48: Disability and the energy crisis
Disabled people and their households are among those most likely to be impacted by the energy crisis and associated rise in living costs. Until now, impacts on disabled consumers seem all too often to have been overlooked by both policy makers and media. For this special episode, the team are joined by Gemma Hope, director of policy at Leonard Cheshire, and Lizzie Green, campaigns manager at Sense.
Essential Reading:
https://www.bbc.co.uk/news/health-62598309
https://ukerc.ac.uk/publications/justice-in-energy-efficiency/
https://ukerc.ac.uk/publications/policy-pathways-to-justice-energy-efficiency/
https://www.scope.org.uk/news-and-stories/cost-of-living-disabled-people/
Episode transcript
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‘There has to be a recognition of the severe impact that this crisis is having on disabled people in particular and I think there’s just not that awareness there at the moment.’
‘This isn’t just a crisis. This is now an emergency. We’ve had people, when we’ve been talking in our focus groups, talking about how they might take their own life because they don’t want to sit and live in pain all winter because they can’t afford to put the heating on.’
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Fraser: Hello welcome to Local Zero with Fraser, Becky and Matt; your go-to pod for all things local climate action. This week’s episode is about disability and energy, a vital and often overlooked aspect of the energy crisis.
Rebecca: Before we crack on with this episode though, I just wanted to say a big thank you to everyone who got in touch with us on Twitter, especially Chris Young who tweeted us to say, ‘Your podcast is brilliant and deeply thought-provoking.’
Matt: So joining us today are two experts from leading disability charities. We welcome both Gemma Hope, Director of Policy from Leonard Cheshire and Lizzie Green, Campaigns Manager at Sense. Together, they’ll give us some insights into how disabled households experience energy, how the energy crisis is affecting them and finally, what we should do to support them.
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Quite right and I don’t know about you both but we’re recording this late August and there’s a bit of an autumnal feeling in the air today. I mean I know we’re all in Glasgow... well, not any more as Fraser, you’re on the East Coast but there’s a bit of a chill in the air and the leaves are even turning... they’re kind of giving up a bit. They’re yellowy brown.
Rebecca: Do you know what, Matt? It’s absolutely nuts. My mum lives in London and she was telling me that the trees on the streets around her have already started shedding their leaves and it’s happening here. I get what you’re saying about the autumnal feel and it’s just so bizarre with the temperatures that we had last week or last weekend. It was absolutely nuts the contrast.
Matt: Yeah, absolutely and obviously, in the news, as the leaves start to change colour and as we record, we’re two days away from OFGEM announcing the latest price cap rise, the two don’t feel completely disconnected and it feels like as the colder weather sinks in and the energy prices go up, this topic is going to gain even more traction than it already does.
Fraser: Yeah, it has to. It has to. It’s the sense of the impending... the scale of what’s happening just now is terrifying. It still feels like we’re stepping off the cliff edge a little bit here. We still don’t know what’s coming next. We still don’t know what the support looks like or just how big this winter is likely to be.
Matt: Patrick, one of our producers, was pointing to this and saying, ‘It feels a little bit like a pre-COVID moment and the calm before the storm. We know something is coming. We’re not quite sure how bad it’s going to be. We’re not quite sure what support is in place to help us get through it. That is exactly how I feel right now. We do have some support in place. In fact, depending on how you calculate this, it’s around the £37bn mark that was announced in February and more latterly, in May but a fascinating analysis from the Carbon Brief and Simon Evans there points to the actual ultimate cost of energy up into 2023 will be more like £180bn.
Rebecca: It’s terrifying and good on the Carbon Brief. They always produce such amazing analyses that really break everything down. I think the framing and looking at it in comparison to the COVID crisis is an interesting one. Where I think there’s an added dimension here is not just the lack of knowledge but the amount of distrust and anger that this is provoking. I’m not as good on social media as the two of you [laughter]. You both way outstrip me but I have a Facebook account that’s purely personal and so I don’t interact with it in a business or professional way at all and I see conversations that friends, family members and people that are not involved in this space at all are raising. There’s a knowledge about the price increases. There’s a lack of knowledge about the support out there that doesn’t even feature as part of the conversation but overwhelmingly, there is blame being laid upon the energy companies, those people making profits. I feel like there’s a big spiral of distrust and anger that is coming out of this and, perhaps, misinformation.
Fraser: I think on that, Becky, I would say the misinformation point is a really interesting one and certainly, a confusion about it but I think for me, and not just on the scale which we’ve spoken about separately... but for that reason, as much as it feels like the night before furlough kind of thing, it also feels a little bit 2008. It feels like there’s a lot of resentment. It’s an enormous thing and I think the socio-economic implications are on that scale. We need to be thinking on that scale but in terms of the sentiment on the ground, people know that they’re being shafted in this. They know that they don’t have a responsibility in it and yet are bearing the brunt of it. It feels like a sense of an appetite for something radical and some serious change. There’s a worry about where help is and if it’s coming and certainly, I think on the other side of it, that anger pushing much more towards this cannot be the way that we go on.
