Personalisation and the carers agenda

Social care is rising up the government’s political agenda. When care minister Ivan Lewis responded to this year’s hard-hitting State of Social Care report from the Commission for Social Care Inspection (CSCI) with a review of eligibility criteria, he was announcing a policy shift with implications far beyond social care.

The CSCI’s report said that the current care system is a postcode lottery, and that the rather ironically titled Fair Access to Care Services (FACS) “is used as a crude tool to limit demand and leading to overwhelmingly poor quality life experiences for those who are deemed ineligible”.

Mantra

That verdict runs counter to the new mantra of health and social care: personalisation. Lewis’ vision for personalised care services, set out in “Putting People First”, is for people to be in control of their care, receiving care in their own homes rather than hospitals or institutions, and offered control of budgets or even cash instead of standardised services.

Alongside this agenda, reform of local government is breaking down the divisions between council departments, and between social care and health. Budgets are no longer ringfenced by central government and councils will work towards broad community-wide outcomes decided on the basis of local need. To achieve this, local agencies will have to find new ways of working together.

The logic of giving people greater choice and control in their support systems and how budgets are spent will surely become inescapable for all council and NHS services. A raft of strategy documents from across government are picking up the language: the Independent Living Strategy for disabled people from the Department for Work and Pensions the Strategy for Housing in an Aging Society from Communities and Local Government and the Lord Darzi review of the NHS.

Holistic

These documents look at holistic approaches which recognise that people exist in families and communities. The Department for Children, Schools and Families’ Families at Risk review proposes new intensive and tailored ways of supporting whole families with co-ordinated support from children’s and adults’ services, building on a more hands-on approach to supporting parents, set out in Every Parent Matters.

A government-wide rethink on caring relationships, both in families and in communities, is emerging. It is a vision of early, ­tailored support and it is in stark ­contrast to the verdict on FACS above. How will personalisation be delivered by services that are rationed by cash-strapped councils? Theoretical national legal entitlements to assessment and support are no longer local realities. With a tight spending period starting, and an even tighter one to follow, taxation is not going to fill that gap. So what is?

Part of the solution may lie in the economies of doing things better. In our work with carers we constantly come across situations where families with several members requiring support receive staggering numbers of assessments from a raft of different children’s, adults’ health and housing services, all of which result in them being told they do not meet eligibility thresholds.

Rationing

In other words, services are spending their resources on rationing support rather than providing it. Personalisation is already creating opportunities to co-ordinate the assessments and budgets of several services around one individual. We must look at how whole families can be given the option to be assessed and supported as one unit, by a range of children’s and adults’ services working together.

Young carers are a classic example of the need for this. Many young carers miss school days or experience isolation and emotional distress. But their disabled or sick parent may still be deemed ineligible for the support services needed to reduce the child’s caring role. This can remain the case even where the child is deemed “in need” of support by children’s services. A whole family assessment system that ­recognised a family’s needs are greater, or at least different, to the sum of its parts would fix this.

More effectively deployed services will require a new understanding of risk, which empowers families to take informed risks, and supports them in coping when support packages fail as a result. Currently, implementation of the personalisation agenda is in tension with the professionalisation of the social care workforce. In order to raise social work’s status and guard against abuse, care workers are increasingly expected to be registered, police checked and qualified.

Rigid

But personalisation aims to allow people to buy their care from the person of their choice, perhaps their neighbour or friend who shares their interests. Rigid registration requirements may reduce the risks in this, at least from the local authority’s point of view, but they limit the choice. Does this create a two-tier workforce?

And what of family carers who currently provide unpaid care? The current regulations make it very hard for them to be paid for their care but Lewis has floated the possibility of relaxing this rule, and it seems indefensible to maintain a system where someone can pay anyone they like to help them, apart from the person who does the bulk of the support.

This brings us to the only real opportunity the government has of making its care sums add up by addressing support for the UK’s six million family carers, who between them are reckoned to save us all £87bn each year. More than a million of them provide 50-plus hours of unpaid care per week. The current lack of consistent support for carers leaves 80% of them suffering ill health, many losing employment and thousands of caring relationships breaking down as the carer collapses under an unmanageable burden.

Thresholds

This is bad for carers and for those they care for, particularly those with variable conditions such as MS, or that do not meet the highest eligibility thresholds, such as many older people and people with mental health problems. The new understanding of care which policy makers are steadily approaching must place family carers at the heart of emerging solutions. Personalised support packages that rely on the unpaid caring of families, without involving those carers in planning and assessment, will prove to be pipe dreams.

Carers must not only be protected from ill health and losing employment. There must be an incentive to take on manageable caring roles, with information and support offered to anyone considering moving into a caring role. We must break down hierarchies in the care system and recognise carers, as well as those they care for, as partners in care.

Obligation

There is no obligation to care in the UK and consequently no shared understanding between state and families of where the balance of paid and unpaid caring should lie. As a result, some carers feel obliged to provide levels of caring that result in them leaving employment or even needing care themselves. Demographic projections predict that the numbers of carers will grow rapidly over the next 10 years. Most of us will move in and out of caring roles at some point in our lives, often when our parents become ­elderly. Caring must be brought out into the open, and not used as an ­unofficial, unsupported stopgap by hard-pressed services.

The prime minister’s Carers Strategy undoubtedly contains some very positive aspirations. But carers’ services in many areas would recognise CSCI’s judgement that few councils are taking a joined-up, strategic approach to helping carers care.

The issues carers face go to the heart of the debate on how much support adults needing care will be offered, and at what point. If the new strategy is to be a success, every government department involved in steering the delivery of services will need to understand its importance.

It will need to deliver a culture change that could make the difference between personalisation transforming the lives of millions, or remaining just another big idea that didn’t quite add up.

• Alex Fox is assistant director (policy and service development) at The Princess Royal Trust for Carers

• More on carers and benefits 

• Have your say on personalisation at www.tinyurl.com/3jbce9




More from Community Care

Comments are closed.