Older People Living with Cancer

Peer advocates supporting older people affected by cancer


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Sanofi help us find a new medium for telling our stories!

In Autumn 2014 Sanofi UK awarded OPAAL the Gold Award in its 2014 Patient Group Bursary Scheme; a scheme that supports initiatives across the UK that make a tangible difference to patient empowerment and education. OPAAL’s gold award of £25,000 allows us to set up a Cancer Patient Train the Trainer Programme.

Ang Broadbridge is leading this work for OPAAL, Ang said “this award allows us to do some really intensive work raising the profile of independent advocacy for older people affected by cancer; I am looking forward to working with our trainers over the summer to co-produce a training programme we hope will have a high impact and lead to good practice and shared learning for our COPA delivery partners.”

Ang Broadbridge, National Development Officer

Ang Broadbridge, National Development Officer

Work is well under way recruiting older people affected by cancer to become trainers able to train both Healthcare professionals and social care professionals raising awareness of independent advocacy and most importantly telling the story about how it supports older people affected by cancer to better cope with their lives following a cancer diagnosis.

Furthermore a training programme is being developed to support our trainers, older people affected by cancer, to understand the nature of commissioning and the key messages we want commissioners and health professionals to understand.

Following the publication of Every Step of the Way last year we have been exploring different mediums for telling advocacy stories. We were delighted to work with Sanofi earlier this year on a piece installed at their head office on Onslow Street in Guildford. Telling David’s Story from Every Step of the Way on their glass atrium walls Sanofi are raising awareness of advocacy with their staff and visitors to the building. We are very proud to see our work displayed in this innovative and creative way!
Sanofi Atrium Photo


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OPAAL wins Sanofi UK Patient Group Bursary Gold Award

We are delighted to announce that Sanofi UK has awarded OPAAL the Gold Award in its 2014 Patient Group Bursary Scheme. The scheme supports initiatives across the UK that make a tangible difference to patient empowerment and education. By awarding a share of £50,000 to patient groups, the scheme aims to support organisations where promoting the needs and interests of patients is at the heart of their work.

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The GOLD AWARD  of £25,000 will allow us to set up a Cancer Patient Train the Trainer Programme

We plan to offer a standalone Cancer Patient “Train the Trainer” programme. In essence we plan to recruit and train older people affected by cancer to become Trainers able to train both Healthcare professionals and social care professionals. The nature of the training to be delivered will be to raise awareness among these professionals of independent advocacy, what it is, what it is not, how it complements other forms of care and most importantly how it supports older people affected by cancer to better cope with their lives.

The Sanofi UK funding will enable us to raise the status of the patient voice to have a real impact on health and social care practice. There will be two referral pathways for prospective cancer patient volunteer trainers, from Macmillan’s Cancer Voices national volunteer database and from local volunteer referral pathways set up and managed by local Cancer, Older People and Advocacy delivery partners. OPAAL and her local partners Dorset Advocacy and Help and Care in Dorset, Beth Johnson Foundation in Staffordshire and Sefton Pensioners Advocacy Centre will recruit, train and supervise volunteer cancer patient trainers. Macmillan Cancer Support will adopt an information and advisory role for this project.

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We’re very excited about this work which will complement the Cancer Older People and Advocacy project.

Baroness Neuberger DBE and Patient Group Bursary Scheme judge said:.”This year’s winners all demonstrated tremendous passion and commitment to the people they set out to support. The projects selected for bursary awards are all very different. However, whether it be improving advocacy for older cancer patients, establishing the first peer support network in the UK for people with TB or providing mentoring to develop local support groups for families affected by fundamental diseases, the judges strongly believe that all three projects have the potential to have a significant impact on the lives of patients and those who care for them. We wish the groups all the very best of luck with their projects.”

OPAAL’s Chief Executive Kath Parson said: “We are all absolutely delighted to be this years winners of the Sanofi UK Gold Award. This money will enable us to train older people affected by cancer to themselves become Trainers able to deliver advocacy training to local health and social care commissioners. We aim to improve commissioners knowledge and understanding of independent advocacy services by learning directly from service users.”

Dr Mark Toms, Medical Director of Sanofi UK and Ireland commented:“Advocacy groups play an important role in championing the needs of patients and Sanofi UK is committed to supporting groups who strive to improve care and empower patients through the Sanofi Patient Group Bursary Scheme. Now in its fourth consecutive year we still continue to be impressed by the passion and unrelenting tenacity of patient groups in delivering exceptional programmes that make a lasting difference to the lives of patients across the UK.”

Look out for further information as the project gets under way in the Autumn.

Marie McWilliams, OPAAL


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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.

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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


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Mind the Gap: Voluntary sector could bridge the integration gap.

