Does focus on services for the carer detract from a whole-family approach?

I've been thinking about what's changed

I’m coming to the end of 10 years in the carer’s movement so I’ve been thinking about what’s changed.

Every campaign and movement for change starts by carving out its identity. It has to be clear about who it’s for and who it’s not, so that, in our case, the government and the public understand who carers are and why their needs matter.

I think the carer’s movement has done that pretty well. People still say “carer” when they mean “paid care-worker”, but you only had to look at the three party leaders competing to sing the praises of unpaid family carers to realise that understanding of carers has hit the mainstream. I can’t imagine Thatcher, Kinnock and Steel/Owen having that conversation.

That necessary focus on carving out a space in public policy for carers has had some downsides, though. In fighting against being lumped together with services for people with long term conditions, we haven’t always had enough of a focus on whole-family solutions. Nine times out of ten, carers come to Carers’ Centres with a crisis in the life of the person they are caring for, which has in turn become a crisis for them. It is usually some time before the Centre can help that person to begin to reconnect with themselves as an individual, rather than seeing themselves solely as their relative or friend’s carer. In the messages we give to government, I think we are still finding the right balance between promoting the need for independent services which are first and foremost for the carer, and helping policy makers to understand that decisions made about people’s health and social care support are decisions that affect whole families.

Getting this right will become ever more important, because councils and the NHS are about to come under huge pressure to cut and amalgamate services and because we have seen the personalisation reforms (personal budgets, direct payments etc) have both good and bad effects on the people who continue to provide the bulk of many support packages: the unpaid carers.

We are all inter-connected and interdependent. Both those who give and those who receive care and support can be excluded from ordinary life chances such as employment, community life and full participation in family relationships.. The state can barely afford health and social care as it is. Without a whole-family approach that feels joined up and supportive to unpaid carers, as well as to the people they support, that funding gap will widen and we will again see the NHS and social services teeter on the brink of collapse.

But if over the next ten years, the carer’s movement can help to make it self-evident to every council and local NHS trust that carers are both fundamental to delivering services, and also individuals in their own right, the rewards unlocked for families and for the state will be huge.

While I’m moving on to a new job, I have been thinking about the many carers for whom caring is life-long. Working with carers has, I hope, left an indelible mark upon my life. I’m grateful for that and for the thousands of contributions of time, expertise and experiences The Trust receives from carers: there would be no change without you.

Alex

Alex Fox, guest blogger this week, is Director of Policy and Communications at The Princess Royal Trust for Carers

Personal budgets: carers must have a real choice

Liberal Democrat Shadow Health Secretary, Norman Lamb, speaking at The Trust's fringe event

They came in their droves. 10 minutes before the start of our event at the Lib Dem conference, we had already run out of seats and indeed people were having to stand outside. It seemed that personalising health and social care was a popular topic.

Tim Luckhurst chaired our event with Norman Lamb MP representing the Liberal Democrats. Tim recently lost his father to Motor Neurone Disease and praised the help his family received from their Carers’ Centre, so was a very able advocate. We also saw a video of a carer explaining the benefits and problems with having a budget to choose the care you receive rather than being given a care package.

It became clear that many delegates felt that the type of information, advocacy and brokerage that Carers’ Centres could provide are wholly necessary if people are able to manage their own care support. Choice is not real choice if it is not informed.

It was also made clear that carers must have a choice; the burden of managing a budget and organising care should not be dumped on the carer. Don, the carer in the video, explained how he was able to buy respite but then spent it doing paperwork!

And finally, people must have the choice to say no. Some people do not want to manage their own care and would rather social services provided them with a package. This is also linked to local authorities and health bodies ensuring that there is a range of services available for people to choose from.

Norman Lamb was quick to agree that for the Lib Dems personal budgets can give people more choice but that real choice meant informed choice and the choice of saying no. An important point was also made by two of his fellow Lib Dem MPs that services finding and identifying carers cannot be lost, or they won’t even get the chance to make any choices.

Take Care
Gordon

Individual Budgets: mixing business and family

When it comes to working with relatives, we don’t always know what the right advice is. I’m sure there’s an old saying about never mixing business and family, and yet family businesses are still common, and not just the sort run by the Mafia.

The mixing of business and family has even now spread into the social care system. With individual budgets, some people will be able to pay friends or relatives to provide care and support. There is an instinctive uneasiness amongst many people when this prospect is raised.

Some will feel it improper in some way that a family member should be paid from a budget to purchase care and support, when the person may have previously been providing it for free and thus is eating up some of the budget that would previously have been spent on other support. Or maybe, they feel that the person being cared for would feel under pressure to pay their relative, bringing money into the household, when they would rather spend the money on other support.

Looking at it from the carer’s viewpoint, some will think that if a carer accepts payment they will feel even more obliged and burdened to provide all care and support. Or will it make the carer subservient to their friend or relative, creating a boss – employee type relationship? Some fear what will happen when a person has to sack their friend or relative as their paid care worker.

Looking at what might go wrong, it might be tempting to say we should just ban anybody using an individual budget to pay a relative to provide support. Using that TV programme ‘Who do you think you are?’ we could find out everybody’s family tree down to first cousins and strike them from the list. Who is a friend would be harder to define, but surely Facebook must be able to help with this?

We are right to consider what could go wrong and potential ramifications, but we cannot restrict all that we do based on what is the worst that could happen. Likewise, we should never restrain progress until we have found a solution to everything that might go wrong. Firstly, no solution will ever be perfect for every situation, and secondly there will always be something that we had not thought of that will go wrong anyway.

I met a man last week who had cared for his wife for two years before she died. He gave up his work to look after her, which allowed her to continue working as long as she could. She had a personal budget that allowed her to pay other friends or relatives to look after her while her husband had a break.

He recounted how before the personal budget, they did not want to ask friends or family for help; they didn’t want to impose on them. Then when they had the budget, they felt it was ok to ask friends and family for help as they could offer payment in return. Of course, they found that friends and family would not take a dime from the couple who were having such a horrible time.

It was resolved when the couple explained to family and friends that if they did not come in to provide support and take the money, then the couple would have to pay a stranger to do it. They would much prefer it was friends or family who were coming into their home to care for her in the last few months and weeks.

This was not an example of a case where a carer living with the cared-for was receiving a payment, which is where most of the worries lie. But nevertheless it showed me a different outcome than the worst case scenario. It showed me what can be achieved and maybe would be achieved more often than not. It showed me that we should not extinguish the hopes of many families because we fear it could go wrong in a few.

Take Care
Gordon

(Society Guardian ran an interesting article last year on how individual budgets have affected the lives of five different people)