If you are an unpaid carer for a friend or family member, it wouldn't surprise me in the slightest if you haven't heard of the Care Act.
Even before my recent work as a panelist on a review by Carers Trust into how the Care Act is working for carers, I suspected that this piece of legislation wasn't embedded into the public consciousness, and the findings of a survey we carried out to underpin this work confirmed as much. Only 21% of carer respondents felt that things had changed positively for them as a result of the Care Act 2014, while 65% of carers said that they had not even had an assessment - those that had, waited, on average, 8 weeks for that assessment.
Those statistics are extremely disappointing when you consider that the Care Act was a seismic piece of legislation for carers. The Act came into force on 1 April 2015 and for the first time it puts carers' rights on an equal footing to the rights of the people they care for. It entitles carers to an assessment of their needs, taking into consideration their health and wellbeing, family relationships and their need to balance home life with education or work.
Alongside assessments, local authorities have a duty to provide advice and information to prevent carers' needs from deteriorating. While some local authorities are rising to the challenges posed by the Care Act, as documented in our report published on 4th July 2016, many aren't, which led to the chair of our review, former Care Minister, Prof Paul Burstow, to comment:
"We found evidence that when it comes to an assessment, the law is either poorly understood or ignored by those responsible. Too often it appears that carers are fobbed off with a one-off payment by local authorities as if that discharges the obligation to promote the carers' wellbeing."Perhaps even more telling, however, is that in relation to unpaid carers, Paul said:
"For many of the carers who responded to Carers Trust's call for evidence, the response was stark - the Act had made no difference. It was news to some that there were new rights as they simply hadn't heard of them."
How we bridge this divide between the power of legislation and the reality for carers is something that everyone involved in carers' services really needs to get to grips with. Paul Burstow summed up that challenge by saying:
"We know it's early days, but more work must be done to impress upon those responsible for the day-to-day implementation of the Act that business as usual is not good enough. The Care Act raises the bar for carers but to realise its potential, government, councils, social workers and carers' organisations all have more to do."
So how do we realise this potential? Self-identification is poor amongst carers - in the 19 years my father lived with dementia I never saw myself as a carer, just a daughter looking after her dad - so there are known barriers at the very beginning of any attempt to reach out to carers.
More joined up working between GP's, hospitals, local authorities, private care providers and the third sector (all of whom may identify a carer through their work), could improve identification rates, but having something tangible and holistic to offer carers once they have been identified is vital.
If a carer doesn't get an assessment that enables them to articulate their own personal needs and their family's needs, or they have to pay for services, then they may turn their back on 'the system' all together. Most carers simply don't have the time, or energy, to navigate through bureaucracy or change things that aren't working for them.
In our report we recommend that national and local Government, together with the NHS, urgently invest in the support needed to ensure that the new legal rights for carers are fully introduced in all areas. We also make it clear that on-going training, education and awareness for professionals is vital to support their frontline role.
In addition, we put forward recommendations around supporting carer health and wellbeing, personalisation of services, involving carers in designing services, the right to transition planning for young carers and parent carers, the need to reach out to ethnically diverse populations, and ultimately more financial support for our chronically underfunded and unsustainable social care system.
That last point, which for many gets to the heart of why the ambitions for the Care Act aren't being realized, is certainly a fair reflection of the current climate. However, for me, finding solutions is as much about creativity as it is requests for more money. Carers do amazing work in their unpaid role, and as a society we need to show the same resolve in finding ways to support them.