Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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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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Face to face support has the most impact

What stops health professionals signposting to services like our peer advocacy support service? In today’s post Kathleen Gillett of Dorset Macmillan Advocacy tells us what some Macmillan Health Professionals feel is the reason:

There are over 9000 Macmillan professionals working across the UK in a wide range of roles. Those of us in cancer advocacy services that are funded directly by Macmillan Cancer Support are labelled Macmillan professionals. Once a year we are invited by Macmillan to a national conference and I was fortunate to attend for the first time last autumn.

Lynda Thomas, CEO of Macmillan welcomed the 300 participants and began her keynote speech with some statistics.  In 2015 Macmillan reached 5.8M people in total and Macmillan professionals supported 600,000 people.

Lynda said that in her view face to face support is the most impactful. I see the impact that our peer volunteers have every day by actually being there in person for their advocacy partner and I couldn’t agree more.  She went on to say that her aim is to focus on areas of most severe need and on what makes the biggest impact.  She believes that the best services and support need to be local and need to understand the needs of the local population.

The majority of Macmillan professionals are in clinical roles and this was reflected in the attendance at the conference. There were two representatives of the Cancer Older People and Advocacy projects, me and Kath Curley from Staffordshire and Wolverhampton Cancer Advocacy at the Beth Johnson Foundation as well as a number of Macmillan Welfare Benefits Advisors from across the country and the team of Support Workers at Brain Tumour Support who are funded by Macmillan.

2 Kaths for the price of one - Kath Curley & Kathleen Gillett

Kath Curley, Staffs and Wolverhampton Cancer Advocacy and Kathleen Gillett, Dorset Macmillan Advocacy

Every year conference delegates are asked a number of questions and respond with live voting gadgets. The first 2016 question was ‘What is the biggest barrier to Macmillan professionals in signposting people affected by cancer to sources of support in the voluntary and community sector?’  This question appeared to be aimed at the Health professionals. The top three answers from options given were: 33% Lack of knowledge of what is available; 25% Holistic Needs Assessment (HNA) is not routinely done; and 25% Health leaders and managers don’t see it as the responsibility of Health professionals.

The question which led on from this “What would make the biggest difference to help Macmillan professionals to signpost to support?” saw 56% respond Access to clear information on what is available, how and where to signpost to;  and 24% respond HNA.

I took away from this that Macmillan professionals in clinical roles want to signpost to support outside of Health but don’t yet feel that they have an easy way of finding out what support is out there and what the most appropriate time to refer would be.  Those of us providing services such as peer volunteer advocacy have not always found it easy to make those working in Health aware of our service and to find opportunities to educate them to understand the benefits of advocacy and its relevance at all stages in the cancer journey.  At the next conference in autumn 2017 Macmillan Cancer Support will report back to delegates on the steps it has taken to improve access to this knowledge.

Kathleen Gillett, Macmillan Project Coordinator, Dorset Macmillan Advocacy


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A very Happy New Year

Happy New Year to all of our readers and contributors.

We have great news to start off the New Year. As you may know we were shortlisted in November in the UK Blog Awards for this blog. Our entry is in the best Health and Social Care Blog category. OPAAL had to put out a big call to our members, stakeholders and friends encouraging them to help us through the initial public voting phase. We were up against some much larger organisations with a bigger social reach than us.

We must have secured a very strong number of votes because on Monday we received the news that we have been announced as a finalist, which means we eagerly await the judge’s vote later this Spring and in the meantime we have a new ‘finalist’ badge to display on our blog! We would also like to thank all of you who voted for us.

facebook-1-2It’s brilliant to have this recognition for our blog. We work tirelessly to secure new content to keep it fresh and our delivery partner projects work hard to make sure we have something new, interesting and timely to share.

This news will encourage us to keep writing; it’s great to be starting the new year on such a positive note!

We’re so happy to be showing the world the impact of independent peer advocacy and that #advocacyworks.

Marie McWilliams, OPAAL


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I pondered how much I would have loved to have had some ‘out’ LGBT staff around me, so that I didn’t feel so isolated and had more confidence to be me.

In today’s post Roger Newman explains his feelings around being a gay man with cancer:

Its over 40 years since I took my first major steps in ‘coming out’ as a gay man. Not for me the carefully staged video explaining to adoring fans that I was dating another man and nor for me the consequent letters of congratulation arising from it. No this was and, still lingers in the memory as, a major event accompanied by not a little trauma. In the space of just a few days I stood before distraught parents, an incredulous spouse,  and unbelieving fellow workers, telling all of them something which obviously seemed to them, at the time, as being not far from the announcement of the imminent end of the world. For me I feared that it might indeed mean the end of my world.

The years have considerably numbed that feeling. Well, at least that’s what I thought had happened until just a few months ago when I was diagnosed with breast cancer and faced two bouts of surgery, with stays in hospital.  You probably don’t see any link so far in the story so let me explain.

