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.
Last year Tessa Watts described what she was learning from her first experience as a peer volunteer advocate with Dorset Macmillan Advocacy. Since then Tessa has supported several more advocacy partners but she has also continued to develop her skills with two other related roles. Tessa described her studies and her interest in health coaching at interview so when opportunities arose we ensured that Tessa heard about them. As a result Tessa is now a trained lay facilitator with the Macmillan HOPE course. HOPE (Helping to Overcome Problems Effectively) is a licensed programme developed by Coventry University and Macmillan Cancer Support to help people who have had/or have cancer to get on with their lives. More recently Tessa has begun a part time role at Help and Care as a Health Coach with My Health My Way which provides personalised support to people with long term conditions.
Tessa Watts
Through her initial link with us Tessa is now involved in three different approaches to self management; independent advocacy, group peer support and one to one coaching. Tessa says, ‘I decided to volunteer with Dorset Macmillan Advocacy because I believe I have the skills to support people during difficult times. When the coaching opportunity arose it felt like a very natural next step to use these skills so support people with long term health conditions.’
NHS Health Education England has a consultation open at the moment on a new volunteering strategy. It is aimed at developing the future workforce and focuses on bringing young people into Health and Social care. I think it’s a great idea and particularly like the emphasis on removing inequalities in volunteering but it did make me think of Tessa and how volunteering has been a way for her to kick-start a new career to which she brings her wealth of accumulated knowledge and experience. Tessa agreed, ‘I had no idea that volunteering would open up a new world for me. I am enjoying the work immensely and I feel like it does make a difference.’
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.
Katie Hunter, Dorset Cancer Partnership Cancer Services Coordinator at Dorset Clinical Commissioning Group has a wide remit which includes patient and public involvement. Katie came to Help and Care at the invitation of Sue Newell, Wessex Voices Project Lead to meet Jo Lee and Kathleen Gillett the coordinators of Dorset Macmillan Advocacy having already met colleagues at Dorset Advocacy.
Katie explained Dorset Cancer Partnership’s plans for improving cancer services in the county and we went on to discuss how volunteer advocates and advocacy partners might be able to share their views. Katie has already met with the chair of Dorset Macmillan Advocacy’s steering group, Cancer in Older People’s Development Group, and two peer volunteer advocates but will attend a future volunteer team meeting to hear more about why and how people affected by cancer are providing advocacy support and what they get out of it.
Kathleen and Jo suggested that volunteer advocates can often see immediate benefits of the help they are giving whereas taking action to improve cancer services can require a more long term view. Katie will be able to ask the volunteers how they would like to participate in the newly developed local involvement opportunities.
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.
We were delighted to be able to thank our volunteers around the time of Volunteers Week for the energy and enthusiasm they give to helping people affected by cancer in Dorset. Staff from Dorset Macmillan Advocacy delivery partners Help and Care and Dorset Advocacy along with Macmillan Partnership Quality Lead Paula Bond and Macmillan Volunteer Services Manager Sam Hudspith joined the volunteers for a very informal cream tea.
The volunteers were then presented with some donated goodies as well as certificates of appreciation from OPAAL. The garden at The Grove Hotel in Bournemouth, which is open to cancer patients and others with serious illness, was a perfect setting for the afternoon on what must have been the hottest day of the year.
The working group argues that ‘currently there is a negative cycle in cancer care, where a short-term approach leads to rising costs in cancer, makes fewer resources available, provides inadequate patient support which re-enforces the need for a short-term ‘just managing’ approach.’ It proposes ways to break the negative cycle.
To address this challenge, The Patients Association and Bristol-Myers Squibb are working alongside experts and patients from across the cancer space to identify new models of service delivery, showcase best practice, and provide real improvements in patient care.
The report discussion includes sections and recommendations on:
Identifying, incentivising and implementing best practice
Developing effective prevention strategies
Implementing best practice in the early diagnosis of cancer
Delivering timely access to treatment
Engaging patients in delivering innovative care pathways
To my mind the report blurs the issue of patient engagement and involvement in service improvement and that of individual patients who are ‘engaged’ and active in their own healthcare journey. Both are important and worthwhile while distinct from each other.