Marion Summers_0153I spoke last week for the first time at the annual NHS Confederation Conference, where both Jeremy Hunt and Norman Lamb hailed the “enthusiasm” for integration, which has seen £5.2bn of health and care budgets pooled; well exceeding the proposed £3.8bn.

I’d been invited to speak about our ground breaking national Cancer Older People and Advocacy project, developed and supported by Macmillan Cancer Support and the Big Lottery Flagship team’s recent £1,000,000 investment. I was fortunate to share a platform with distinguished colleagues including Richard Bowden UK Managing Director BUPA, Caroline Abrahams Charity Director from Age UK and Ian sutherland Director of Social Care – South Eastern Health and Social Care Trust NI, and my colleague, a lady who completely stole the show Marion Summers a Volunteer Peer Advocate from Dorset.

Marion is a fairly typical cancer advocacy project volunteer. An ex member of the NHS Marion has a good professional understanding of how the health system operates, she’s been touched by cancer herself so is full of compassion and empathy for her peers and critically she is highly motivated to retrain as an Advocate and to ‘give something back’ providing a vital link and support to older people affected by cancer needing both health and social care. Marion supports people in need daily and often struggles to understand why we don’t work more closely together to pool resources and provide personalised integrated care as ‘after all we are all trying to do the best we can for the same person’. Marion is right of course.

I’m with Mike Adamson, Managing Director, British Red Cross when he argues today in his excellent article in Community Care that the voluntary sector is key to health and social care integration, not an optional extra, a truly preventative system will need more than the integration of the NHS and social services. As Parliament debates health, including the Better Care Fund today, we urge the government to regard voluntary organisations as a core part of the health and social care system, not merely as an optional extra – not least because of our experience in bridging gaps between these services.

I’ve reproduced much of Mike’s article below as I feel he encapsulates my views on the thorny subject of integration entirely.

For years, the voluntary sector has added significant value to the work of health and social care professionals, in many areas essentially helping to integrate them. According to the King’s Fund, three million people across England already volunteer in health and social care. The benefits are many and by no means purely financial. For many individuals the company of a dedicated and passionate volunteer can be invaluable, particularly when needs are primarily practical and social and linked to isolation.

The link between people living lonely, isolated lives and deterioration of their physical and mental health is widely acknowledged, including by Norman Lamb. Providing low-level, but high-impact, preventative support through volunteering opportunities enables more people to play a role in looking after our ageing population in the community, including older people themselves.

If the Better Care Fund is going to keep people out of hospital and result in better care, the role of the voluntary sector in delivering it needs to be strengthened. We specifically want health and wellbeing Boards to be mandated to engage with the voluntary sector as an equal and active partner in planning and delivering the Better Care Fund.

We want recognition that, particularly in the context of limited public funds, only a true tripartite of health, care and the voluntary and community sector will achieve the Better Care Fund’s aims. Lessons need to be learnt from Scotland’s Change Fund, where engagement with the voluntary and community sector is now mandatory, after the first year of funding resulted in little of its ambition to innovate and transform. ‘Third Sector Interfaces’ now ensure this engagement happens.

There is further to go, but the learning is there – ready for us to utilise. The mandate has secured legitimate and meaningful engagement, and the vast majority of Third Sector Interfaces report that their partners now have a much stronger understanding of the sector, what it has to offer and the expertise it brings.

Within the context of an ageing population, the voluntary sector has a crucial role to play in creating a sustainable health and social care system. Many hospitals already work closely with both social services and voluntary sector organisations like the Red Cross and see volunteers as an integral part of their team, particularly when it comes to discharging patients – but this is by no means consistent. The Better Care Fund offers our best chance to replicate this integrated practice across the system. By engaging the voluntary sector and focusing on preventative services, health and wellbeing boards can utilise the Better Care Fund in a way that improves the sustainability of the system.

Only by health, social care and voluntary sector services working together will we be able to provide adequate care to all who need it, and we believe that none can fulfil their true potential without the support of the other. The challenge is to make the most of these opportunities – and the Better Care Fund is one we should seize.


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Supporting carers – additional funds secured by Dorset Macmillan Advocacy

Dorset Macmillan Advocacy, a new partnership between Help and Care, Dorset Advocacy and Macmillan Cancer Support, has been successful in its bid for funding to extend its help to carers.

‘We recognise that carers of people with a cancer diagnosis need support in their own right – separate from that being provided to the older person with the cancer diagnosis.  We also understand that carers who have their own cancer diagnosis need additional support to consider the impact of their diagnosis on their caring role and the ongoing needs of the cared for person’ says Keri Harrison, Access and Community Support Manager at Help and Care.

