National Carers Week

Stephen Doughty Excerpts

Thursday 8th June 2023 Commons Chamber

[Dame Caroline Dinenage]

The hon. Gentleman is absolutely right. Respite care comes up time and again as one of the big asks for unpaid carers. They want to carry on doing the role they are doing. They deeply love the people they are caring for. They take a huge amount of personal responsibility and pride with the care they are giving, but they need that little bit of support. Around the time of covid, in particular, we saw many, many unpaid carers going on for months, years even, without the ability for any kind of respite. The figure he quotes is crucial: £162 billion a year is the value that unpaid carers are saving our health and care system. That is an incredible amount of money. It is like a whole separate, second NHS, saving that amount of money. The huge pressures placed on the other NHS we have result in delays for unpaid carers in obtaining the primary and secondary healthcare appointments that they need. The record demand for our social care services means that carers are not getting the support that they need.

I want to spend a little time exploring some of those challenges in more detail. Other Members across the House will add their own voices. As I noted earlier, many carers are struggling with poor mental and physical health. According to Carers UK research, one in five carers says that their physical health is bad or very bad, 30% suffer from poor mental health and over a quarter say that they often or always feel lonely. Carers provide many hours of support for the people they care for, but very few are able to take a break from their caring. That results in tiredness and, in some cases, exhaustion and burnout. As the hon. Member for Strangford said, worryingly, 41% of carers have not taken a break from their caring role in the last year. A carer called Anton told me about the strain that caring is placing on him:

“It is hard, often draining and mentally and emotionally painful work, bordering on damaging. Due to my responsibilities and the amount I am depended on, I am often anxious, feel hopeless and depressed.”

Carers are not getting the support that they need from our health and social care systems, as both systems are under intense and increasing pressure. Many carers have experienced delays in accessing healthcare appointments and services. One fifth of carers who request a GP appointment have to wait more than a month to see a doctor, and over a third have had to wait more than a year for specialist treatments or assessment. That causes additional stress and anxiety, and results in many feeling isolated or forgotten about.

This year, only a quarter of carers said that they had undertaken a carer’s assessment in England—a statutory right under the Care Act 2014. Of those who received an assessment, many were concerned that it did not lead to any improvements in the support provided to them. Could the Minister outline what she is doing to ensure that those carer assessments are not only conducted but conducted properly and that the outcomes are delivered? In fact, 39% of carers said that they did not even know what a care assessment was—that is the severity of the problem. A carer called Trevor told me:

“I get no support whatsoever. It has taken nearly 4 years to get a carer’s assessment from the Local Authorities which is now imminent. I have no expectations whatsoever.”

What is the Minister doing to communicate with local authorities to make sure that those important carer’s assessments take place? Debbie contacted me to tell me:

“I’ve had no support whatsoever. Support seems to consist of ticking a box to say I’m a carer but nothing more.”

It is just not good enough.

I want briefly to touch on the financial impact that caring can have. The cost of living means that carers currently face unprecedented demands on their finances. Concerningly, more than half of carers say that they are extremely worried about managing their monthly costs. A quarter told Carers UK that they are cutting back on essentials such as food or heating, and over three quarters said that the rising cost of living is the main challenge that they will face in the coming year. Many have been desperately trying to find ways of saving money, but that can be difficult because, quite often, the people they are caring for need life-saving care equipment that requires energy, or they need to ensure that the person they are caring for is kept warm. David told me about the financial impact that caring was having on him:

“I have been a full-time carer for my wife for over 10 years, and I’ve found that the money I get doesn’t even cover energy bills. It’s a constant struggle: all unpaid carers want is enough money to pay our bills and still have something left over to buy things when we need to. We are saving the country a lot of money by doing what we do and some recognition would be appreciated.”

[Stephen Doughty (Cardiff South and Penarth) (Lab/Co-op)]

I thank the hon. Lady for bringing forward this crucial debate. The other day, I had the pleasure of visiting Tŷ Hafan, the children’s hospice of Wales, in my constituency. I heard many similar stories to those she is reporting, about how people are struggling with the cost of living, particularly if they are having to run expensive medical equipment, given the associated energy bills. It is brilliant that Tŷ Hafan provides not only crucial respite for families and those they support directly, but support and advice on the cost of living.

