereavement and Loss, Specialist Palliative Care, Cognitive Behavioural Therapy and Prostate Cancer.

aukn

Volunteers have also accompanied the paid advocate on visits and are slowly beginning to have their own cases. One volunteer, Marion Young has started working with a client who recently was given a terminal diagnosis. When I asked  how she feels about being part of the project, Marion responded by saying:

I became a peer advocate because having had cancer, I felt that I could be of help to other people. I am looking after my first client who has been given a terminal diagnosis. With the guidance of Deborah and the client’s permission I have written letters to the GP and Macmillan to support her with her request to be able to move nearer to her daughter. I am going with her to the hospice. I am meeting with her beforehand to note any questions that she has, giving her empowerment that enables her to understand what will happen.

Marion

Marion Young

From my own point of view it has been great being able to include the volunteers in client case work. Not only are we utilising their experience to help our clients but I too am learning from them which is extending my expertise and informing my practice. I can see too that the clients also really appreciate having someone to support them who has also been affected by cancer.

Deborah McGarrity, AgeUK Northuberland


Leave a comment

Emotional exhaustion

I’ve just watched the BBC One programme The Big C & Me. I didn’t watch it because I wanted to rather I watched it because I felt I should. As the mother of a now 25 year old son diagnosed with secondary cancer almost 18  months ago I now realise that I have been actively avoiding programmes, books and articles about cancer.

Now that’s a bit ironic when I do the job I do and which currently is heavily focused on advocacy for older people affected by cancer. Personally, I call it self-preservation.

Well, watch the Big C & Me I did. It tells stories of real people affected by cancer. It has happy moments and deeply sad moments and this is only episode one. It’s narrated by the BBC’s own Victoria Derbyshire who was diagnosed with breast cancer last July and who filmed her own breast cancer diary.

While watching the programme it really hit home to me where our peer volunteer advocates make the biggest difference when supporting other older people affected by cancer. It’s because they’ve been there, done that and have the t-shirt. As I watched Yvette, one of the three people featured in the programme, receive bad news I relived that moment when my son received his traumatic news. I know all too well that heave in the pit of your stomach. Our peer advocates know that heave too. They understand the absolute emotional exhaustion that can take hold at any point in the long haul of living with cancer.

Our wonderful medical staff treat those diagnosed with all the tools available to them. However, unless they’ve actually been on the receiving end of a diagnosis they can’t fully comprehend the impact. Our advocates can and that’s what makes the support they provide so unique. It’s that understanding which nurtures the supporting and empowering advocacy relationship.

One issue raised in last night’s episode of the Big C & Me was about how those affected by cancer don’t want sympathy. Ideally, they don’t want friends and acquaintances to treat them any differently than before. With that in mind the BBC and the Open University have produced a booklet entitled The Big C: Making a difference for people living with cancer. To find out more and to order a copy of the leaflet click here

page_superpromo_bigc

The Open University is also running a discussion hub “What is helpful for someone undergoing treatment for cancer: Which little kindnesses can you employ to help someone who is undergoing treatment for cancer and their families?” You can join the discussion forum here to have your say.

Marie McWilliams, OPAAL


Leave a comment

If the news is really bad, he will be there to help me get through it

This is why our Cancer Older People and Advocacy Programme matters so much:

Our volunteer peer advocates have been supporting people like Ron: “When the letter came, it said I should take somebody with me. The problem is that I didn’t know anyone well enough to ask them to go with me.

I should have realised that I was going to get some bad news by the fact that they did suggest I didn’t go alone. Anyway, I did go alone and yet despite the clues, I was really shocked that I was told that I had prostate cancer. I went numb and my brain stopped working. It was all in a haze.

Later on I couldn’t remember anything that the consultant said to me. I know I was given a lot of leaflets because I had them when I got to the car. I don’t remember driving home at all. I felt a great sense of confusion, apprehension and got very depressed very quickly. I couldn’t bring myself to look at the leaflets that I was given because the whole idea of having cancer was terrifying and I had this idea that if I didn’t look at them, it may go away. Stupid when I look back.

I couldn’t even decide if I wanted to tell my children about my illness. I can’t really tell you why I felt like that. It may be I didn’t want to bother them, or maybe I was trying not to confirm the fact in my own mind. I was frozen and unable to do anything. I did come across somebody who knew about the cancer advocacy services. They gave me the leaflet and I called for help.

A volunteer advocate called David came along to see me at home. I got on very well with him from the start. He assured me that all the things that we would talk about would be confidential, which was still important to me at that time.

iStock_000020698243_Large

David was a really good listener and I was able to tell him my story very easily and without any difficulties. He had had an operation for cancer himself and was undergoing observation still. We talked for a long time in that first meeting and the longer it went on the more relaxed I began to feel. I was still worried of course but my brain seemed to be starting to think again.

