Carers Action Plan 2018-20: Supporting Carers Today

Baroness Brinton Excerpts

Thursday 21st June 2018 Lords Chamber

[Baroness Brinton (LD)]

My Lords, I, too, congratulate the noble Baroness, Lady Redfern, on securing this important debate. I will focus on two particular areas of the carers action plan. The first is carers of young people and children. I shall refer to them as parent carers, but it also covers other family members, foster parents and guardians. I also want to focus on young carers, given the complex lives they lead. While the carers action plan represents some progress for carer identification and visibility and carer skills, I have yet to be convinced that it addresses the everyday needs of carers across the country, especially those caring for young people and children. They face very different circumstances from those caring for the elderly, who are the vast majority of carers in this country.

The Care Act 2014 set out a clear pathway for implementing a cap on the cost of care. The lack of key skills, time or funds should not prevent anyone from accessing the care they need, above and beyond the time committed to them by their families. Half of working age carers live in a household where no one is in paid work, and nearly 30% have seen a drop of £20,000 or more in their household income as a result of caring. Frequently, they also have substantially increased heating and transport costs, and special equipment costs—carers and their families face significantly higher costs of living across the board than the rest of the population. We cannot allow the realities of the costs of caring to become a barrier to receiving care.

These families, particularly those caring for children and young people, have other support needs. But things such as short breaks are increasingly being cut by cash-strapped local authorities. The Carers Action Plan says:

“The Department of Health and Social Care will fund a project on actions to promote best practice for local authorities, clinical commissioning groups, and other service providers and commissioners on carer breaks and respite care. This will include promotion of the existing option for carers and individuals to use personal budgets or direct payments to help pay for alternative care arrangements while carers take a break”.


Will Ministers make sure that short breaks and respite care for disabled children are specifically included within the scope of this project? Will the Minister review the funding of short-break provision for disabled children and their families?

The action plan also says:

“The Department of Health and Social Care will fund a project to support parent carers to navigate the transition from child to adult services as their child approaches the age of 18”.


Will the Minister make sure that this project includes young people with life-limiting and life-threatening conditions within its scope? These young people often have to cope with a cliff edge in their care as they transition to adulthood—just at the point at which their health is deteriorating. Children’s hospices provide crucial support for parents and carers, allowing them to take time for respite and preventing burnout, yet children’s hospices receive, on average, 22% of their funding from statutory sources, compared with an average of 33% for adult hospices. Can the Minister commit to addressing this funding gap by increasing the children’s hospice grant to £25 million per year? Can she commit to producing a funded children’s palliative care strategy that takes a family-centred and holistic approach to health, social care and educational interventions, many of which are suffering at the moment because there is not enough co-ordination between the different agencies involved?

The Disabled Children’s Partnership, a coalition of 60 organisations campaigning for improved health and social care for children and their families, has identified the lack of collaboration between services as a major challenge for disabled children and their families. Will the Minister help to improve health and social care services for disabled children by providing an early intervention and family resilience fund? Will she commission a review of health and social care law to strengthen and clarify rights and entitlements for disabled children and their families?

The action plan highlights a programme in the works to train local communities to identify young carers, and this is welcome. It seeks to provide the public at large with the skills to correctly engage with young people and make sure that they are signposted to the services they need. According to estimates, there could now be more than 700,000 young carers in the UK. It is clear that schools become the primary stress point for these children. Some 27% of secondary school-age carers experience educational difficulties or miss school. More than 40% of young people caring for sufferers of addiction suffer educational difficulties. According to Family Action’s 2012 report on young carers, most schools do not know about their pupils who are carers. Being a young carer can be a hidden cause of poor attendance, underachievement and bullying, with many young carers dropping out of school and achieving no qualifications. A 2012 survey for the Princess Royal Trust for Carers found that 68% of young carers experience bullying at school—that is shocking—and 39% said that nobody at school was aware of their caring role.

Schools must identify and support young carers. Teachers should be empowered to recognise the signs and reach out, and we must ensure that they have the knowledge to point students and parents in the right direction. As a primary point of social contact, the role of schools is especially promising for carers in the BAME communities. Critically, the action plan rightly points out in paragraph 3.4 the need to reach out to these communities, and schools have a clear role in doing so for young carers.

Many more even younger pupils are likely to have caring roles that go unnoticed. Nikki cared for her severely disabled son for more than 10 years until his death last summer. In her moving blog online, she recounts how she had to give up her career and tells of her social isolation while looking after her son with his debilitating illness. It was only after Lennon died that she realised the profound role her two young daughters had played in his care. She wrote:

“I had never thought of my daughters ... as being young carers and I had never identified them to … our local charity supporting carers … although their school did know about Lennon and that their home life was not ‘normal’ ... I thought you could only be a young carer if you were a child caring for their parent ... At a time when they should be out having fun with their friends, doing homework, and worrying about what clothes they should wear, young carers are busy helping out with cooking, cleaning and laundry, and providing both emotional support and physical care”.


