Older People Living with Cancer

Peer advocates supporting older people affected by cancer


Leave a comment

One Man’s Experience Touching the Nation

Today Jen Rimmer from Dorset Macmillan Advocacy (Dorset Advocacy) tells us about the inspirational Steve Hewlett:

Steve Hewlett’s recent interviews on Radio 4’s PM programme about his experience of cancer have been widely acclaimed. Steve is a writer, broadcaster and media consultant – he is also the editor of Radio 4’s Media Show and was diagnosed with oesophageal cancer in March 2016.

From the outset Steve understood that his treatment was always going to be about extending lifespan rather than curative and Steve has been open and frank about his feelings and experiences both with his family, colleagues and the nation!

As a seasoned journalist, maybe it comes as second nature to him to research and report on his cancer experience but the resultant articles and particularly the interviews with PM’s Eddie Mair have provoked a strong response in those that have heard them with listeners reporting things like remaining sitting in their cars on their driveways to hear the interviews in their entirety. Others have commented on the positive effect of hearing a man (or men as Steve’s 3 grown sons are also interviewed on one occasion) discuss his feelings so openly.

steve

Steve in his cold cap during chemo

From the outset, Steve’s experience has been characterised by choices. Initially choosing the best hospital and treatment and, latterly investigating the possibility of participating in clinical trials.

Faced with a terminal diagnosis and potentially a short window of opportunity (he was told that, left untreated, he would lose the ability to eat or drink within 8-10 weeks) Steve describes himself as being “reduced to tears” but the inefficiencies of the NHS administrative process in securing appointments.

At his very first appointment at his local hospital, Steve describes being seen by a Registrar who suggested a treatment regime but made no mention of an additional drug that Steve had been expected to be offered based on his own research. So Steve politely mentioned it. Leaving the room, a brief corridor discussion between Registrar and Consultant led to the Registrar returning and offering to include the additional drug. On questioning the Registrar agreed that research does suggest that, although patients may tolerate the treatment regime less well, the additional drug provides a 10% improvement in response. Steve comments wryly that 10% seems a lot more significant when faced with a prognosis like his but his main point here is that he felt aggrieved not to have been offered the choice. Unsurprisingly this hospital was not in the end Steve’s choice for his treatment, opting instead to attend the Royal Marsden in London.

The Macmillan Cancer Nurse Specialist present during one interview underlined the importance of taking a second person with you to appointments not least for emotional support but also to be a second pair of ears. Steve agreed that this was great advice but wondered how his 80 year old mother would cope with this process if he found it so hard. “Would she have been able to access the information, would she have been able to get on and off the phone chasing her appointments and ultimately challenge the doctors? How many people just go along with it all passively?”

DMA logo

new-da-logo

Here we see an educated, articulated and self-advocating individual describe his experience of navigating the cancer pathway and struggling. As advocates we traditionally support those less able to have their voices heard but Steve’s testimony makes the case for cancer advocacy clear. Even when health care professionals are doing their very best, many of us would find advocacy support invaluable if faced with a difficult diagnosis.

Find Steve’s interviews here on the BBC’s iplayer: http://www.bbc.co.uk/programmes/p03m4q5s/episodes/downloads

Follow Steve on Twitter: @steve_hewlett

Jen Rimmer, Dorset Advocacy


Leave a comment

Encouraging news re Dying at Home

New information collated by the National End of Life Care Intelligence Network

Published: 26 June 2015

PHE’s National End of Life Care Intelligence Network (NEoLCIN) works with partner organisations to collect, analyse and present end of life care intelligence from a wide variety of sources. This report summarises the key findings of the network and its partners over the last year. Although much of the research has been published previously, this is the first time it has been brought together in one place.

s300_NHS_lib_Elderly_person_with_nurse_SCYW0029-9449_960x640

New findings show there is a growing understanding within the health sector of what is important to people at the end of life.

Key findings from the report include:

The proportion of people dying at home or in care homes continues to increase
Patients with an Electronic Palliative Care Co-ordination System (EPaCCS) record and those receiving palliative care services such as hospice at home, Gold Standards Framework or Macmillan services are more likely to die in the place of their preference
Two in five people with dementia die in hospital, indicating that the trend towards increasing hospital deaths for people living with dementia has reversed.

