Engaging with health services and establishing advocacy on the cancer pathway
Traditionally advocacy services have interacted with the social care sector, so delivering cancer advocacy into health settings was a new experience for most of our Cancer, Older People and Advocacy (COPA) partner projects.
This paper sets out 5 key lessons from Older People’s Cancer Voices project partners in engaging with health services, and seeking to establish a place for advocacy on the cancer pathway.
1) Establishing a Local Cancer Champions Board can be a springboard for building local influence
Each of our COPA partner organisations convenes a Local Cancer Champions Board (LCCB) which helps to steer local project development. LCCBs are made up of a wide range of people, including but not limited to local volunteer co-ordinators, representatives from Macmillan, representatives from the health sector, academia, peer cancer support advocates, carers, older people affected by cancer and local authority professionals.
We asked project partners about the impact LCCBs are having in building local relationships; whether this equates to having greater local influence. Generally they present a similar picture; in summary LCCB members are opening doors for project partners locally but membership of LCCBs is developing and changing all the time and there is an issue about local (mostly primary) healthcare professionals not being able to commit the time to attend.
I-CANN found that they started off with a really strong membership, this was built up organically with I-CANN writing a brief terms of reference for the LCCB, and then providing their LCCB Chair with a list of potential contacts to approach to join the Board. Partner projects agreed that LCCBs are a good mechanism for consultation with older people affected by cancer, and this is positive in ensuring older people’s voices are heard in service design. What seems to be working well is ad hoc relationship building and door opening. In Dorset one LCCB member provided “a vital link to local GPs and has supported the group with practical initiatives such as writing to medical colleagues and making introductions to the CCG lead for cancer.”
Another member “has offered invaluable input around service development and most recently, in exploring future funding options. She has been instrumental in arranging a Bitesize education event for local Macmillan professionals (including many clinical nurse specialists (CNSs), where the advocacy service enjoyed a prime presentation slot.”
2) Building relationships with Health and Care Professionals is resource and time intensive
Project partners have been trying lots of different approaches to build relationships with local health and care professionals with varying degrees of success. All project partners have reported that they are finding it difficult to engage with local GPs and primary care staff, despite support from their LCCBs, and all report that it takes a tremendous amount of time and resource to build relationships, there’s widespread agreement though that time spent building these relationships is essential.
One project partner said “we are really struggling to engage with health professionals, approaches have been tried through practice managers, and with CNSs, via lead CNSs and also presenting at CNS team meetings, none of this has resulted in any referrals.” As one project partner said: “our challenge seems to be showing where our support for an older person affected by cancer will align with a Health Professional’s job description
This sense of alignment is reflected by another project partner in terms of health professionals making links for themselves about situations when an advocacy referral might be appropriate: “individual hospital departments within oncology appear to value our service more, but some of this has been via evidence of benefit seen by working with existing clients, which has led to further referrals, but only where there are similar circumstances. For example early on we received a referral from our local Cancer Information Centre for a client with throat cancer who also had a learning disability, the upper gastro-intestinal department themselves have since sent us 3 further clients, who have also had a learning disability or mental health issues”.
Furthermore the ‘shifting sands’ of the environment partners now operate in means that service reviews, service restructures and changes in personnel all impact on partners’ ability to create meaningful relationships that result in referrals.
Naturally some partners have questioned whether resources might be shifted from relationship building with health and care professionals, particularly where they have stronger relationships with local voluntary and community sector groups which yield referrals; however on reflection they would still like to build on referrals from health and care professionals with a view to raising the profile of advocacy support within clinical settings. OPAAL created a Health Engagement Strategy to support COPA partners to develop their own local engagement plans.
What has worked well has been intensive interaction with health professionals. We’ve had very positive feedback on the talks that older people affected by cancer have given to professionals, both locally and nationally. This has yielded new referrals, and also new project volunteers; when Dorset Macmillan Advocacy volunteers delivered a talk to Macmillan’s helpline and support teams in January 2017 we saw an 84% increase in referrals on the previous year from these teams (Jan – March 2017 comparing with Jan – March 2016) with the helpline team lead reporting that “teams have been exploring the advocacy that is available in their local areas”.
Feeding back on his experience of delivering these talks one volunteer told us that these talks have indeed led to interest in the service, and to new referrals, and a really unexpected outcome has been “health professionals themselves hearing about the service and deciding to volunteer with us”, testament to the power of advocacy stories then, health care professionals hearing about the service and wanting to give their time to get involved too.
A presentation by Help & Care’s OPCV volunteers to the Lead Cancer Nurse meeting at one hospital resulted in referrals and the recruitment of a retiring CNS to the volunteer team. CNSs asked questions about the training and support given to volunteer advocates. Afterwards a breast nurse commented ‘we feel so much more confident referring to your service now we have met some of the volunteer advocates’.
We see strong potential too for developing influence where health professionals tell their peers about advocacy services. Indeed, having people with a health background involved in service delivery seems to have an impact on referrals from health settings. Our partner project, Beth Johnson Foundation (BJF) has staff from a health background, although levels of investment in COPA projects vary widely, it is significant that BJF had 80 referrals from health professionals in a 12 month period, against a total of 79 across all other COPA partners in the same period.
3) The commissioning environment is changing and opportunities to develop relationships with commissioners are shrinking
Some COPA projects enjoy strong links with health and social care commissioners by virtue of them being well established generic advocacy organisations. Across the four Older People’s Cancer Voices projects it’s fair to say that in relation to exploring commissioning arrangements for COPA, there’s a strong feeling that despite shifting sands, we are a step ahead of the commissioning environment in delivering person-centred and cost effective support.
