Carers in crisis are struggling to find help

• More than 5,000 people share their stories as part of new research into what it’s like to care for a loved one.
• People report that support services are difficult to find, with many unaware until they hit breaking point.
• Councils lack the necessary data about local need to make strong case for extra investment.

A new briefing published today brings together the views and experiences of 5,447 carers from 27 communities across England.

These stories, gathered by independent health and care champion Healthwatch over the last two years, paint a stark picture of what it’s like trying to find and access help when taking on carer responsibilities for relatives, friends and neighbours.

Under the Care Act 2014, councils across England were given a key role in assessing the support needs of those providing unpaid care. Yet it is clear, at the moment, public awareness of this assessment process and the support made available is too low.

Many of those who shared their stories said they felt they only found out about the help on offer ‘by chance’ and only really started looking at their options when they had already started struggling.

New analysis of waiting time data conducted by Healthwatch England shows that on average people wait two months between contacting the local authority and actually being able to access services. Whilst this is not an excessive amount of time in its own right, for those seeking an assessment when already approaching a point of crisis these waits are creating incredible stress.

Often the result is that the person being cared for suffers, sometimes ending up in hospital or a residential care home. This can limit their independence, affect their quality of life and ultimately cost the NHS and social care sector more money.

Carers themselves are also affected, having to give up work because they can’t cope or becoming ill themselves. This can lead to long-term problems which mean people never return to work. The emotional toll of being a carer, in particular the feelings of ‘guilt’ around not being able to cope, can also leave lasting scars.

Whilst councils have a duty to support local carers, Healthwatch research found surprising gaps in the data collected by many local authorities, with 51 of the 152 local authorities asked unable to provide a recent idea of how many carers lived in their area and 72 councils unable to say how long carers on lists had been waiting.

More consistent and better data is urgently needed if councils are going to reach out to carers earlier and make a successful case for the necessary resources to meet local demand.

According to Carers UK unpaid carers currently contribute £132 billion pounds worth of care support to family and friends. This is more than seven times what the £17 billion councils spend annually. Carers Trust estimate it would take 4 million extra full-time paid social care staff to cover the work of unpaid family carers. Ensuring carers get the support they need is therefore vital to the sustainability of the care sector as a whole.

In June the Department of Health and Social Care published the Carers Action Plan setting out their aspirations for carer’s support over the next two years.

The government’s green paper on social care, expected later in the autumn, provides the perfect opportunity to set out how they will achieve these aspirations, and how councils can be resourced to implement the Care Act. Healthwatch England National Director and independent expert advising on the government’s social care green paper, Imelda Redmond CBE, said:

“This new research highlights the hard work being done and sacrifices being made by carers the length and breadth of the country. Quite simply, their efforts help keep the NHS and social care afloat. But the demands on carers are only going to grow over the coming years, as their numbers swell and our society ages. At the moment we have a system that waits for people to ask for help, which usually comes when they are on the brink of a crisis. To support carers effectively services need to be much more on the front foot. The green paper provides a brilliant opportunity for the Government to recognise the huge contribution carers make and put in motion plans that will ensure every carer gets the support they need, when they need it.”

Emily Holzhausen OBE, Director of Policy, Carers UK said:

“This new research from Healthwatch England highlights the scale and impact of the intense pressures unpaid carers face in looking after friends and relatives who are disabled, ill or frail. The unpaid support they provide is vital, but so often it comes at a cost to carers’ own health and wellbeing. Yet, without their support our social care system would collapse.

“Carers UK is extremely concerned that, at a time when the numbers of carers recorded as being supported is going down, the number of carers needing support is going up. This is going in entirely the wrong direction given our ageing population, and highlights the funding strain that local councils are under.

“This research shows the real need for councils to do more to identify, reach out and offer preventative support services to struggling carers before they reach the point of crisis. And central Government must provide the resource and leadership councils need to support carers more effectively. The Budget must inject much needed short term funding into the care system, with the Green Paper offering a clear opportunity to put plans in place to really improve the lot of carers. It is an opportunity that we cannot afford to miss.“

Later this week the Healthwatch network will be gathering in Stratford-upon-Avon to discuss the findings of this latest report and what the Government needs to do to address the needs of carers in the upcoming Social Care Green Paper.

Other items on the agenda at the 6th Healthwatch Network Annual Conference will include the NHS Long Term Plan and how communities can be involved as the plan develops, as well as how the half a million stories we hear each year can be used to shape policy solutions on everything from winter pressures to improving mental health support.