Impact case study database

Research by Santin et al (R1, R2, and R3) led to improvements in health services for over 1,000 cancer survivors in NI every year, which equates to 6,000 since 2014 (S1, S2 & S3). The research first informed a process of engagement with stakeholders initiated by Macmillan Cancer Care, including the Health and Social Care Public Health Agency, all five Health and Social Care (HSC) Trusts and Northern Ireland Cancer Network (NICAN), and the Northern Ireland Cancer Consumer Forum and the research team which focused on service development solutions to the problems. Secondly, on the basis of this partnership, Macmillan Cancer Care agreed to invest GBP1,300,000 in the ‘Transforming Cancer Follow-up Programme’ (S4) in NHS of NI. This programme produced the following benefits:

• The creation of 6 new fixed term 3-year senior NHS posts responsible for service development of a new model of follow-up care and 3 new permanent clinical posts (2 colorectal nurse specialists in the Northern Health and Social Care Trust (NHSCT) and a Specialist GI dietician to implement the model (still in post at time of submission) (S1).

• By 2015, this new model of ‘a recovery package’ led to 58% of newly diagnosed breast cancer patients entering the Self-Directed Aftercare (SDA) pathway ( S2,S5). As a result, approximately 60% (1,478 per year or approximately 7,500 since 2014) of newly diagnosed breast cancer patients in NI are now discharged to SDA and are receiving information and support tailored to their needs. Staff identified a number of benefits:

• Better informed patients with empowerment to self-manage (S2,S3,S5)

• Less travel for patients and less time spent waiting at clinics (S2,S5)

• Reduced anxiety ( S2,S5)

• An independent impact evaluation of ‘the recovery package’ on Northern-Ireland programmes for breast, prostate, colorectal, haematological, gynaecological, dermatological, renal and head and neck cancer services (S2,S5), demonstrates direct improvements in the care of at least 1000 cancer survivors across all of NI every year ( S3), i.e.:

• Over 1,000 new patients allocated to the Self Directed Aftercare pathway (including 60% of breast cancer patients) between April 2015 and March 2016 with the pattern continuing annually (S3).

• A 40% (approximately 1000 patients) reduction in dual speciality follow-up (S3).

• 2,724 (40%) reduction in breast cancer patients waiting for surgical review ( S3).

Furthermore, in one specific Trust the improvements for approximately 3,400 patients per year have meant a

• 24% (between 2015 and 2018) improvement in accessing a clinical nurse specialist (S1)

• 10% (between 2015 and 2018) improvement of patients given information about support and self-help groups (S1)

• 11% (between 2015 and 2018) improvement in number of patients given access to financial help and benefits (S1)

• 10% (between 2015 and 2018) improvement in the number of patients who feel they had been given enough care and support after treatment (S1)

The independent evaluation (S2,S5) also attested to the implementation of health and wellbeing events across all HSC Trusts to help people affected by cancer and their family to self-manage their condition with evaluation demonstrating that patients who attend

• are more confident to challenge information

• make informed decisions

• cope with the physical and emotional impact of cancer and its treatment (S1,S2)

Research by Santin et al. (R4,R5) has also led to improved service provision for caregivers of cancer survivors in Northern Ireland, Australia and Vietnam.

The second phase of research (R4,R5) involved the co-design of a new online support for informal cancer carers ‘Cancer Caring Coping’ ( www.cancercaringcoping.com).

Cancer Caring Coping is a one-stop, online, multi-media website tailored to support carers from diagnosis to possible bereavement, supplemented by advice from professionals. The resource also acts as a portal to local voluntary, charitable, health, and social care services (S6). The development of the resource was designed in partnership with 2 HSC Trusts, and UK cancer charities including The Northern Ireland Cancer Consumer Forum, Macmillan Support and Information Centre, Men’s Health Forum in Ireland, Cancer Lifeline, NI Cancer Network, Charis Cancer Care, Pancreatic Cancer Support and Action, together with 79 cancer carers.

Based on this research and partnership, NHS providers in all HSC Trusts, at cancer diagnosis, now routinely provide caregivers with promotional material signposting over 10,000 caregivers per year to the resource (S1). Initial evaluation indicates that the resource is able to meet the information needs of informal cancer carers (R1). The resource has also been included within an essential care and cancer tool kit launched by the European Association Working For Carers (Eurocarers) (S7). This model of support for carers has been adopted internationally with a Vietnamese and Australian version of the resource underway (S8,S9).

Santin and the QUB research team, in partnership with cancer service providers and the state Cancer Councils in Australia, are delivering an Australian version of the ‘Cancer Caring Coping’ resource, with a plan for nationwide implementation by cancer services in Australia in 2021. This is funded by the Cancer Council of Australia (S8).

A similar partnership is underway with 5 cancer hospitals across Vietnam. This work has led to the development of a cancer research consortium bringing together experts who have co-designed an adaptation of the ‘Cancer Caring Coping’ resource for nationwide use (S9).