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.’
In today’s post we hear about a well spent Summer’s day in Northumberland….
On Wednesday 30th August, Age UK Northumberland enjoyed a sunny day in the Sanderson Arcade in Morpeth promoting their Macmillan funded cancer advocacy project.
The Sanderson Arcade is a smart shopping centre in the heart of a beautiful market town in Northumberland. With a population of over 16,000 Morpeth is particularly busy on a Wednesday which is a market day with people visiting from all over the county.
From the moment the gazebo was erected until the end of the day visitors to the stand were frequent. Lunch time was particularly busy. With a key position next to the entrance to Marks and Spencer in the middle of the thoroughfare there really was no way to avoid our presence!
Our new leaflet explaining the project was handed out to passers by, queries about our services were answered and our pens, key rings and sweets were eagerly received! One of our volunteers, an ex-cancer radiologist put up a display about radiotherapy which was particularly well received with a number of people asking questions about the process.
This was a wonderful opportunity to explain to people how Age UK Northumberland’s Cancer, Older People and Advocacy Project works and what being an advocate entails. Knowing that someone can accompany you to appointments or can help you identify benefits and allowances you may be entitled to was of particular interest to those who had or knew of someone with a cancer diagnosis.
The success of the stand was made possible by the stalwart support of our volunteers who all stayed well beyond their allocated slots. Their enthusiasm and willingness to share their knowledge and passion for the project was clearly visible. All in all, a great way to spend a summer’s day!
Karen Renner
Volunteer Coordinator – AGE UK Northumberland Cancer Advocacy Project
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.
In today’s blog post we hear from Karen Renner, volunteer coordinator at AgeUK Northumberland about a recent advocacy learning and development opportunity for volunteers and staff:
On the 28th February Age UK Northumberland hosted an advocacy training day which was funded as the result of a successful Macmillan Learning and Development Grant application.
The Cancer, Older People and Advocacy Project in Northumberland was set up by Macmillan Cancer Support and Age UK Northumberland to provide one-to-one support, help and information for people over 50 and their families affected by cancer. The programme is only available in certain parts of the country and Northumberland is fortunate to be one of these areas.
Val Ford leads the training session
Current and new cancer advocacy volunteers attended the training day as well as Age UK Northumberland staff. Val Ford, Director of Training from SEAP which is one of the leading UK advocacy agencies delivered the training. Val who was involved in both writing the original training package for the project and delivering it nationwide to front line Macmillan staff proved an excellent facilitator.
The course provided an understanding and awareness of what Independent Advocacy is and highlighted the principles which underpin good practice in advocacy. Some of the challenges that can arise with Independent Advocacy were examined and the strategies that could be used to resolve these.
A number of group activities supported the learning process including several case studies which also examined the various issues faced by older people needing advocacy assistance.
Discussion over exploring professional boundaries proved of particular interest to both existing and new volunteers. The dangers of not adhering to boundaries were examined as well as strategies to employ should a boundary be broken.
After a very thorough and engaging day, all those present felt that their knowledge of advocacy had increased. New volunteers felt they were better equipped with both the knowledge to pursue an advocacy role and the skills to maintain an independent and client led relationship. Those people already familiar with the project found the day both motivating and a useful reflection on what they had already learnt to date.
Looking to the future, the project in Northumberland continues to gather impetus. With continued investment in the training of our outstanding volunteer workforce, older people diagnosed with cancer will have the understanding and support needed to make the decisions that will guide them through their journey.
Today is International Women’s Day and the campaign theme is Be Bold for Change. Big Lottery Fund are speaking to women who have made a big change in their lives and their communities. Our volunteer peer advocates make a tremendous contribution, choosing to give their time to support their peers because they know that they can use their personal experience of cancer to make a difference to other older people’s lives.
Today we’re focusing attention on Claire’s Story, from our recent publication Time: Our Gift to You, which features volunteer peer advocates talking about why they volunteer, and what they themselves gain from their volunteering experience. Claire has used her own experience of breast cancer to support Sally, her advocacy partner who has the same diagnosis.
Claire’s volunteering story:
“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 knowthat 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.”
