Kathleen Gillett from Cancer, Older People and Advocacy programme partner Dorset Macmillan Advocacy considers the relationship between the older person affected by cancer and their peer advocate:
He analyses why we have a natural tendency to try to give advice or at the very least to try to ‘say the right thing’ in difficult situations. Then he explains why we should not.
‘Talking at someone with cancer about what they should do, rather than being with them in a morass with no easy answers, is not you helping them’ argues Thrasher.
The relationship of a peer volunteer advocate with the person they are supporting (their ‘advocacy partner’) is not the same as the relationship between relatives or friends. Relatives and friends may be asked for and may offer their opinions. Advocates do not offer opinions or advice but they can listen and be present. They can, as Thrasher writes, ‘Just be with them in the unknown’.
In Dorset we have been fortunate to attract highly motivated volunteers. We find during our informal interview that most of them have a fair idea what advocacy is about even if they were unfamiliar with the term itself. During our induction training we see them gain a much deeper understanding while taking part in the discussions about the ethos of advocacy and examples of advocacy in practice.
To volunteer to be with someone ‘in the unknown’ is not an easy thing to do and it is the volunteers’ ability to empathise that gives them the determination to fulfil this difficult role. ‘Would you like to make a difference?’ is a familiar term on volunteer recruitment material. ‘Would you like to be with someone in ‘a morass with no easy answers’?’ is a phrase we would be unlikely to use on our recruitment posters but our volunteers are undoubtedly up to the challenge.
In May we were given the fantastic opportunity to present the Cancer Older People and Advocacy project to Lynda Thomas, Chief Executive of Macmillan, and John Pearson, Executive Director Cancer Support Operations. Lynda and John were visiting the North West and it was decided by the Service Development Team that the best way to showcase all the local initiatives was by holding a stallholder event.
Our display stand
I arrived at the event, complete with our specially purchased display board, packed with information about the project and the publications we have produced. Each stall holder had 5 minutes to present their project and the stalls were arranged in order of the cancer journey. It was fascinating to hear about all the inspiring innovative projects that exist but a little frustrating that we couldn’t access them because of their boundaries. Lynda and John listened to each presentation and then were given the chance to ask questions. One of the main themes they focused upon was the way in which the learning from each project could be shared in other parts of the country.
I ended my presentation with a quote from a service user. This lady had told me that without the support of an advocate her situation was so desperate she would have committed suicide. The impact of this statement was evident around the room and I think it emphasised for them the importance of advocacy. John was interested in where we got our referrals from and he offered to put us in touch with contacts he has in The Silverline and other voluntary organisations. We will be following up his interest in the project and keeping him informed as to how it develops.
Since the start of the Project there have been 432 referrals into the advocacy and support service, with 95 (22%) being for carers. Of these 29 (30.5%) are male and 66 ( 69.5%) female – a ratio of more than 2:1 of female to male. Currently there are 11 open cases for carers across Staffordshire and Wolverhampton. Looking at the 84 closed cases throws up some interesting statistics.
The majority of referrals were “self-referrals” – 36% followed by referrals from the Macmillan Cancer Information and Support Centres in Stoke, Stafford, Burton and Wolverhampton which were 22 around 23%. Referrals to the Advocacy Service for clients with cancer resulted in 8 referrals for their carers and friends and family of cancer patients led to a further 7 referrals. Macmillan nationally (helpline) have only referred 1 carer to the Project.
84 cases have been closed over the period of the Project of which 39 were closed as the “course of action was completed” which is 46%. Unfortunately only 6 were closed because they felt empowered to act for themselves, make decisions or had regained control. One carer was too ill and there was no engagement with 9. Other reasons were moving out of area, no longer needing the service, bereavement and refusing the service.
Of the 95 cases, the majority live in North Staffordshire (including Stoke on Trent), this is not surprising as the Project was started as a pilot in this area back in 2012. Wolverhampton has only had 5 referrals but this was the last area to come on board as part of the Project in February 2015.
The project is for older people (50+) affected by cancer so if you are a carer of someone with a cancer diagnosis, live in Staffordshire or Wolverhampton and are struggling then please get in touch with us. A phone call to Beth Johnson Foundation on 01782 844036 is all you need to do.
Today Janet Cullingford, Services Manager at ICANN, wonders how we can best relay the stories of those we support:
Alongside our participation in the Cancer Older People and Advocacy programme, ICANN is a delivery partner and member of the Older People’s Cancer Voices project steering group. I have been musing of late on the subject of how we can best tell the stories of the people we have been working with and promote the fantastic work our advocates, especially our peer advocates, have been carrying out to improve the lives and experiences of older people affected by cancer.