My ‘coming out’, like that of most LGBT people of my age was always going to be a selective process and was accompanied by the building of defensive walls around my life, just in case I might find myself in situations where being known as being gay might be a threat to my security. I had never felt that I needed to tell everyone but, once in a settled situation, I didn’t need to deny it either. All those who mattered to me knew the facts and when I felt safe enough, in a professional and less personal situation, it didn’t require much courage to admit it there as well.

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The days following my breast cancer diagnosis have signalled a change in those feelings. I have been so fortunate to have a loving husband with me when all this kicked off but I hadn’t expected that now would begin a Stage Two of my coming out. I had never envisaged that there might even be something called ‘Stage One’.

To begin with I felt it necessary now to say to those dealing with my cancer care that nothing short of proactive acceptance of me and my sexuality, and of our relationship, was what we both wanted and I was clear what that acceptance might entail. It mattered to me that when the lovely cancer nurse phoned she began by asking if it was Nigel or Roger she was speaking to, an approach so much more acceptable than simply asking ‘Can I speak to Mr. Newman, please’. For us that was a sign of what we would call proactive acceptance.

When after my mastectomy operation, and told that I was being moved into another ward, when I asked that my partner be informed, and told that yes, SHE would be told, I felt I had to make it clear that such mistakes should never need to happen, since it should be basic in service providers training that a person’s sexual orientation should not be presumed. Having a proactive approach to inclusion  means  that if 5% of the adult population is LGBT, and if in one day you are dealing with, perhaps 20 clients, then one must assume that at least 1 of them might be LGB or T.  In that hospital ward I was that 1 in 20; they got it wrong and it mattered to me.

Nigel and Roger

Nigel and Roger

More significantly, however, my stays in hospital have had a totally unexpected effect. To be honest, I have gone back into the closet, when there!!! I had thought that those days were long gone, but now here they were, alive, kicking and frightening. I was appalled to find myself feeling that I was in a threatening environment. The conversations, times of visiting, and the general atmosphere, were so different from the gay culture, which I now realise had come to dominate the way I lived. So now I felt completely at sea and needing to be careful about what I said. I was anxious about the personal details I surrendered. I hardly dared mention a partner and I even found myself begging him not to kiss me when he visited me. His response, as expected, was ‘bollocks to ‘em, I love you’, but on his visits I could see the eyes taking it all in; sorting and codifying the resulting information. I found myself telling him that it was OK for him because he could take our lifestyle back home with him whereas I was left to deal with the consequences. I was profoundly disturbed by having these feelings and I felt guilty about them, but the fact was that there I felt and believed myself to be different. I pondered how much I would have loved to have had some ‘out’ LGBT staff around me, so that I didn’t feel so isolated and had more confidence to be me. Just someone with a ‘Me Too’ badge on them, would have helped.

So that’s where we are at in this stage of my cancer journey;  always hoping that proactive responses to us and our orientation will enable creative engagement to take place; knowing that there will now be a more regular need to ‘come out’ to others as the chain of service provision progresses and with the additional  fear that someone will respond in a less than satisfactory manner; and being so very grateful that, unlike the majority of LGBT people of my age group, I am not alone in facing the challenges of my condition. More of that last point perhaps in another blog.

You can follow Roger on Twitter @RogerNewman6 and read his personal blog here


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The diagnosis of cancer was incredibly difficult for him to come to terms with

This year’s Volunteers Week is 1st to 12th June and we’re recalling stories from some of our amazing peer volunteers. In today’s story dating from 2014 we hear from Bob, a volunteer peer advocate with Dorset Macmillan Advocacy. Bob supported Brian who was diagnosed with Myeloma:

Brian is very intelligent, friendly and outgoing with a great sense of humour. He can no longer drive and is in constant pain of varying levels and physically weak. He can only walk a matter of yards with the aid of a walking stick or frame.

He lives alone in a small communal block of flats and when I first met him had extremely low self-esteem. Although previously very well-travelled and active he felt that he had few future prospects of a happy life. He found his condition very hard to accept and suffered bouts of depression and often became upset when speaking about his situation.

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The diagnosis of cancer was incredibly difficult for him to come to terms with. Even though in remission when I met him, it was still hard to bear. He still has a few good friends but is no longer independent so cannot socialise as much as he would like. He spends most of his time in his flat watching TV.

Brian’s cancer is now inactive and in remission for 2 years. He has regular appointments with his consultant and GP, both of whom he has a great deal of respect for. He speaks very highly of his current medical professionals. A variety of pain relief drugs have been tried and the latest drugs give relief for 12 hours each day as a maximum dose.

He sometimes becomes confused and forgetful. He has sometimes taken the wrong drugs or has forgotten to take them leading to potentially very serious problems. These have included passing out and hallucinations. I was present at one of these events. I’ve spoken to his nurses, doctors and consultants for his safety when he has taken incorrect medication.

Brian always speaks openly and honestly to me and we have a very good relationship. He knows that I understand him, will help him where ever I can and that I will never impose my views on him. We explore options to overcome problems or achieve things he wants to do. He loves to have a laugh and a joke too and not always to be reminded of the negative side of his situation.

