Older People Living with Cancer

Peer advocates supporting older people affected by cancer

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Cancer Equality launches Ethnic Minority Cancer Awareness Month 2015

Cancer Equality launches Ethnic Minority Cancer Awareness Month 2015 – to raise awareness, empower communities and save lives.
National charity, Cancer Equality,is launching this year’s Ethnic Minority Cancer Awareness Month (EMCAM) in July, with the aim of raising awareness of bowel cancer and the importance of screening among Britain’s ethnic minority communities. The campaign also aims to help individuals take up the services that are available to them – with the aim of saving lives.

The campaign is supported by Public Health England and by Bowel Cancer UK, with the charity providing speakers and resources.

Someone in the UK is diagnosed with bowel cancer every 15 minutes. That’s 33,218 men and women every year, with 12,871 cases proving fatal.


Ethnic minority communities, which make up 14% of Britain’s population, can be particularly at risk, because awareness of cancer and uptake of some cancer services, including screening, are lower in those communities. That means people from ethnic communities tend to be diagnosed when the disease is more advanced, which can lead to poorer survival rates.

EMCAM 2015 aims to tackle those issues, by working with four regional organisations – Croydon BME Forum (London), Black Health Initiative (Leeds), Birmingham Empowerment Forum (Birmingham) and CanSurvive (Manchester).

By working with local organisations that already have close links with ethnic minority communities, Cancer Equality aims to reach as many people as possible throughout the campaign, across the South East, West Midlands, North and North West.

With support from Cancer Equality and Bowel Cancer UK, the four regional organisations will run a range of awareness raising events and activities during EMCAM, aimed at different ethnic minority communities.


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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.


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.


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

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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.
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


Ageing without children – who will speak up for those without family?

I recently had the pleasure of meeting with Kirsty Woodard Founder of Ageing Without Children, AWOC. Kirsty really opened my eyes to the very great need for Independent Advocacy for this group of older people. We are now exploring how we can work together to provide independent advocacy support to this largely unseen group of people. Below is a blog written by Kirsty to help raise awareness of AWOC’s work. If you are interested in finding out more about AWOC or supporting work in this area please do contact Kirsty directly, her contact details are below.

“Not so much hands-on care as Independent Advocacy, championing me, and being sure to have my best interests at heart”

Earlier this year, AWOC carried out a survey of 400 people ageing without children. Their biggest fear? Having no one to speak up for them or act in their best interests when the time came that they could no longer do it for themselves. These comments were typical

“I will have no one to look out for me and my interests as I am currently doing for my father with dementia. The system is not geared to doing this and assumes there are family members”

“nobody to speak up for me when I cannot speak up for myself especially where health care is concerned”

“you hear terrible stories about abuse in care homes – often it is only exposed because the children or grandchildren become concerned and can prove what is happening”

At least 1 in 5 people over 50 currently have no children (we only have the statistics for women as none are kept on men) and by 2030, 2 million people will be over 65 without adult children.

Why does this matter? It matters for two main reasons. Firstly, the state assumes older people have family and there is an expectation that they will be involved with offering care and support. Indeed, the current government have suggested that families should take more responsibility for older people as the state is rolled back.
kirst headshot

“In those countries, when living alone is no longer possible, residential care is a last rather than a first option…..If we are to tackle the challenge of an ageing society, we must learn from this – and restore and reinvigorate the social contract between generations.
And uncomfortable though it is to say it, it will only start with changes in the way we personally treat our own parents and grandparents.” Jeremy Hunt,
Health Secretary in Speech to National Children and Adults Services Conference.

To be fair, the evidence shows that most of the time families especially adult children do intercede though whether of course they should have to plug the gaps in a failing social care and health system is another matter. However, the social care and health system is not geared up to deal with those who do not.

Secondly, society as a whole in the UK remains resolutely ageist; while sexism, racism and homophobia are deemed unacceptable, derogatory comments and assumptions about older people pass by without remark. Older people as a whole are seen as a burden on society, lacking value or importance. Abuse and poor treatment of older people has also been much in the news; from 15 minute home care visits, the scandal at Mid Staffordshire hospital to Panorama to ‘protecting our parents’, there has been a stream of reports highlighting appalling treatment of particularly frail and vulnerable older people. In the light of this, it’s no real surprise that people fear ageing without children and worry about being ignored and badly treated.

For those people ageing without children, Independent Advocacy will be absolutely crucial. However most local authorities are struggling to fund advocacy with money often only available for statutory provision, IMHA, IMCA, Complaints Advocacy and since April 1st 2015 Advocacy under the Care Act 2015. Broader based or long term independent advocacy is under more and more threat. This is a real worry when it’s clear that the need for it is going to grow considerably. This will need to be addressed so that people can age without children without fearing that they will be ignored and overlooked.

