Macmillan Cancer Support has created a role of Cancer Support Worker and posts are currently being filled at the three Trusts in Dorset. Deborah-Lynn Wilkinson is helping patients at Royal Bournemouth Hospital with accessing information and support based on an assessment of their needs using the electronic Holistic Needs Assessment (eHNA). If that sounds like a bit of a mouthful then it’s worth noting that Deborah-Lynn is very careful to avoid jargon when speaking with patients. What the patient experiences is a friendly and informal conversation focused on their wellbeing.
Deborah-Lynn Wilkinson
Deborah-Lynn visited Jo Lee at Help and Care to get an understanding of independent advocacy support from Dorset Macmillan Advocacy and find out what else the organisation can offer locally. Then Kathleen Gillett visited Deborah-Lynn at the hospital to hear more about the scope of the Support Worker role. Patients can complete the eHNA questionnaire in clinic on a tablet or at home via a web-link and the results form the basis of a care plan. At present Deborah-Lynn is working on one cancer pathway and will contact patients at three points in their cancer journey to ensure to pick up changing needs.
The Support Worker posts will enable the Clinical Nurse Specialists to use their clinical knowledge and time to best effect and widen the skill mix in the department. Macmillan Cancer Support’s latest report on workforce From the Frontline includes recommendations to do just this. We are hopeful that the eHNAs will spotlight where there is a need for advocacy support and that the Support Workers will refer to the advocacy service.
Bob Smith, peer volunteer advocate with Dorset Macmillan Advocacy, can be relied upon to reach the parts that others cannot reach and last week was no exception. Bob was invited by the Senior Therapy Radiographers to tour the Radiotherapy Department in the basement at Poole Hospital after giving a presentation to the radiotherapy team. He was shown all the equipment currently in use in the Dorset Cancer Centre and heard about the plans to upgrade the machines and manage a new service at Dorset County Hospital.
During his presentation Bob talked about the role of a peer volunteer cancer advocate, screened the film ‘David’s Story’ and then invited questions. Staff wanted to know about the capacity of the service, if the service could support family members as well as patients and how many different people a volunteer might be supporting at any one time. They also asked Bob to explain how volunteers maintained boundaries and handled the ending of advocacy partnerships.
Photograph shows Bob with L-R Katharine Spinks and Mandy Sydenham, Senior Therapy Radiographers.
Bob has been leading on the Older People’s Cancer Voices project in Dorset and has made presentations to many different audiences including the Afterglow Support Group for patients completing radiotherapy treatment at Poole. The result of the additional promotional activity has meant that meant that referrals have increased, especially those from health professionals, and staff are now able to spend more time supporting advocacy partners and volunteer advocates.
Research and technological advances mean that new cancer treatments are continually coming on stream. This is good to know given that the number of people living with a cancer diagnosis in the UK is set to double from more than 2 million in 2010 to 4 million by 2030. But what about the people who actually help those affected by cancer, doctors and nurses for example. How is the cancer workforce keeping up with change and preparing for the future?
In February of this year Thinking Differently Macmillan’s vision for the future cancer workforce in England was published. In the Foreword Dr Fran Woodard, Executive Director of Policy and Impact, states: ‘We believe that the workforce needs to be equipped with the capacity, confidence and skills to identify and address holistic needs, to tailor follow-up care and support people to self-manage.’
The current challenges facing the cancer workforce include:
rising demand for services and increasing complexity – e.g. people living with multiple long term conditions
poor coordination and communication leading to lack of support for recovery
Macmillan calls on Health Education England and the NHS at national, regional and local level to work strategically to ensure people living with cancer experience well-coordinated continuity of care: ‘Our vision is for a workforce that can deliver holistic, patient-centred care and support. It is based on understanding the needs of people living with cancer and the access they need to other services that will contribute to their care.’
The report explains that ‘Delivering truly patient-centred care means ensuring that people are supported before, during and after treatment… Without the right workforce in place, they … may not have the support they need to optimise their quality of life after treatment. They may not always know who to contact for support nor how best to do so. We know they do not always have enough time to talk through all their concerns or be supported with non-clinical issues, such as financial support.’
