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Commissioning sustainable, patient-centred cancer support services like the Recovery Package can feel tough. Here a commissioner in Bristol shares their experience in the hope of helping and learning from others.
If there’s one thing I’ve picked up from other people’s blogs it’s that you need a good opening line to lure people in. I’m not sure an introduction is gripping enough in 2017 but I liked the 80’s... I’m Emma. I’m a Macmillan professional working at Bristol Clinical Commissioning Group (CCG) to implement our Living Well With and Beyond Cancer Strategy. Commissioning (which was described to me as a dark art when I started) is changing fast at the moment. I don’t know about you, but commissioning sustainable, patient-centred cancer support services feels like a real challenge.
As a way of sharing (and as a form of therapy), I’ll be blogging once a month to reflect on our learning in Bristol and to share ideas, reading suggestions and documents as we develop them. I’m hoping it will be a platform for a conversation for those of us who are trying to get our heads around how we can better deliver support for people to live well with and beyond cancer. This will be a warts and all account, not a ‘guide to…’. Other Recovery Package guides exist. Nor is it a ‘how to’ – we all need to find our way with this that fits our local contexts. Instead this blog is my contribution to us all sharing, thinking and being open about how we are all doing on this.
In the first instalment below I’m setting the scene. Over coming months I’ll take topics such as evaluation, commissioning levers and building networks and describe where we’re coming from locally and the steps we’re taking to affect change. Here goes.
In Bristol, like in many places, lots of work has been done by passionate, committed people to improve support to people so they can live well with and beyond cancer. Both of our Trusts are doing well in terms of stratified follow-up for breast, colorectal and prostate cancers. North Bristol NHS Trust was involved in the National Cancer Survivorship Initiative pilot and University Hospitals Bristol NHS Foundation Trust has just completed a local CQUIN to design new follow-up pathways.
We have five support workers and many Clinical Nurse Specialists carrying out Holistic Needs Assessments (HNAs), signposting, running health and well-being events and offering 1:1 support. Bristol CCG is using a local tariff and block contract to pay for recovery package activity. Macmillan is supporting local pilots for community based OT rehab workers, services to provide treatment support, fatigue management and pre-habilitation support. Local charities such as Penny Brohn and The Harbour are supporting people holistically and several health and well-being/self-management days and courses are on offer, both within the NHS and the voluntary sector.
However, it is still very much a work in progress. At the moment, you could say that support is delivered within our institutional boundaries. The type of support somebody might get depends on their cancer, the staff they meet, the Trust providing their treatment and, it is very hospital based.
Bristol’s Living Well With and Beyond Cancer (LWWBC) Strategy tries to address this by setting out how we can support all people affected by cancer to say 'I am living as well as I can with/beyond my cancer' by feeling ready for treatment, as well as possible and in control. It also sets out how Bristol can support carers, volunteers and staff so they have the resources they need. It was based on some brilliant literature reviews (download the literature review [PDF]) and engagement events (download the event presentation [PDF]) that were done before my time.
The LWWBC strategy was written in 2015. A time before STPs, Cancer Alliances, current financial constraints, primary care commissioning moving to CCG responsibility or change in our CCG leadership and commissioning footprint.
It’s an obvious point to make but these changes, particularly the financial pressures and new STP footprints, have huge consequences for how commissioners behave and therefore how we affect change. What better time to try and do things differently? Outcomes based commissioning, new models of care, accountable care organisations – living well with and beyond cancer services could make use of them all. But trying to re-design a service whilst commissioning itself is being re-designed feels like trying to drive change along a jelly-like road.
I’m starting here as I think it’s worth holding a mirror up to the context we are working within and acknowledging what is within our control and influence and, possibly more importantly, what isn’t.
In response to these realities, I’ve started to focus on a few areas, cost benefit analysis, developing our community of practice and self-preservation.