Care-300x225

Factors most importance to people at the end of their life were; having pain and other symptoms managed effectively, being surrounded by loved ones and being treated with dignity. This is entirely consistent with what older people tell our Advocates they want to achieve when describing a ‘good death’.

More GPs are having conversations with people about their end of life care wishes but 25% still say they have never initiated such a conversation.

Download the report, http://www.endoflifecare-intelligence.org.uk/view?rid=872


Leave a comment

Government urged to invest £5.2bn in preventative health and social care

OPAAL welcomes this new report commissioned by the LGA calling for an increased investment in preventative health and social care.

The government urgently needs to invest £5.2 billion over the next four years to overhaul the health and social care system, according to a report commissioned by the Local Government Association.
The report by Ernst and Young calls for the government to divert £1.3 billion from the budget each year over the next four year to develop a new health and social care system.
PoundCoins-300x225
Data shows that around 30% of health and care service users take up over two-thirds of the health and social care budget.
The proceeds from the transformation fund have been recommended to be used on preventative measures, especially for long-term conditions which cost the health system an estimated £88 billion per year.
The LGA report suggests that the extra financing could keep elderly and disabled out of hospital and healthier for longer rather than putting money into the most serious conditions so that the long term state of the health and social care system is improved.
Cllr Izzi Seccombe, Chairman of the LGA’s Community Wellbeing Board, said: “We need an urgent and radical change to the way in which we provide care for the elderly and disabled.
“It is social care services which keep people out of hospital and living in the community for longer. Social care and health are two sides of the same coin – it is quite clear that without adequate funding, social care simply cannot alleviate the pressure on the NHS.
“The Government needs to invest money in a system which will be there to look after people now and in the future, and commit to a long-term strategy to ensure that people get the care they need.”

We believe this includes ensuring that all older people who need independent support to access the care they need and want to maintain wellbeing deserve to access this support, and if necessary independent advocacy to ensure their voice does not get lost in the system.

Access the full report here. http://www.local.gov.uk/documents/10180/6869714/Creating+a+better+care+system+June+2015/0692d75a-5c26-4b85-a2b5-9e7dd59b455e


Leave a comment

We’ve been listening to the Reith Lectures this year, have you?

Here at Dorset Macmillan Advocacy we’ve been listening to the 2014 series of Reith Lectures on BBC Radio, this year delivered by surgeon and Harvard Professor Dr. Atul Gawande. Gawande is a well known author and was named as one of the world’s most influential thinkers by Time magazine in 2010.

As a cancer advocacy service we experience all aspects of our local cancer services and with the massive Dorset CCG Clinical Services Review underway we are all interested in thinking about how systemic changes could benefit patients and clinicians alike.

wp02fe02c9_06

 

Untitled

 

 

 

In the first lecture Dr Gawande describes the central act of medicine as, “the moment when one human being turns to another human being for help”. He reflects on what he sees as the underlying flaw in modern medicine: a failure to effectively and consistently apply the knowledge science has afforded us over the last century to achieve the best outcomes. The scope and depth of the knowledge we now possess, he argues, goes beyond anything implementable by any one individual hence the need for updated systems to enhance communication and delivery of services.

In his second lecture Gawande highlights the need for effective systems to underpin delivery of the best possible treatments. The premise is relatively simple: does everyone involved in the treatment process know their role – have all the bases been covered and has this been verified?

Gawande and his team have pioneered a checklist approach looking to fields outside of medicine for inspiration. So far this has yielded impressive results saving lives and reducing complications during surgery where trialled.

Dr Atul Gawande

Dr Atul Gawande

This is an approach that he believes could apply to complex, long term conditions where patients often have more than one problem requiring treatment and could potentially not only improve patient experience and outcomes but also (and importantly) save money.

The experience for many older people affected by cancer is busy and complex with multiple individuals and agencies involved. Gawande argues that with this level of complexity the opportunity for oversight and errors is greatly increased unless there is a solid system in place to co-ordinate the treatment process. He draws on powerful personal stories to illustrate his point: he counted a grand total of 66 people attending to his own mother in her hospital bed during admission for a knee replacement, some of whom gave conflicting advice as a result of operating within their own, isolated remits.

The situations and dilemmas outlined in Gawande’s lectures highlight the role that advocacy can play to great effect in the cancer journey – when a person is at their most vulnerable and difficult choices have to be made and complex treatments and procedures understood and implemented, having an advocate can be key.

