The report from the Expert Advisory Panel on Adult Care & Support, Power to People: Proposals to reboot adult care and support in NI was published in December 2017. Among its 16 recommendations is a proposal that “the rights of family carers are put on a legal footing and that a strategy to bring them into the heart of transformation of adult care and support is adopted”.
Approximately 70 people, 50 of whom identified as carers, attended the event which was held at NICVA. Representatives from the Reform Team at the Department of Health presented to attendees and looked at why reform is needed; the background to the reform project; the Expert Panel; and next steps. Attendees were then invited to discuss the report and give feedback to the Department.
It was explained that there were several demographic and social factors behind the reasoning for reform:
- There will be an additional 250,000 people over the age of 65 in Northern Ireland by 2050 and the population of over-85s will see a three-fold increase in the same period
- There will be a trend of a declining working-age population as the increase in over-65s and over-85s will be greater than the increase in the overall population
- The population of older people will be greater than that of children and young people for the first time in 2028 and that gap will continue to grow.
- This will lead to a greater demand for care. An additional 20,101 care packages will be required in 2037 compared to 2016; an increase of 68%
Other factors driving reform included difficulties recruiting and retaining social care staff to deliver care, funding and sustaining delivering ‘more of the same’ to meet growing demand simply is not possible as there is no prospect of the health and social care budget significantly increasing. This was set in the context of the increasingly high expectations of service delivery.
The increasing pressure on unpaid family carers was also a key driver of reform – that carers often feel out of sight and undervalued by the health and social care system, despite the savings that the 214,000 unpaid carers in Northern Ireland bring to government.
The Reform Project
The Department said the Reform Project is a three-stage process.
Stage One commenced in autumn 2012 with the launch of the ‘Who Cares? The Future of Adult Care and Support in Northern Ireland’, a six-month consultation period lasting to March 2013.
Stage Two commenced in 2016 with the appointment of an Independent Expert Advisory Panel to develop proposals for change.
Stage Three will deal with the implementation of the recommendations from the Independent Expert Advisory Panel as well as identifying final reforms.
The Expert Advisory Panel
The Department said that as part of Stage Two of the reform process, Des Kelly and John Kennedy were appointed to lead an Independent Expert Advisory Panel, tasked with developing firm proposals for change. Over the next twelve months, the Expert Advisory Panel held a call for evidence, workshops, meetings and site visits as part of their review into adult social care.
The Panel’s report, Power to People: Proposals to reboot adult care and support in NI, was published in December 2017 and contained 16 proposals for change.
The report acknowledged that without carers, the health and social care system in Northern Ireland would collapse. Despite this, the report found that many carers remain unknown to the very system they are vital to and many do not feel they are treated as equal partners.
The Panel therefore concluded that carers’ rights in Northern Ireland must be strengthened and with greater support structures in place. Among the report’s 16 proposals is a proposal (Proposal 3) that “the rights of family carers are put on a legal footing and that a strategy to bring them into the heart of transformation of adult care and support is adopted” – in other words, a new strategy and carers legislation.
So, what is the Department doing with the proposals?
The Department updated that a Project Team has been tasked with developing an action plan setting out a proposed response to each of the Panel’s proposals. This would be subject to further public consultation in Spring 2019. Once the consultation process and analysis of responses has completed, the Department will move to Stage Three of the reform process, the implementation period.
The Department said that an Independent Carers Panel made up of 20 members is in the process of being designed. It was explained this panel would be appointed from an open recruitment process and is intended to ensure that the voice of carers is embedded in strategic decision making.
What did attendees at the event say?
Proposal 3 was universally accepted by attendees as a good idea in principle and was warmly received. However, there was a strong element of cynicism in the room as to how it will be implemented in practice and whether anything would change. This cynicism was evident when attendees were asked in one or two words, what came to mind when they think of ‘adult social care’. Among the most popular responses were ‘crisis’, ‘under-resourced’, ‘worry’, ‘money’ and ‘stress’.
Some in attendance felt they had heard ‘reform’ this before and past experiences led them to believe they were at the bottom of the health and social care agenda. Despite a willingness to be involved, some believed there was poor communication in the past with carers.
Some attendees had questions as to how the Review’s proposals would be resourced in a financially-constrained environment. Some expressed disappointment that the Review did not include parent-carers and young carers and wanted Stage 3 to address rights for those groups of carers.
Attendees felt the Department should learn from the experiences of the Care Act in England and advised the need for any carers legislation to be clear, transparent and be uniformly implemented across all HSC Trusts.
There was also a strong feeling that many carers are self-identifying, and in some cases, carers do not recognise themselves as such. It was suggested by many in the room that a public campaign was required raise the profile of carers and to inform carers of their role and rights.
Many had questions on the proposed Independent Carers Panel and urged the Department to ensure the Independent Carers Panel was fully representative, rural-proofed and that panel members are enabled to attend via remuneration and carer support/cover.
What did attendees think the challenges ahead were?
Attendees thought overcoming cynicism and rebuilding the trust of carers was one of the biggest challenges the Department faced as it continues with Stage 2 of the process. Despite this, there was a strong willingness, particularly from carers, to remain heavily involved in the reform process.
The lack of an Assembly and Executive was also cited as a challenge. While it was recognised that legislation and a final strategy was still some years away, with little clarity on the future of devolution, who would sign off on further consultation and a new Carers Strategy if there is no Health Minister, and where would a Carers Bill embark on its legislative process if there’s no Assembly?
What did attendees think a Carers Bill should include?
The proposal to legislate for carers was strongly welcomed by attendees. Among the suggestions for inclusion in a Carers Bill for Northern Ireland were:
- The word ‘Carer’ in the title of the legislation
- A clear legal definition of a carer
- A legal duty to identify all carers, including parent-carers and young carers
- A legal duty to provide support and information to carers
- The alignment of carers’ rights with other rights models, e.g. employment
- The state’s responsibilities to carers
- Provision of respite and breaks to carers
The Coalition of Carers’ Organisations will continue to work and engage with the Department of Health in the coming months as they finalise Stage Two of the reform process.
The Coalition would like to place on record its thanks to Dean Looney (Department of Health), Sarah-Megan Wylie (Department of Finance/Innovation Lab) and Anna Whicher (PDR/Cardiff Metropolitan University) for presenting at the event and engaging with attendees on the day.
Who are the Coalition of Carers Organisations NI?
The Coalition of Carers Organisations NI (formerly the Carers Coalition) is a coalition of organisations who are collaborating to advance the rights of carers in Northern Ireland. The coalition includes: Carers NI, NICVA, Cause, The Stroke Association, Marie Curie, Macmillan, Age NI, Positive Futures and Mencap. The Coalition was established after the publication of the DetailData story ‘Who Cares for Carers’ in June 2016.
The DetailData project was a BIG Lottery NI-funded partnership between NICVA and The Detail investigative journalism website and came to an end in March 2018.