Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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Advocates relish in the words “not possible”

Lizzie Sturm gives us the low down on what’s been happening recently at project partner Advocacy in Barnet:

We seem to be spending so much time recruiting! The last two months have seen us interview for a Volunteer and Training Co-ordinator, a Project Manager as well as Volunteers for the Barnet Macmillan Advocacy Project. I hope that people will get to meet Tasneem Goheer, the new Volunteer and Training Co-ordinator who started at the beginning of January over the next few months. The calibre, passion and dedication of volunteers that join us never fails to humble me.

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As a Macmillan partner, we positively benefit from both the learning of COPA projects sharing their experiences at Board meetings as well as directly receiving the support and training of Macmillan. We had our “induction” last week with the Macmillan Involvement Coordinator Raj Bhattacharjee, informing us of what we can access as well as their expectations.  All staff on the Barnet Macmillan Advocacy Project will be attending their formal new professionals’ induction day in due course. We’ve also been introduced through OPAAL to our mentor organisation Dorset Advocacy, a really brilliant idea.

Despite the changes, Barnet Macmillan Advocacy Project is making a difference and the relief that advocates can offer is palpable. However, so many of the issues that we have dealt with can end up being a race against time. Betty Zulu is the Barnet Macmillan Senior Advocate currently supporting Mr P, who has terminal cancer (final stages) with housing issues. His wish is to transfer the tenancy in his name over to his children as he is very worried about leaving them homeless. The housing department are of course adamant that it is not possible to transfer tenancy to children. Advocates relish in the words “not possible” and Betty has been combing through tenancy and transfer laws to challenge this. Mr P has already noted the difference at the housing department since informing them he has an advocate. Betty has now identified that transfer to children living at home can be allowed so a positive resolution and peace of mind to Mr P is on the horizon. We hope that this will be completed within his lifetime. Betty says “I found it very important to provide support to Mr P as his health is quickly deteriorating. He was becoming very breathless even as we spoke. His prognosis is not very good. I feel very gratified that I am able to provide support for Mr P as he informed me that he had been to so many other organisations but unable to get any help”.

Lizzie Sturm, Advocacy in Barnet


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Specialist cancer advocacy support is invaluable, even for those with family and friends…

In this post Valerie McGregor, advocate at KPAIS (Knowsley Pensioners Advocacy Information Service), tells us why it’s important that every older person affected by cancer has access to advocacy support if they want it, even those with family and friends around them:

I have recently had the pleasure of supporting a lovely lady who I shall refer to as Jane. Jane self referred into our service when she felt that she needed someone to talk to outside of her family.  Although Jane has a very loving and caring family and who are supporting her through her cancer experience, she didn’t want to burden them as they didn’t want to talk about practical matters arising from her diagnosis and prognosis.

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Our first telephone conversation was about practical issues like benefits and how we could support her with form filling and making a claim, as well as information on other services which could offer practical support. I visited Jane at home to do her form and we had a long chat about everything that was important to her and what she wanted. Jane had said how nice it was to discuss matters without burdening her family.

COPA Blog photo Jan 2016

 

Jane was very optimistic about her illness and the options available to her, but unfortunately Jane wasn’t able to have the surgery that was first discussed. As a result she now wants to put her affairs in order and generally wanted to talk about how she felt about what was happening to her, and what support we could offer her with general practicalities.

 

Jane has expressed her sincere thanks for the practical and emotional support we provided and how having a Cancer. Older People and Advocacy advocate has helped her to stay independent and in control, and asked that I stay in touch with her and visit her frequently just to have a chat and a cup of tea.

Valerie McGregor, KPAIS


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Supporting Maria: Neil’s story

In this blog Neil Topping, a volunteer advocate for Oxfordshire Advocacy tells us about his support of Maria (not her real name)

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BACKGROUND

My advocacy partnership with Maria, a nursing home resident began in March of this year after a referral from Social Services. Maria, a Portuguese citizen, had been diagnosed with terminal bone marrow cancer and had a life expectancy of 12 months. Some years ago, she had also been diagnosed with schizophrenia.

THE PARTNERSHIP

The partnership agreement centred upon providing support to Maria in accessing her Portuguese bank account, assisting her in managing her account on line, helping her to understand her care cost liability and reconciling her budget and providing information for her to decide on whether to sell or rent her property.  From the outset, Maria accepted that her illness was terminal and she would not be returning to her flat.