ICANN staff and volunteers have started a series of workshops to increase and improve our social media presence. In the first one we gathered our thoughts to develop a strategy and plan for how we can best promote our work, and are going to do further workshops to improve our Facebook and Twitter skills.
We started a Twitter account very recently and have already gained 75 followers, come and tweet with us @ICANN_Advocacy. Andy one of our younger volunteers manages our Facebook page for us www.facebook.com/ICANNLancs. It would be great to see you on there!
The words we choose can be very important, do we TELL our stories or even SING about them. Whilst talking to many of the people who access our services, some like to ‘Tell a Tale or two….’
Many people talk about their cancer journey, however others do not feel that this truly reflects their experiences, and a journey implies a destination.
As advocates we are there to be a voice for our clients, when their ability to voice things may be wavering due to illness, age or vulnerability, but we must be sensitive that when we tell their stories it is in a way that they are comfortable with.
Margaret and Vivian from ICANN
ICANN took part in the series of films that OPAAL produced last year to promote Cancer Older People and Advocacy. One of our clients enjoyed participating so much he treasures the picture he was presented with and has requested a copy of his entire interview prior to it hitting the cutting room floor!
Janet Cullingford, ICANN
What’s the best way of telling stories that reflects the value of the support our advocates provide? Tell us what you think.
Susan, one of our volunteer advocates, gives us a moving account of supporting one older person affected by cancer:
I am a volunteer advocate from Getting Heard (formerly Oxfordshire Advocacy) and a Cancer Older People and Advocacy volunteer, and one of my partnerships had significant interactions with the multi-disciplinary and multi-professional team. At each interaction, I as the advocate, was made very welcome and at no time did my client or I feel rushed, intimidated or feel that my client’s views were not taken into account. My client was involved in all decisions and staff took her views and concerns very seriously when developing her management plan, and she and I recognised that this was holistic patient centred care. Interactions with professionals and all other staff was extremely positive, medical and nursing staff welcomed the advocate when the role and responsibilities were explained, recognising the emotional and practical support available for the patient.
Susan
The specialist nurse made the initial referral as she was aware that my client lacked support attending consultations. I supported my client when she attended the gynaecology outpatients department for her first consultation with the surgeon following a diagnosis of uterine cancer. My client was determined that she was not going to undergo chemotherapy and my role was to support her achieve her wishes. Both the surgeon and specialist nurse listened to my client and when I intervened to clarify what was being said and questioned whether she understood the impact of her decisions, both clinicians were supportive of my client’s wishes.
I supported my client pre-operatively and interacted with the nursing and support staff. At the post-operative consultation following keyhole surgery, she was seen by the consultant gynaecologist when she was informed that the cancer was invasive and they had been unable to remove it completely. My role was to support my client reiterate to the consultant that she did not want chemotherapy but agreed to have radiotherapy.
By her first oncology consultation my client’s physical condition had deteriorated and she had developed further symptoms, and the oncologist decided that she should have more investigations including a CT scan. By the second oncology consultation CT scan results indicated further spread, and the plan was for four sessions of palliative radiotherapy. My client asked me to attend a meeting at home with the hospice specialist nurse for moral support, at the meeting the specialist nurse discussed hospice support and pain management. I attended her first two radiotherapy sessions, however by the 2nd session she had increasing pain and discomfort, weakness, urinary and bowel symptoms. By attending the radiology department, I was able to give physical and emotional support and assisted my client discuss her concerns with the radiographers.
My client fell at home and was admitted to the local hospital where I visited her in A&E and on the ward, where I met kind and caring staff. She was too unwell to be transferred to the hospice and died soon after following a stroke.
I was so glad to support my client during her various medical interventions both at hospital and at home, in order to support her through her cancer experience. I was able to offer support, and help her navigate the system and help her ask those often difficult questions and understand the response from professionals. It was a privilege to meet so many kind and compassionate members of the multi-disciplinary team, everyone my client met treated her with dignity and respect and nothing was too much bother. Feedback from professionals regarding the experience of working with an advocate was always positive and it was recognised that a well-informed and well-supported and empowered patient facilitated a positive staff : patient relationship. It was also recognised that the advocate had the time to support their client when professional staff had limited time and that support was consistent and flexible.