Jenny Rimmer, Senior Macmillan Advocate, Dorset Macmillan Advocacy

 


Leave a comment

Janet and Aneesah talk on Preston FM about the project in Lancashire

Recently Services Manager Janet Cullingford and Advocate Aneesah Bana of project partner I-CANN spoke to Preston FM about their new Cancer Older People and Advocacy work and the search for peer volunteers.

You can listen to what they had to say here

(Once re-directed you can avoid the radio advert by clicking on the “skip ad” button


2 Comments

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.

logo_site

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

 


1 Comment

OPAAL to receive share of £4 MILLION to support proposals in the Health and Care field

OPAAL is to get funding to develop new, innovative approaches to health and care, actively share excellent practice or improve integrated care and efficiency.

Web

Voluntary sector organisations submitted funding bids to the Department of Health setting out how they could help meet the Departments objectives of better health and well-being and better care for all and how their proposal has potential for national impact.

Minister for Care and Support Norman Lamb said: “These projects play a crucial role in supporting people, their families and carers. They are examples of just some of the excellent and innovative work going on throughout the country in the voluntary, community and social enterprise sector – all of which help to create and support strong and resilient communities.”

Norman Lamb MP

Minister for Care and Support, Norman Lamb

The Department of Health funding comes from the Innovation, Excellence and Strategic Development Fund (IESD) and will cover the cost of a Development Officer post for 4 days a week for 3 years. The Development Officer will work on a  new OPAAL project called Older People’s Cancer Voices alongside the Flagship Cancer, Older People and Advocacy Project and will build relationships between Clinical Commissioning Groups and independent advocacy organisations. Initially the project will work with pilot partners Beth Johnson Foundation, Dorset Advocacy, Help & Care and Sefton Pensioners’ Advocacy Centre to create a library of filmed case studies. These real life stories will, like our recent publication Every Step of the Way, aid the buy-in to advocacy and support Commissioners, Health & Wellbeing Boards and Healthwatch to get a better understanding of the impact that advocacy can have.

We aim to produce best practice guidance for use by providers of advocacy services to older people to help them build relationships with Commissioners. Eventually this guidance will be made available across the whole of the advocacy sector. This guidance should ultimately lead to greater opportunities for older people to influence service delivery through Health & Wellbeing Boards and Healthwatch, promoting equality of opportunity along treatment pathways.

Kath Parson

Kath Parson

Kath Parson, OPAAL’s Chief Executive, said ” We are absolutely delighted with this award, this money will help us bring the voices of older people directly to the attention of local decision makers. We aim to support older people to make films of their stories to be used to educate and inform local decision making ensuring that independent advocacy becomes a key component of age friendly care using evidence we will gather as shining examples”.

We are currently recruiting for a new Development Officer and hope to see the project get underway in the Autumn. If you are keen to work with us on this exciting project you can download the application pack from the home page of the OPAAL website by clicking here. The closing date for applications is Tuesday August 12th and interviews will take place in Stoke on Trent on Wednesday 10th September.

Marie McWilliams, National Development Officer, OPAAL


1 Comment

Cancer patients lacking information on cash aid

Concerns have been raised about the lack of information being given to cancer patients in Wales about financial support following their diagnosis.

Macmillan Cancer Support said that the recent Welsh Cancer Patient Experience Survey showed that 56% of patients said they were not offered enough information on welfare benefits advice by hospital staff.

This is despite a commitment in the Welsh Government’s Cancer Delivery Plan, published in June 2012, to routinely refer everyone to financial advice and support.

The charity said that analysis of health boards’ local cancer delivery plans and annual reports shows no mention of how they plan to meet this Government requirement.

It added that the survey highlighted significant variations across health boards.

Previous research by Macmillan Wales highlighted that cancer patients are hit with an average cost of £640 a month as a result of their illness.

This is due to a loss of income and having to cope with additional costs such as travel to hospital and increased fuel bills due to having to spend more time at home and feeling the cold more following treatment.

Watch The Cost of Cancer: Macmillan Wales 

Susan Morris, general manager for Macmillan Cancer Support in Wales, said: “We warmly welcomed the commitment in the Cancer Delivery Plan to routinely refer cancer patients to welfare benefits advice if they need it, but we are extremely concerned that two years on this isn’t happening for everyone who needs it.

“The cost of cancer is a huge problem in Wales and can have a devastating effect on a person’s recovery. Cancer patients should be concentrating on getting through their treatment, rather than worrying about paying the bills.