Macmillan recognises that ‘Volunteers and people affected by cancer, including carers, also have an important part to play in the cancer care team’. My personal view is that highly trained professionals can fail to see the full potential of volunteers. Peer volunteer advocates are entirely patient or person-centred in their approach as the very nature of advocacy demands that it is led by the service user or advocacy partner as we prefer to call them. Volunteer advocates specialise in finding things out, sourcing additional support and facilitating ways to access that support. Volunteer advocates have time to listen and to build a trusting relationship. Volunteer advocates will not offer clinical support but they will help to ensure people can understand information that they are given and feel ready to make informed choices about treatment and care as well as exploring practical and financial support needs.
The report goes on to say ‘Encouraging retention of staff will also be hugely important, as will looking at the potential of retired professionals as volunteers.’ In Dorset we have proven that staff who reach retirement age can be retained in the workforce by the offer of challenging and rewarding volunteer roles such as providing independent advocacy support. Time our Gift to You includes the stories of several former health professionals. Mike Goodman, retired Clinical Nurse Specialist from Dorset Macmillan Advocacy rightly observes: ‘After many years as a health professional you do build up a wealth of expertise and numerous medical contacts which it seems a waste to suddenly abandon just because you retire.’
The Macmillan report recommends next steps and advises that ‘Solutions will be unique to each local context and will require the input of a variety of local stakeholders, including Cancer Alliances, Sustainability & Transformation Plans and local NHS providers.’ We are trying to help colleagues in statutory services in Dorset to understand what trained peer volunteer advocates can do and how they are contributing to the skill mix of the cancer care workforce for the benefit of people affected by cancer locally.
Kathleen Gillett, Macmillan Project Coordinator, Dorset Macmillan Advocacy, Help & Care
We keep on top of new services and sources of support for people affected by cancer in Dorset because we recognise that people can benefit from many different types of help. Regional charity Wessex Cancer Trust opened a support centre in Bournemouth last year which is open three days a week for people to drop in.
The centre manager, Emma Ormrod, recently visited us at Help and Care and met Advocacy Manager, Naomi Unwin, Macmillan Senior Advocates/Coordinators Jo Lee and Kathleen Gillett. We discussed how our two services dovetail. The drop in is ideal for people who are able to get out and about and would benefit from conversation with trained volunteers and other people affected by cancer on an adhoc basis. Our service is ideal for those who find it more difficult to travel for whatever reason and offers regular support through an on going partnership with one trained volunteer. We can also give support at the person’s home and accompany them to medical appointments.
Naomi Unwin, Advocacy Manager, Help and Care; Emma Ormrod, Bournemouth Support Centre Manager, Jo Lee, Senior Advocate, Dorset Macmillan Advocacy
We’ve created an ‘at a glance’ document to help the volunteers at each service be aware of what the other service offers to facilitate signposting and referrals. In fact our services already share a volunteer and advocates have visited the centre to accompany people who asked for support in going there for the first time. We look forward to continuing to work in partnership for the benefit of local people.
The Dorset Macmillan Advocacy steering group (Cancer in Older People Development Group) met at Lewis Manning Hospice on a sunny day in Spring with the usual packed agenda.
A key discussion topic was how learning from the advocacy services can feed in to local service improvement. We noted how the team of peer advocates from Getting Heard in Oxfordshire had produced a report with suggestions which had been well received by the local Trust.
There were plenty of informed contributors: Tracy Street, Macmillan Engagement Coordinator for Dorset attended to lead the discussion on user involvement (Tracy had been responsible for patient involvement at the Dorset Cancer Network); Paula Bull who has joined the steering group has been a part of the Dorset Cancer Patient group for many years; Lynn Cherrett, Lead Cancer Nurse at Poole Hospital is working closely with the new Dorset Cancer Partnership (DCP) (the local Cancer Alliance). Together with the DCP chair Lynn is working to create a new Dorset Cancer Patient Experience Group.