Read more about the inspirational volunteers who are being bold for change on behalf of and alongside their peers here
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.
We’re absolutely delighted today to be launching our new book of volunteer stories from the Cancer, Older People and Advocacy Programme. Telling 19 different stories of peer advocates and cancer champions, it’s called “Time: our gift to you”.
We’ve spent lots of time on this blog telling you about the difference our volunteers make to the older people affected by cancer they support. We thought it was about time we gave those volunteers an opportunity to tell their own stories.
Prior to developing this new publication our peer volunteers told us some of the reasons they’ve chosen to become involved:
“It makes a real difference to those we support. It ticks lots of boxes for me, I wanted to continue to use skill, experience & knowledge to help others, to make a positive difference to people’s lives.”
“I want to help people affected by cancer, and am happy to help people through the ‘cancer experience’. For me it’s all about putting something back, I was well cared for and I’m aware that a lot of other people are not so fortunate.”
“Because I believe I can make a real difference, I can help people practically & personally. I have a good idea of what people are going through. I can help them with their concerns or fears for the future. I enjoy being part of a team, and I enjoy the training offered to us all.”
“I feel I can relate to my advocacy partner very well due to my own experiences. I find it useful to have something in common with my partner in addition to the cancer. I am an empathetic person, a good listener and able to support others to express their concerns and worries.”
In addition to making a difference for others, Cancer, Older People and Advocacy volunteers also tell us they themselves benefit from their volunteering role.
You can read and download all 19 stories and find out why cancer advocacy volunteering is making such a difference by clicking here
Our thanks to Jill Wallace, who is a peer volunteer advocate with programme partner Advocacy in Barnet, for the following enlightening blog post:
So irritating, I have woken up so early as usual; the habit of waking as if I am going to work never seems to stop. Priority is to feed my cat Izzie and have my first of many cups of tea and read my book before the newspaper is delivered.
Jill
There is an advocacy support meeting today which I am looking forward to as there will be quite a few new volunteers attending. I think it is such a great opportunity for the new volunteers to meet other advocates and have the opportunity to listen to the variety of work we carry out. We have a speaker at each monthly meeting and try to book other organisations working in Barnet; the information can be so useful to people that turn to Advocacy in Barnet (AiB) for support.
Very interesting support meeting ; it was very rewarding chatting to the new volunteers during our coffee break to hear that they felt relieved and happy at the level of support available to them at all times. Today’s speaker will be of great interest to some of our clients; a family business that can offer bespoke meals delivered as and when required at a very reasonable price.
I have arranged an initial visit accompanied by Georgia, a trainee Social Worker working with AiB as part of her training. As the meeting was from 10 – 12 am we have plenty of time for a nice lunch and chat together before our visit at 2pm at Finchley Memorial Hospital. So far I am really enjoying my day! Spent lunch with Georgia discussing how much she had enjoyed and learned from working with AiB. Hearing how this had helped her as she was coming to the end of her training was very enlightening.
We visited our client Mrs A, age 90, at Finchley Memorial Hospital. After explaining the support AiB could offer, and obtaining signed authority to act on her behalf, Mrs A spoke of the concerns she had regarding where she would live once discharged from hospital as she was aware that she was physically unable to live independently. Happily we were able to point out that Mrs A did have choices and advocacy would be happy to liaise with all the professionals involved to ensure that her opinions and decisions are listened to. We discussed with Mrs. A the action we would be taking on her behalf to ensure they met with her approval.
Georgia had taken notes during the meeting which ended at 3.15pm; we spent 15 minutes discussing Mrs A’s case.
Arrived home just after 4pm having had a very varied day, bit tired but pleased.
Jill Wallace, peer volunteer advocate, Advocacy in Barnet
Our thanks to Rod, who shares his story with us below:
Hello my name is Rod and I have recovered from cancer. I was diagnosed with testicular cancer. It was a bit of a surprise but when my wife told me that my left testicle felt like a walnut I thought I’d better get this checked out.
