King's Fund report highlights the needs of unpaid carers

A report by The King’s Fund has highlighted the need for better support for unpaid carers. The report, Caring in a Complex World, says that each year in England, unpaid family carers provide the equivalent of 4 million paid care workers or 7.9 billion hours of care to those who depend on them as a result of illness, disability and other conditions. Unpaid family carers often do not identify themselves as ‘carers’, but without them the system would collapse. However, many carers are unable to access support for their own needs.

How many unpaid carers are providing care in England?

The King’s Fund identified that more research is needed to find out how many people in England provide unpaid care. Unpaid carers who are also parents of disabled children or care for dependent relatives may not see themselves as carers, and data sources use varying criteria.  The 2021 Census found that around 4.7 million people over the age of five years old provided unpaid care in England, equivalent to 8.9% of the population. The Health Survey for England 2019 did not include children in its data, but found that 17% of adults said they provided unpaid help or support to at least one person.

Data from these and other sources suggest that more females provide unpaid care than males and that the proportion of unpaid carers was highest amongst women aged 55 to 64 (34 %) and men aged 65 to 74 (19 %).  Carers from minority ethnic backgrounds provided more hours of care than carers of white ethnicity, as did those in the most deprived areas. Geographically, in 2021, the north-east of England had the largest proportion of unpaid carers (10.1%) and the largest proportion (3.4%) of people providing 50 or more hours of unpaid care per week. London had the smallest proportion of unpaid carers (7.8%).

What do unpaid family carers do?

The Health Survey for England 2019 found that most unpaid carers were family members, of which 14% were caring for a son or daughter and 18% were caring for their spouse or partner. The type of care and support given ranged from keeping an eye on someone to providing practical help (67%), physical help (34%), personal care (28%) or helping to deal with care services and benefits (26 %).

The report pointed out that in practice, often a whole family may be involved in caring for a family member, or one carer may provide care for more than one family member. Many unpaid carers also have multiple roles in addition to the physical or practical care they provide, including the time-consuming and wearying tasks involved in coordinating care, such as communicating and liaising between multiple health and care sector organisations, chasing referrals, arranging appointments and sourcing information.

The Personal Social Services Survey of Adult Carers found that almost half of all adult unpaid carers (49.9 %) were caring for someone with a physical disability. Other reasons for providing unpaid care included longstanding illness (38.5%), dementia (35.4%), sight or hearing loss, mental health conditions and learning disability.

Why do family carers need support?

The Health Survey also found that caring responsibilities affected carers’ health (52%), tiredness (36%), stress (32%) and sleep (26%). The Adult Carers survey found that in addition to feelings of tiredness, stress, disturbed sleep and depression, almost half of all unpaid carers experienced financial difficulties as a result of their caring role.

Although approximately 1.4 million unpaid carers in England should be eligible for Carer’s Allowance, benefit rules mean that only around 1 million people receive Carer’s Allowance.  The number of carers who receive direct support from local authorities has not changed from 2015/16 to 2021/22 but the type of available ‘support’ has changed towards signposting and advice, leaving fewer carers receiving paid financial support. The number of people receiving respite care has also significantly decreased.

Unpaid carers’ difficulties with accessing the support they need for the people they care for or for their own needs are increased when health and care systems are not joined up or integrated. Issues such as funding and workforce shortages affecting health and support services have a direct impact on carers’ health and wellbeing because they are left to fill in the gaps for the people who depend on them for care. Carers’ own health needs and financial difficulties have increased over time, affecting their potential ability to provide ongoing care in future, but carers reported having to put their own needs aside.  Some carers reported only being offered access to support services when they had already reached breaking point.

Where support from paid carers was provided, lack of continuity often led to additional stress for the carer and the person receiving care. The King’s Fund heard from one family whose son had 143 different care workers during a year, of which only 50 have appeared more than once. The unpaid family carer had to train each of these carers in how to meet his specialised needs, adding significantly to the family’s stress from the time and effort associated with receiving the support and the emotional effect of having so many strangers come into their home.

