Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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Advocacy support is unfortunately still relatively unknown..

Today Kathleen Gillett of Dorset Macmillan Advocacy argues that advocacy support has a role to play in breaking the negative cycle of cancer care:

The Patients Association has chaired a working group on ‘Transforming the cycle of cancer care’.

The working group argues that ‘currently there is a negative cycle in cancer care, where a short-term approach leads to rising costs in cancer, makes fewer resources available, provides inadequate patient support which re-enforces the need for a short-term ‘just managing’ approach.’  It proposes ways to break the negative cycle.

To address this challenge, The Patients Association and Bristol-Myers Squibb are working alongside experts and patients from across the cancer space to identify new models of service delivery, showcase best practice, and provide real improvements in patient care.

The report discussion includes sections and recommendations on:
Identifying, incentivising and implementing best practice
Developing effective prevention strategies
Implementing best practice in the early diagnosis of cancer
Delivering timely access to treatment
Engaging patients in delivering innovative care pathways

To my mind the report blurs the issue of patient engagement and involvement in service improvement and that of individual patients who are ‘engaged’ and active in their own healthcare journey. Both are important and worthwhile while distinct from each other.

I think that the argument for ‘engaging patients in delivering innovative care pathways’ reads like a explanation of the benefits of independent advocacy support:

‘Educating patients with cancer about self-management and empowering them to play an active role in the decision-making process was considered to likely result in an improvement of patients’ knowledge, understanding of their condition, adherence to treatment and engagement in their healthcare. Whilst not all patients will want to play an active role in their treatment and care, it is important to provide patients with the opportunity and the choice to make their preferences clear and also tell us what a “good” treatment outcome looks like for them.

‘The Working Group described these users as “activated patients” who can lead the charge for the adoption of best practice care. According to Working Group attendees, the evidence suggests that “activated” and informed patients use an average of 20% fewer resources than less informed counterparts.’

Advocacy support is unfortunately still relatively unknown and it is not uncommon to read policy reports in both health and social care spheres that appear to describe it and recommend it without ever using the term. I believe that independent advocacy support and particularly that provided by peer volunteer advocates has a role to play in breaking the negative cycle of cancer care. It can certainly be preventative and facilitate timely access to treatment in addition to empowering patients. I would like to see it recognised as an integral part of the cancer care pathway, recognised as best practice and implemented nationally.

Kathleen Gillett, Coordinator Dorset Macmillan Advocacy


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Over time I was able to build a trusting and secure relationship with Valerie

Aneesah, advocate at our delivery partner ICANN, tells us about Valerie (not her real name) and her issues around divulging that she is HIV:

I received a referral for Valerie who had used us as a service in our previous advocacy work. She was diagnosed with breast cancer but was in the very early stages of recovery. Therefore, she was extremely emotional when we initially met. Because I already had an established relationship in our previous advocacy service Valerie felt comfortable to talk to me openly about her feelings and concerns.

Valerie’s ethnicity and cultural background played an important role in how she felt and how she mentally perceived how she should be handling her medical problems. She’s from African descent and although she was living with her sister she was of the strong opinion that she needed to be emotionally strong and expressing her true feelings and worries was a great sign of weakness. Yet equally it was clear to me that these vulnerabilities and insecurities were taking a very big toll on her and was having a far deeper rooted impact on her mental health.

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These feelings of guilt and shame were exasperated as she had also been diagnosed as HIV positive some years ago. Due to Valerie’s concerns she felt that this was another medical condition that needed to be keep hidden. What came through in our conversations was that although fortunately she had a very good and trusting relationship with her consultant the diagnosis of breast cancer meant that she had to constantly disclose the fact that she was HIV positive to other medical health professionals, particularly during the period she was undergoing chemotherapy as the requirement was to have regular blood count checks. Because she was highly conscious and anxious about her diagnosis of HIV coming to light, she found the whole treatment procedure very tense and traumatic.

By the time she established contact with me she had many unexplored and suppressed worries. Her main reason for contact was an approaching benefits assessment. Valerie felt she was forced into a situation where she would have no choice but to discuss medical issues she was highly uncomfortable with.

In our meetings which followed over a couple of weeks I was able to talk and reassure her that she should not feel shame or guilt towards her condition. As time went on we met regularly and Valerie was able to make the vital step of being able to talk about her condition without supressing her true feelings. I was able to reassure her that for the purpose of the benefit assessment it was vital to disclose both of her medical conditions in depth as her eligibility would depend on this.