[Dame Caroline Dinenage]

That is absolutely right. The Government have spoken about a social tariff for energy, but identifying who the carers are and how they can access that support is vital.

Gary told me about the financial struggles he has because of caring:

“After giving up a reasonable salaried job to care for my wife, we fell into severe financial hardship and were resorting to food banks. When the cost of living crisis happened, it was so bad I had to take up part-time taxi driving, which takes me away from my care role, in order to survive, but I can only earn so much due to the limits imposed or lose the carer’s allowance.”

That is adding additional stress and complexity to his life.

Supporting carers to stay in or return to paid work is essential. We want to ensure that carers can live a life free from poverty in older age, but 75% of carers who are working alongside their caring responsibilities are worried about juggling work and care. Increasing numbers of employers are recognising the importance of supporting carers in the workplace, and it is vital that they maintain flexibility so that people can continue to do their incredible juggling acts.

Nicola told me that she had to give up her career as an embryologist to care for her daughter, who has Angelman syndrome. She said:

“We have no family support, no help from the council and my daughter is awake for hours in the middle of the night, which means that we are unable to sleep and are completely exhausted. The only income I now receive is carer’s allowance. We solely rely on my partner’s income, which covers our bills. We have already moved to a cheaper house, but it is still extortionate as we live in Surrey and my partner has to commute into London daily.”

Lucy, who cares for her disabled son, who has cerebral palsy, told me:

“I have had to give up my job as a company director as his needs and required medical operations means I cannot keep a job any longer. I have gone from having a £40k+ job and am now claiming carer’s allowance.”

Finally, more needs to be done to support and help carers to recognise themselves as carers. Many are not doing so, which means they are missing out on the support they need. Research that the charities involved with Carers Week released on Monday found that 73% of people in the UK who are providing or have provided unpaid care in their lifetime—roughly 19 million people—have not identified themselves as carers. Research also shows that half of all carers take over a year to recognise that they are in a caring role, with over a third taking over three years to recognise themselves as carers.

That is particularly pertinent to young carers, who may not know that they are carers. In many cases, their situation can be misinterpreted. Schools can perceive young carers to be bad students because they are not paying attention, when in many cases they are just extremely tired and stressed by their caring responsibilities. Schools need to go much further to identify young carers in their midst and to support them.

In cases where a young person is supporting a parent with mental ill health, there is a stigma attached and they do not want to tell their friends. I remember meeting one young gentleman at a carers’ festival that is run every year, which is a wonderful way of supporting young carers to live life like normal young people and enjoy themselves. He told me that his mother had made many attempts to take her own life and that, as a very young child, he had to get used to phoning 999 for the ambulance to take his mum away and save her. He never told his school about this because of the stigma attached to it; he felt deeply isolated and ashamed. We need to double down on our efforts to ensure we identify young carers in schools.

--- Later in debate ---

[Barbara Keeley (Worsley and Eccles South) (Lab)]

It is good that the hon. Member for Gosport (Dame Caroline Dinenage) has secured this important debate, because opportunities for the House to debate the difficulties faced by unpaid carers and to recognise their contribution are always valuable. However, this cannot be a recognition exercise alone. For too long carers have struggled to get by with little support from the Government, while at the same time providing many hours of highly skilled work. They have been worked to the brink for too long, and many now say that they are fed up with warm words. One unpaid carer, Rachel Adam-Smith, said:

“I cannot believe I am 19 years into my caring role and nothing has changed—other than the fact that I look more exhausted and feel more defeated.

We are given no time to rest, to look after our own health, to take a holiday or even to have a bath. We are all human, none of us are superhuman but unpaid carers are treated as though we are. We aren’t.”

Rachel asks:

“Will it ever change?”

Carers are right to feel disappointed and angry with the Government. As we heard earlier, research by Carers UK shows that a quarter of unpaid carers are cutting back on essentials such as food, and more than three quarters of carers said that the rising cost of living was one of the main challenges they would face in 2023. Gaddum, a charity in Salford, delivers the carers service contract for Salford City Council, which covers my constituency, and it shared with me some insights from a survey of the carers using its services, carried out in February this year. The survey found that 42% of carers’ finances had been negatively affected by their caring commitment, and 84% of carers’ emotional health had been negatively affected. One unpaid carer told Carers UK:

“To date I have sold both of our pensions, shares and insurances to maintain our living standards. They have all gone now so I had to start claiming Universal Credit last year. I have nothing left to sell and I am anxious that we are going to live in poverty for the rest of our lives.”