As I’ve said, we have a lot going on in Bristol under the banner of LWWBC. But that doesn’t mean we know what and how to commission for the future. With the help of Macmillan, we are working with health economists to pick apart what we are the costs of providing cancer support services, and who pays and what the benefits of our services are and who feels them. With this information, and through a series of participatory workshops, we’re aiming to develop our new and costed model for living well with and beyond cancer.
I’m recognising value in using my role to bring people together from across the system and how much it motivates us along the way. An expanding group of nurses, physios, OTs, managers, patients, support workers and psychologists have met to discuss elements of the strategy. Local Macmillan colleagues have supported us with croissants and a space. Unanimously positive feedback is the opportunity to meet other professionals from across the system. If things are this complex, change will inevitably be chaotic. Maybe a conversation between a psychologist and OT will have much more impact on our LWWBC agenda than my sparkling service specification. That’s sometimes a difficult thing to accept. In part because it makes the change so intangible and unpredictable and in part because it highlights the need to let go a little.
Finally, trying to implement a change is always a challenge. There are lots of people outside of the CCG that I’m working with and I am seeing myself as part of a virtual team or, our community of practice, as I’ve said above. However, it feels important to mention that at times this feels a little lonely. There is support out there though. The School for Change Agents, run by The Edge, is a free recorded course for anybody trying to affect change in health and care, designed to support you to ‘rock the boat while trying to remain in it’. I’m also finding being part of a Macmillan community is very motivating, there is a lot on offer, the System Redesign work, Connecting the Dots for Commissioners, regional education peer support events and professional coaching are all giving me confidence to rock our boat.
Each month I’m going to challenge myself to share one lesson. This month it’s this, I am valuing more and more the importance of understanding where we are each coming from and setting our destination together before embarking on the journey.
I’m challenging myself to be upfront and honest in this blog so maybe make a cup of tea and grab a ginger nut.
In Bristol we have been using a locally negotiated tariff for the Recovery Package for a few years; £100 for each HNA and Treatment Summary and £25 for attendance at a Health and Wellbeing Event. The tariff was set up based on averages of how long each activity takes (eg 60 minutes for a Holistic Needs Assessment, 15 minutes for a Treatment Summary), who does it and their ‘cost’ per hour. It assumes Band 6/7 CNSs undertake HNAs and Treatment Summaries and a mix of professionals from CNS, dietitians, physiotherapists and support workers are involved in the Health and Wellbeing Events. Another local Trust has a block contract. We’re in the process of reviewing both.
I know that lots of people around England are focusing their work on getting a similar tariff in place. In fact, I think that NHSE were even considering a national one. The negotiations for Bristol’s tariff pre-date me but I’ve done my best to reflect some of lessons below.
The tariff was set up a few years ago, when the financial situation didn’t feel as, um, tricky as it does now. There was also a commitment at a very senior level within the CCG and Trust to make the Recovery Package happen. The commitment was based on the need to commission the Recovery Package rather than explicitly showing ‘x’ intervention saves ‘£y’. Good times.
There were some teething problems, like the required systems not communicating which each other to allow payments to go through. There are ongoing issues locally, such as why the tariff is only available to one of our three Trusts; the Trust with the tariff is, I think, finding it easier to push forward with implementing the recovery package as they can show an income based on activity. The tariff has helped the Trust build a business case for support workers for example. Unsurprisingly though, it hasn’t meant there is a burgeoning number of new CNSs.
The tariff doesn’t have a detailed service specification and it is therefore being used in a very flexible way by the Trust. For example, they are trialling an early and generic (for all tumours) Health and Wellbeing Event, which although early days, is going down very well with patients. It is run by their new support workers and is being implemented on a weekly rolling programme. It is impressive to see a Trust be so responsive to patients’ needs and agile in their delivery. However, there may be some tension among commissioners about how flexibly the tariff is being used given it was based on a different model and therefore cost basis.
You might want to dunk your biscuit.