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Aneesah

Over time I was able to build a trusting and secure relationship with Valerie and this really helped me to advocate on her behalf. Consequently when we were in the assessment she was able to depend on me to talk on her behalf on occasions when she found things difficult to explain to the assessor or when she became uncomfortable.

As a result, Valerie was successful in receiving the benefit and the experience allowed her to recognise that professionals in general work using the ethic and principles of being impartial and non-judgmental. The experience clearly demonstrated to her that although she felt that by disclosing her medical conditions she would be judged and perceived in a negative and possibly prejudiced way, this in reality was clearly not the case.

As a result of this experience and advocacy support we were then able to arrange specialist focused counselling services as a more long term plan to deal with her anxieties.

This particular experience demonstrated to me and to Valerie that by working on her emotional insecurities and coming to terms with her health condition it was going to enable her to consciously make the effort to attend future appointments in relation to regular health checks at the hospital. Ultimately advocacy support empowered her to be in control of her health, which hopefully now will contribute to improving her quality of life.


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“Advocacy kept me going”

Today we hear from Helen Vernon, advocate at programme partner Sefton Pensioners’ Advocacy Centre about Peter, one of the older people affected by cancer she has supported:

Peter referred himself to the Cancer Older People and Advocacy project after a diagnosis of cancer in June 2015. He had recently been told he was palliative.  He had spent 16 months in hospital with a collapsed lung.  Peter had moved in 2014 but regretted the decision due to some issues with the housing association. 

Peter had discovered that there was an electrical cupboard/water tank next to his flat.  His bedroom wall was on the other side of this cupboard and he found his sleep was severely disturbed.  We looked into the option of rehousing but Peter felt that since his diagnosis was terminal he didn’t want to spend the time he had left on a waiting list or moving house. Instead we asked that remedial work be carried out to alleviate the problem.

SPAC

I negotiated with the housing association who had put in a request for the job to be completed, but it had been delayed because a surveyor hadn’t been to the flat.  The housing association actioned the job immediately.  I then continued to liaise with the housing association to make sure the job took place and that Peter was satisfied.  

In addition to this I contacted the Department of Work and Pensions to ensure that Attendance Allowance had been started and I explained to him when the payments would take place.

Peter’s family all live abroad and he felt strongly that they should be allowed to live their lives without worrying about him.  He spoke to me at length about his life and his feelings about the cancer. 

When the case was closed I asked Peter what he had thought about the advocacy process.   He said “(Advocacy) gave me a lot of hope that things would improve and they did improve, it (advocacy) kept me going”.

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Helen Vernon

I recently contacted Peter again and he has asked me to revisit him as there are now some issues around his hospital care.  He would like me to write to the hospital on his behalf and to attend appointments with him.  A new case will bring new challenges as his health is declining, but with advocacy support Peter’s wishes will be represented and his voice heard.

Helen Vernon, advocate, Sefton Pensioners’ Advocacy Centre


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It’s a lottery, even in the same postcode!

Today, with kind permission, we reproduce a post written by Chris Lewis a good friend of our Cancer, Older People and Advocacy work and first published on his own blog recently:

 

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The work that I do in cancer support has changed dramatically over the years, and I have had to adjust with the increase of demand on my time. My speaking engagements and charity take a bulk of my time now, with writing filling any gaps. But one thing I was determined to continue with is my monthly prostate group facilitation, which I have been doing now for 8 years. This is done at my local cancer centre and we have a group of approximately 30, with new members every month. We have professionals from the local community as guest speakers and everyone shares their experiences to try and improve the offer for patients coming into the system now.Our members come from a very local area and in general visit the same few GPs and mainly three hospitals for their treatment.

But what continually shocks me is the mixed messages being brought back to the group. There is a huge amount of experience amongst our members which is why the group is busy. Most have learned to be proactive with their own care because they have to be! post code lottery 3 The guys are a great cross section of prostate treatment with some starting, and others dealing with the side effects of their treatment. This particular cancer has many different options of treatment with different outcomes of course. All have different side effects, and for most people, making a choice is one of the most difficult things they will have to do.

