Empowering People and Communities Taskforce – Experience of Cancer Care
Tweet chats and workshop
Thank you to everyone who took part in the first tweet chat about experience of cancer care, which took place on 29 November 2017 – read a summary of the chat.
The insights that tweet chat participants provided were fed in to a workshop that took place on 12 December 2017 – this workshop involved a diverse range of people including clinicians and patient representatives. A number of commitments were made during the workshop which are summarised in this sketchnote:
These commitments, and other next steps were discussed during the second tweet chat, on 10 January 2018.
Presentations to the NHS England Board
A paper on the overall work of the taskforce was presented to the NHS England Board in February. You can watch the paper being discussed. The section on the taskforce is from approximately 45 minutes until 1 hour into the footage if you don’t want to watch the whole thing.
The feedback from the workshop has also led to a number of discussions about how we can better support a reduction in health inequalities, with the result that we were asked by Simon Stevens (Chief Executive of NHS England) to prepare a separate paper on health inequalities more broadly for the NHS England Board that took place on 29th March. The Board requested a more detailed paper to come back in May setting out what NHS England would do to reduce inequalities in national programmes and commissioning, including cancer, during 2018/19. Simon also confirmed that reducing health inequalities would be part of the new long term plan for the NHS; this plan is due in the Autumn. The March Board meeting was broadcast live, and a recording will be made available on this page https://www.england.nhs.uk/2018/03/nhs-england-board-meeting-29-march-2018/
Letter to the Cancer Programme
Lord Victor Adebowale as Chair of the Taskforce also wrote separately to the cancer programme in December 2017, setting out some clear recommendations that came from the workshop and the twitter chats. Following the Board meeting, the cancer programme will address both the recommendations from the taskforce and any new developments from the March Board discussion.
Key points from this letter include:
- The taskforce is impressed by the ambition of the cancer strategy and its impact on patient experience, for example the prospect of the new Faster Diagnosis Standard, which will reduce the period of greatest anxiety for patients and the pioneering development of a Quality of Life metric for life with and beyond cancer.
- The taskforce was also pleased to see that the quality of patient experience continues to improve in most NHS Trusts against the majority of measures, an excellent example of the bar being raised year-on-year to the benefit of patients.
- Whilst care quality and outcomes are improving for the majority of patients, some time in the workshop was spent understanding if anyone was being left behind. The efforts which have been made to improve the measurement of experience for Black and Minority Ethnic patients as well as children and young people were welcomed, but there was concern that both the quality of experience and clinical outcomes remain poorer for these groups. Some of the discriminatory practice reported by patients, such as the increased cost for some black and minority ethnic patients wanting appropriate wigs or on the provision of appropriate prosthetics are now quite longstanding. We would like to understand what the national programme can do to ensure that these, and similar inequalities, are addressed.
- Workshop participants were also appalled to hear directly from a young person with kidney cancer how she was laughed at when she raised her cancer fears with her GP. In addition, they noted that poverty still delays cancer diagnosis, with poorer patients more likely to be diagnosed in A&E. The poorer experiences of these groups of patients were highlighted in the Cancer Strategy and for cancer care to be genuinely world class, we need to improve experience and outcomes for all our patients with none left behind. The taskforce is therefore keen to hear how the national programme and Cancer Alliances are responding to the health inequalities identified in the strategy, narrowing the persistent inequalities in experience and outcome and in particular delivering tangible improvements for BME patients and children and young people as well as delivering earlier diagnosis for poorer patients.
- Patients and Voluntary Community and Social Enterprise (VCSE) organisations were strongly involved in the development of the Cancer Strategy and there is an equal appetite to be involved in the delivery of the programme. It was helpful for the taskforce to hear the experience of patients involved as lay members on the national programme as well as in Cancer Alliances and Sustainability and Transformation Partnerships. The taskforce was pleased to hear evidence of good practice, in which priorities and decisions had clearly been influenced by patients and communities. They were also encouraged that the cancer team are promoting good practice in patient and public involvement in Cancer Alliances. Yet they also heard of continued difficulties in hearing the voices of BME patients, as well as other groups who were less likely to be in the room when priorities are discussed, such as children and young people and people with Learning Disabilities.
- They heard of many good examples of working in partnership with cancer charities, but fewer where this engagement stretched into the wider VCSE sector. They understand that the Cancer Alliances are still building their approach and capability, which was reflected in the varied experiences of patient representatives. The cancer team has an important part to play in ensuring the excellent standards of participation set during the development of the strategy are continued in this delivery phase. The taskforce would encourage the team to be clear about their expectations of Cancer Alliances, demonstrating that patient involvement is an important criterion of success and asking questions about the diversity of patient engagement and the impact.
Looking to the future
In addition, the cancer programme has recruited a new patient and public engagement lead who will pick up the recommendations from the experience of cancer care workshop. The taskforce will be sharing further information about this in due course.
The Taskforce would like to once again thank everyone who has so far input into this work. Although there is clearly much more that still needs to be done, we hope you will agree that both the workshop and twitter chats have massively increased the awareness of a range of issues and urgency for action.