In mid-June, I attended a meeting at the nursing home where Maria decided to sell rather than rent her property and the social worker confirmed that the Council Money Management team could handle the sale. It was also agreed that she would bring a representative of Money Management to the next meeting with Maria. I agreed with her that I would also attend this meeting and that provided that she was satisfied with the arrangements being made, the advocacy partnership would conclude.

Neil Topping

Neil Topping

 

THE OUTCOME

Shortly after I returned from my holiday, I was contacted by the nursing home manager to be advised that Maria had just died. She asked me for any information that I could provide to assist her with the funeral arrangements and in a few days we were able to piece together some details of her life and some idea of her wishes as she hadn’t made a will. I concluded the partnership having satisfied myself that the nursing home would organise the funeral and that Money Management would deal with the estate and financial matters generally.

 

CONCLUSION

The partnership was made easier because Maria understood the severity of her illness and wanted to deal with the implications. This, of course, is not always the case with those who are terminally ill. However, I learnt at an early stage that we had to let Maria control the pace of her decision making process and let her take time to understand her options. I also learnt that afternoon meetings seemed to suit her best. It may have been due to her  schizophrenia, but it took a little time for me to gain her trust. Therefore, throughout the course of our meetings, both the social worker and I asked her if she was ‘happy with the way things were going’ and how we were supporting her.

In future cases, I would check at an early stage whether or not the care/nursing home, has clear information on file regarding the clients wishes following his or her death. With cancer, life expectancy projections are difficult to get right. Those of us supporting Maria were attempting to deal with the issues facing her in a way that was sensitive and recognised her prognosis but, as it turned out, was unrealistic in terms of the time that was left to her.

by Neil Topping – Oxfordshire Advocacy Volunteer Advocate


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Strange how much irony there is in life!

Lizzie Sturm, Director of Advocacy in Barnet, tells us about her new, personal perspective, of the Cancer, Older People and Advocacy Programme.

Advocacy in Barnet (AIB) are really excited to be the newest OPAAL hub member to become a Macmillan partner. Three weeks ago we held interviews to recruit a volunteer coordinator for the Barnet Macmillan Advocacy Project. The Macmillan Involvement Coordinator (North and East London), experienced volunteer and myself comprised the panel, meeting a range of candidates and spending much of the day talking about cancer pathways. I hope that people will get to meet Alex Pinnick, the new Volunteer Coordinator who starts on 16 September over the next few months.

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Strange how much irony there is in life! Within a few hours our conversations about cancer pathways became personally meaningful.  My Mother (in her late 80’s) was diagnosed with lung cancer that evening. We’re now embarking on our own cancer journey with each participant experiencing their own unique impact and place in this.

It’s been a long three weeks with a myriad of emotions experienced and a lot of learning already. At every step of the way, my belief in the value of advocacy support to older people affected by cancer has been absolutely affirmed.

My parents are intelligent, articulate and independent people but they are immensely affected by this scary diagnosis and prognosis as are all the family. The medical team and nursing care have been superb but there are so many, many significant details and ramifications that need to be attended to. I am fortunate to be in a position where I can try to support them. Even as someone “fairly in the know”, there will definitely be times where I will flounder in this.

I can certainly bring in an unexpected and new perspective to the training of our Barnet Macmillan Advocacy Project. As I am sure other projects have encountered, the spectrum of issues that may require advocacy for an older person affected by cancer is enormous and I am delighted that our new Barnet Macmillan Advocacy Project will be able to make a difference.

 

Lizzie Sturm, Advocacy in Barnet


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In conversation with Malcolm

I recently had the privilege of speaking with Malcolm Orgee, a 54 year old in full time employment with a young family. Malcolm is one of the people affected by cancer that our independent advocacy service supports.

After suffering frequent and disabling headaches for six years Malcolm was finally diagnosed with CLL, Chronic Lymphocytic Leukaemia in January 2013. Malcolm remembers the day of his diagnosis vividly, describing to me the weather, cold clear snowy day, the drive to hospital and conversation with his consultant. He was told he had probably had CLL for six years and given a prognosis of a further seven years.

Malcolm described the news as being an ‘absolute bombshell’. His immediate thoughts turned to his family, his partner and two young children. How was he to tell them?

Thankfully they proved to be very supportive, however living with this condition meant he did not want this to dominate family life, he recognised he needed support from outside his family.

