Depression and cancer

It’s all over the news today that there’s insufficient support for people with cancer who suffer from depression.

A total of 3 articles have been released today by The Lancet, The Lancet Oncology and The Lancet Psychiatry. The articles don’t make easy reading for anyone wishing to ensure adequate support for those affected by cancer. They describe a real issue of  major depression going untreated in people with cancer.

The authors screened over 20,000 patients and estimated the prevalence of major depression amongst oncology outpatients. Worryingly the majority of people identified with depression were not receiving any form of treatment associated with that depression. In 2 different trials the authors compare those with depression and no treatment to those who do receive treatment. The results indicate much better outcomes where treatment is provided. These include reduced depression and anxiety but also lower levels of pain and fatigue, and better functioning and quality of life.

If you’ve read our publication Every Step of the Way you’ll remember stories such as those of Brian whose Peer Advocate Bob described how Brian: ” found his condition very hard to accept and suffered bouts of depression and often became upset when speaking about his situation.” 

In another story Ron tells us: “I felt a great sense of confusion, apprehension and got very depressed very quickly. I couldn’t
bring myself to look at the leaflets that I was given because the whole idea of having cancer was terrifying and I had this idea that if I didn’t look at them, it may go away.”

The advocacy support provided to both Brian and Ron made a real difference to them. With awareness of depression in cancer patients now raised by the Lancet articles we hope additional support mechanisms will become available to a wider range of cancer patients.

The articles in the Lancet, The Lancet Oncology and The Lancet Psychiatry can be accessed here

 

Marie McWilliams, National Development Officer, OPAAL

 

Advertisement

Hello my name is…Kate

Six months ago I heard about Dr Kate Granger. In August 2011 Kate then aged 29 was diagnosed with a very rare cancer, Desmoplastic Small Round Cell Tumour (DSRCT), a terminal diagnosis.

Kate is a hospital doctor who treats and cares for older people. Kate came into my life when I was feeling particularly uninspired at work, concerned as to the future funding of our cancer support work and to cap it all health worries had resurfaced with two of our four elderly parents. I ordered and read her two books, The Other Side which is the story of Kate’s gargantuan struggle coming to terms with being a patient, and the follow up The Bright Side which explores her return to work after a prolonged absence. Both these books had an immediate impact on me, apart from making me humble and grateful that I was not so diagnosed and having to cope with such a distressing prognosis, they served to give me the proverbial ‘kick up the backside’, giving me a fresh impetus to tackle our work with renewed vigour and energy.  Soon afterwards my elderly parent’s health turned a corner and we heard we’d been awarded the £1,000,000 from the Big Lottery Flagship team to continue and further expand our work supporting older people affected by cancer.

This award, along with our own recent publication Every Step of the Way which tells the stories of 13 older people’s experience of the difference advocacy support made at various stages along their cancer pathway, served to raise our profile somewhat and I was invited to speak about our work at the national annual NHS Confederation conference on 4th June. Kate had also been invited to this conference as a speaker, a very important speaker as she had been invited to close the conference on 6th June.

I was unable to be present on the 6th as I had a prior commitment elsewhere, however I was able to catch up recently, and once more found myself profoundly moved by this young woman’s story and her commitment to improving the lot of patients with her latest ‘my name is campaign’. A simple message yet one with the power to transform the relationship between doctor and patient. Kate has always been a strong believer in getting to know people’s names as part of building good working relationships with both patients and other colleagues. It is the first rung on the ladder to providing compassionate care and often getting the simple things right, means the more complex things will follow more easily and naturally.

Kate’s campaign has gathered momentum and will impact on many future relationships between doctor and patient, however until all patients can feel comfortable talking to the medical staff who care for them we will continue to need armies of advocates to step in and simply ‘be the voice’ of older people to help ensure they get heard by those in such powerful positions determining their treatment and care.

If you have a few moments do please watch the video below.

If you, like me have been inspired by Kate and wish to learn more of our work and how you too could become a trained advocate for older people in your area then do please get in touch simply email me kath.parson@gmail.com and I’ll point you in the right direction.

Can we think ahead while still adapting to a diagnosis?

With a limited number of volunteer advocates available the length of time that they can support any one individual inevitably has to be limited.  At the same time we wish to support people for as long as they need support but will also aim to refer them on to other local services such as befriending if and when appropriate.

One particular challenge for advocates in a partnership lasting a relatively short time is how to  assist with advance care planning.  Advocates are skilled at building the deep level of trust needed but they must follow their partner’s lead.  Jo Lee, Senior Macmillan Advocate who has joined the team here at Help and Care described advance care planning as a Pandora’s Box that some people may fear to open.   We would hope that once advance care planning is embarked upon with the support of an advocate then the fear would be much less.  We are planning in depth training for our volunteer advocates on these issues in the coming year.