As the OPCV project has developed we’ve explored different pathways, including how the integration of health and social care might influence the direction we try to take with this, although we’ve made strong progress establishing advocacy on the cancer pathway, funding has not yet followed. Partners have recently been exploring potential for advocacy within Sustainability and Transformation Plans but there is widespread agreement that older people, and/or cancer are a very small part of the plans, and budgets are reducing, so it will be further challenging to secure interest. Furthermore, we see potential for future influencing opportunities with the new Cancer Alliances rolled out from September 2016, but these have been slow to get off the ground in local areas:
“The size and shape of these Alliances are still being determined in conjunction with local teams, but will follow natural patient flows in cancer services. They will be crucial in driving change for clinical quality and outcomes at appropriate population levels for cancer pathways, and will be able to provide cancer specific leadership for the new Sustainability and Transformation Plan (STP) footprints.” (National Cancer Strategy, 2016)
On not having secured continuation funding for COPA, project partner I-CANN reflected “the new (Macmillan funded) cancer pathway service are very upset that we will no longer be delivering COPA, as they saw us as an integral part of their service, and that we could work in partnership to give more extensive support to a small number of individuals that they identified, however the CCG are unable to commit funding to allow us to continue the service.”
We have however seen some direct commissioning of services. Dorset Macmillan Advocacy (DMA) have been working with Royal Bournemouth Hospital (RBH) since November 2016 to pilot the use of advocacy for people who are undergoing diagnostic tests for lung, colorectal and urological cancers; the Dorset Appointment Advocacy Service.
Royal Bournemouth Hospital themselves are part of a national pilot that is looking to reduce timescales for diagnosis across these three cancer streams and approached DMA following receipt of a proposal to provide advocacy on the lung cancer pathway, to provide independent advocacy for those people who might like support to navigate the diagnostic processes and ensure their voice is heard within it. RBH have confirmed their funding of staff hours on this pilot until April 2017, but are currently considering the possibility of extending and widening the pilot beyond this. DMA hope to demonstrate the value of advocacy for the people they support who are undergoing diagnostic procedures, as well as demonstrating the benefits of advocacy to health care professionals.
4) There’s added value to outreach and building local connections so older people’s voices are heard
The OPCV project explored whether there were lessons to be learned from making and building on relationships with local Healthwatch, or from engaging with local health and wellbeing boards. Generally project partners reported enjoying good relationships with local Healthwatch, but these relationships did not yield the strategic influence we hoped for. In terms of the interactions project partner have had with local health structures, there has been a strong feeling that the health environment has been in a state of flux over the lifetime of this project, and so, like relationships with health professionals, good working relationships have been enjoyed, but these have proved difficult to sustain.
The OPCV programme has very much sought to amplify the voices of older people affected by cancer into health and care settings and so has had a strong focus on valuing older people as local assets and exploring how local communities can work together to promote COPA, share information and create stronger local networks for older people. To this end we have explored asset based community development approaches to giving older people a stronger voice, and generally projects have had strong community based relationships within their own local networks including local councils for voluntary services or similar local infrastructure bodies.
One project, the Beth Johnson Foundation used their annual conference to explore Cancer and Hidden Groups, theming their conference around how cancer is experienced by people with learning disabilities, LGBT, prisoners, and the homeless with a view to reaching out to provide advocacy support to these groups. One of our filming participants requested a DVD so he could share his filmed story with his local Church at Christmas, which resulted in a donation being made to the project, an example of older people being empowered to have their stories heard, making a contribution to their communities too.
5) There’s real potential for establishing advocacy on the cancer pathway, this system change takes time to embed
Where local cancer pathways are being developed partners are working to find a place for their advocacy services within service development. Sometimes this is about looking at the whole cancer pathway; as one partner explains “there is a much greater emphasis in both health and social care on ‘supported self-management’ which is illustrated by the Wessex Strategic Cancer Network’s ‘Rehabilitation, Reablement & Recovery Quality Guidance’ document that provides guidance and advice to commissioners for future services and should illustrate the need to commission services that can support an adult when recovery and rehabilitation may falter”. BRAP’s evaluation (forthcoming) of the wider COPA programme indicated that “at a national level, there are opportunities to argue that advocacy should be better integrated at key points of the care pathway. The case could usefully be made with both Cancer Alliances but also the National Cancer Vanguard which is currently piloting whole pathway approaches to commissioning and provision.”
Some COPA partners have had success in working on parts of the local cancer pathway, as this casestudy from Sandwell COPA project shows:
“The prescription Pads were introduced as part of our strategy of establishing referral pathways with professionals. During our initial meetings with health professionals a common theme that emerged was that they are so pushed for time that was a challenge for them to have to complete lengthy referral forms or take 20-30 minutes getting hold of someone on the phone and having to deal with the whole referral process with regard to passing on all relevant details that we might require. As part of our on-going discussions we identified that health professionals would be incentivised to refer into the project if the referral process could be made as simple and least time consuming as possible.
This went hand in hand with a range of other measures to encourage them to refer into the project such as raising awareness of what we do and developing their trust in our service to refer their patients as part of a broader referral pathway strategy. To this end we worked in collaboration with some health professionals, taking into account what would be the minimal amount of information we would require, and hence the Referral Prescription Pads were introduced.
We ensured that all relevant health professionals were given pads which could be easily carried with them and completed as they identified potential referrals. The pads included our fax number (as well as other contact details) to make the process as convenient for them as possible.
One of the other areas identified regarding reluctance to refer into other services by health professionals was that they told us that their referrals were rarely acknowledged and/or they were never informed as to whether the referral had been accepted, we adopted both procedures as part of our standard referral process.
Since we implemented use of our Referral Pads 28% of our referrals have been made on the Prescription Pads, predominantly from the CNSs.”
And we’ve made headway in working with health professionals to understand how advocacy can complement their role, as this clip also shows: