The challenge: let's make personalisation real for every carer
As the language of personalisation becomes more and more part of the social care furniture, many carers are experiencing the benefits, along with the people they care for, of feeling more in control of the kind of care they receive, who from, and how. It's been a tremendous step forward. This year, we held workshops with carers across England as part of our Making it Real for Carers project making sure personalisation is very firmly a thing for carers too.
What carers told us was clear. When you get a personal budget for the person you care for, and it is all up and running with systems are in place, it can really deliver results and better quality of life for everyone. So far so good. But they also spoke about the challenges - sometimes the system still is far from clear, sometimes it takes far too long to get everything in place, and sometimes carers overwhelmed with the admin involved. Carers Trust developed a training package - designed by carers - called "What on earth are personal budgets? (opens new window)" and showed that the benefits of supporting carers to understand how it all works and use personal budgets to their best advantage, as well as the side benefit of meeting fellow carers and developing their informal support network, were well worth the small amount of funding invested by their local authority in making this happen.
So where next? Greater bedding in does mean greater maturity in the system and in some places, professionals are more prepared to let people be adventurous in managing their own care and finding their own solutions. That is what personalisation is all about, after all. As one carer said: Over the top risk assessments can get in the way of me having a life.
However, for people whose personal budgets are managed on their behalf by the local authority, there is still a risk that personalisation may not mean that much in practice. There is a genuine concern that some of these are people who have simply been administratively switched from a commissioned service to a nominal personal budget. This is highlighted by research that found that individuals with managed care were less likely to know that they had a choice in the care services they received, or to have been offered any choice . There are serious questions to be asked as to whether this can be considered a personal budget in any meaningful sense.
For those self-funding, there is still some way to go in ensuring they have access to the range of information and advice needed to support them through the difficult journey of arranging and managing care, and paying for the privilege with their own hard saved resources. Carers often report this as one of their most agonising times- trying to make decisions and spend significant money on behalf of sometime else, desperately hoping they are making the right decisions. It's bizarre that, when so much is at stake, self-funders still often have little recourse to the support they need.
The Care Bill waves a flag of hope that some of these issues will soon be addressed in every local authority area and carers will finally have a right to assessment and support in their own right - through a personal budget of their own. But the devil is in the as yet unfinalised detail.
Eligibility criteria may set the bar so high that although they may get an assessment, most carers won't be able access to this vitally needed support until their situation is really dire. It would be a curious way to work - to recognise the work carers do and the fundamental contribution they make, to note the needs they have but then not make the small amount of resource available to meet that need if it is not deemed eligible. There will be universal information advice and advocacy of course. But one of my worst fears is that in some cases, the result of all the hard work going to in to identification, engagement and assessment of carers, will be to finally feed back that we think they need a break but they'll have to pay for it themselves. Carers would have every right to feel nonplussed.
A final word about NHS Continuing Care. In our workshops around the country, carers again and again spoke of their incredible frustration at finding, at the point they are deemed to be eligible for NHS Continuing Care, that all the choice and control they were enjoying was pulled away from under them, dropping them into a chasm of delays and rigid pathways. The impact this has on carers - for example on their wellbeing and ability to stay in work, can be profound. There is an opportunity for integration agenda to address this nonsensical situation as a priority and not leave those with the greatest need with the least choice.