Unlike cancer, dementia is always progressive but, like cancer, people can live well with the condition for many years. The recent evaluation of a post-diagnostic support project for people with dementia in Scotland by the University of Stirling and Bournemouth University Dementia Institute commented on the difficulty in supporting people with advance care planning.  Some people ‘just did not want to think ahead’ which underlines ‘the highly sensitive nature of the topic…and the lengthy timescales require to support people to think ahead, if they do actually wish to.’  People get used to the idea of having a particular illness or condition at different rates and that affects their ability to move forward on their journey.  The same report notes ‘reluctance in thinking too far ahead while still adapting to the diagnosis’ and emphasises ‘the importance of recognising that decisions on difficult topics, particularly advance care planning, will take time and of allowing people to arrive at their own position in their own time.’

Advocacy support helps people in different ways at different times on their cancer journey.  Some people contact us for support around the time of diagnosis or for help in coming to terms with a change in their situation. They may then say that they wish to end their partnership as they aren’t yet ready to think about advance care planning.  They know that they can contact us again in their own time.

You don’t have to carry cancer around on your own

A problem shared really is a problem halved!
Cancertalk Week
20-26 January 2014

Project partner Macmillan Cancer Support is running Cancertalk Week – Dealing with cancer is hard enough without worrying about it all yourself.  If you’re embarrassed, worried about upsetting other people or just unsure about speaking out for whatever reason, Macmillan Cancer Support are here to help.

If you want to find out more information about your type of cancer or cancer therapy and treatment they have all the information.

As many people worry about financial support, specialists will be available to offer advice about your own personal case.   Just give them a call on: 0808 808 00 00 or click here for some financial tips.

Macmillan Cancer Support also realise that catering to your emotional needs is a huge one.  If you’d like to get put in touch with people that are going through a similar experience, you can join the online community or cancer support groups.

Find out more information about Cancertalk Week here.   During previous Cancertalk Weeks Macmillan encouraged people affected by cancer to talk about it to sum up their feelings and worries with family, friends and professionals.  Devastating, rollercoaster and heart breaking are just some of the words used to express peoples experience of cancer.

If you have cancer, try to speak to someone about it, and it doesn’t only have to be when this event comes around – there are people out there who want to help and listen.

Kath Curley

Cancer Advocacy Project Lead,  Beth Johnson Foundation

Monica’s view

Having been involved with the advocacy for older people affected by cancer project as a member of the National Champion Board it has demonstrated how important the peer advocates have been in supporting older people living with cancer.

From personal experience I know how challenging it can be to navigate the complexities of the NHS and I am a nurse by background!  I often therefore wonder how challenging it must be for anyone who does not have good advice and support to help them come to terms with their diagnosis of cancer and the treatment that is required

It is evident from the many case studies that have been presented from the pilot sites that older people who have received support have benefited in numerous ways. For example, being better informed to enable them to understand treatment options available and providing access to welfare benefits, all of which help reduce unnecessary stress and anxieties not only for the older person affected by cancer but also their family.

Monica

There have of course been many other benefits realised from the pilot project. Volunteers who have been affected by cancer have been able to use their experiences to help others. Valuing older people’s knowledge and expertise can have a huge impact on their well-being, and of course these volunteers come from all walks of life and have other life and work skills that can add value to those who are being supported and to the organisations who enlist their voluntary time.

The project has also created a wonderful opportunity to bring voluntary and public sector organisations closer together for the benefit of older people living with cancer. This gives greater understanding of how the various organisations and professionals work and enables the sharing of experiences and expertise.

It has been a privilege to be involved with the pilot project. The enthusiasm and commitment of individuals working at the pilot sites alongside OPAAL and its partners has ensured the success that has been achieved. I wish the funding team well with the current funding bid.

Monica Dennis

National Cancer Champion

November 2013

Report: “When bees meet trees”

I read a fascinating blog recently by Owen Jarvis published by the Clore Social Leadership Programme. In ‘When Bees Meet Trees’, Jarvis argues that major funders have a critical role to play in building collective approaches to social problems.

Funders have the ability to design their programmes so that organisations work together as a community with a common goal. Some people call this “collective impact networks”.
As Ruth Marvel says, large organisations, ‘trees’, feel they have to do everything themselves – including social innovation. This doesn’t play to their strengths.
They can achieve social mission and find new ideas more effectively if they supported the work of others, “bees”. These are smaller groups like OPAAL, entrepreneurs and charities – nimble, creative and fast-moving, often lacking size and impact.
This support can include investment. However, the strengths of “trees”, working nationwide, strong brands, networks and influence, can be used to encourage adoption of new ideas by government, the public and other organisations.

