Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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As Volunteers Week draws to a close…

Our Cancer, Older People and Advocacy programme would never have achieved what it has without our amazing volunteers. They’ve supported us as peer volunteer advocates as well as local and national cancer champions.

Those who have been directly affected by cancer themselves have determined to give something back, to support others going thorough the same trauma and to help ensure older people don’t face their cancer journey alone.

Some of their stories are told in Time: our gift to you, our most recent publication. Today, as Volunteers’ Week draws to a close for another year, we’d like to share Claire’s story with you:

I was diagnosed with breast cancer in 2013 and despite lots of treatment – chemotherapy, mastectomy, radiotherapy, reconstructive surgery and targeted drug therapies – I learnt in 2015 that my cancer had spread and I am now living with secondary breast cancer.

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

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

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

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

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

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

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

Our final thought this Volunteers’ Week is the adage: “Volunteers are not paid, not because they are worthless but because they are priceless.” So thank you to volunteers everywhere.

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“I wanted to be more than “Nanny” in my retirement”

In today’s post Sherry, a peer volunteer advocate with Sandwell Advocacy’s Sandwell Cancer Older People Advocacy (SCOPA) project, tells us her volunteering story:

My name is Sherry and I have been a volunteer at Sandwell Advocacy since March 2015.  I was a staff nurse for over 45 years and when I retired in 2014 I was adamant I was going to do something productive with my time.  I have grandchildren who I adore but having had a very demanding career I wanted to be more than “Nanny” in my retirement.  I trained in Chester then worked in plastic surgery, something I thoroughly enjoyed. My final working years were spent as an ophthalmic nurse in Sandwell. Shortly before I retired I was diagnosed with breast cancer, this was a shock to me as I had always attended screening and knew exactly what to look for.  I received radiotherapy and chemotherapy and continued to work throughout. I am still under surveillance and attend yearly mammograms but “Once a nurse, always a nurse” I continue to stay busy.

I met Paddy and Juanita at a Cancer wellbeing fayre hosted by the Sandwell and West Birmingham Hospitals and they told me about the exciting new project they were working on, supporting people over the age of fifty who are affected by cancer – a perfect opportunity for me to put my skills and experience to good use.  I took part in the training and was soon partnered with a woman who had agreed to advocacy as she had some housing issues. My own experience helped me enormously as I had a good idea of what my partner was going through emotionally and I soon developed an extensive knowledge of housing policy.  Although the partnership has ended I feel I have made a very positive contribution to my partner’s journey and she knows she can come back to SCOPA if she feels she needs our help again.  With the knowledge I gained I was recently able to support one of my elderly neighbours who needed to move out of his flat whilst major work was being carried out. I wouldn’t have known about such things prior to becoming an advocate. I have also been instrumental in getting a gas supply to the flats where I live in order that I (and other tenants) can manage our heating more suitably. Overnight storage heaters are not the best if you need to adjust the temperature frequently as a result of medication. They do say you learn something new every day.

Sherry

Sherry

Throughout my career I had experience of advocates and their role but it has been challenging and very rewarding to be on the other side of the relationship.  My knowledge of the NHS and hospital policies has helped me no end and I have enjoyed visiting hospitals with my partner who was not confident in this environment.  I was able to ask a lot of questions on her behalf to ensure she was fully able to make informed choices.

I now have a new partnership with a husband and wife, they also have housing issues although totally different.  I have enjoyed running around for them and making phone calls to assist them in downsizing to a more manageable property. They appreciate my matter of fact approach and particularly the fact that I have time, something they haven’t always got.

I haven’t limited my volunteering to advocacy practice, I have joined the Local Cancer Champion Board as I feel I have professional experience which will benefit the project. I have also ventured down to Vauxhall in London with Juanita, the volunteer coordinator, to attend a National Champions Board meeting at Macmillan HQ – that was a long and tiring day but I thoroughly enjoyed the opportunity to meet with other champions and staff on the programme.  I have taken part in the national evaluation of the Cancer, Older People and Advocacy Programme  by BRAP and was also involved in Working Together for Change led by Helen Sanderson Associates which again drew on other aspects of my experience.