“Health boards must do more to ensure people living with cancer are signposted to good quality specialist and timely welfare benefits support to help them cope and manage the financial impact of their diagnosis.

“With changes in welfare reform kicking in, now more than ever, it’s vital that people affected by cancer get the welfare benefits support they need.”

A Welsh Government spokesman said:“The Welsh Government’s Cancer Delivery Plan includes a commitment that people diagnosed with cancer should be routinely offered the opportunity to access benefits advice and support as part of the care assessment and planning process.

“The cancer implementation group has said that, over the next year, the role of the key worker will be improved to ensure patients are supported and have access to advice, including information about welfare benefits.”

Age Connects Cardiff is now part of OPAAL’s Cancer Older People Advocacy Project. This project will be recruiting and training older people affected by cancer to provide advocacy support to their peers. This will focus on being wholly personalised and will provide whatever support is required by the patient to enable them to better cope with a cancer diagnosis and the impact this has across the whole of their life. In practice as our pilot has shown the types of support requested include helping to speak with health professionals about treatment and care, emotional support, practical support e.g. arranging transport to access treatment and of course simply having someone there for you, someone ‘on your side’ able to fight your corner when the going gets tough. We aim to influence the Welsh Government to consider routinely offering advocacy support to all those affected by cancer that need it and will be working closely with Macmillan Wales to ensure our services are complementary. For more information about the Cancer Advocacy Service at Age Connect Cardiff please click here


Leave a comment

The value of what we’re doing

Today I took part in a live online discussion run by The Guardian. The topic was the emotional and psychological impact of cancer. The panel included health professionals, representatives from the voluntary sector like me and most importantly, people who have been diagnosed with cancer.

It was great to hear so much enthusiasm for better support services for those affected by cancer. As the discussion progressed I came to a fresh understanding that several of the things we do as part and parcel of our project are vitally important.

We provide peer support; those affected by cancer are best placed to support others affected by cancer since they can really understand the emotional and psychological wringer that cancer can be. One contributor noted: “personal experience of cancer gives insights and a common platform for understanding.”

shutterstock_141809347

 

Another aspect of our project is independence, we provide an independent peer advocate;  someone who will always listen without judging and who can empower the older person affected by cancer to share thoughts and feelings they might not want to share with those closest to them. Our peer advocates can help relieve a feeling of intense isolation and loneliness even for those who have lots of family support. A second contributor said: “loneliness and isolation many stem from going through such an intense experience – both physically and emotionally – that differs from most of the people around. Of course family members and close friends are also going through an unbelievably intense experience – but it is their own and is unique to them. Add in the way in which family members will often work so hard to protect/shield each other from their own distress – and it can feel lonely even in a most loving environment”

 

Thirdly, our development of a new National Health Professionals Board will enable us to find ways to reach the health professionals who may not always be as understanding of the emotional and psychological needs of their patients and their families as they might be. One lady who joined in the discussion described how her daughter in her twenties was diagnosed with leukaemia. She said: “I have come across some most wonderful, caring medical professional but have also met quite a few who really should not be working in the NHS and who lack sympathy and understanding for what we are going through.”

Being involved in this discussion reinforced my belief that what we are doing is making a real difference to real people. I’d like to extend my personal thanks to all of our wonderful peer advocates who do such fabulous things, unpaid but not unappreciated.

Marie McWilliams, OPAAL


Leave a comment

OPAAL’s Patron sends her congratulations

Her Grace, the Duchess of Northumberland, Patron of OPAAL has sent her warmest congratulations to OPAAL and all partners involved in the Cancer, Older People and Advocacy project. The news that OPAAL was successful in our £1 Million application to BIG Lottery’s Silver Dreams Flagship funding has delighted the Duchess who has watched our work with interest. 

“I am so very pleased for everyone involved in what is a fabulous service. This £1 Million funding from BIG Lottery gives OPAAL and its partners the opportunity to develop new cancer advocacy services for older people in completely new areas of England. With additional funding from Macmillan Cancer Support enabling services to be developed in Wales for the first time these really are exciting times. It is so encouraging to think that many more older people affected by cancer will get the advocacy support they so desperately need. We all know someone who has had cancer and no matter how much family support you have around you it must make a world of difference to be able to speak to someone who has been through the same thing and who therefore understands.”

OPAAL's  Patron

OPAAL’s Patron