Susan Mackie Volunteer Advocate, Getting Heard (formerly Oxfordshire Advocacy)
In today’s post Karen Pigott, from programme partner Dorset Advocacy and Dorset Macmillan Advocacy, tells us about some recent training delivered after a range of delivery partners identified a need for support on complex case work:
On the 16th and 17th February 15 brave souls from a variety of projects across the country attended Complex Case Training in London. The training was commissioned by OPAAL for the Cancer, Older People and Advocacy programme and designed by Jenny Purcell from Dorset Advocacy and delivered by her and myself.
This was the first time the training was delivered so a big ‘thanks‘ to the participants for their suggestions and patience as we tweaked some timings and content to accommodate everyone’s needs.
There was a good mixture of volunteer peer advocates and paid staff with a range of experience which really added to the dynamics and depth of the two days. The importance of being able to share ongoing complex and challenging issues in a supportive environment with a problem solving approach cannot be underestimated.
At the end of the course all but one participant scored themselves as having increased confidence in approaching complex case work.
Every participant received a ‘Tool kit for Complex Case Training’ to enable them to cascade it through their own organisation.
It was an intense two days but hopefully everyone is confidently applying everything they learnt and shared in whatever situation they find themselves in!
In this post Helen Vernon, advocate at Sefton Pensioners Advocacy Centre (SPAC), talks about collaboration, compassion, choice and advocacy:
In February I attended an excellent conference called Palliative End of Life Care: Collaboration, Compassion, Choice. The event was attended by a wide range of interested parties including commissioners, consultants, GP’s, nurses and members of the voluntary sector.
One interesting thing that almost every speaker opted to do was to relate their speech to their own personal experience of losing a family member. This had been the motivation for each of them to follow their career path, either because the experience had been so poor or because they wanted to replicate a positive experience for others.
There were several key pieces of information that came out of the day and I have attempted to summarise some of these below.
The keynote speaker was Jacquie White who is the Deputy Director for Long Term Conditions in NHS England with responsibility for improving the quality of life and experience of end of life care for people with Long Term Conditions and their carers. As part of her presentation she showed this slide about the six ambitions she would like health and care professionals to sign up to to achieve improvements in care. There are obvious links between these ambitions and advocacy.
Jacquie also spoke about their plans to develop an “orientation” process for people who have been diagnosed with a long term condition and she described it as a ‘how to’ for living with that condition. If this became the norm there must surely be a place for advocacy within this programme.
Alison Colclough from St Luke’s Hospice in Chester spoke about their homelessness project and whether people who are street homeless get choice at the end of their life. This also resonated strongly with our advocacy work and it made me consider whether we have explored this sufficiently when we are promoting our service.
The theme of collaboration ran strongly throughout the day and there was a lot of advice about how this could be achieved. There were stories of success and advice about approaches to improving inter agency working. Annamarie Challinor, Head of Service Development (Macmillan) for The End of Life Project shared this image with us, which we could use as a visual reminder of how broadly we are promoting the COPA project.
Helen Vernon, Advocate, Sefton Pensioners Advocacy Centre (SPAC)
Lizzie Sturm gives us the low down on what’s been happening recently at project partner Advocacy in Barnet:
We seem to be spending so much time recruiting! The last two months have seen us interview for a Volunteer and Training Co-ordinator, a Project Manager as well as Volunteers for the Barnet Macmillan Advocacy Project. I hope that people will get to meet Tasneem Goheer, the new Volunteer and Training Co-ordinator who started at the beginning of January over the next few months. The calibre, passion and dedication of volunteers that join us never fails to humble me.
As a Macmillan partner, we positively benefit from both the learning of COPA projects sharing their experiences at Board meetings as well as directly receiving the support and training of Macmillan. We had our “induction” last week with the Macmillan Involvement Coordinator Raj Bhattacharjee, informing us of what we can access as well as their expectations. All staff on the Barnet Macmillan Advocacy Project will be attending their formal new professionals’ induction day in due course. We’ve also been introduced through OPAAL to our mentor organisation Dorset Advocacy, a really brilliant idea.