Of course, everyone is affected differently, even when two people have the same disease and treatment which we all know. Treatment is changing rapidly now and even in my time of working with the group, surgery is now being done by robotics, and radiotherapy has become much better targeted to leave less peripheral nerve damage. This is progress of course, along with the more tolerated drugs etc, but why am I not shouting from the roof tops? Simply because our communication is still as poor as ever. With this particular cancer, the treatment decisions can be complex, but it is after treatment where the complications can really begin. Some of the basics of life for men, being embarrassingly difficult. Unable to control accurately when you need to go to the toilet, and wearing nappies, in case of accidents. Erectile dysfunction being also very common for many, after treatment. Having to take hormone therapy for several years, changing your physical appearance, getting regular hot sweats and growing breasts. You can’t begin to imagine those sort of changes can you?

However there are many things around now that can improve life after prostate cancer, but it certainly is a lottery whether you are told about them or not! Many of them are available on the N.H.S, but it seems very few are actually informed what is available. A quick example would be the pads that men wear. People spend a lot in supermarkets buying their own but apparently there is service that delivers them free of charge. Some people know about it and others don’t. The same applies for problem with erectile dysfunction. Tablets, machines, pumps and under the skin valves are all available, but so many people are just not aware much of this exists. It is so strange listening to the group sharing their own experiences. Many looking on in amazement as one mentions a service that nobody else was aware of. Why is this still happening in this day and age?

My initial thought was cost, as that is always one of the first things mentioned, but maybe that is the cynic in me?Post code lottery 1 How can it be that people living in the same area attending few hospitals get very contrasting information? Not being told some of the key elements of what might actually improve their physical and emotional wellbeing. This really shows why it is important for patients to talk to each other and the value of support groups whether online or physical. I have always been proactive with my own treatment and encourage others to be the same. But let’s be honest at the time you are feeling most vulnerable it can be difficult to be ‘pushy.’

We are doing some wonderful things now for people affected by prostate cancer, but what I have learned is that like with most other cancers, it’s the psychological and emotional issues that follow, is where the biggest problems are.Why oh why is it still so ‘hit and miss’ that people get the treatment they require? Whether you have a particular urological nurse or not? If you see a certain Consultant or you don’t?

Communication is still the major obstacle to helping these people. Despite the Internet, and information from many different charities and the health service, it is just not being delivered in the right way. Leaving people to their own devices after they have had traumatic treatment will not help them with their quality of life. Surely after they have been treated, they deserve the best opportunity of returning to as normal a life as can be achieved? It is no longer good enough to think the job has been completed once you leave the hospital. The after effects of many of these treatments can continue for years after, and sometimes for life. We must do more to ensure that each case is looked at individually, how that person lived their life before and what ambitions they may have for after.

In my opinion we must make every effort to improve the quality of life after treatment for people affected by cancer. Not having the services available is one thing but for them to exist and people who need them not to know about them is a disgrace. My experience has shown me that there are still too many ‘cooks’ without real effective collaboration. It can no longer be a matter of luck whether we find what we need!!

This video will help explain some of the issues that people can face.

As always I have share my thoughts and experiences above, and please feel free to share your below. It’s your help that gives me the information I need to ensure positive change can happen.

Chris Lewis: Twitter @christheeagle1 


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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.’

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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)


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there must surely be a place for advocacy…

In this post Helen Vernon, advocate at Sefton Pensioners Advocacy Centre (SPAC), talks about collaboration, compassion, choice and advocacy:

In February I attended an excellent conference called Palliative End of Life Care: Collaboration, Compassion, Choice.  The event was attended by a wide range of interested parties including commissioners, consultants, GP’s, nurses and members of the voluntary sector.

One interesting thing that almost every speaker opted to do was to relate their speech to their own personal experience of losing a family member.  This had been the motivation for each of them to follow their career path, either because the experience had been so poor or because they wanted to replicate a positive experience for others.

There were several key pieces of information that came out of the day and I have attempted to summarise some of these below.

The keynote speaker was Jacquie White who is the Deputy Director for Long Term Conditions in NHS England with responsibility for improving the quality of life and experience of end of life care for people with Long Term Conditions and their carers.   As part of her presentation she showed this slide about the six ambitions she would like health and care professionals to sign up to to achieve improvements in care.  There are obvious links between these ambitions and advocacy.

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Jacquie also spoke about their plans to develop an “orientation” process for people who have been diagnosed with a long term condition and she described it as a ‘how to’ for living with that condition.  If this became the norm there must surely be a place for advocacy within this programme.