“I wonder, who will be shouting for me? Or will I be the old lady dying alone in a hospital bed because no one cares”

Kirsty Woodard
Founder AWOC


New Guide to help personalise care services through Individual Service Funds

I welcome this new guide which has been published to help councils and providers meet the Care Act 2014 guidance on Individual Service Funds (ISFs).
The Guide http://bit.ly/1N1NQxV Individual Service Funds (ISFs) and Contracting for Flexible Support – is aimed at council commissioners and providers, and sets out how councils can contract flexibly with a service provider to meet a person’s needs, and contract in a way that gives the person more control over their own support.
ISFs help people with care needs to have flexible, personalised support, tailored to individual preferences without having to manage the responsibility of cash direct payments. Advocates working on the COPA project will now be able to access this guide to help them support those most in need. I am often told stories of some of the people we support who desperately want to remain living in their own homes, with the support of Peer Advocates armed with this new type of resource it should give power to their elbow to ensure people are able to plan and receive the care they want and need to help maintain wellbeing.
homecare12A-300x225 It means people and families can choose to live in their own homes, with their own support and using their own budgets, while the councils that commission those services work differently with community organisations and providers of services to improve outcomes for people they serve and reduce costs.
United Kingdom Home Care Association Chief Executive and TLAP Board lead for Self-directed Support Bridget Warr says: “Individual Service Funds are a valuable and currently underused alternative where people don’t want to take a Direct Payment.
“This helpful guide encourages commissioners and providers to ensure they are available and effective in helping people obtain the support they need to live at home.”
Uptake of ISFs are fairly limited to date, but the guide recommends they should be the default option when a person does not want or is not able to manage a cash direct payment. The Guide also recommends that councils contract with providers of services in a way that enables them to be more accountable to people who use services and more responsive to their needs.

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National Voices review of Peer Support: why we would add Peer Advocacy to the review

In May Nesta and National Voices launched their Review paper Peer Support: What Is It and Does It Work?  – in this post Ang Broadbridge, our National Development Officer supporting our Cancer Voices and Sanofi projects, talks about the review, and why we think peer advocacy should be included in future peer support reviews.

They reviewed more than 1,000 studies and found evidence that peer support can help people feel more knowledgeable, confident and happy, and less isolated and alone.  The review also showed that there is a limited understanding of the different forms of peer support and how best to deliver support and the forms of training and infrastructure to get the most impact from it.

Peer advocacy as an effective model for peer support for patients

Existing evidence examined by the review showed that peer support is worth investing in as a way of tackling long-term health conditions but knowledge on the service could be strengthened by commissioning more robust and detailed evaluations of the impacts and reasons why peer support works better in some contexts and for some groups.  As our blog readers will know the OPAAL COPA project is all about Voice, Choice and Control and our programme is about peer advocates, themselves older people who have been affected by cancer putting that into practice for other older people affected by cancer – we wholeheartedly agree with the review that peer support is well worth investing in!

The review gave a strong overview of the evidence in favour of peer support and its effectiveness, but we found that the review omitted to explore peer advocacy as one such type of peer support; as National Voices called for wider evidence in their report this blog post presents some of the evidence OPAAL has been collecting to demonstrate the value of peer advocacy.

Every step of the way

Peer advocates walk side by side, ‘every step of the way’ providing whatever support the older person needs. They aim to be the ‘voice’ of the older person, are non-judgmental and make sure those they support are heard and their views and opinions are acted upon. We aim to raise awareness of peer advocacy amongst our health professional colleagues so that they can appreciate how this type of support complements the work of nurses, doctors and all those involved in the care of older people affected by cancer.


The effectiveness of peer advocacy support is demonstrated in our book Every Step of the Way. Our peer advocates, when asked about their experiences of volunteering said:

“I was struck by just how many people out there are alone”

“It’s always interesting, sometimes challenging, always rewarding, work with lovely people, never pressured, always supported.”

“I enjoy making a big difference to my advocacy partners, they tell me I do this and I can see a real change in them.”

The impact of their support is clear:

“I have had a big operation and I am alone. I didn’t think I was being listened to. Richard came along and helped me through it all and I will always be very grateful for that”

“We spent time listening to Elaine to understand the nature of her anxieties. On some occasions having someone to listen seemed to alleviate her worries. She said on several occasions ‘I feel that I can trust you’ (meaning the service as a whole). ‘When you say you are going to be there I know you will be.’ This was in contrast to how she felt let down by other services. We trod a fine line, trying to help her maintain her independence by using hospital transport and sometimes providing transport when it was really needed. She appreciated this and said ‘Thank you for being so human”

In developing the strands of our COPA and Cancer Voices work and looking at how we support our project partners to evaluate their practice the National Voices / Nesta report suggests some key gaps in the knowledge base:

ParticipationWhat type of support do

These are great prompts that will usefully inform our own evaluations and reviews – it’s clear from this Review that peer support hugely benefits vulnerable people and we are looking forward to producing more materials and resources to evidence what we already know from the work we’ve done, that peer advocacy works.

