Graham Willetts, chair of Dorset Macmillan Advocacy’s Cancer in Older People Development Group has participated, along with other group members, volunteer advocates and staff, in recent consultations by Dorset Clinical Commissioning Group (CCG) about Cancer and End of Life services.
Two Public, Patient and Carer consultation events asked ‘What is good about current services and what could be better?’ and the Stakeholder (service providers from NHS and other sectors) consultation event asked participants to consider the collected responses to this question and to discuss in groups five areas including:
What does it mean to plan and tailor cancer care around patients and carers?
Do we need to focus more on survivorship? What do we need to do to support increasing number of patients living with cancer for 5 years or more?
The Cancer and End of Life Services clinical commissioning programme (CCP) is one of six set up by the Dorset CCG. The CCP is reviewing the priorities set in 2013 and looking to future trends and challenges, including the Better Together programme for integrated locality health and social care teams. The Dorset CCG will also launch a Clinical Services Review in the autumn.
Within the groups and during the closing plenary we described the benefits of independent advocacy to cancer patients and their carers and distributed copies of the case studies publication Every Step of the Way. Tracy Street, Regional Macmillan Involvement Coordinator, described the benefits of support groups. Tracy and Paula Bond, Regional Macmillan Development Manager, were invited to facilitate two of the discussion groups.
In summing up Dr Lionel Cartwright, a local GP and clinical chair of the Cancer and End of Life CCP, said he was encouraged by the discussions. He also said that he would like people to be empowered in terms of deciding the type of care that they want.
Pictured Sarah Turner, Principal Programme Lead, Dorset CCG and Graham Willetts
Last week I attended a Macmillan Cancer Support event and had a fantastic opportunity to promote the Cancer, Older People and Advocacy project to the clinical nurse specialists delivering care every day to older people affected by cancer in Sefton.
The event was aimed at people of all ages who were about to undergo or had recently completed treatment. It was an opportunity to show them what support is available to them locally. We were told by the Macmillan team that evaluations from similar events nationally have really helped patients gain more confidence in self-managing the post treatment phase of their cancer.
Cancer, Older People and Advocacy service leaflet
Armed with copies of the new leaflet and the advocacy stories I arrived hoping to raise awareness amongst the health professionals. I was not disappointed and during the three hours that the event took place I was able spend time speaking with the following professionals: Lymphoedema Nurse, Acute Oncology Cancer Nurse Specialist, Palliative Care Nurse Specialist, Lung Cancer Nurse Specialist, Head and Neck Cancer Nurse Specialist, Dermatology Cancer Nurse Specialist, Urology Cancer Nurse Specialist, Colo-rectal Cancer Nurse Special, Medical Day Unit staff and Occupational Therapists.
Almost everyone was unaware of our service but could see immediately the value of it. Several nurses said they had seen someone already that day who would benefit from advocacy.
Helen Vernon, Cancer Advocacy Project, Sefton Pensioners’ Advocacy Centre
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.”
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.
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.
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.
To the volunteers and staff at Dorset Cancer Advocacy who are offering peer advocacy support to older people affected by cancer, in order to give them ‘voice, choice and control’, it is very clear why our working in partnership with health professionals would benefit patients. To health professionals focusing on clinical outcomes it may not be so clear why they should work in partnership with voluntary sector organisations.
Ways for individual health professionals to take action on health inequalities and how they might do this through using the resources provided by voluntary sector organisations is a theme running through the March 2013 report from UCL Institute of Health Equity: Working for Health Equity: The Role of Health Professionals.
Three extracts from the Executive Summary highlight the importance of the issue:
Workforce education and training
Key recommendations: Communication, partnership and advocacy skills will help professionals to tackle the social determinants of health…specific practice-based skills, such as taking a social history and referring patients to non-medical services…should be embedded in teaching courses.
Working with individuals and communities
Individual health professionals can tackle the social determinants of health by helping to create the conditions in which their patients have control over their lives. Giving information that can help to improve the social determinants of health mainly consists of referring patients to non-medical services. These should cover a broad range of sectors and issues, beyond lifestyle and disease management programmes….Such activity may reduce the number of consultations with and prescriptions from GPs.
Workforce as advocates
Professionals can use their understanding of the factors that are influencing a patient’s health, and act as advocate in order to help these patients to access services both within and outside the health service.