Informal discussions after the meeting Front L to R Julie Cook, Acute Oncology Nurse, Dorset County Hospital, Rachael Brastock, Macmillan Psychological Support Lead, Genevieve Holmes, Macmillan Coordinator/ Senior Advocate for Dorset Macmillan Advocacy at Dorset Advocacy, Cait Allen, CEO Wessex Cancer Trust Back L to R Graham Willetts and Charles Campion-Smith
It was agreed that the advocacy service will have a part to play in future local cancer service improvement. People affected by cancer (patients and carers) are steering the service, delivering the service and benefiting from the service. They have unique insight into how people in Dorset are experiencing the current cancer care pathways which can be usefully added to the views of trained patient representatives.
Bob Smith, peer volunteer advocate and Paula Bull
The group also welcomed Cait Allen, Chief Executive of regional charity Wessex Cancer Trust as a guest. Cait gave an update on the development of services in Dorset including the Bournemouth Cancer Support Centre which offers drop in support.
Kath Curley of Cancer, Older People and Advocacy delivery partner Beth Johnson Foundation and Staffs & Wolves Cancer Advocacy and Support Project Manager shares a post recently published on their own project blog. She tells us about her attendance at a recent conference marking Dying Matters Week:
Dying Matters Week in Staffordshire was celebrated by a Palliative and End of Life Conference organised by University Hospitals of North Midlands on Thursday 11th May. The Conference was entitled “I didn’t want that: Why patients’ wishes matter” and was attended by over 250 delegates from across the Midlands. BJF had a stand to promote the dementia and cancer advocacy projects and was therefore able to join the Conference.
The conference was packed
There were some eminent speakers including Dr Sara Russell, Head of Research and Clinical Innovation at Hospice UK, who showed a very thought provoking film from ZdoggMD; “Ain’t the way to die” which you can find here
Sara’s message was that professionals should be asking “What matters to you?” rather than “What’s the matter with you?”
Amanda Cheesley, Professional Lead Long Term Conditions and End of Life Care with the Royal College of Nursing followed on and very much reiterated Sarah’s messages. She opened by talking about the “essence” of the person – who we are, what we are – doesn’t go away when someone dies or is dying. We should look at what is important to people emotionally, physically and spiritually.
Jan Cooper, Regional Liaison Advisor at the General Medical Council discussed the End of Life/ Palliative Care Guidance. Decision making should be a partnership and this will require a change of culture. At one time professionals made the decisions, then it swung to patients making the decision but it should be co-production – joint decision after listening, discussing and sharing information.
After lunch there were two more “professionals “ presentations from Claire Henry – the Chief Executive Officer of the National Council for Palliative Care and Dr Katherine Bristowe , a post-doctoral researcher at the Cicely Saunders Institute, Kings College, London. She has a particular interest in widening access to palliative care, and recently worked on the ACCESSCare project (funded by Marie Curie), a national qualitative interview study of LGBT people facing advanced illness and bereavement.
At this Conference the best was most definitely left until the end. The Conference closed with a presentation from Tommy Whitelaw, Project Engagement Lead for Dementia Carer Voices. He was a carer for his late mother Joan for 5 years as she had vascular dementia. He told us about his beautiful mother, Joan Whitelaw, NOT the disruptive lady in bed 6! He talked about his experiences with health professionals during his time as a carer and the importance of reassuring carers that they are doing a wonderful job.
Tommy travels across Scotland to raise awareness of the impact of dementia on families and the importance of empowering carers to carry out their difficult but vital role. Lessons to be learnt for people caring for someone with any terminal condition. There was not a dry eye in the Conference!
Joe Potts, Macmillan End of Life Care Facilitator, University Hospitals of North Midlands is to be congratulated on a stimulating, thought provoking conference – a job really well done.
Kath Curley, Staffs & Wolves Cancer Advocacy and Support Project Manager
The volunteers who have shared their stories in Time: Our Gift to You come from all walks of life but I felt it was significant that several were retired Health or Social Care Professionals. I wanted to know more about what motivates them to train as an advocate so I asked Mike Goodman, a newly retired Clinical Nurse Specialist who joined Dorset Macmillan Advocacy last year, why he volunteers and what he feels former Health Professionals in particular can bring to the role. Kathleen Gillett, Coordinator, Dorset Macmillan Advocacy
‘I was interested in becoming an advocate because, despite being retired, I still have an interest in helping people live with and recover from a diagnosis of cancer. After many years as a health professional you do build up a wealth of expertise and numerous medical contacts which it seems a waste to suddenly abandon just because you retire. The transition from professional to volunteer is a tricky one and it can be rather easy to slip back into a formal or professional approach to a situation rather than acting and speaking as a lay person – or simply imagining being the patient. However empathetic professionals think they are, because they have been trained/educated and because they are busy they quickly slip into “professional” mode and forget just what it is like being a confused, slightly scared, often lonely recipient of health care services.
