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Laura Collins, carer representative for the East Belfast Integrated Care Partnership is pictured (centre left) at a celebration event held by the Health and Social Care Board on 4 December 2014 to recognise the contribution of carers and service users. Also pictured (L-R): Dr Ian Clements, Chairman; Fionnuala McAndrew, Director of Social Care and Children; Jacqueline Magee, Personal and Public Involvement Officer; Dean Sullivan, Director of Commissioning; and Sinead Malone, Regional Integrated Care Business Support Manager.

By Laura Collins, carer representative for the East Belfast Integrated Care Partnership (ICP).

Laura Collins has been a full-time family carer for 33 years, and supports her two adult children. She has extensive experience in the community and voluntary sectors, and has formally represented carers at local, regional and national levels for 25 years.

She currently is involved in the Regional Social Work and Research Strategies, the Public Health Agency Personal and Public Involvement Group, Belfast Trust’s Personal and Public Involvement Steering Group and Carers Reference Group. Her special interests are autism, mental health/illness and bringing the evidence-base into practice.

Here she explains about her experience as an ICP carer representative.

The public consultation on the proposed reform of health and social care provision in Northern Ireland was completed in the winter of 2012 – it has since become known as Transforming Your Care. Most respondents were supportive of the move of many services from the acute sector into the community, and closer to home. The needs of carers almost topped the poll of all concerns raised by the general public. People sought flexible and appropriate respite for the thousands of carers in our community. The effective involvement of family carers in the planning and delivery of services was also advocated for. The Health and Social Care Board’s response was to commit to actively engaging with carers in the design of new care pathways.

Year upon year, and decade upon decade, I have seen so many empty promises in statutory documents. It was therefore quite a surprise, to hear about an opportunity to be actively involved, as a carer representative, and as an equal partner, within an ICP.

Photograph of Laura and her son pictured at a visit to Titanic Quarter.

Laura and her son pictured at a visit to Titanic Quarter.

Getting involved

I was appointed to my local East Belfast Committee, as I had the requisite experience – I had cared for family members who had experienced the medical conditions, which the ICPs are targeting regionally as clinical priorities (frail elderly, stroke, respiratory, diabetes and end of life). I fortunately had been involved in the regional autism pathway process for three years, so knew of the complexities of a regional project – maintaining communication and coordination across a network of stakeholders is challenging and takes time to get established. Membership of a range of Trust steering groups over the previous eight years, also gave me an insight into how different programmes of care were managed, often in silos of provision.

Despite having read all the briefing papers, it still took me a while to understand the many key aims of Transforming Your Care, and how all the new collaborative ICP networks would connect together. There were new people to get to know, new ways of working and new opportunities to grasp. The ‘shift left agenda’ seemed to be the ‘right direction of travel’, or, as most users or carers would probably say, “it is better to spend the limited money you have where it will have the most impact”.

Being supported

Thankfully, an excellent regional two-day induction was organised, which brought together ICP service users and carers. An independent training company encouraged us to “lead from our seats”. During these sessions, Health and Social Care Board staff listened to our concerns about how our voice could be strengthened in the clinical pathway discussions. Our views have not been filed away, as is often the case, but have been developed into an action plan.

Opportunities to attend events and hear about new service models have been very helpful. One such project was the Electronic Care Record, showcased at the NICON Conference. It has reduced patient waiting time for results; is connecting more people more quickly, and is freeing up time for patient care. eHealth will certainly bring some of the early transformational wins that we seek.

Wise men (and women) from the East

My specific ICP geographical area has the largest frail elderly population in Belfast, and this number is expected to rise. Our multidisciplinary working group was tasked with scoping current pathways, identifying gaps and developing solutions, in line with the key performance indicators of the commissioning specification. Simply put, we were to improve patient outcomes and communication; enable better movement between services; reduce blockages; support self-care and condition management, and so enable some disinvestment in the financing of acute services.

Both the committee and theworking group include clinical specialists, and representatives from the community and voluntary sectors. Places were allocated for users and carers also. The wide range of local membership with varied perspectives, knowledge and expertise facilitated thorough and robust discussion of the complex care and support needs of the frail elderly population in our area. An acute care at home model was developed, building on successful work already achieved to date.

What’s ahead?

Research is now showing that when individuals can plan their own pathway, system dependency is reduced and savings are made. Keeping close to clients’ aspirations and needs will be a touchstone for our process. Broadening out individual co-production into community engagement and development, will certainly be part of the implementation phase, which we are now entering.

I believe that we also need to improve the resilience of the health and social care workforce; build capacity for complex care coordination; and create partnerships that put prevention at the heart of the health service. This is the only sustainable model open to us. It is reassuring to know that health promotion, risk reduction, condition management, targeted support and tailored intervention are the bread-and-butter of all ICP programmes.

Within the ICP world, there has been a cultural shift – where clients and carers are viewed as assets, rather than deficits. Personally, I have found professionals have not been dismissive; they have been welcoming and very open to challenge. I am a ‘carer expert-by-experience’ and my contribution has been respected and supported over the past year. Many more carer and user voices in this journey will bring transformation a step closer.

I will end with the words of John Compton, former Chief Executive of Health and Social Care Board, on his retirement in March 2014: “If there is one thing I have learned over 40 years, it is that people make up the health and social care system – whether they provide, or receive, the care”.

I believe that real partnerships will bring real solutions. It is my hope that co-creation, co-production, co-audit and joint-shaping of evolving service models, will support “quality of life reality checks” of ongoing delivery, which will ensure patient experience gets better, with health and well-being improvement, even within the changing financial landscape.