In reviewing our current commissioning situation, I have gone back to the original vision. In my opinion, the National Cancer Strategy sets out some bold, ambitious and motivating statements about how people affected by cancer should expect to be supported in the coming years.
We need to support people with cancer to return to as good a quality of life as possible after active treatment has ended, or support them to achieve their personal goals if they will be living with either primary or secondary cancer for some time. People require holistic support from diagnosis onwards, encompassing their physical, financial, psychosocial, and information and support needs, throughout their entire cancer journey. Achieving World Class Cancer Outcomes, National Strategy.
I am particularly inspired by ‘throughout their entire journey’ at the end there. And, with particular regard to that, I feel myself becoming both academically interested and unhealthily frustrated at how our system can nudge us to translate a vision in an unintentional direction.
The commissioning narrative is changing and we talk about ‘out of hospital care’ but on the ground I see a health and care system where secondary care has a large share of the resources. The Cancer Transformation Fund metrics focus on more upfront support (e.g. nothing about regular HNAs) rather than thinking about somebody’s ‘entire journey’ and, in my opinion are showing a secondary care bias. Finally, commissioning is largely focused on payment by results as our lever for change.
Are these system factors nudging us in the right direction?
It certainly feels the most well-trodden path to implement the Recovery Package is in secondary care, where patients only spend a small proportion of their cancer journey. Obviously that can achieve part of our outcome but what then? We talk about integrating services but concentrate on referral pathways to under resourced services rather than putting money in a pot for a support service that can wrap around the patient, wherever they may be receiving their care (in hospital, from their GP, or none at all).
If we step back and look at that ambition again 'People require holistic support from diagnosis onwards, encompassing their physical, financial, psychosocial, and information and support needs, throughout their entire cancer journey', I am questioning why many of us are limiting ourselves to interpreting that as implementing the Recovery Package within secondary care when we are talking about holistic support that may need to go on for years, outside of a hospital and requiring a knowledge of community based assets to meet the person’s needs.
Is it because we need to start somewhere and early on clinical input is still felt important? Is it because our financial situation means we can only offer this support upfront at the moment? Is it because our system makes it too difficult to do something else?
I fear we may be at risk of taking an idea which is firmly based in the social model, and medicalising it. There are areas that are pushing these boundaries and thinking about how to truly integrate a support service which uses the skills of different sectors effectively and efficiently to meet their population’s cancer support needs. The Improving the Cancer Journey work in Glasgow is an obvious and inspiring one. I have also spoken to colleagues in Wokingham and West Midlands who are working with voluntary sector organisations to deliver HNAs, Health and Wellbeing Events and self-management courses that are embedded in clinical pathways but delivered in the community. Locally, we are using the Cancer Transformation Funding to push ourselves to test out more community and ‘entire journey’ models of support.
I’m not intending to criticise secondary care’s willingness to adopt a model of care that requires deep cultural change and commitment to patient led support. Anything that makes a conversation in a hospital more holistic is a really positive thing in my mind. Nor do I want to imply that secondary care cannot deliver the Recovery Package. They can and are doing so in Bristol. But when patients I meet often tell me it was six months or two years post treatment that they really needed the wider support, I’m not content with seeing the Living With and Beyond Cancer agenda as the Recovery Package. Our challenge is how to commission something broader.
I hope your ginger nut sustained you and didn’t end up in the bottom of your mug. Please do get in touch or share thoughts through the Macmillan team.
You don’t need to face cancer alone. Find out more about our free support line, Macmillan nurses, information services and support groups near you.
The Recovery Package is a series of key interventions to support people affected by cancer. The Holistic Needs Assessment, Treatment Summary, Cancer Care Review, and Health and Well-being Clinics.
A tool to help you understand the changing story of cancer in your local area.
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Read Imogen's blog about her experience as a Macmillan support line volunteer. She highlights the benefits of talking about cancer and looks at some of the different ways people can start talking.
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