Mike Goodman
I am sure advocates can be effective whether they have been cancer patients themselves, or have been the carer of someone with cancer or have been health care professionals. All those experiences will enable you to be a help and support. They would all bring different skills and abilities to the many and varied problems that the cancer partner is grappling with. Probably the greatest skill lies with the Macmillan Senior Advocate or Volunteer Coordinator in choosing which advocate to link up with each new partner.
Health Care professionals do have the ability to understand how the wheels turn in a hospital department or what a GP really needs to know in order to change the experience for a patient who is in a crisis. They will understand that it is hard to get something done on a Friday afternoon when most departments in a hospital are winding down for the weekend or that a referral between teams will have to go through an MDT meeting before a decision is made. Explaining that there is no simple blood test or screening process for some cancers comes as a shock to some people in the community who are reading the tabloids and grasping at every tiny news item that has the word cancer in its headline.
Retired professionals can play an important role in advocacy but, at the end of the day, it is that human touch, that word of encouragement, that listening ear that every person affected by cancer needs and wants and that is a role that every advocate seeks to fulfil.’
Kathleen Gillett of Dorset Macmillan Advocacy (DMA) tells us about the acknowledgement that someone is needed to act as the “glue in the system”:
At the 2016 Macmillan Professionals national conference which I attended last autumn Fran Woodard, Executive Director of Policy and Impact, Macmillan Cancer Support, spoke about personal experience of cancer in her family and said that the system is impossibly difficult to navigate as treatment gets more complex and people are living with more co-morbidities. Her welcome address was about workforce. She said there is a need for a focus on coordination, navigation and support with one person who is the ‘glue in the system’.
A new role has been trialled in some parts of the country titled Macmillan Support Worker and a number of these posts will be funded by Macmillan in Dorset over the coming year. Support Workers will be based in hospital Trusts alongside clinical staff and there will be some flexibility for each Trust to define their role and which cancer pathways they will support.
During break time I spoke with Simon Philips, Executive Director of Strategy and Performance, Macmillan Cancer Support, about how the advocacy service might mesh with the new Support Worker roles in Dorset. I am hopeful that the Support Workers will have a remit to know about what support is available in the voluntary and community sector. We will offer them an opportunity to meet the peer volunteer advocates and hear directly about the difference advocacy makes to older people and carers.
Simon Philips and Kathleen Gillett attempt a selfie
Simon asked me about volunteer retention and whether we had any problems keeping volunteers. I was glad to be able to tell him that we still have on the team several of the volunteers we recruited for our pilot phase in 2012. The size of our volunteer team is growing every year because despite a few volunteers retiring or going on to other roles such as hospital governor the majority are staying because they are so passionately committed to their roles. They always arrive for their informal interview with a high level of motivation but once they are trained and ‘matched’ with an adovacy partner that motivation only increases as they see the real difference they are making to people’s lives. No two advocacy partnerships are the same and so the volunteers tackle the challenges that each new case brings with great energy. They frequently tell us of the emotional rewards that they gain from the role.
As a service we benefit enormously from retaining a team of trained peer volunteer advocates that has increasing experience. In fact at our most recent volunteer networking forum at Help and Care my colleague Jo Lee and I were completely left out of most of the discussion while new and more seasoned advocates got to grips with a case study. Could peer volunteer advocates work closely with the new Support Workers to be ‘the glue in the system’ that Fran would like to see?
Can you see peer advocates as part of the answer? Let us know what you think.
What stops health professionals signposting to services like our peer advocacy support service? In today’s post Kathleen Gillett of Dorset Macmillan Advocacy tells us what some Macmillan Health Professionals feel is the reason:
There are over 9000 Macmillan professionals working across the UK in a wide range of roles. Those of us in cancer advocacy services that are funded directly by Macmillan Cancer Support are labelled Macmillan professionals. Once a year we are invited by Macmillan to a national conference and I was fortunate to attend for the first time last autumn.