The King’s Fund repeatedly heard from unpaid carers that the quality and extent of the care given to the person they were caring for was of paramount importance to them and would make the greatest difference to their lives.

How do compensation claims help the families of those needing care?

When good quality, consistent care is not accessible through the health and social care system, families whose brain-injured or neurologically disabled children are eligible for medical negligence compensation often find that their child’s claim is the best way to ensure their child receives specialist care. In fact, many families who have coped throughout the early years of their child’s cerebral palsy or neurodevelopmental condition later find that the growing child’s increasing care needs are the deciding factor in whether or not to pursue a claim.

Loving and devoted parents spend many daylight and night-time hours caring for their disabled child’s specialist needs, reducing the time and attention they can give to their other children and their ability to work, with a resulting effect on family finances, in a way that affects both the disabled child’s and the entire family’s quality of life.

Families can feel trapped in these situations, wholeheartedly accepting that it is their responsibility to provide full time care to their child, whilst feeling guilty about wanting or needing a break or additional support. But there is a time limit to this type of care which becomes infeasible as the caring parent ages and is physically unable to provide the care, with the prospect in many cases of ultimately being outlived by their permanently dependent child. The relentless demands of caring full time for a severely injured child without adequate respite and support can affect the physical and mental health and wellbeing of even the most devoted and loving parent.  In addition, as the child develops and grows through childhood into teenage years, many need  a different level of support to be able to engage in higher/further education or work, and to live a more independent life.

We understand that it takes courage for a parent who has coped alone for years to accept that it might be in their child’s best interests to seek help. Worries can be driven by unjustified feelings of guilt or failure, or by fears about what neighbours, friends or even other family members might say. We find it reassures caring parents to understand that seeking help with care does not mean giving up their parental involvement and ‘first place’ in looking after and providing for their child.

Compensation for care can have a life-changing impact on the child or teenager’s ability to participate in educational and social activities, their future independence, as well as restoring family roles and relationships to a more normal sense of family life. Parents are freed up to be parents, providing love, support and guidance whilst enjoying time with the disabled child and any other siblings, knowing that alongside their own parental support there is professional care to ensure that the child’s additional disability-related needs are met.

The level of professional care that is provided will depend on the child’s needs and the family’s preference, and may change over time. Parents may prefer to continue providing a larger proportion of the child’s daily care in the early years, with the peace of mind that there is money set aside to provide for their child’s care later in their life. In the meantime, additional support provides help for specific activities or at key times during the day, to provide respite breaks or assist with physically challenging activities, such as when the child and their family go away together on holiday. Where the child’s disability is severe, carers may also provide help with night-time care. In most cases involving severe disability, the claim also provides for the cost of necessary home adaptations or a move to more suitable accommodation to ensure that the child can actively participate in family life and have their specialist needs met without the presence of carers becoming intrusive owing to lack of bedrooms, bathrooms or other living space.

As the King’s Fund noted, the pressures of caring often arise from more than merely the physical aspects of the carer’s role. That’s why claims involving significant care needs also provide for case management support for the child. The professional case manager works with closely with the family and understands the child’s needs. Put simply, they handle the ‘paperwork and admin’, which usually includes providing support with coordination, recruitment and employment of carers, hospital and therapists appointments, provision of specialist equipment, and liaison with the Court of Protection, solicitors, local authorities or anyone else involved in providing what is needed for the child’s specialist care.

The child’s ability to pay for lifelong care is protected in various ways, depending on their needs, expected lifespan and mental capacity, by a combination of guaranteed, lifelong, annual periodical payments (PPO) and lump sums, protected by a personal injury trust or the Court of Protection, so that money is available to pay for care as and when it is needed but properly managed and protected throughout the child’s life.  In our experience, this assurance gives the child’s parents peace of mind.

If you are caring for a child or teenager with cerebral palsy or neurological disability or have been contacted by HSIB/HSSIB/CQC or NHS Resolution, you can talk to a solicitor for advice about how to respond or make a claim by contacting us.