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I would recommend volunteering to anyone like me who wants to give something back.  Additionally for any retired professionals who want to do something similar to what they have done as a career, this is an ideal opportunity to be part of a valued and respected team.  If anyone out there is thinking about becoming a peer advocate I would recommend you talk to someone who is volunteering and find out first-hand what it’s like, I think you will get a positive response.

Sherry, Sandwell Cancer Older People & Advocacy


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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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Lynne’s experience of setting up care for her husband.

Lynne Wright is a member of our National Health Professionals Board. All members of this board are volunteers who give their time freely to advise us on how best to work with our health professional colleagues to increase referrals into our independent advocacy support service.

Lynne wrote the post below explaining her recent experiences arranging care services for her husband. I’m grateful to Lynne for sharing her experiences which highlight the great need faced by so many older people who do not have someone like Lynne to speak up for them.

On the first of October, my husband had a fall that resulted in brain damage. He was in hospital for ten days, home with the services of ‘Hospital at Home’ for almost four weeks, and then discharged leaving me to sort out an agency to take over his care. A social worker was appointed for him and a care plan worked out on paper. Putting this care plan into action has been so time consuming and even now, five months later it is still not fully in place – as we are still trying to arrange what they call his ‘enabling’. We are getting there, and life is getting back to ‘normal’ or as normal as can be but it has made me realise how very difficult it must be for some older people to cope with this type of problem. I am lucky, I live in an area where I have good access to good services, and I am capable of chasing people but I have found it very frustrating trying to get through all the bureaucracy involved. Not to mention dealing with all the financial matters.

My husband’s care plan is now working quite well, I am able to get away for the day, stay overnight, and will be away for four nights this week. Arranging cover requires having good organisational skills and a pool of people and services that you can rely upon. My thoughts regarding this relate to older carers, many who may have mid dementia or who find it all too complicated and frustrating to organise. The new Care Act does have provisions for carers, but accessing a full Carers’ Assessment is almost impossible to arrange – you have to know your rights and be firm and insist upon them – again this might be difficult for many carers.

I am a cancer patient and many cancer patients find themselves in very similar circumstances to those I have mentioned above. Many older patients are on long – term treatment and have little or no support and find they just do not know where to turn or what to do. This is where Independent Advocacy is so important and just knowing they have someone they can turn to for help and support can make such a difference to their wellbeing.

Lynne Wright: Member of the Cancer, Older People and Advocacy Health Professionals Board


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New National Cancer Director outlines future vision at London conference

“We want to have the best cancer care. Anywhere.”
Those were the words of new National Cancer Director Cally Palmer CBE as she addressed attendees to the Britain Against Cancer conference hosted yesterday in London by the All Party Parliamentary Group on Cancer (APPGC).
The annual event, which featured a keynote speech by Secretary of State Jeremy Hunt and was also attended by NHS England’s National Clinical Director for Cancer Professor Sean Duffy, is one of is one of the largest conferences of its kind in the UK.
Miss Palmer, who is Chief Executive of the Royal Marsden Hospital NHS Foundation Trust and joined NHS England as National Cancer Director in November, praised the vision set out by the Independent Cancer Taskforce and outlined some of the ways she will lead implementation of the recommendations of its report.
Miss Palmer said: “Back in September NHS England announced a new ‘Cancer Vanguard’: three sites which will come together to trial new ideas and approaches to the commissioning and provision of cancer services, including testing capitated budgets from April 2017. We expect this to begin to teach us about what works and what doesn’t almost immediately.”
“In response to the recommendation by the Taskforce report, we’re also establishing Cancer Alliances across the country from April next year, which will be the cornerstone of delivering changes at a local level.”
Miss Palmer announced a new Cancer Transformation Board to lead the rollout of the other recommendations of the Taskforce report, and a Cancer Advisory Group, chaired by Harpal Kumar, Chief Executive of Cancer Research UK, to oversee and scrutinise their work.
Miss Palmer also presented the first prototype of a new Cancer Dashboard to measure progress with a focus on incidence, survival rates, patient experience and quality of life for patients.
“From April 2016 every CCG will be able to see their own data in this format and will be able to benchmark themselves against other CCGs.
“This was the first of the 96 recommendations that the Taskforce gave us, and we have made it a priority. We all need to be clear what we’re working towards, and a unified set of measures is fundamental to this.”
OPAAL welcomes these initiatives and looks forward to collaborating with Macmillan on their roll out, in particular discussions around influencing the new Cancer Alliances across the country from April 2016.


