Drawing on the expertise of Scotland's unpaid carers is a driving force for change, writes Ian Welsh.
At the ALLIANCE, drawing on the voice, experience and expertise of unpaid carers is the driving force behind a number of our programmes.
Through our growing ‘Involvement Network’, we have been able to support people who use support and services, including carers, to contribute to a diverse range of campaigning and policy activities. Additionally, through our role in the Scottish National Action Plan for Human Rights Health and Social Care Action Group, we will be working with the Scottish Government and others to progress the commitment to a new ‘Carers Rights Charter for Scotland.’
Another example is our Dementia Carer Voices project, which has provided a platform for carers to share their experiences of caring for a loved one living with dementia. The hundreds of letters the project has collected from carers provide an insight into a world of crisis situations, ‘lost futures’ and all too often ‘fights’ or ‘struggles’ to access support. After reading them, it is impossible not to be left asking the question – what more can, and should be done to support Scotland’s carers?
This is the issue that the Scottish Government recently invited local authorities, health boards, third sector organisations and carers themselves to consider as part of their consultation on new legislation to “promote, defend and extend” the rights of carers and young carers across the country.
Within their proposals the carer’s assessment – the gateway to potential support for the carer – is identified as a key area for reform, with a number of changes aimed at improving the uptake, and quality of the process. These include widening the current eligibility rules to extend coverage to all carers and breaking away from the language of “assessment” by changing their name to the more appealing “Carer Support Plan.”
The new law won’t prescribe a list of issues that the Carer’s Support Plan must include, perhaps a wise move to avoid it being construed as a “tick-box” exercise.
We feel, however, that this risks missing an opportunity to provide support to a group of carers who are often overlooked. One of our members, ENABLE Scotland, has been at the forefront of advocating on behalf of older carers of people with learning disabilities, calling for additional support to help them to plan for a time when they are no longer able to care. The growing number of people with learning disabilities living for longer, whilst a happy problem to have, means that this is now more important than ever – but most family carers don’t have a written plan for an emergency and many haven’t communicated the wishes of the person they care for to a family member.
That’s why we’ve backed ENABLE Scotland’s calls to ensure carers are supported as part of their Support Plan to consider what arrangements should be put in place should an emergency situation arise. This legislation has the potential to not only provide reassurance and peace of mind for the carer, but to improve outcomes for the cared-for person by reducing the risk of inappropriate admissions to hospital or care home settings.
No matter what name it is given, the value that carers attach to the assessment process is unsurprisingly most closely determined by its’ overall outcome in terms of opening the door to services and support that assist them in their caring role.
Although most carers currently have a right to an assessment, they do not enjoy the corresponding right to receive the services they are assessed as needing – an anomaly which can understandably be the source of much frustration and risks rendering the process, in the words of one carer, simply a “paper exercise.”
The proposals could change this, with the potential introduction of a new duty on local authorities requiring them for the first time to provide support to carers who meet defined eligibility criteria. Along with our members from the National Carer Organisations including Carers Scotland, the Coalition of Carers in Scotland and Carers Trust Scotland, we are hopeful that this move could provide much-needed clarity to carers on what they are entitled to and address current inconsistencies in access to support both across and within local authority areas.
Its success however, would ultimately depend on the development of the eligibility criteria for carer support and particularly, the level at which this is set. There is a danger that, if this is set too high, we risk losing the benefits of preventative, often inexpensive interventions that can enable carers to maintain their caring role, delay or prevent the need for crisis interventions and therefore produce cost savings by reducing the need for more acute services at a later stage.
The contribution of unpaid carers will be central to achieving our collective vision for the future of Health and Social Care, in which everyone is able to live longer, healthier lives at home, or in a homely setting. It is therefore vital that we seize this opportunity to ensure that effective and efficient support for carers, preventing future need, is in place to support this shift in the balance of care without creating an unmanageable burden on Scotland’s carers, and prevent today’s carers from becoming tomorrow’s cared for.