Keri Harrison

Keri Harrison

Evidence gathered locally during the pilot phase led the Dorset Local Cancer Champions Board to seek additional funding for a carers support planning service over and above the three year’s funding already secured from regional Macmillan Cancer Support.   The team was successful in an application for one year’s funding to the Dorset Carers Support Project Fund facilitated by Access Dorset on behalf of Dorset County Council and Dorset Clinical Commissioning Group.

These issues were highlighted for Macmillan Project Coordinator Kathleen Gillett recently when reading the Carers Trust report on mental health Triangle of Care . The section on Carer Support which seems to apply equally to people affected by cancer underlines how important it is to offer ongoing support to carers: ‘It is rarely sufficient to carry out a carer’s needs assessment in a one-off interview. This may be the first occasion when the carer’s interests have been addressed and their primary need may be to off-load and explore better care for the person they care for, rather than their own needs.  As rapport and confidence in the process develop there will be a more meaningful exchange of information and insights.’

Jo Lee

Jo Lee

Jo Lee, Senior Macmillan Advocate says ‘Using person-centred thinking tools we will work with carers affected by cancer to identify what is important to them, what changes they want to make to their life, how they want to be supported and who they want to be supported by.  We recognise that with improving survival rates, carers affected by cancer may be caring for a long time and need ongoing and consistent support.  We also understand that carers support needs will change depending on where they, or the person they are caring for, are on their cancer journey.’


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About Cancer, Older People and Advocacy

This is the blog of the Cancer, Older People and Advocacy programme. Advocacy is all about Voice, Choice and Control and our programme is about putting that into practice.

We began our innovative project in July 2012 recruiting older people affected by cancer then training and supporting them to advocate for their peers. Between July 2012 and March 2014 we trained 56 peer advocates who in turn provided independent advocacy support to 174 older people affected by cancer. We also recruited 62 older people affected by cancer as National and Local Cancer Champions, these people are now very influential helping us shape and guide our project. On 25th March 2014 we published our first book ‘Every Step of the Way“: 13 stories illustrating the difference independent advocacy support makes to older people affected by cancer. Click here to find out how to download or order your FREE copy.

From May 1st 2014 thanks to continuing support from BIG Lottery Fund and Macmillan Cancer Support, the project expanded to include 9 delivery partners across England and for the first time 1 in Wales.

These partners have been delivering services from the outset: Beth Johnson Foundation in Staffordshire; Dorset Advocacy and Help & Care in Dorset and Sefton Pensioners’ Advocacy Centre in Sefton.

These new partners began delivering services during 2014: AgeUK Bristol; Knowsley Pensioners Advocacy Information Service (KPAIS); Oxfordshire Advocacy; Independent Community Advocacy Network North (ICANN) in Lancashire; Sandwell Advocacy;  and Age Connects Cardiff.  In 2015 we’re delighted to welcome new delivery partner Impetus who will be delivering services in Brighton and Hove.  If you click on the names of our local partners above you will be taken to their websites where you can find out their contact details.

You can learn more about our work by following this blog, just add your email address in the Follow box on the right hand side of this page. We update the blog regularly with news and stories covering cancer, older people and advocacy. Find out more by reading below…


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Expanded Cancer, Older People and Advocacy project gets under way tomorrow

Following our Silver Dreams Flagship award from BIG Lottery and additional funding support from Macmillan Cancer Support our newly expanded project gets under way officially from tomorrow.

In this video Kath Parson, Chief Executive of OPAAL, talks about the launch of our Flagship project. A number of new delivery and strategic partners will be joining partners from the original pilot project to expand our support for older people affected by cancer to a number of new locations. We’ll give more details on partners from tomorrow.


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Why is our project so special?

Andrew Booth, Chair of OPAAL, the Older People’s Advocacy Alliance, project managers of the Cancer, Older People and Advocacy project, explains just why our project is so special.


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Find out why Macmillan is supporting our project

Following our successful funding application to BIG Lottery’s Silver Dreams Flagship Fund we recently held a celebration event to look back at the many achievements of the pilot project and to launch the newly expanded Cancer, Older People and Advocacy project which will kick off in earnest on 1st May.

At the event hosted by Macmillan Cancer Support, Jagtar Dhanda, Head of Patient Experience at Macmillan, explained why our project is so important for older people affected by cancer. Find out what Jagtar had to say by watching the short video clip below.


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We did it! £1,000,000 Landmark award for older people’s cancer advocacy services.

The OPAAL – Macmillan Cancer Support Partnership is thrilled to announce an additional investment of £1,000,000 by the Big Lottery’s Silver Dreams programme in Association with the Daily Mail to their Cancer Older People and Advocacy Programme – COPA.

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During the last two years OPAAL and Macmillan Cancer Support have worked hard to make sure that over 170 older people are supported and enabled to exercise their rights, express their views, explore and make informed choices about their treatment and care.

