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.
Today Kathleen Gillett of Dorset Macmillan Advocacy tells us about an online survey on what matters most for people affected by lung cancer and their carers:
People can use their experiences of health and social care, good or bad, to help make things better for others in the future. In health this is called ‘patient experience’ and the patient point of view is often sought through ‘patient engagement’ methods such as events or surveys. Patient groups and voluntary organisations sometimes call this ‘user involvement’. I’m still getting to grips with these concepts and it helps my understanding to try to explain them in plain English.
A national survey of cancer patients takes place every year called the National Cancer Patient Experience Survey and the latest survey should be published in the next couple of months. It contains useful data right down to individual local hospital Trust level.
There is currently a survey open specifically for lung cancer patients and carers (as well as a version for Health Professionals). The survey is being carried out by the UK Lung Cancer Coalition (UKLCC) which is a coalition of the UK’s leading lung cancer experts, senior NHS professionals, charities and healthcare companies.
Established in November 2005 to help to bring lung cancer out of the political, clinical and media shadow the organisation’s long-term vision is to double one year lung cancer survival by 2015 and five year survival by 2020. The ambition is underpinned by four key objectives including; to empower patients to take an active part in their care.
The report of the previous UKLCC survey which took place in 2013 Putting patients first: Understanding what matters most to lung cancer patients and carers will serve as a baseline to compare with the results of the new survey as many of the questions are similar. The Foreword to that report said the survey had ‘highlighted the need to promote and embed a more patient-centred approach to lung cancer care.‘
At Dorset Macmillan Advocacy we are looking at how we might better support people affected by lung cancer. We are talking to colleagues in the Health service about providing advocacy support to patients with suspected lung cancer to enable them to access the many important tests that they need as quickly as possible. These tests may take place at different locations and there might be several in the space of a week.
We were recently able to provide an advocate at quite short notice to accompany a person to a scan. The time spent waiting for the scan was usefully spent uncovering concerns and preparing questions so that at the consultation which followed the person was able to be proactive. We received very good feedback about the effectiveness of the volunteer’s support at this appointment from the patient, the consultant and the patient’s GP.
As an advocacy service we can amplify the voices of the people we have supported to date who are affected by lung cancer by asking if they would like our help to take part in the new survey (it is available online and can be downloaded as a paper document). We can also ask local Clinical Nurse Specialists for Lung cancer if they are completing the survey and let them know that if they have patients (or carers) who would like to take part in the survey but need help to do so then we may be able to offer support.
The survey is available via the pink coloured bar on the right of the UKLCC home page and the closing date is 27 June 2016.
Janet Cullingford, Services Manager at delivery partner ICANN tells us about their recent AGM and input on the day related to their cancer advocacy work:
On Tuesday 6th October Independent Community Advocacy Network North (ICANN) held our Annual General Meeting, as well as the usual AGM business, this gave us a wonderful opportunity to celebrate our involvement with OPAAL on the Cancer Older People and Advocacy Project, by showcasing the Cancer Voices presentation, including film.
Angela Broadbridge the project lead from OPAAL, introduced this with a presentation explaining both the Cancer Voices and ‘Train the Trainer’ work which we participated in.
Our audience were then invited to watch a short film designed to encourage health professionals to refer older people affected by cancer to our service. These films are also available on this blog, and on You tube. This was very well received, with people commenting on how it brought the project to life.
This was followed by two ICANN ‘train the trainer’ representatives, talking about their own cancer journeys; Richard Timson, one of our volunteer peer advocates involved with our Cancer Older People and Advocacy work, and Marilyn Eckton who is a member of our Local Cancer Champions Board. They were both wonderful advocates for the benefits of the Cancer Older People and Advocacy project. Their stories were both emotive and powerful and told from their own experiences. Whilst those experiences were quite different both had also shared many of the same issues, issues which could have been improved with the support of a peer advocate.
Since this event they have been invited by two of our local clinical commissioning groups, to present to their boards. They will talk about the project, as part of the patient experience group, to inform future service delivery.
On Friday 13th March Angela Clarkson Volunteer Coordinator from Sefton Pensioners’ Advocacy Centre and I had the great pleasure of displaying the work of the National Cancer Older People and Advocacy programme at the National Cancer Patient Conference in Manchester. From the moment I entered the exhibition hall at 07:50 until the conference closed around 5.00 I was struck by the lively buzz and enthusiasm displayed by everyone, patients, speakers and those exhibiting their services. This conference catered for up to 300 delegates.
Our stall attracted a good many cancer patients, carers and friends all keen to learn how independent advocacy could help them manage the impact of cancer on their lives. Other professionals too came to chat and soon we were networking, exchanging contact information with commissioners as well as service providers who we look forward to working with in the near future.