One of the things that David and I decided to do on his second visit was to put together a list of questions that I should ask the doctor at my next appointment. I realised that I didn’t know anything at all about my illness and any treatment that might be proposed. David offered to go along with me to that appointment and I quickly agreed. I knew that I would probably not ask the questions or remember the answers if I went alone.

In the meanwhile we went through the leaflets that the Consultant had given me and together we got the picture of exactly what it was that I was suffering from and what might be done to help me. At our next meeting I had moved along far enough to tell David that I hadn’t told my daughter and son about my diagnosis. We talked and I decided that I wouldn’t tell them yet as I wouldn’t be able to answer the questions that they would have for me.

David and I started to look at possible sources of care that I may need. We also looked at various ways that I might be able to make myself more financially secure, or viable, as I was then starting to worry about money. I don’t know why at 72 years old. He found me the address of various places that offered advice and then helped me write a letter. I don’t have any answers yet but that at least has started that ball rolling.

David came along to the meeting with the Doctor and it was good that he did. Along with the trauma of all that I had been told, I have to confess that my memory has begun to fail me as well. That’s been happening for a few years. David was able to take notes and ask the questions that I was missing on my list. The Doctor was very good as well and he was very patient with me.

I look forward to David coming around or telephoning me. I know he will be there when I need to go to the consultant again, which is coming soon, when he tells me what is going to happen. I will not have to go to another appointment alone. If the news is really bad, he will be there to help me get through it. If it’s a matter of describing treatments, he will be able to ask the right questions and then tell me all about it when we get home.”

Cancer can touch every aspect of our lives. Some issues are resolved easily such as access to benefits or transport arrangements others are complex and take much more time.

All of our volunteer peer advocates take time to build that all important trusting relationship which enables the older person to confide worries and concerns. It is this trust that forms the basis of the relationship, our advocates understand the impact of a cancer diagnosis on the individual and are able to address worries and concerns with skill and sensitivity. That’s why our service is so different from every other. Our volunteer peer advocates really do have the gift of time.

You can read more stories like Ron’s in our publication Every Step of the Way which can be accessed here

Marie McWilliams, OPAAL


Leave a comment

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.’

Getting Heard logo

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)


Leave a comment

New Macmillan project in North Staffordshire

In this post Kath Curley from programme partner Beth Johnson Foundation introduces us to new work going on in her local area:

I am pleased to be able to write about a new Macmillan funded project that is taking place in Staffordshire.

The Project is led by a familiar face to the Staffs and Wolves Cancer Advocacy and Support Project – Jo Coulson –  and Angie Bunn has taken up the role of Engagement Officer.

Jo

Cancer support services are perceived to be patchy or even inaccessible when the person affected by cancer is also Lesbian, Gay, Bi-sexual and Transgender (LGBT). There is a lack of solid evidence in relation to this area of need and an absence of information regarding effective approaches to service provision. With a view to improving this situation this project seeks to redress this by speaking directly to people from these groups and undertaking an in-depth assessment of current service “fit”. Recommendations will be made for service redesign based on the experiences recorded across Staffordshire, including Stoke on Trent. It is expected that the recommendations made will influence services nationally and may form the basis of a much broader review of services.

Jo

Jo Coulson

Scoping aims are to find out:

  • What are LGBT people’s experiences of cancer treatment and support locally?
  • What factors facilitate/inhibit open discussions between clinicians and LGBT patients?
  • How well educated are local health professionals about LGBT issues (both clinical and personal – do doctors make assumptions)?
  • What are awareness levels within LGBT communities about specific cancer risks, screening programmes, etc?
  • Is there a need for specialised LGBT code of practice, cancer information and literature, etc?
  • Can true ‘patient centred care’ disregard sexuality or gender variance?

It will use the following strategies:

  • Face-to-face meetings & capturing stories
  • Surveys and questionnaires
  • Focus groups, workshops, roadshows
  • Internet and social media
  • Workplace engagement with clinical staff
  • Information gathering and capturing experiences, identifying trends and gaps
  • User involvement in project development                                                                                                                                                                                                                                                                                  

 We wish Jo and Angie all the best with this Project and look forward to the outcomes. I will try to keep you all up-to-date as the Project progresses.

Kath Curley, Staffs & Wolves Cancer Advocacy Project Manager


Leave a comment

Max Neill

Last week we heard the sad news that one of our Older People’s Cancer Voices steering group members passed away. OPAAL’s Ang Broadbridge shares her thoughts on a recent blog post of Max’s that struck a chord with the steering group:

I met Max Neill in the summer of last year at a Coalition for Collaborative Care event; Max was sitting at the same table as me and he shared with us copies of his one page profile during the break.  I’ve worked with one page profiles with adults with learning disabilities, and our Cancer Older People and Advocacy partners were also exploring them with Helen Sanderson Associates so I was interested to know more.  Max told me about his bowel cancer diagnosis and how his profile helped him express his wishes; it’s always good to get chatting with someone who ‘gets advocacy’ and so I followed him on twitter.