The Flagship £1 million over the next three years will ensure we are able to extend our service to reach many more older people across England adding Bristol, Sandwell, Knowsley, Oxfordshire and Lancashire to pilot services in Sefton, Staffordshire and Dorset. Together over the next three years our new services will add over 300 new volunteers supporting over 1,000 older people affected by cancer to our national cancer support programme. So successful is our pilot three original partners secured three years continuation funding to expand their work in Dorset and Staffordshire.

This is a huge boost for OPAAL and we are deeply indebted to Macmillan Cancer Support who provided this funding as our new delivery partners will receive expert coaching and advice from these partners to get their new services off to a flying start. They will be the first to benefit from all the learning generated by our pilot.

Jagtar Dhanda, Head of Inclusion, Macmillan Cancer Support said: “We’re extremely proud of what this partnership has achieved. Securing this funding is a validation of how important this work is. This funding will ensure that the project goes from strength to strength, by reaching an even greater number of older people affected by cancer. It’s also a reflection of how partnerships can truly make a tangible difference.”

 More than one in three of us will get cancer, and for most of us it will be the toughest fight we ever face. People living with cancer are starting down a journey into the unknown. Attempting to navigate a complex system whilst making speedy decisions about treatment choices and rights, the experience of accessing health and social care services can be confusing, isolating and frightening. Older patients and carers often experience a loss of choice and control.

Since July 2012 with the Silver Dreams Pilot fund and additional funds from Macmillan we supported over 170 older people affected by cancer across Dorset, Stoke on Trent, Gateshead and Southport. We recruited and trained older people who themselves have been touched by cancer, to provide advocacy support to their peers. Since then OPAAL and Macmillan Cancer Support have proved that for some older people, particularly those who have no one else to speak for them, having an advocate can be a real life-saver.

Consider the statements below from just a handful of those we’ve helped speaking about the volunteer advocates who supported them:-

Ron ‘I will not have to go to another appointment alone’

Alec ‘Janet and I are now making plans for when I’m gone’

David ‘I still don’t think I’d be here if I didn’t have your support’

Elaine ‘When you say you are going to be there for me I know you will be’

 These people along with 173 other older people we’ve supported faced emotional trauma, anger, isolation, and the complete disorientation experienced by so many upon hearing a cancer diagnosis. They revealed real worries concerning caring responsibilities for loved ones, how to cope with the after effects of surgery, how to tell family members, find suitable accommodation, secure benefits, sort out debt, speak with health professionals to agree treatment and care and for the terminally ill how to plan for the end of life. These are just a handful of the issues faced by the older people we’ve helped.

Our deeply committed 62 Local and National Cancer Champions have done an amazing job promoting advocacy services and supporting our amazing 56 Volunteer Advocates. All advocates took time to build that all important trusting relationship enabling older people to confide worries and concerns. Our advocates, all of whom have experienced cancer themselves, understand the impact of a cancer diagnosis on the individual and are able to address worries and concerns with skill and sensitivity.  We are indebted to them and the staff and champions who supported them.

Older Volunteer Advocates also gain a great deal from their advocacy work. They told us:-

 “It’s working directly with older people affected by cancer that’s the best part of volunteering. I can see first-hand how cancer advocacy is improving the lives of individual older people affected by cancer who might otherwise not have been supported. It’s that which makes it all worthwhile.”

“As a volunteer advocate I was asked to be a cancer champion representative at national meetings alongside other project partners under the leadership of OPAAL. As well as opportunities to share good practice these meetings established the National Cancer Champions Board and agreed terms of reference, project plans and evaluation methodology and also supported applications to further develop and expand the cancer advocacy service. It’s great to think that I can feed in ideas and suggestions that  directly influence national service delivery and I can take back ideas to consider locally.

I am thrilled that we are able to extend our work to more and more older people up and down the country. When older people hear of our services the first question is often ‘Why don’t we have an advocacy service like this?” now thanks to the Flagship Silver Dreams Fund and the continued support of Macmillan Cancer Support we can offer more older people the support and help they need.

We believe we have gone some way to proving that together we can support older people affected by cancer in real and meaningful ways to improve their understanding and management of the impact of cancer and also help them achieve lasting change and improvement in their every day lives.

That we have enjoyed this level of success is entirely down to the dedication and commitment of ALL our partners. We will continue to work with our eight strategic partners, six new Resource and Development Partners and our Local and National Cancer Champions. We will also create a new Health Professionals Board to help us work more closely with our health colleagues. Together we number 23 organisations plus many more represented on local and national cancer champions boards, over the next few weeks we will feature articles on the role of each of these partners supporting our project. I’d like to thank them all for their continued support, we simply would not be doing this work were it not for you.