National Carers Week

Debate between Stephen Doughty and Baroness Keeley

Thursday 8th June 2023 Commons Chamber

[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.