It is clear that the system of support for carers is not currently working. The financial situation is desperate for too many carers, and the direction of travel for Government policy is deeply concerning. Instead of helping unpaid carers with their unprecedented financial pressures last winter, the Government changed the arrangements for the warm home discount so that nearly 300,000 people with disabilities and their carers were no longer able to claim it. This spring they announced that they would reduce the already pitiful pot of money assigned to social care reform by at least £500 million. Support from the Government is falling away just as more and more carers fear having to cut back on essentials such as food and electricity.

The financial pressures resulting from those and other decisions taken by the Conservative Government have put a real strain on the mental health of carers. Gaddum has told me that carers’ own mental health has been the issue most frequently discussed through casework in the last few years. As the campaigner and unpaid carer Katy Styles recently warned, there is now a risk that carers will become cared for themselves. She said:

“Not only will local authorities and Government bodies be looking after the people that they care for, but also carers who are in a really bad way.”

The We Care Campaign, which Katy founded, does crucial work in amplifying the voices of unpaid carers. We Care is campaigning for more financial support for carers and to secure funding for carers’ breaks. The campaign is also pushing for longer-term solutions, including to the social care crisis, and a crucial national carers strategy.

As the right hon. Lady mentioned, the Government have failed to publish a national carers strategy. They consulted on one in 2016, gaining a lot of responses, yet ultimately the strategy was delayed and then abandoned. Some 6,500 unpaid carers contributed to that consultation, giving up what little time they had to invest their energies in providing details of their day-to-day caring roles. It was dismissive in the extreme for the Government to drop the proposed national strategy. Carers who had contributed to the consultation felt extremely angry. Katy Styles said at the time that:

“Whilst unpaid carers spent precious time informing a Strategy; that time and effort was wasted as that Carers Strategy was apparently scrapped. That’s how much carers’ lives matter.

A national strategy would set the tone on how society should value and support carers. Without a strategy; carers have no hope of being valued and supported.”

Nothing has changed in the past five years to give carers hope of being valued and supported. The 2018 to 2020 “Carers Action Plan” was a flimsy document shamefully void of funding and ambition. We have had nothing of any substance since then.

It is worth remembering that the national carers strategy published under a Labour Government 15 years ago was launched not by a junior ministerial group, as I think is being proposed in this cross-departmental roundtable, but by the then Prime Minister, and signed by all Secretaries of State. That commitment shown by Labour at the time was vital, because I understand that Care Ministers struggle to get that cross-departmental aspect—we have heard about how many Departments are involved.

The other thing is funding. When the strategy was updated in 2008, the last Labour Government pledged £255 million for new commitments to support carers. That included £150 million to increase significantly the amount of money provided by central Government for breaks from caring. The Carers Trust reports that unpaid carers consistently tell it that they value breaks and respite very highly. Carers say that taking a break from caring is beneficial for their health and wellbeing and can allow them to continue in employment. Yet funding for respite care has dried up since Labour’s national carers strategy, with the funding no longer earmarked for breaks as it was up to 2010. The current Conservative Government’s plan in the 2021 social care White Paper for five days of unpaid leave from care is woefully insufficient. It was also disappointing that the Government recently rejected the Lords Adult Social Care Committee’s recommendation on ringfenced funding for breaks. Carers Trust is now calling for a statutory right to respite breaks for unpaid carers across the whole UK.

Carers in Scotland have access to a national scheme giving unpaid carers access to breaks, and Wales will launch a national scheme in June. There should be a national scheme in England too, with local carer organisations as key partners, and it should learn from Carers Trust Wales when designing breaks for unpaid carers. A Carers Trust survey of over 2,500 unpaid carers found that 53% of respondents said a break from caring is what would make the biggest difference. Despite that, research from Carers UK shows that a quarter of carers have not had a single day off from caring in more than five years.