Many people are affected in this way, they have a strong urge to protect family members from the worst of their fears and concerns and often need to share these with someone outside the family.

After many tests and visits to Dorset County Hospital he asked his nurse if there was any support available for him. He was told no not really, he didn’t feel the nurse was very effective. Eventually he called Macmillan Cancer Support who gave him the number of the Cancer Older People Advocacy service at Help & Care Bournemouth.

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Six months after his diagnosis Malcolm was introduced to Bob Smith. Bob was to become Malcolm’s advocate. The advocacy service go to great pains to match people needing support with Advocates who themselves have had similar cancer experiences. Bob had previously had Mantle Cell Lymphoma and was able to understand Malcolm’s condition from the word go.

Malcolm was struggling with the bewildering array of information relating to his condition and trying to cope with the emotional effects of his diagnosis whilst grappling with the need to inform his employer of his new situation.

Malcolm works as a Head Gardener on a private estate in Dorset, he loves his work and wants to maintain his position. He is thankful he has supportive colleagues and employers. Nonetheless he has concerns as to what the future might bring for himself and his family.

LMalcolm was placed on a ‘watch and wait’ programme, meaning no immediate treatment was offered. This proved difficult for some members of his family to understand, particularly his elderly mother who constantly asks Malcolm when he is going to be offered treatment.
Malcolm finds it difficult to have to repeatedly explain the ‘watch and wait programme’ to his 81 year old Mum.

For two and a half years Malcolm has lived with quarterly hospital visits, monitoring his condition. For two of these years he has been supported by Bob, an Independent Peer Advocate. Bob has been there for Malcolm whenever he has needed him.

Asked to describe his advocacy support to me Malcolm said “I have been massively supported by Bob, he understands my cancer as his own cancer has many parallels. Bob knows what I am going through and has been there for me every step of the way. He understands all the emotional ups and downs, the complexity of my cancer, the day to day practicalities I live with, the whole scenario”.

He also told me he is constantly amazed by Bob’s dedication, always being there for me, particularly as Bob is a volunteer advocate

Malcolm feels this service is absolutely essential and should be available for all those who need it. He wishes he’d met Bob before he was diagnosed for then he would have had all the support he needed from the outset.

Malcolm recommends this highly personal and confidential service to all, he knows he would not have managed so well without Bob’s support.

I am deeply grateful to Bob Smith and all our wonderfully dedicated volunteers. They freely give not only their time, but bring valuable personal experience of their own to share with and inform their relationship with all those they support.

Bob like his many colleagues has spent a lot of time in training, and being supported by professional paid advocates. He has also contributed to the volunteer team’s experience helping to make our Dorset Advocacy Service one in which we can be very proud.

I’d like to offer my personal thanks to Malcolm for sharing his story, he understands our need to capture his and other’s such stories in our attempts to convince others of the value of our work to those who desperately need advocacy support.

Kath Parson, OPAAL Chief Executive


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In your shoes

Helen from Sefton Pensioners’ Advocacy Centre tells us about a recent event she went to.

I attended an event organised by the local hospital trust in conjunction with Macmillan called ‘In Your Shoes’.  Advertisements had been placed in the local press and online inviting patients, former patients and carers to attend.  Pre-registration had been encouraged as the format of the day was for primary and secondary care staff to listen to each patients experience on a one to one basis and record the positive and negative aspects of their care.  The staff who attended were predominantly not dressed in uniform, had not been involved in the individual’s care and were from a range of disciplines.

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Following the one to one discussion the listeners then read out the positive and negative comments.  There were many positive comments about the individual communication from all members of the multi-disciplinary team.  However there was criticism about the inconsistency within the service between oncology and the general hospital.  Many people had experienced problems with their GP not being kept up-to-date with the treatment and the patients or their carer’s were unsure where to seek the appropriate medical help.  There was a suggestion that there should be an individual who could coordinate all the treatment and be a point of liaison or alternatively that patients could be issued with hand held notes to avoid the need to repeat their medical history.  Another carer felt that a letter from the GP explaining the full situation would have improved their journey through A and E.

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Helen Vernon, Sefton Pensioners’ Advocacy Centre

There was a general agreement that there was a marked difference between the regional cancer hospital and the local hospital.  The older patients felt that they had had a significantly inferior experience on the general wards where staff were more likely to be rushed, have a more negative attitude with regard to prognosis and treatment options and display less empathy.  This became one of the most significant outcomes of the listening event and the organisers intend to take this information back to the hospital board for consideration.