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Person-centred care and support – a moment of opportunity (Part one) – Martin Routledge

Kath Parson OPAAL’s Chief Executive welcomes our first Guest Blog from Martin Routledge the Director of Coalition for Collaborative Care who examines opportunities coming from the Five Year Forward View:

Today I’m attending the launch of the New Care Models Vanguard Programme and reflecting on what I think will come to be seen as an important period in NHS history. There are real opportunities to build on the great strengths of our NHS while making important shifts which reflect a changing society. But these opportunities will not take themselves.

March saw the announcement of the Vanguard sites and the Integrated Personal Commissioning (IPC) sites. Both national programmes have been broadly welcomed as the start of bringing Simon Stevens’ Five Year Forward View to life. The next few years are likely to determine the shape of health and care services for decades to come as these initiatives point the way for the rest of the system.

My personal experience of similar programmes over the past 15 years tells me that for those of us advocating person-centred care and co-production alongside people using public services, this is a moment of great opportunity but at the same time risk. We must ensure that the opportunity is taken and the risks minimised.

There is a strong tendency for those involved in these kinds of programmes, both centrally and locally, to focus almost exclusively on making changes to organisational systems. Under great pressure to deliver, usually with very difficult timescales, programme leaders are always at risk, whatever their motivations, of focusing on the plumbing and wiring rather than the people. This is not to say, of course, that the structural and system elements – like joined up budgets and integrated organisational and professional arrangements are not vital – they are. It does, however, mean there is a tendency, right from the design stage, not to place person-centred approaches centre stage. They are always there in public pronouncements and stated goals but the link between them and the detailed strategies and plans is often weak.

There are many reasons for this. Co-production with the users of public services in designing and delivering them is still quite novel, perhaps especially in health. The reality is that, for many, it is also still quite counter-cultural and made difficult by our systems. As professionals we feel we are already person-centred and usually try to be so, but the experience of those we serve often tells a different story. Doing this properly takes time – something that high profile programmes often feel they don’t have. This can lead to superficial engagement rather than serious co-production – itself undermining trust and even generating cynicism.

In addition, although the evidence base for achieving person-centred care is increasingly strong, these approaches have not yet gained serious traction in health. For example, only small numbers of people with long-term health conditions report having a care plan they co-developed with their health professionals. Programmes which aid self-management, shared decision making, enable peer support or link people to community supports for well-being are not routinely commissioned at the necessary scale.

So there is a potential nightmare scenario here, of merely shifting deckchairs, rather than realising a serious person-centred win-win.  This win-win will require people using health and social care services, and wider communities, taking responsibility and action for their own health and well-being. It will require strong communities, local third sector organisations and universal services playing a much more significant role. This can’t be achieved just by joining up organisations or integrated teams working in a more co-ordinated way with people. It also requires the release of capacity and energy from people, families and communities, which only comes from them being at the heart of how things are done and through different, supportive uses of professional skills and system resources.

This is where the opportunity lies. We increasingly know what works in generating much more effective relationships between practitioners and people using health and social care services, and so better outcomes. Two key means are personalised care and support planning and what C4CC partner Nesta has called More than Medicine. It is therefore vital that right from the start, the localities involved in NMC and IPC do the following things:

  • Co-produce the design of the local initiative with local people using public services and maintain this co-production at strategic and operational levels of decision making throughout. This requires going well beyond consultation.
  • Ensure the powerful involvement of local voluntary and community sectors and re-direct resources during the period of the programmes to community based support
  • Give at least as much attention (probably more) to the model of care as to the financial and organisational model.
  • From the start, design key elements of person-centred care to be at the heart of the care model – including personalised care and support planning, support for shared decision making and self-management, peer support, community based support for health and well-being and help for people to connect to these.
  • Design evaluation approaches with people using health and social care and incorporate outcomes that are meaningful to people, not just to the systems commissioning them.

Our early involvement with the IPC programme gives us encouragement as the selection of sites and early design of delivery support has prioritised and committed to these things. I have heard Simon Stevens say that three things he wants to see from the programme are:

  • Joined up services and supports
  • More powerful users of health and social care
  • A very different relationship between the NHS and the voluntary and community sector

The sites will be challenged in keeping on this track, and we would advise local people and organisations to do all they can to help them maintain this focus. It will be necessary for those involved with the Vanguards programme to do the same. C4CC will offer as much advice and assistance as possible to the initiatives.

Part two of this blog, What else can we do? will be published on Thursday 30 April 2015.