Lynda Thomas, CEO of Macmillan welcomed the 300 participants and began her keynote speech with some statistics. In 2015 Macmillan reached 5.8M people in total and Macmillan professionals supported 600,000 people.
Lynda said that in her view face to face support is the most impactful. I see the impact that our peer volunteers have every day by actually being there in person for their advocacy partner and I couldn’t agree more. She went on to say that her aim is to focus on areas of most severe need and on what makes the biggest impact. She believes that the best services and support need to be local and need to understand the needs of the local population.
The majority of Macmillan professionals are in clinical roles and this was reflected in the attendance at the conference. There were two representatives of the Cancer Older People and Advocacy projects, me and Kath Curley from Staffordshire and Wolverhampton Cancer Advocacy at the Beth Johnson Foundation as well as a number of Macmillan Welfare Benefits Advisors from across the country and the team of Support Workers at Brain Tumour Support who are funded by Macmillan.
Kath Curley, Staffs and Wolverhampton Cancer Advocacy and Kathleen Gillett, Dorset Macmillan Advocacy
Every year conference delegates are asked a number of questions and respond with live voting gadgets. The first 2016 question was ‘What is the biggest barrier to Macmillan professionals in signposting people affected by cancer to sources of support in the voluntary and community sector?’ This question appeared to be aimed at the Health professionals. The top three answers from options given were: 33% Lack of knowledge of what is available; 25% Holistic Needs Assessment (HNA) is not routinely done; and 25% Health leaders and managers don’t see it as the responsibility of Health professionals.
The question which led on from this “What would make the biggest difference to help Macmillan professionals to signpost to support?” saw 56% respond Access to clear information on what is available, how and where to signpost to; and 24% respond HNA.
I took away from this that Macmillan professionals in clinical roles want to signpost to support outside of Health but don’t yet feel that they have an easy way of finding out what support is out there and what the most appropriate time to refer would be. Those of us providing services such as peer volunteer advocacy have not always found it easy to make those working in Health aware of our service and to find opportunities to educate them to understand the benefits of advocacy and its relevance at all stages in the cancer journey. At the next conference in autumn 2017 Macmillan Cancer Support will report back to delegates on the steps it has taken to improve access to this knowledge.
Our Local Cancer Champions Board, the steering group for Dorset Macmillan Advocacy, changed its name in 2014 to Cancer in Older People Development Group. Members wanted to create a group that could, in addition to overseeing our service at strategic level, bring together people interested in improving patient experience for people over 50 affected by cancer and their carers. They felt that the new name was more self explanatory and we are fortunate to have an interesting mix of people on the group.
As Dorset Macmillan Advocacy is delivered by two organisations in partnership the steering group sought to meet alternately on different sides of the county. Meetings have been hosted since 2014 by Lewis Manning Hospice in Poole and since last year by Joseph Weld Hospice in Dorchester. We have benefited from learning about the hospices and our presence there has raised our profile with their staff and visitors.
We also invite local guests to the group meetings such as the project lead for the Macmillan Information Scoping Project which took place last year and the director of Dorset Living Well Active, a physical activity project which is a partnership between Macmillan and Sport England. The group can explore joint working at both strategic and operational level and this really enhances the daily networking that staff and volunteer advocates do.
The new Chief Executive of Weldmar Hospice Care Trust, Caroline Hamblett, joined our last meeting in May and described the variety of community services that the hospice provides. Senior Sister Sally-Anne Baverstock then gave the group a tour of the facilities which include 14 in-patient beds all with views over the beautiful garden and countryside beyond. We’ll arrange a visit for our team of volunteer advocates in the near future.
Pictured left to right are Sally-Anne, Paul Hickman, Chair of Trustees at Help and Care, Emily Brown, Senior Volunteer Coordinator at Dorset Advocacy, Jenny Rimmer, Macmillan Senior Advocate at Dorset Advocacy, Bob Smith, volunteer advocate.
Older People Living with Cancer 