Despite the changes, Barnet Macmillan Advocacy Project is making a difference and the relief that advocates can offer is palpable. However, so many of the issues that we have dealt with can end up being a race against time. Betty Zulu is the Barnet Macmillan Senior Advocate currently supporting Mr P, who has terminal cancer (final stages) with housing issues. His wish is to transfer the tenancy in his name over to his children as he is very worried about leaving them homeless. The housing department are of course adamant that it is not possible to transfer tenancy to children. Advocates relish in the words “not possible” and Betty has been combing through tenancy and transfer laws to challenge this. Mr P has already noted the difference at the housing department since informing them he has an advocate. Betty has now identified that transfer to children living at home can be allowed so a positive resolution and peace of mind to Mr P is on the horizon. We hope that this will be completed within his lifetime. Betty says “I found it very important to provide support to Mr P as his health is quickly deteriorating. He was becoming very breathless even as we spoke. His prognosis is not very good. I feel very gratified that I am able to provide support for Mr P as he informed me that he had been to so many other organisations but unable to get any help”.
As a project that covers Cardiff and the Vale we wanted to plan something informal in Llantwit Major that would bring people together on a cold winter’s morning, and would reach those living in some of our more rural areas.
We decided on a Christmas themed event with mince pies, drinks and a raffle with donations from the local Co-operative and Filco supermarkets and Sainsbury’s in Cardiff (Age Connects Cardiff & the Vale is currently their charity of the month). This enabled us to offer all refreshments and the raffle prizes for free.
Information on our work and some prizes for the raffle
We opened the doors for 10.30am and after a short wait the room soon started to fill up. Some came with friends and others were dropped off by a relative or came alone. The atmosphere was upbeat and people were soon making friends and having a chat over a mince pie.
Angela, our independent advocate and Alice the volunteer co-ordinator spent the morning talking to the guests, explaining more about the Cancer Older People and Advocacy Project. We had our leaflets to give out and the OPAAL short film ‘Older People Affected by Cancer’ played in the background. Our volunteers were busy; Linda ran the raffle and Jeff took photos of the day.
Tenovus choir
We invited Tenovus Cancer Care Choir to come and sing some carols for us. Their singing was amazing and they really helped to get everyone in the Christmas spirit and had everyone singing along. It also gave us an opportunity to talk to those in the choir about the Cancer Older People and Advocacy project and they in turn were able to speak to some guests about the great work provided by Tenovus. All in all it was a great example of how working with another third sector organisation can benefit those that we support.
In December 2015 we invited our new Sandwell Cancer Older People and Advocacy (SCOPA) volunteers to join staff and management board members for Christmas lunch.
We chose a local pub and sent out the invitations with the menu choices. We were delighted they were able to join us in celebrating our year’s achievements. Our cancer advocacy volunteers were able to chat with everyone about their plans for the upcoming holiday period and we reflected on their contribution to the project. We had an enjoyable festive lunch and lots of laughs!
The boss in festive hat
Viv
Sherry
Jodie
I have since been able to catch up with four of our volunteers and I asked them to define what it was that motivated them to get involved with the project and what they felt they had gained from volunteering. These are their responses.
• Sherry – as a breast cancer survivor and retired nurse I felt I had so much to offer to other people going through what I went through. I didn’t want to wait, I knew I was ready to start volunteering and I was given an advocacy partner quite quickly. I’ve supported her through a temporary displacement move and attended some hospital visits. I am really happy with how it is progressing and am looking forward to another partnership in the New Year.
• Andy – Recent circumstances out of my control meant I was wasn’t able to keep up my weekly visits. SCOPA staff supported me and attended meetings that I couldn’t go to. It’s all done at my pace and I feel I am making a difference and am appreciated. All the staff at SCOPA are helpful and I drop in whenever I am passing.
• Viv – I was placed with my advocacy partner within weeks of the training. As a survivor myself I knew how lonely it can be even when you have your family around you. I see my advocacy partner about once a week and we chat, he has lots of family and friends but they don’t know what’s on his mind. We find it easy to talk about his treatment and issues.
• Jim – I worked as a manager of a residential home for years and pretty much knew what to expect. SCOPA set up my advocacy partnership back in November but I have still to meet my partner. Her circumstances have changed quite quickly and she is now in a hospice, It is what it is, this is the nature of the work we do. Referrals take time to settle and I’m not surprised with how it’s going. Fortunately Sandwell Advocacy found other work for me to do, interviewing residents and family members in local homes. This is a really good use of my time and I feel that Sandwell Advocacy are allowing me to use my skills and experience to their best advantage.
As we are now well into the New Year and back at our work we are happy to have recruited two further volunteers and we hope that our “old hands” will be available to talk to the new ones and be able to share their experiences and offer advice and support in addition to the full training package they will be attending.
Many people talk about their cancer journey, however others do not feel that this truly reflects their experiences, and a journey implies a destination.
Older People Living with Cancer 