A young man aged 10 said to his respite foster carer when his mother was in a hospice with a terminal condition, “At least I can sleep at night because I know someone is watching if mum’s still breathing”. Nikki’s story is a clear indication of how societal awareness and carer identification are and must be key aspects of any further action. It also shows that our aid and support for parent carers and carers returning to the workforce are severely lacking.

The action plan has one glaring omission. There is virtually no reference to any detailed projects for parent carers of disabled and severely ill young people and children. We must acknowledge the monetary, medical and emotional challenges faced by parent carers of disabled and ill children. In the case of bereavement in paragraph 1.2, we must provide support for the singularly devastating effects on parents and siblings. The special identification methods and support afforded to people with dementia and their carers should be expanded to parent carers, too.

After the death of her son, Nikki wrote:

“I applied for jobseeker’s allowance, wanting to buy myself a little extra time to grieve before returning to some form of work. Only to be told that because I hadn’t ‘worked’ in 10 years I was ineligible. Despite the fact that in those 10 years, I had worked harder and for many more hours than the average person. The fact that I had saved the government and the NHS hundreds of thousands of pounds by providing my son with hourly complex medical care counts for nothing ... You are told to man up—move on. Get a job. Pay the bills. Provide for your remaining family. Leaving the last 10 years a memory”.


It is clear that the benefit and support structure is lacking, especially for parent carers. The plan includes the assurance:

“The Department for Work and Pensions will ensure that benefits for carers (including Carer’s Allowance and Universal Credit) meet the needs of carers and support employment for those carers who are able to work”.


If we are to fulfil this commitment we must raise the amount people can earn before losing carer’s allowance and reduce the number of hours of care per week required to qualify. Just because parent carers tend to be in critical salary-earning and labour-providing years, we cannot justify the current policy that effectively penalises them for caring for their children instead of working.

Parent carers must be afforded more support in returning to the workforce. Unlike those caring for elderly relatives, many parent carers also have school-age children. Along with giving employers the framework to assess their support for carers and returning carers in paragraph 2.1, we should give employers the pathway to improving their support. As a matter of workers’ rights, as in paragraph 2.3 of the report, we must mitigate the detrimental and limiting effects that providing care, by no choice of their own, has on carers’ careers. Beyond objectives and research, we must identify and ask the Government what funding, training and direct engagement between returning carers and employers they plan to implement to prevent the lasting impact of carers’ economic absence.

I will end with the voice of carers for these children, both siblings and parents. It is easy to focus on the action plan, with its clinical issues and items, but the stresses and strains on families of living in the intense world of the lives of young adults and children with severe illness and disability, often for 24 hours a day, is immense. I am grateful to Amy, who is 11, and Ekraj, who is 10, who are young carers alongside their single-parent mum Satnam, caring for Gurpreet, who today is back in Great Ormond Street for her 17th operation. Their short-break care at Nascot Lawn is being closed. It is a lifeline not just to Satnam but to these young girls, too. The girls want to say to your Lordships:

“I get to spend very little time with my Mum as she spends most of her time looking after Gurpreet. I used to get time to spend with her when Gurpreet was at Nascot Lawn and I was able to have my friends over to play but as Gurpreet doesn’t go anymore I don’t go out or have my friends come over. I help my mum look after Gurpreet. As mum spends more time now with Gurpreet’s care, I help do things around the house like the laundry, hoovering, mopping and other chores just so my mum can get time to spend with me. When we go out we have to make sure we’ve taken all Gurpreet’s feeds & medicines and we can only go to places which are wheelchair accessible. It’s so sad to see my friends and other children getting to go places where we all can’t go because Gurpreet can’t access them because of her wheelchair and so many times we have to go back home because we can’t go together. My friends don’t always understand why Gurpreet can’t talk or walk and why she makes funny noises. Sometimes she scares my friends. We are both part of the Young Carers Council in Hertfordshire and Young Carer outings are the only time we get to go out without Gurpreet and able to meet other young carers. For the first time last year we went to the Young Carers Residential and had so much fun doing activities that we could never do”,


at home. They go on:

“Many times we have to go stay with our Nan when Gurpreet goes to Great Ormond Street Hospital. She is there now and has just had surgery … Our Nan takes us to school and looks after us. We worry about Gurpreet and miss our Mum when she is at the hospital … We love Gurpreet very much and love spending time with her but we also want time to do things children our age do like going to the park or going cycling”.


Satnam is immensely proud of her very special and complex girl and of her other two children and their amazing support. They are the joy of her life. The question is whether the carers action plan will truly support this amazing family and the thousands of others around the country. Or will that support continue to be reduced as it is at the moment, putting an impossible burden on them? That is the real yardstick for this plan and, I am afraid, for this Government to be judged by.