I’ve arranged a bus pass, trials of motorised scooters, membership of the Myeloma Support Group and taken him to a meeting to introduce him. Whatever information Brian needs I source and provide it. Brian is able to speak up for himself. He did have an issue regarding his pain relief when in hospital. He decided not to take this further although I explained what the process would be to make a formal complaint.

Photo of Bob Smith Dorset Volunteer

Bob

Brian’s image of himself is now far more positive. He smiles more and we laugh and joke more than he used to. He has started to socialise more and is keener to “improve his lot” and not just accept his current situation. We have made a “bucket list” for 2014. I will help him achieve the things he wants to on it and help him make a list for 2015 too.

Brian is much happier to use aids such as motor scooters and walking aids than he used to be. He used to say that “only old people use those” (I have convinced him otherwise). Brian says he looks forward to our visits and really values them. He didn’t regularly contact his friends but now has an item on his bucket list to do this fortnightly. Several items on his bucket list show a massive improvement in his outlook. He will question his pain relief regimen himself now to gain improvements and changes.

When I met him at first he said “I am no longer any use to anyone. I will never have another relationship with a woman.” Now he says he looks forward to me visiting and having talks with me and he feels more positive about himself and he’s happy with his “2014 bucket list”.

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Bob’s view and Brian’s story can be found in full in our publication Every Step of the Way which can be accessed here

 

 

Marie McWilliams, OPAAL


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I have gained a lot from her and she has made me stronger just by listening to her

In today’s Volunteers Week story we hear from Audrey one of our volunteer peer advocates who supported Eleanor who had been diagnosed with terminal lung cancer:

Eleanor is a very strong person, she is coping with her cancer as well as keeping her family happy. I really do admire her strength. She has a strong family around her. Although she is sad her two sons will not be around she does have contact with them. She just wanted to sort her house out; she wanted to decorate and renew as she is leaving her house to her daughter. This she was able to do with the extra benefits she was entitled to.

She is suffering with lung cancer and it’s terminal. Her treatment this time around is harsh, she is losing more time to the treatment than she is to the cancer. She has decided she is not having any more treatment unless it will give her more time. I have visited her at home and will continue to do so.

Audrey

Audrey

She was referred to our service through a relative of mine who knew we did something with cancer advocacy. She was worried about how she was going to manage on the money she had as she had lots of things she wanted to do before the cancer stopped her.

When I first met her I realised we knew each other by sight, but not by name. She was okay with this and so was I. We talked about times gone by when we were both younger and got to know each other quite well. She always asks how I am when I go and visit. She never sits and talks about herself unless I bring up the subject by asking what she has been up to; hospital visits or appointments she is waiting for.

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I have gained a lot from her and she has made me stronger just by listening to her. She never feels sorry for herself even when the treatment has her down. She still manages a smile. She has had her money sorted and has done her house the way she wanted. She has had a couple of holidays which is what she wanted. She is sad at the minute, because of the treatment she has lost days. She could have been doing so much if she did not feel so tired. She is pain free but struggles to breathe.

I still see Eleanor regularly to give my support to her through her good and bad days. I am there when she needs me to help her.

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You can read Elinor’s story in full along with Audrey’s view in our publication Every Step of the Way which can be accessed here

 

Marie McWilliams, OPAAL


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It’s Carers Week

Whilst it’s still Volunteers Week it’s also Carers Week from 6th to 12th June. Kath Curley of programme partner Beth Johnson Foundation looks at at the statistics around the service the Staffordshire and Wolverhampton Cancer Advocacy and Support Project provides.

Since the start of the Project there have been 432 referrals into the advocacy and support service,  with 95 (22%)  being for carers. Of these 29 (30.5%) are male and 66 ( 69.5%) female – a ratio of   more than 2:1 of female to male. Currently there are 11 open cases for carers across Staffordshire and Wolverhampton.   Looking at the 84 closed cases throws up some interesting statistics.

The majority of referrals were “self-referrals”  – 36% followed by referrals from the Macmillan Cancer Information and Support Centres in Stoke, Stafford, Burton and Wolverhampton which were 22 around 23%. Referrals to the Advocacy Service for clients with cancer resulted in 8 referrals for their carers and friends and family of cancer patients led to a further 7 referrals. Macmillan nationally (helpline) have only referred 1 carer to the Project.

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84 cases have been closed over the period of the Project of which 39 were closed as the “course of action was completed” which is 46%.  Unfortunately only 6 were closed because they felt empowered to act for themselves, make decisions or had regained control. One carer was too ill and there was no engagement with 9. Other reasons were moving out of area, no longer needing the service, bereavement and refusing the service.

Of the 95 cases, the majority live in North Staffordshire (including Stoke on Trent), this is not surprising as the Project was started as a pilot in this area back in 2012. Wolverhampton has only had 5 referrals but this was the last area to come on board as part of the Project in February 2015.

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The project is for older people (50+) affected by cancer so if you are a carer of someone with a cancer diagnosis, live in Staffordshire or Wolverhampton and are struggling then please get in touch with us. A phone call to Beth Johnson Foundation on 01782 844036 is all you need to do.

Remember:

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Kath Curley, Project Manager