I think that the argument for ‘engaging patients in delivering innovative care pathways’ reads like a explanation of the benefits of independent advocacy support:
‘Educating patients with cancer about self-management and empowering them to play an active role in the decision-making process was considered to likely result in an improvement of patients’ knowledge, understanding of their condition, adherence to treatment and engagement in their healthcare. Whilst not all patients will want to play an active role in their treatment and care, it is important to provide patients with the opportunity and the choice to make their preferences clear and also tell us what a “good” treatment outcome looks like for them.
‘The Working Group described these users as “activated patients” who can lead the charge for the adoption of best practice care. According to Working Group attendees, the evidence suggests that “activated” and informed patients use an average of 20% fewer resources than less informed counterparts.’
Advocacy support is unfortunately still relatively unknown and it is not uncommon to read policy reports in both health and social care spheres that appear to describe it and recommend it without ever using the term. I believe that independent advocacy support and particularly that provided by peer volunteer advocates has a role to play in breaking the negative cycle of cancer care. It can certainly be preventative and facilitate timely access to treatment in addition to empowering patients. I would like to see it recognised as an integral part of the cancer care pathway, recognised as best practice and implemented nationally.
Today Kathleen Gillett of Dorset Macmillan Advocacy considers the barriers preventing older people affected by cancer accessing the help they need:
We explore the physical, emotional and attitudinal barriers that older people may face to speaking up for themselves in a case study about ‘Stan’ during our volunteer induction. In the case study Stan is given his cancer diagnosis and goes home alone without being offered any further sources of support or information. Stan’s story is part of the OPAAL Cancer, Older People and Advocacy national training pack for peer volunteer advocates. Stan is an archetype but in considering his story we put ourselves in the shoes of an older person facing cancer alone.At our most recent meeting for practising advocates we also considered a case study, this time a real one. Jo Lee, Senior Advocate and Coordinator, outlined the situation of advocacy partner ‘Kevin’. Kevin had got in touch with Dorset Macmillan Advocacy himself after seeing a Macmillan TV advert and then searching the internet for local support. Jo gave a brief overview of Kevin’s medical history, the advocacy issues that he identified at the first assessment and the issues that subsequently presented or were identified by her during that assessment.
A discussion ensued about potential courses of action and then Jo explained what had actually happened. The ethos of our service meant we were guided by the wishes of the advocacy partner at all times. There was a successful outcome in our having swiftly obtaining a grant and arranging the electrical upgrade and shower installation. There remained other ongoing and unresolved issues. At this point Jo ‘unmasked’ the volunteer advocate who was partnered with Kevin and we were able to question him more deeply.
Flip chart images from training
Why had Kevin become disengaged from his healthcare team and been missing his outpatient appointments?
Kevin had longstanding depression, he lived alone with no family in the UK. He was no longer employed owing to an alcohol problem which might have been linked to pressure at work. His lifestyle meant that he would often watch TV all night and sleep most of the day. Effects of surgery meant that it was extremely difficult for him to make himself understood on the telephone. Fatigue was affecting his mobility and he found public transport to attend appointments very inconvenient. His nutrition was not as good as it could be and he had continuing pain.
The outpatient appointments that Kevin was sent were invariably early in the morning. Kevin had his letters well organised in a file and knew when the appointments were but did not get up in time to go. Kevin was in contact with his GP surgery but always seemed to be seen by a different doctor so did not experience any continuity in his primary care.
So we discovered a complex interplay of practical, physical and mental factors affecting Kevin’s ‘patient experience’ and his ability to benefit from the healthcare on offer.
Kevin and his advocate enjoyed an afternoon visit to the seaside once the initial issues were resolved. It was a rare outing from the flat that was not about medical appointments for Kevin and an opportunity to get to know Kevin as a person for his advocate. The partnership continues and steps are being taken to investigate Kevin’s ongoing pain issues.
Health professionals are dependent upon patients engaging with them. The barriers to engagement that patients have will sometimes be outside of the scope of their role. Kevin’s advocate has worked with him to resolve the issue that was concerning him most, has coordinated his care in and outside hospital and paved the way for him to reengage with his healthcare team.
Older People Living with Cancer 