For many, unremitting caring takes a toll on their mental and physical health. Both the GP Patient Survey and 2021 census data show that carers are more likely than those not in a caring role to have a long-term health condition or to have reported “very bad or bad health” and to feel isolated and exhausted. Both studies also showed that the more intense a caring role is in terms of the hours of care provided, the more likely it is that carers will have poorer health outcomes.

The Social Care Institute for Excellence systematic review of evidence on carers breaks found that carers value breaks for a range of reasons: practical, emotional, social and psychological. For some carers, the break has value beyond its allotted time. For instance, looking forward to a break can have the same effect as the break itself. The importance of breaks is to be part of a whole-family approach and as a break from the caring routine, not just having time away from the person. Some carers prefer a break with the person they care for, or as a whole family, but just not when they have to do all the caring.

[Stephen Doughty]

My hon. Friend is making a crucial point. This is exactly what I saw recently at Tŷ Hafan in Sully in my constituency, where there is the option of hotel accommodation for the whole family on site near the person for whom they are caring, but without them having to undertake the full responsibility for care. A pristine natural environment also provides opportunities for the whole family to relax and get some quality family time together while having a break from their responsibilities.

[Barbara Keeley]

I thank my hon. Friend; that will sound very good to other carers.

Breaks can have a vital preventive role, sustaining the caring relationship and preventing carer stress, crisis and breakdown. There are key points where, if practical support and information had been provided, the negative impact of caring may be reduced. Breaks can reduce loneliness and isolation, enabling the carer, and the person they care for, to stay connected to family, friends and the things they enjoy.

We must face the fact that there has been a decline in the funding used to support carers breaks. Analysis by the Nuffield Trust of short and long-term data shows that 24,000 fewer carers were receiving breaks in 2020-21 than in 2015-16—a decline of 42%. It is no wonder that so many unpaid carers are exhausted. Claire, a carer from my constituency, told me that in order to attend the carers networking event in Parliament yesterday, the cost of alternative care for her mother was £33 an hour. She told me that there should be an alternative because the excellent Humphrey Booth Resource Centre in Salford has a four-bed unit for people with dementia. However, it cannot be used to offer respite care for Claire’s mother because it has been taken over to help with hospital discharge issues.

Another major issue facing many carers is that GPs and other NHS staff treating the person they care for often know nothing about their caring role, meaning that carers are not offered the support to which they are entitled, as we have heard. Another carer from Salford called Justine, whom I met in Parliament yesterday, told me that at the start of caring for her mother, who has dementia, she was offered no help or advice and did not know where to turn for support. Even when she asked social services for help, turnover of staff meant that different people were asking her to fill in the same forms again and again and that assessments were being done again and again. Justine said:

“You feel like you are treading water all of the time.”

Analysis by the Nuffield Trust shows that there was an 11% drop in the five years to 2020-21 in the number of carers in receipt of direct support. That is the equivalent of 13,000 fewer carers being given the choice and personalisation that direct support is designed to offer. That downwards trend is reflected in local authority gross expenditure on services for carers, which reduced by 11% between just 2015-16 and 2020-21. That has meant a reduction in the support offer available to carers. Local authorities provided fewer direct support payments and directed 36,000 more carers to information and advice only—that is all they got. Carers have since reported finding it harder even to access adequate advice and support, and satisfaction with carer support services generally is declining—hardly surprising.

Carers organisations know that proper identification of carers by the NHS would mean that carers could be supported much more effectively. Identification of carers is something I have campaigned on for many years. In 2012, I brought in a private Member’s Bill on the identification of carers that would have created a duty on the NHS to identify carers and to promote their health and wellbeing. The then Care Minister in the coalition Government would not support my Bill. Indeed, there is so much that could have been done in the past 13 years to avoid the appalling situation that too many unpaid carers now find themselves in, which has been made worse by the cost of living crisis.

We are here today because this is Carers Week, but care does not stop when Carers Week ends. The Government must urgently bring forward a long-term plan informed by carers and understood at the highest levels of Government. Ministers must learn to listen to unpaid carers—not just this week, but every week—and value their lived experience and insights. The We Care campaigner Katy Styles said that there are so many issues for the millions of carers whose voices she tries to amplify, but only a few of them were able to meet MPs yesterday. Katy told me:

“It’s a battle and a fight for everything. It’s grinding us down.”

We cannot continue to leave carers without proper support.