Alison Colclough from St Luke’s Hospice in Chester spoke about their homelessness project and whether people who are street homeless get choice at the end of their life.  This also resonated strongly with our advocacy work and it made me consider whether we have explored this sufficiently when we are promoting our service. 

The theme of collaboration ran strongly throughout the day and there was a lot of advice about how this could be achieved. There were stories of success and advice about approaches to improving inter agency working.  Annamarie Challinor, Head of Service Development (Macmillan) for The End of Life Project shared this image with us, which we could use as a visual reminder of how broadly we are promoting the COPA project.

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Helen Vernon, Advocate, Sefton Pensioners Advocacy Centre (SPAC)

 

 

 


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Aneesah’s tale

On World Cancer Day Aneesah, a professional advocate from ICANN (Independent Community Advocacy Network North), gives us her take on delivering older people’s cancer advocacy:

My experience as working as an advocate on the Cancer, Older People and Advocacy project has varied vastly. Through my work I have found that one of the greatest obstacles both with professionals working in the cancer field and the clients themselves, was initially actually understanding what “advocacy” is. Although in general terms most clients and professionals alike understand that an advocate can effectively aid in putting across opinions, in many other respects I found that lines can be frequently blurred.

The ICANN team with Aneesah on the left

It can sometimes be unclear as to what an advocate can and cannot do. An example of this occurred when I was attending an appointment with a client and they were given various treatment options, which they appeared to be confused about. Once I relayed the information to the client put forward from the consultant, the client then felt that it was I as the advocate that needed to make the best decision on her behalf! I had to encourage and empower her, to explore the options by using me as a sounding board, and then to talk through together what she wanted to do.

These situations can as an advocate be challenging but upon reflection I also now acknowledge that it is important as an advocate to be able to voice concerns to medical professionals. With the same client at a subsequent appointment, when it was obvious to me that she was not taking it what was being said, I asked if we could take a break and this gave me the opportunity to fully discuss in depth the pro and cons of the various treatments that she was being offered.

This ensured that the client was able to make a clearer conscious choice and in turn made them feel more at ease as they became more fully aware of what to expect. It also meant that at future appointments we were able to prepare in advance, questions she wanted to ask and things we needed to discuss, which in turn gave her more confidence about being in control of her cancer journey.

Similarly as an advocate I found that on some occasions health professionals viewed my presence when attending with clients with some suspicion. This can sometimes be intimidating for the professionals involved as I have been under the impression that maybe they felt that I was there to act as an independent witness to ascertain any faults or failure of medical procedures on their part. However, once they become familiar with me and how advocacy can facilitate the client in a positive way they too began to see the benefits of having an advocacy service for their patients . The most prominent example being that many of the medical professionals involved in cancer treatment do not physically have the time or capacity to thoroughly go through the finer details with all their patients. With advocacy support they then have returning patients who are more confident and comfortable, and less likely to miss medical appointments, as they are more aware of what tests or procedures they are attending for, what future plans are, and what to expect from their patient experience.

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Many clients are understandably confused or feel disorientated particularly when it has not been long since they have been diagnosed. They are also given a considerable amount of information which initially may be difficult to not only understand but also to accept. Being an advocate has given me the opportunity to facilitate people in focusing what they would actually like to do regarding treatment or finding out about other services that would improve their quality of life.

As an advocate I have realised that it is often easy to concentrate only on the client who has been diagnosed with cancer. I have realised that cancer can have an equally profound and devastating effect not just on the patient but the family and friends around them also, and have seen first-hand the value of support to carers

More recently I have had a client that has been diagnosed with cancer three times in the last ten years. Although she herself was going through emotional turmoil it was equally difficult for her partner to come to terms with a situation that had been ongoing for such a long length of time. In this situation advocacy was required by both. They each needed someone to listen to them as they went through the same journey encountering different emotions from two perspectives.

I would consider that my role as an advocate has been beneficial, particularly to those who are vulnerable and most isolated. I have also become aware though that even those clients who are fortunate to have an extended network of family and friends can still feel alone in their personal journey. I have come across situations where clients have felt more at ease in voicing their anxieties to me as I am someone who is independent and non- judgemental. Often people feel that there are things they cannot discuss with those closest to them due to fear, awkwardness, embarrassment, and sometimes pressure to feel positive and optimistic when they are actually not feeling these things. One of the benefits of advocacy to the client is to offload and explore these concerns.

Aneesah Bana, Advocate, ICANN