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Those present felt that the disjointed care continued when they left hospital and that there was a lack of awareness of the correct protocols for care by the district nurses.

There were several comments made which were particularly relevant to the advocacy project.

  • Some attendees felt that there was very limited or no information about benefits, local support or other services in the area
  • Alternatively others were given this information but not at an early stage
  • On a number of occasions the diagnosis was given to the patient whilst they were on their own
  • One individual mentioned that they felt that patient’s decisions about treatment should be respected and that they should not frequently be asked if they wanted to change their mind
  • Treatment options on the elderly care ward were limited as it was felt that the staff were dismissing them because they had a cancer diagnosis

A local Macmillan Involvement Officer attended the event to coordinate feedback and she spoke to the larger group about our Cancer, Older People and Advocacy project.  She was able to link a number of the points highlighted back to our cancer advocacy service which was helpful and positive.

Helen Vernon, Advocate, Sefton Pensioners’ Advocacy Centre


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Margaret’s story

Recently we met Margaret Corbett during one of our Cancer, Older People and Advocacy workshops at Macmillan’s Cancer Voices Conference. This is Margaret’s story of being an older person diagnosed with cancer:

I am over 80 and a long-retired medic. Early in January 2012 my breast cancer diagnosis was made promptly, surgery, tamoxifen and a course of radiotherapy was recommended as treatment. At the end of radiotherapy I was told to expect a follow-up appointment in Oncology. Meanwhile I was invited to a specialist nurse-led group meeting. We were given a carefully prepared and designed leaflet. Topics covered included exercise, diet, lose some weight if you can, body image, sex life, risk of lymphoedema and what to do. All very good advice but I seem not to have taken it in for months, though I was living healthily and getting considerable benefit from regular exercise and significant loss of weight.

 

The treatment seemed not nearly as much trouble as I expected, but I felt mysteriously mentally distressed, a finding that I had not anticipated and found very worrying. At my first oncology follow-up appointment I was ashamed and denied any psychological problem. I had not then discovered how common it is to have such feelings. I was given a note and asked to make an appointment for a year later and I felt somewhat reassured to have the date and time firmly assigned.

 

Much of my problem has been the idea that my treatment had been ‘easy’ because of my age. I felt left out and under treated. I now believe that this was a completely wrong concept. At my first follow-up appointment I was very concerned about my prognosis. I asked why I had not been offered any form of chemotherapy. My oncologist left the room and returned with a sheet of paper showing the result of a computerized predictive tool. He said “Well, it would only make 1% of difference and it’s not safe you know”. If only he had said (without getting any printout) “We have a guiding rule here, we run this predictive tool and if chemotherapy would make less than 3% of difference we do not offer it, between 3 and 5% difference we discuss it, and over 5% we advise a course of chemotherapy”. I hope that I would have been able to accept that and I believe it would have saved me a great many bad feelings.

 

At the end of the summer I joined a Macmillan-backed Womens’ Support Group and from them was able to access a local HOPE (How to Overcome Problems Effectively) course consisting of seven sessions similar to group therapy with exercises in various calming techniques, and also, concurrently as it turned out, some sessions of counselling. The well run HOPE course worked really well for me. I was able to understand that other people had similar reactions so that I could stop feeling so psychologically abnormal. We had shared experiences and we helped each other.

 

My counselling sessions were also very helpful as I was able to identify that I have a problem with anger. It has been most helpful to know this though I haven’t done anything further about it since.

 

I would have liked more information. It would have been very acceptable on paper but, because of my undoubted denial and psychological stress, I would have liked to be offered the information more than once – perhaps even at every follow-up appointment until I could say that I didn’t need it. I now believe that treatment is offered to older patients on a basis of performance status rather than on age. I have now had the switch from tamoxifen to exemestane that was so briefly mentioned right at the beginning and I am delighted about this. There is still no written forward plan but I am less concerned than before as I do now feel carefully managed and well looked after.

 

An offer of advocacy support as part of the follow-up at the end of radiotherapy would have been very timely, though in view of how mentally strange I felt at the time I might not have accepted it. I did not ‘feel myself’ and I can’t judge how someone else would react.

 

The oncology staff do know that the end of treatment is a difficult time for many people – ‘the Lifeboat Syndrome’. Advocacy might be just the thing, possibly offered fairly firmly.

Margaret Corbett