Some time later, when we came to look for representatives for our Older People’s Cancer Voices steering group, my colleague Janet Cullingford from I-CANN suggested Max.  I hadn’t made a connection between his role at Connect4Life being based in the same locality as I-CANN but was really pleased when our paths crossed again and he agreed to join us.

Although he didn’t manage to make a steering group meeting we kept in contact via social media and the telephone, Max signposted me to lots of great resources and kindly said that he’d be happy for us to share aspects of his story from his blog as part of our Older People’s Cancer Voices storytelling.

index

I found that everyone I came into contact with who knew Max spoke very highly of him, and his generosity of spirit, so at our last steering group meeting in January his ears must have been burning because we were talking about his latest blog post which we’re sharing with you today.  This post appeared on Max’s blog at the end of December 2015:

Christmas in the Hospice

I didn’t expect to be waking up on Christmas morning in a hospice.

But my life’s like that now. The results of one scan can throw all my plans up in the air.
And the results of my last scan weren’t the best I could have hoped for.

I’m far from dying yet though. I got offered the place here at St Catherines so that I could get on top of my pain.

I’ve been taking the wrong attitude to my pain. I’ve stoically tried to tough it through during the day, leaving me knackered at night. This approach has meant that I simply haven’t left myself open to the joys that life can offer. Most nights I’ve ended up frantic as the pain bites in: no good for me, and no good for my wife who gets disturbed every time.

So over some time here, with the help of the nurses and medics my meds are being adjusted, and I’m finding out that stuff I didn’t think worked does work, as well as how to space it, how to be less anxious about it.

And being here has also given me a chance to talk to friends and family about the reality of my illness. I think maybe I tend try to protect people from my bad news. This hasn’t done them any favours, and I’ve been told off about it! The word ‘hospice’ on the front door means there can’t be any pretence. I have a pretty aggressive cancer. It’s not behaving like a normal bowel cancer. Even with the very best chemotherapy my chances are maybe one in twenty.

Of course his doesn’t mean I’ve no chance. I know people who’ve survived worse odds. I’m hoping to get onto a clinical trial, and will work with Christie if any become available. The lads play Dungeons and Dragons. They know how hard it is to roll a 20 with a 20 sided dice!

Christmas was lovely here.

It is a privilege to wake up among the dying. It is a privilege to be cared for by dedicated people, including volunteers who have come in over Christmas and the ‘dog end’ days of the year to support the people here. When the news is so packed tight with inhumanity, it is a true privilege to see countless small acts of humanity happening, in the very darkest times of the early morning, in the warmth of the cleaner’s voice as she moves from room to room, in the humour and stories of the nurses and helpers.

As I’m writing, a lovely lady has come in. She takes all the flowers donated to St Catherines’ and turns them into beautiful smaller arrangements that she leaves in every room. Every few days she comes back to refresh or replace them, she has been doing it for years and nothing seems to stop her. Humanity expressed through her artistry and persistence.

Years ago I read a great book by Boykin and Schoenhofner that seems to be a well kept secret. It’s called ‘Nursing as Caring’ and it’s always stuck in my mind far more than the technocratic rather mechanical ways of theorising nursing care.

I think the future study of great care, the understanding of what really makes good person centred support for people will actually be an inquiry into our own humanity and how to use it effectively for people. I’m witnessing that when a caring organisation enables everyone in it to find ways to express their humanity, to listen to people and deliver what is important to them, it becomes a true House of Care, a genuinely nurturing environment very different from some of the toxic institutions we seem to create so easily. It’s too easy to sacrifice our own humanity in the name of  ‘professionalism’ or for countless other persuasive reasons.

The Christmas tree in the chapel here is incredibly beautiful. Children have cut out paper angels, and written messages to hang on the tree for their parents who died here: “I hope heaven is special mummy”.

I managed to spend time out at home over Christmas too, and had great family meals on Christmas Eve and Christmas day, great fun playing Articulate! I think the plan is for me to spend a few more days here, then to get home. I’m going to use that time to do some writing. Isabel Allende said “Write what should not be forgotten”.  I’m hoping to write some very personal and private stuff for my family and build it into some kind of personal cancer journal that includes some of the person centred thinking tools like my life story, my hopes and fears and a few things I’d like to do. I don’t have many big ‘bucket list’ ambitions. A trip to Disneyland would be my idea of a nightmare!

I do intend to go to watch the great poet John Cooper Clarke when he appears in Preston, I saw him a few times 30 years ago. He would be the highlight of  CND demos in Manchester bringing his cutting cynical humour dispensed in economical rhyme as a great counterpoint to the interminable speeches of the assorted politicians! He’s no stranger to death among his friends himself at the moment: “I could go to five funerals a week. But that many vol au vents isn’t good for you”

Time with family. Time with the people special to me. That’s what I’m focussing on right now.

Our thoughts are with Max’s family and friends.