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Encouraging health professionals to refer to us

The film we are highlighting today from our Older People’s Cancer Voices project has a call to action for health and care professionals – your local Cancer, Older People and Advocacy project needs you to refer older people affected by cancer.

We wanted to use this film to highlight both the strong outcomes of independent advocacy support for older people affected by cancer, but also the benefits to health and care professionals, both in terms of cost effectiveness and saving time, but also in strengthening service provision and therefore improving experiences for older people affected by cancer.

Our programme steering groups, cancer champions and the health professionals that we have strong working relationships with tell us that trust is a key issue for professionals making referrals outside the boundaries of their own services. Having trust in that referral, knowing the organisation you are referring to is a high quality service and will deliver strong patient centred outcomes, these are understandable barriers to referring into an independent advocacy service if you haven’t experienced these services before. We hope this film brings to life for health professionals what they, and their patient or the carer they are supporting can expect from a professionally led volunteer peer advocacy service, supported by experiences of the health and care professionals who already do make referrals:

We hope this film leaves you wanting to start a conversation with your local Cancer, Older People and Advocacy partner project, see the About Us page for details, we’re back tomorrow with a film aimed at commissioners.

Ang Broadbridge, OPAAL


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Encouraging more men to volunteer

Last week Cancer, Older People and Advocacy programme co-funder BIG Lottery Fund published two guest blog posts we provided for them. In case you missed them here is the first. The second will follow tomorrow.

BIG Lottery Fund’s recent Foresight report revealed that men volunteer far less than women. In the first of two blogs, we hear from a spokesperson at the Dorset Macmillan Advocacy about Graham, a male advocacy volunteer who supports people living with cancer…

At Dorset Macmillan Advocacy, both our steering group and our team of volunteer advocates have good male representation, although we don’t manage to recruit as many men as we do women.

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When three former service users were asked if the gender of their advocate was important to them, all three said it did not make a difference and that they simply wanted a good one. Of course, in some cases people might actively want an advocate of the same gender; for example, if they had a gender specific cancer. It is true that some of our male volunteers do seem to engage with their male advocacy partners in a particularly effective way. One partner even referred to his as being ‘like a brother’.

Graham-Willetts

Graham Willetts is on the steering group and Board of Trustees. As someone living with cancer himself, Graham was keen to help people in the same situation and joined the advocacy a year after his diagnosis. Having been an active member of his Parish Council for many years, he wanted to concentrate on developing cancer advocacy in Dorset. Graham has a professional background as a social worker, working in particular with disabled and older people.

Another reason Graham wanted to get involved was that because he was retired he missed the personal contact he used to have with people and the opportunity to challenge bad practice. Although he has learned how to be assertive in relation to his own care, he feels the nature of the disease means that even confident people can struggle and that it’s really useful to have someone else at appointments to ask questions.

Like Graham, volunteer advocates are generally motivated by wanting to help someone have a better experience than they themselves might have had. There are benefits for both parties and volunteers often report feeling ‘a lift’ as a result of their role.

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Looking back, Graham feels that without the support he received, and his own ability to research his condition, he would have been ‘in a mess’. Having more male volunteer advocates join our service can only be a good thing and Graham and our other male volunteers would encourage other men to join.

Dorset Macmillan Advocacy, are parallel partners in Older People’s Advocacy Alliance (OPAAL)’s Cancer, Older People and Advocacy project which is funded through the Big Lottery Fund’s Silver Dreams programme.