I had surgery to remove the testicle, a very quick operation by the way, and it only took a day before I was walking around again. What I found most difficult to deal with was waiting to find out, I found that more difficult than the treatment. I eventually went to see the consultant and he informed me that the testicle was cancerous and that I would have to undergo a course of treatment. The treatment made me feel sick all of the time and after the first session I got back home and threw up! They prescribed me a course of anti sickness tablets but they made it worse! In all honesty I wasn’t scared about having cancer, my friends were more worried than I was. Don’t get me wrong I wasn’t happy about having cancer, but I couldn’t change it, I just had to live with it.
Just because you have cancer doesn’t mean that how you live your life has to end. Friends tried to wrap me up in cotton wool and protect me. I was a bit physically limited in what I could do (feeling weak all the time) but I wouldn’t let it stop me from going out and enjoying myself.
The consultant said that is was possible that the cancer could spread through my lymphatic system so the course of treatment was shortish but aggressive. What surprised me the most was still being able to have a physical relationship with my wife, which resulted in the birth of our twins, one of each, I was dead chuffed.
A while later I thought something was wrong again, as I was having constant diarrhoea. Consequently I had a endoscopy, which found nothing, and then a colonoscopy, where various polyps were removed. When I next saw the consultant he informed me that they were in the early stages of change. This time I was a bit worried, as this is what my father had died from. As it turns out I was fortunate, as this was caught early and very recently I received the all clear.
Rod
My volunteering
I am currently unemployed and signed off until April 2017. As a consequence I have plenty of time to spare. I was looking through the doit.org website and came across the peer advocate position, with Sefton Pensioners Advocacy. Certainly when my father was diagnosed with cancer there seemed little or no help or support, which really hadn’t changed that much when I was diagnosed. I felt that through my own cancer journey and other members of my family I had something to offer in terms of support and guidance.
I have had two clients so far and they have very different stories. Although they are my clients I prefer to just think of them as people that I am supporting. They have both been unique, facing different issues and challenges. One client has already recovered from one form of cancer, only to find out that she has another. There are other complications as well, mostly to do with chronic pain, which she is having treatment for. The main issue this lady has is with mobility, as she had no blue badge she found it difficult to get around as she was limited to where she could park. I successfully applied for her blue badge, which has completely changed things for her, she can now drive to the local village and park outside the supermarket to do her shopping. She is really, really pleased with this as it has given her a greater sense of freedom. Her details were forwarded to the DWP and now she and her husband both receive attendance allowance. Now they can afford to have the house cleaned and garden maintained, which is very important to them both.
My second client has been completely different. He was diagnosed with lung cancer, which had spread to his brain and his diagnosis was terminal. His eyesight was also failing. His behaviour was challenging at times but a lot of this was sheer and utter frustration at not being able to express himself fully. I first visited him in hospital, with a colleague, and his behaviour was challenging. To be fair he had been in hospital for the best part of a month. Eventually he was discharged and he returned home and I was able to support him in terms of getting there, making sure a hospital bed was installed (he had been sleeping on the floor) and ensuring food was delivered (thank you Foodbank). However this only lasted one night and he was then readmitted to hospital. He was then reassessed and admitted to a nursing home. He was much happier with this as he had the space of the whole lower ground floor and a greater sense of freedom. I was able to support him in terms of getting more clothes and taking him to his property, to help him sort through his important documents and things.
He was initially worried about his funeral and also getting in contact with his estranged daughter. On investigation it became apparent that he already had a funeral plan. I helped him to make contact with his daughter again and also arranged for him to have regular communion. During the days before his death he deteriorated drastically, not communicating at all. As he was on morphine every three hours this was hardly surprising. Although I knew he had terminal cancer I still found it a shock when his nursing home informed me that he had died at 6:30am that morning. There were things that I still wanted to guide him with. I have an immense feeling of frustration that I was not able to help as much as I could, but sometimes things just work out that way. The final thing I could do for him was to make sure his daughter was aware of his final wishes and thus I made sure to communicate these to her.
I attended his funeral to pay my last respects.
Advocacy for me so far has been, challenging, frustrating but ultimately rewarding and will continue to be so.
Older People Living with Cancer 