Barbara Keeley – 2021 Comments on the National Carers Strategy

The comments made by Barbara Keeley, the Labour MP for Worsley and Eccles South, in the House of Commons on 12 March 2021.

There are some 13.6 million unpaid carers across the country, including 4.5 million people who first started caring during the pandemic and 800,000 young carers. Each of these carers provides vital support to a family member or friend, often at considerable personal cost.

Over the past year, the role of unpaid carers has become more important than ever. With many people shielding or unwilling to go out, unpaid carers have stepped up to provide additional support and keep people safe throughout the pandemic, but the reality is that these carers do not feel that their role is being recognised. One unpaid carer, Rachel Mewes, says:

“I wish I could say that the pandemic has shone a light on the situation that so many of us live in, as unpaid carers. Instead, it has driven us further into the dark. It has truly demonstrated how we are not even recognised as an entity in the British population. Personally, I feel that at no point during the past year, have the government recognised that people like me exist.”

I know the Minister will want to join me in thanking all unpaid carers, but the reality is that they deserve more than our thanks—they deserve our support.

Under the last Labour Government, this support was brought together into the national carers strategy. This was an ambitious, long-term plan built around the voices and experiences of carers, and it was first published in January 1999. In 2008, the strategy brought together seven Secretaries of State and the then Prime Minister to support an ambition that by 2018:

“Carers will be universally recognised and valued as being fundamental to strong families and stable communities. Support will be tailored to meet individuals’ needs, enabling carers to maintain a balance between their caring responsibilities and a life outside caring, while enabling the person they support to be a full and equal citizen.”

A decade of Conservative cuts and neglect of this policy area meant that this ambition for carers was never realised, and since the Government announced a consultation for a new carers strategy in March 2016, carers have been left waiting.

Carers were invited to contribute to that consultation to inform the new carers strategy. Over 6,500 carers, carers support organisations and charities submitted contributions. Thousands of unpaid carers gave up what little time they had and invested their energies in providing details of their day-to-day caring roles. Katy Styles, a carer and a campaigner for the Motor Neurone Disease Association, contributed to that consultation and hoped that her voice would be heard alongside others. She told me:

“Not publishing the National Carers Strategy has made me extremely angry. It sends a message that carers’ lives are unimportant. It sends a message that Government thinks we can carry on as we are. It sends a message that my own time is of little worth.”

Katy Styles went on to found the We Care Campaign to bring together unpaid carers to campaign, make their voices heard and get decision makers to value their unpaid care. A key ask of the campaign is a national carers strategy.

The Government have so far declined to publish a national carers strategy, instead bringing in a carers action plan. This flimsy document offers few substantial commitments to improve support to carers and lacks the funding needed to transform services. To give just one example of how this action plan fell short, a major issue facing many carers is that their GP or other NHS staff treating the person they care for know nothing about their caring role, and this means that they struggle to access support.

In 2012, I brought in a private Member’s Bill on the identification of carers. This would have created a new duty on the NHS to identify carers and promote their health and wellbeing. The then care Minister did not support my Bill, and when the carers action plan came along, it was not so ambitious. It merely proposed a system of quality markers so that GPs could demonstrate if they were good at identifying carers. However, carers organisations know that with proper identification of carers by the NHS we can support carers much more effectively.

The carers action plan expired at the end of 2020. While we are currently stuck in limbo on this policy, I hope the Minister will be able to confirm today that officials are working on a new strategy to give carers the support they need. There are a number of areas the Government should be considering as a priority in both the short and longer terms. The first is the issue of covid-19 vaccinations. This is a short-term priority, but many carers still have not been told when they can expect to receive their vaccinations. The Joint Committee on Vaccination and Immunisation has recommended that carers be prioritised alongside working-age adults with underlying health conditions, but we know there are still barriers to uptake.

I have heard from a full-time carer in receipt of carer’s allowance who booked a vaccination after being asked to do so by her GP, only to be turned away on the day because she could not prove her status as a carer. She was asked to provide a letter proving she was a carer, but her GP did not issue such letters to carers and she had no proof with her that she received carer’s allowance. Carers who are eligible should not be denied the vaccine on the basis of paperwork, so can the Minister set out what the Government are doing to ensure that carers are not wrongly turned away?

This could have been dealt with if the Government had set out a clear plan to ensure that all carers are identified either by their GP or by a hospital dealing with the person needing care. As they have not, we have millions of people carrying out invaluable caring work completely unacknowledged. It is also now likely that the covid vaccines will not be one-off, but an annual requirement much as flu shots are. Can the Minister tell us if the Minister for Care has had conversations with the Minister for Covid Vaccine Deployment about ensuring carers are included as a priority in all future rounds of vaccination?

Throughout this crisis, unpaid carers have taken on considerable extra costs. These range from additional spending on energy bills as people are stuck at home to having to purchase personal protective equipment and hand sanitiser. I have heard from carers who have seen their food bill double because they are having to shop online rather than going into stores. All these costs add up and are tough for carers, many of whom are retired or on fixed incomes. Despite these additional costs, carer’s allowance is one of the few benefits that has not had an uplift during the pandemic. Although people receiving universal credit have rightly been given an extra £20 a week, carers have not seen a penny more from the Government. Carer’s allowance was already pitifully low, so it is unconscionable that it should not have had an uplift during the pandemic, leaving many unpaid carers with months of financial worry. On top of that, many carers do not get even this inadequate level of support. Research from the Motor Neurone Disease Association found that even before the pandemic, one in three carers were providing more than 100 hours of support a week, and nearly half of that group receive no benefits. That is part of a broader problem which means that carers do not get the recognition they need. Three quarters of carers have not had a carer’s assessment, which means they are not getting the support they need.

