National Carers Week

Debate between Stephen Doughty and Caroline Dinenage

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.

Oral Answers to Questions

Debate between Stephen Doughty and Caroline Dinenage

Thursday 10th December 2020 Commons Chamber

[Caroline Dinenage]

The hon. Gentleman is absolutely right to highlight this. We know that the vast majority of misinformation is harmful but legal. It is really important that we develop a comprehensive piece of legislation, working closely with civil society and the tech platforms, so that where disinformation is illegal or encourages illegal behaviours it can be dealt with, and so that we can address false narratives online and try to root out the content that is legal but harmful, particularly to children. With that in mind, we will be publishing the online harms response very shortly, and we plan to bring forward the legislation early next year.

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

Like many other Members, I have been sharing information about the excellent developments on the vaccines with my constituents on social media, but I have been deeply worried by some of the anti-vax nonsense I have seen in response. What is the Minister’s advice to my constituents when they see this information online? Should they simply report it to the social media companies and expect them to remove it—they have a pretty poor track record of doing that—or is there some way of feeding into the disinformation unit that she has described?

[Caroline Dinenage]

The hon. Gentleman is absolutely right to raise this. Anti-vaccination propaganda can be really harmful and can deter people from getting treatment that could save their life or the life of a loved one. That is why it is really important to bring it to the attention of the social media companies themselves. Last month, my colleague the Secretary of State, alongside the Secretary of State for Health and Social Care, met the social media companies, which agreed to reduce the spread of harmful and misleading narratives, particularly around the potential covid-19 vaccine. We are holding them to account for this; it is vital that they get it right and that their work is transparent and effective.