Martin Routledge is NHS England’s Director of the Coalition of Collaborative Care.martin-routledge He has worked in public services for 33 years, twenty of them spent working mostly for and with local government – often leading integrated  social care and health teams and initiatives and incorporating periods of academic work and teaching in higher education.

From 2002-11, at the Department of Health, Martin played a leading role in the development of the personalisation agenda initially in social care and then extending to health.

From 2008-11 he led the national Department of Health Putting People First initiative.

After leaving the Department Martin led the establishment and was first manager of the Think Local Act Personal national leadership partnership for personalisation and was Head of Operations for the charity In Control – which pioneered personalisation across public services.

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Supporting Kate’s campaign

There is so much in the news at present that reinforces the message of Advocacy. Advocates aim to support people to have an honest, open and equal relationship with professionals.   Dr Kate Granger’s twitter campaign- ‘My name is Kate’ recognises that for this to happen we must know who we are talking to. (#hellomynameis )  Kate said “The lack of introductions (in hospital) really made me feel like just a diseased body and not a real person.” When someone did introduce themselves, “it really did make a difference to how comfortable I was”.   


Dr Kate Granger

Kate’s message  is all about treating patients with respect and dignity. Without knowing who the professional providing the service is, the trust and respect that makes that relationship work will not be there. .  So here at Oxfordshire Advocacy, we support Kate’s campaign, along with the 400,000 doctors, nurses, therapists, receptionists and porters across over 90 organisations, including NHS Trusts across England, NHS Scotland and NHS Wales.

 Naomi Karslake, Project Manager, Oxfordshire Advocacy

Commissioning for Recovery – Working in partnership across Wessex

Jen Rimmer and Kathleen Gillett from Dorset Macmillan Advocacy recently attended the “Commissioning for Recovery – Working in partnership across Wessex” conference organised by Macmillan Cancer Support.  Members of Dorset Macmillan Advocacy’s Cancer in Older People Development Group (the former Champions Board) Paula Bond and Tracy Street of Macmillan Cancer Support and Abigail Orchard, Lead Cancer Nurse at Dorset County Hospital were there in the role of facilitators and speaker respectively.  Macmillan GP advisors in Dorset, Simon Pennell and Lavina Sakhrani-Clarke attended as did representatives of Dorset Clinical Commissioning Group.

The event brought together commissioners, providers, and service users to discuss and understand how the Recovery Package can make an impact on supporting people living with and beyond cancer and how this fits in with commissioning plans.  From our point of view we tried to understand where advocacy support would fit within the package.

The Recovery Package comprises a number of key interventions developed and tested by the National Cancer Survivorship Inititative (NCSI).  These interventions could make an immediate difference to people affected by cancer, by helping them to prepare for the future and return to a lifestyle as near to normal as possible.

In brief each part of the Recovery Package is designed to work together to inform the overall care pathway:

  • Holistic Needs Assessment (HNA) resulting in a written Care Plan
  • Treatment Summary from the hospital team to inform the GP and the patient
  • Cancer Care Review by the patient’s GP practice
  • Health and Wellbeing education event to enable rehabilitation and self management

See the explanatory video by Macmillan Cancer Support.

The keynote speaker Juliet Bouverie, Director of Services and Influencing at Macmillan Cancer Support described why and how the Recovery Package had come to be developed.  Regarding the HNA Juliet explained that the top concerns for a patient’s care plan may not be those anticipated by clinicians and were most likely to be related to worry, anxiety and fatigue.  I saw immediately the role for peer volunteer advocates enabling their advocacy partners to share feelings and helping to find things out or signpost to sources of practical support when the person with cancer lacks the energy to do so.

Participants’ questions and observations included Kate Jenkins, Clinical Psychologist at Salisbury District Hospital, who felt that patients should be supported to self-manage from the start, that recovery should begin at diagnosis and that it is important not to disempower patients in the first place.  Another participant referred to this process as ‘prehabilitation’.

Recovery package diagram

Recovery package diagram

Simon Pennell chaired a question and answer session with three people affected by cancer.  Paula Bull described her experience of the Bournemouth After Cancer Survivorship Programme (BACSUP) and the enormous difference it made to her physical and mental wellbeing.  She stated that she wanted commissioners to make emotional and practical support part of care and not an ‘add-on’ or a ‘patchy’ service provided solely by charities.

During the afternoon discussions Simon Pennell said that he thought that the Treatment Summary document would empower people affected by cancer to be more proactive in respect of the support they required from their GP.  We agreed that peer volunteer advocates could have a role in assisting their advocacy partners to ‘unpick’ their treatment summary and prepare their questions and ideas ahead of their GP appointment.

Kathleen Gillett, Dorset Macmillan Advocacy

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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.







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