Carers who worked before the pandemic have struggled more than ever, often without their employers realising they have had to take on extra caring. As formal services such as day centres closed their doors, unpaid carers were asked to take on more responsibility than ever before. Half of unpaid carers are in work, and more are of working age but unable to work, often because of their caring responsibilities. That means that one in four workers in the country are juggling jobs and caring responsibilities. Despite that, carers have little legal protection in the workplace. Working carers tell us that they are concerned that balancing their responsibilities affects how well they do their job, which is a particular concern during the economic downturn.

Carers have no right to take leave to carry out their caring role, and during the pandemic we have seen that they have no right to be placed on furlough if they need to be. This means they may have faced a choice between quitting a job and not being able to care for a family member or friend. That is not a choice anyone should be facing. The Government have talked about encouraging employers to be supportive of carers on their staff, but encouragement is no substitute for enforceable employment rights. Although the Government consulted last year on introducing a right to carer’s leave, we are still awaiting the outcome of that consultation. Will the Minister update the House on whether a right to carer’s leave will be taken forward?

Financial support is not available to the 800,000 young carers providing support to a parent or a sibling. Due to the support they offer, young carers often miss school and are more likely to get poor exam results than their peers. They face mental health problems as a result of balancing caring with the normal challenges of growing up, and that is often made worse by the fact that nobody knows they are a carer. Only one in 200 young carers receive any support through their local authority, and more than one in three say that nobody at their school knows they are a carer. That lack of support has worsened during the pandemic, with schools closed to many children and the additional caring responsibilities facing all carers. It is no surprise that young carers say they have got more stressed and more isolated over the past year. That will have a huge impact on their future, and we need to act to avoid that. Next week is Young Carers Action Day. Ahead of that, will the Minister say what targeted support is being put in place specifically to support young carers?

Looking beyond the current pandemic, we should be doing much more to support unpaid carers. Perhaps the biggest thing we could do is reduce the burden on them by ensuring that more people are able to access publicly funded social care services. One of the most damaging impacts of the current underfunding of social care is that people have to rely on friends and family members for help with basic tasks such as washing, bathing, using the toilet or having meals. Undertaking that personal care can leave carers without the time or energy to spend quality time with their family member or friend, whether by helping them get out into the community or engaging with their hobbies and leisure.

Carers are unable to take breaks, because there is no alternative care. Funding for respite care has dried up, as local authority budgets come under more pressure. We are now in a situation where 44% of carers say that they would use a respite care break to attend a medical appointment. None of us would consider going to the doctor to be a break, but for many carers, even getting time for a medical appointment for themselves is a luxury. Expanding eligibility for social care and providing comprehensive care packages will not replace unpaid carers, but it will free up time for them to do the things that only they can do—providing support and companionship to the person they care for.

Evidence from Scotland, where a Labour Government introduced free personal care in 2002, shows the impact that expanding social care services had on unpaid carers. Research has shown that having state-funded personal care meant that unpaid carers increasingly focused on emotional and social support.

In 2018, carers were told the reason they were getting only the flimsy carers action plan was that the social care Green Paper would go further and set out more ambitious plans. More than two years later, there has been no Green Paper, so I am sure the Minister will understand that carers are not happy with the continued promise of jam tomorrow. Even if the Government were to bring forward their plans for social care this year, which could be another broken promise, it may be years until those plans are enacted. Carers cannot wait that long. They need support now.

A national strategy would be based on carers’ voices and aim to start meeting their needs rather than ignoring them. As Katy Styles told me:

“The recent budget told unpaid carers and those they care for how much of a priority they are. When the Chancellor of the Exchequer gives carers 35p a week extra and carers work out that they would need two weeks of this increase to buy a can of the Chancellor’s favourite soft drink it tells you everything you need to know.”

As unpaid carer Bart Mekking said:

“My wish is that unpaid carers like me and my wife are noticed. No kind words for they are always empty. At this point, saying that the ‘heroic efforts of carers are appreciated’ sounds more like a snipe. Meaningful actions are needed.”

I wanted to lead this debate today because it is time for meaningful action for carers like Bart and his wife and because it is time we listened to the voices of carers like Katy and recognised the contribution of carers like Rachel. Meaningful action would be ensuring that every unpaid carer is able to access the covid-19 vaccine as a priority, rather than being turned away because they lack the appropriate paperwork; introducing a right for carers to be furloughed from work so that they do not have to choose between working and caring; and a right to carer’s leave. Meaningful action would be increasing financial support to carers, including increasing carer’s allowance; bringing forward the long-awaited reform of social care, so that unpaid carers get the help they need from formal care services; introducing a duty on the NHS to have regard to carers in the upcoming health and care Bill; and publishing a full national carers strategy that is ambitious and long-lasting in order to guarantee that carers remain a priority after this pandemic is over. Anything less than this is letting carers down again and allowing them to bear the cost not just of the covid-19 pandemic but of the Government’s failure to support the social care system.