Recognising volunteers as part of the cancer care team

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

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Thanking our volunteers in Dorset

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.

Some of the group in a shady corner

Kathleen Gillett, Coordinator – Dorset Macmillan Advocacy

As Volunteers Week draws to a close…

Our Cancer, Older People and Advocacy programme would never have achieved what it has without our amazing volunteers. They’ve supported us as peer volunteer advocates as well as local and national cancer champions.

Those who have been directly affected by cancer themselves have determined to give something back, to support others going thorough the same trauma and to help ensure older people don’t face their cancer journey alone.

Some of their stories are told in Time: our gift to you, our most recent publication. Today, as Volunteers’ Week draws to a close for another year, we’d like to share Claire’s story with you:

I was diagnosed with breast cancer in 2013 and despite lots of treatment – chemotherapy, mastectomy, radiotherapy, reconstructive surgery and targeted drug therapies – I learnt in 2015 that my cancer had spread and I am now living with secondary breast cancer.

Last year, I decided to volunteer as a peer advocate in Oxfordshire because I could see at first hand, as I was going through my treatment, that there were many people who were struggling to find their way through the healthcare system in our area and to access the support they needed. It seemed obvious to me that a person who has been treated for cancer is potentially in a very strong position to support another person going through the same or similar treatment and experience.

One of the older people affected by cancer that I’ve supported is Sally (not her real name). She was diagnosed with breast cancer in 2015 and was referred to Oxfordshire Advocacy by her specialist breast nurse. Sally lives alone, struggles to get out and had become very isolated and depressed. When I first met her, she talked often about the diagnosis being the “final straw” and I recognised many of the feelings that I had felt when I was first diagnosed: anger, fear, sadness, even despair.

In the first few weeks when I visited Sally at her home, we often would just talk and share experiences and I know that she really appreciated that someone had taken the time to sit and listen and talk. I knew that when you are first diagnosed with cancer you do get quite a long appointment slot with your consultant and your specialist nurse, but you are in a state of shock and you can’t really take things in, and you are certainly not able to talk through how you are feeling. You need lots of time to process what is happening to you and it is weeks later when you are ready to really think about what is happening to you.

Since then, I have been able to help Sally in a number of ways. For example, I contacted Breast Cancer Care, I knew how good they were from my own experience, and ordered a number of information leaflets for her – some on treatments she had been advised to have, specific information on lymphedema and some on other issues such as her benefits entitlement. Sally suffers from cataracts as well and so I made sure I ordered the information in large print so that she could read the text.

Sally had a specific issue with one of her drugs that was making her feel unwell – I recognised the issue because I had suffered something similar – so I printed some information from the Macmillan Cancer Support website. Sally doesn’t have a computer or access to the internet. I took it to her and read it through for her. I also helped her prepare some questions about this for her next GP appointment and as a result she was able to discuss the issue with her doctor and get the drug changed to minimise the side effects.

Most recently I was able to help Sally with her application for a one-off Macmillan support grant – she wanted to use the money to help with her heating oil. She had being finding it difficult to fill in the form and so she dictated to me what she wanted to say in her application and I was able to write it down for her and I could use my experience to help with the spellings of all the drugs she was taking! She said that receiving the money was very important to her as it eased her worries about putting the heating on in the winter.

I hope that I have managed to convey that working with Sally has also been very rewarding for me. Cancer treatment is often quite technical and complicated and over time you are forced to become quite an expert in the healthcare system and how to get support. I am really glad to be able to put my experience to good use.

Our final thought this Volunteers’ Week is the adage: “Volunteers are not paid, not because they are worthless but because they are priceless.” So thank you to volunteers everywhere.

Face to face support has the most impact

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.

Kathleen Gillett, Macmillan Project Coordinator, Dorset Macmillan Advocacy