Our display board with stories of older people affected by cancer
We spoke to many people who wished they had know about this service as they believed their loved one could have benefited. We also spoke to many others who wondered why they did not have this service in their area.
I was able to share some of this feedback with Mr Sean Duffy the National Clinical Director for Cancer NHS England. Sean was aware of the programme and was very pleased to endorse our work, in particular with Peer Volunteers. Like us he believes that the support of peers can be invaluable as they come from a position of knowledge and experience and often display great empathy towards others who find themselves in similar situations.
Sean as the keynote speaker spoke of the fact that we have a lot to be proud of, there are more patients treated, more patients surviving, better patient experience than ever before and greater use of effective treatments.
Sean Duffy with Kath Parson
However he was clear when he said we have much more to do, close the survival gap with other countries; address continuing poor outcomes for some cancers; growing incidence; reduce cancer waiting times; address the financial context of cancer.
Sean also spoke of the 5 year forward view which contains:-
radical upgrade on prevention and public health
greater personal control
breaking down institutional barriers
new models of care
national leadership local flexibility
shared vision and partnership with voluntary sector (cancer is an exemplar)
Key challenges facing us include:-
Tackling late diagnosis
Supporting people living with cancer
Better support for older people
Promote a proactive approach to primary care – explore new models as in the 5 Year forward view, significantly shift early stage diagnosis from 56% to 66%, making earlier diagnosis happen, accelerate co-ordinate and evaluate our work programmes.
More people living longer is a good thing! But we need to ensure we support them to live well with recovery packages, rehabilitation and re-ablement programmes, better models of follow up and greater co-ordination with social care.
I was delighted to hear Sean talk of systems being designed around the needs of patients (not patients forced to adapt to the system).
One third of cancer diagnoses is now in 75+’s, half of all cancer deaths are in this age range. Sean referred to the Macmillan commissioned IPSOS Mori survey aimed at exploring how older people feel about their cancer, the attitudes they hold to treatment and care and what good care would look like. The OPAAL Cancer Older People and Advocacy programme is proud to be involved with this work and we look forward to making useful contributions.
Stuart Gibson Chair of the Lancashire and South Cumbria Cancer Partnership Group also displayed great interest. Having had cancer himself he is well aware of the impact on people when cancer enters one’s life.
Stuart Gibson with Kath Parson
I was able to attend a well attended very informative workshop on Improving the Quality of people’s ‘Experience of Care’ led by Lisa Edwards. Lisa is the Project Delivery Lead for the NHS Experience of Care project and spoke movingly of the lessons she had learned concerning talking to patients about what they wanted and what good care would look like for them. Lisa shared her vision of ensuring that patients’ experience of care is central to the commissioning and care delivery on offer to all. With many patients in the room we were able to learn about what matters most to people when we think about how to make the patient experience better. I left with a lot of food for thought I aim to share with colleagues to help shape our future independent advocacy programme.
During the day we were also able to contribute to the event video ensuring that Independent Advocacy retains a permanent place in material supporting better patient experience.
Angela Clarkson with the display stand
All in all Angela and I had a fantastic day, made all the more special by being able to listen to many cancer patients’ stories.
In this video Patient Advocate Andrew Schorr chairs a panel of UK patient advocates in a discussion of the important roles that advocacy can play in living with and raising awareness of less understood diseases such as CLL. From small ‘a’ to large ‘A’, the panel traces the impact of advocacy from the personal to the political and the local to the global.
Kath adds her professional perspective to the experiences of CLL patient advocates Julia Kennedy and Tricia Gardom. Andrew, Julia and Tricia share their experiences in the transformation from patient to advocate and discuss what motivated them.
The panel concludes that advocacy works at a number of levels, beginning with the immense day to day benefits that sharing experiences with other patients in support groups brings to those living with CLL. From the positive impacts on the sense of isolation, fear and powerlessness that often accompanies diagnosis, grow more strategic advocacy campaigns such as lobbying for improved access to costly transformational therapies among the CLL community. Finally, the panel considers the potential benefits to the patient and clinical communities of collective individual experience on-line providing a global insight into living with CLL. All agreed that, whilst face to face support was important, staying connected online was an increasingly effective source of networked empowerment.
Whilst it’s quite a long video it is worth watching the whole thing (36 minutes) but if you prefer you can fast forward to Kath speaking at 20 minutes 20 seconds.
The panel strongly encouraged as many people living with CLL as possible to improve outcomes and raise awareness of the disease by getting involved in advocating for themselves and others.
You can find Kath’s earlier personal account of the meeting here
Older People Living with Cancer 