Our Cancer, Older People and Advocacy project is one example, and has shown that large charities like Macmillan Cancer Support can play different roles in supporting individual organisations to overcome competition to work collectively.

We are very lucky having Macmillan’s support. In addition to funding us they play a very special role in making their many specialist staff available to us providing OPAAL with a readily accessible ‘extended family’ of experts to support our work to improve the lives of many older people struggling with the impact of a cancer diagnosis and the effects this has on everyday life.

We are currently reaching the end of a six months programme bringing together 24 partner organisations to help us plan our £1 million Flagship bid to the Big Lottery Silver Dreams programme. This funding is critical and (if successful) with additional investment by Macmillan Cancer Support will help us support over two thousand older people over the next three years. Together we’ve involved hundreds of older people up and down the country in this planning stage, we all hope the decision makers at Big Lottery are influenced by the “When bees meet trees’ report and willing to invest further in this type of social change.

Like Jarvis and Marvel I too believe social change happens when “bees meet trees”, this report needs to be widely disseminated to inform other potential ‘trees’.

Older people tell us our work is exciting, innovative and in many cases changes lives. Wish us luck with our bid, and if you are a social media ‘tweeter’ do please pass this one to your networks.

Visit the Clore Social Leadership Programme website to download a copy of the “When Bees Meet Trees” report

Workshop on caring for the bereaved

Our advocacy support is available to people affected by cancer, not only those people with a diagnosis, and we are already have partnerships with people who have lost their family member to cancer.

Nicola Symes a counsellor and former Palliative Care Nurse came to Help and Care in July to train staff and volunteer advocates of Dorset Cancer Advocacy at a one day workshop.   In addition Help and Care’s Gateway helpline team who take referrals for the service wished to gain a better understanding of how to engage with callers who may be experiencing difficult emotions.

Nicola Symes

Nicola’s programme covered understanding bereavement, the grief process, family dynamics and how to help or hinder.

Nicola  provided many examples from her own experience of what can be helpful, and unhelpful, for those who have lost a loved one. Her warm and relaxed style encouraged us to reflect on how our instincts might be a guide to help us to react well in what can seem like a difficult situation.

Participants said afterwards that Nicola was a good communicator, they appreciated her measured pace and they had enjoyed the day.  Our evaluation asked what in particular participants would take away from the day and comments included: ‘That grief is a personal process’; ‘Be more aware and sensitive when dealing with someone who has suffered a loss’; ‘The knowledge that I can help even if just by being there’; ‘Listening, doing your best and allowing the bereaved person their experience’; ‘More confidence – it’s OK to be unsure what to say’.

My experience of being a Volunteer Advocate

What is it like – being an advocate for the Beth Johnson Cancer Advocacy Project? The first thing was finding the courage to apply, first of all I thought perhaps I was too old; secondly could I manage to drive around the Potteries when required to visit a client without worrying about it for too long? I phoned for an interview.

I feel very strongly about helping people with cancer as I have been a victim myself so it was very comforting to have my phone call answered by a very pleasant lady – the Project Co-ordinator. She informed me about the things I would need to do before I could be accepted.

I thought at first it would be quite a daunting project even though I was a retired nurse. The people we get involved with are vulnerable with life threatening illnesses to contend with, for example, being so ill they have to give up their jobs and have no money coming in, is yet another worry for them. This I soon found out after several courses and meeting lots of very interesting people who dedicate their lives to helping these sick, vulnerable people.

Sheila Kay

Several months on I have been accepted (I think?) and enjoy going round to visit these people. Some are very nice and it makes you feel quite sad because of their suffering but it gives you a nice feeling to be able to support them and signpost them to people and organisations that can help their situation. I, myself, did not realise just how many people out there can help and I have found lots of organisations willing to help older people affected by cancer. One such person, an elderly retired gentleman, had only his pension to live on and he had retired early through illness, was finding it hard to survive. My mentor, who I went to visit this gentleman with, was very good at explaining things to him, gave him lots of information on who to contact. It was so good to see the relief on this man’s face when we came away with a promise to follow up our visit with another one and keeping in touch by phone on a weekly basis.

This week we have another meeting and workshop. I will also have another person on my list to visit and a catch up with what has been going on with the other clients.

On the whole I am really glad I applied for this project. It is good to help people and also interesting learning about life with cancer and how other people who have no-one to support them can survive.

By Sheila Kay