Matt: It’s important to say, Fraser, that some people are going to feel this energy crisis much more than others. Of course, we know that it’s going to be the poorest households that are going to be hit hardest. Proportionally speaking, a much bigger share of their income is given over to energy and as those prices increase, the pain increases too but there is some fascinating work from the Citizens Advice Bureau. They’ve just released a new dashboard which, hopefully, we can put on our website too which points to how certain demographics are being hurt the most. In fact, they’re measuring this in terms of people who are reaching out to the Citizens Advice Bureau; in particular, single-parent households, those from ethnic minorities and those with long-term health conditions which is going to be the topic of discussion today... also, those in private rental housing. So the help needs to target these individuals most.
Fraser: Yeah, it’s entirely why the idea of chucking £400 at everyone and hoping for the best is no way to run any kind of bailout or support.
Matt: No, and then to have a counter-campaign to that of people saying, ‘Oh, please, if you don’t need that money, please donate it.’ [Laughter] Well, that shouldn’t be how we’re managing it. Maybe I’m straying into the personal here but that doesn’t feel like a great way to target billions of pounds; giving it to people and then relying on them to donate it back to a charity or individual of their choice.
Rebecca: It doesn’t at all but do you know what? Even if we had a better scheme where that money was perhaps divided in a fairer way or a more appropriate way, it’s just not enough. It feels like, for want of a better expression, putting lipstick on a pig [laughter], not that I have anything against pigs [laughter].
Matt: Or lipstick for that matter...
Rebecca: Or lipstick [laughter].
Matt: ...but I think it’s a good analogy [laughter]. The other frightening thing is about people actually being able to access this money. There was a piece on the BBC just today, and again we’ll try to link to this, saying that more than 3m households in Britain were still waiting to receive their £150 council tax rebate.
Fraser: Yeah, and predominantly, again, people from those groups and communities. Exactly the same people who you would argue need it most.
Matt: So, Fraser, the important point on this is that it’s particularly the people who don’t pay by direct debit. 97% of those who pay their council tax, i.e pretty much everybody, got the rebate. Half of them who paid it through other means, i.e. cash, cheque, standing order or whatever it might, have not received the rebate. The other thing which is telling, and this is another way that this money isn’t reaching the people who need it, and I’m hearing this through colleagues at South Seeds, a charity I work with on the Southside of Glasgow – we help people who can’t pay their energy bills – the £400 non-repayable discount on energy bills, which will be applied to everybody, as you mentioned Fraser, goes to the bill payer. Now actually, a lot of people in homes may not be registered as the bill payer but they’re living there... there could be a number of reasons for that. They maybe pay their bills as part of their rent or, indeed, they just never registered and they simply pay somebody else who is. That’s a problem. That’s a really big problem. I’d like to get this across to the listeners. The level of support is one thing and getting that support to other people is another.
Fraser: Energy Action Scotland has highlighted this recently as well that even support that is available is so, so tricky to access. You have the complications of the delivery on energy bills of the £400 and £150 on council tax but additional support that is available is a whole other thing. It seems like the access to the services is as much a problem as the short-handed services themselves. I would also like to put a little bit of context to this because I think Becky’s point is an important one. For any listeners who don’t know, I do fuel poverty work for the Scottish government. This time last year, we were worried about bills going to £1,200 a year. We were thinking, ‘How are the most vulnerable, people struggling the most, going to find an extra £400 a year?’ This was at a time when the Universal Credit uplift had just been rolled back. You’re now asking people to find £2,500 or £3,000 additional a year that they simply don’t have and throwing £400 at them. Even if you qualify for £1,600, which is the maximum available support for anyone from the UK government, that’s still hundreds of pounds of a deficit on today’s price cap.
Matt: The other frightening thing here is, Fraser, that those that are in private rental accommodation, often those who are in lower income brackets, are living in less energy efficient homes. It’s not so much if you’re in social housing because that can tend to actually perform better than private rented. But another piece that came out, not just from the Carbon Brief, Becky, but also ECIU (Energy and Climate Intelligence Unit) basically found that if you live in an energy performance certificate rated C house, which is pretty good and I’d like to live in one of those houses – I aspire to live in one of those houses – versus somebody who lives in F, which is pretty much right down at the bottom (apart from G), the difference for the average bill payer was £2,000 or will be by the end of this winter. £2,000.
Rebecca: Wow! We know this. Those who are living in the poorer homes are going to feel this the most. I do want to come back to this idea though of how folk get that support. Fraser, you mentioned up to £1,600 is the maximum available but presumably, there are things that you need to know to be able to access that. It’s not something that’s just, as you said, with the direct debit, it comes to you as a rebate. There are challenges in the policies themselves and not enough being done but also challenges around how you access this. Again, for me, this is another example of a policy where the onus is all going on the individual. It feels like very short-term thinking. It feels very kind of push everything out to individual households and it brings me back to thinking about a previous episode of Local Zero where we had Rufus Grantham on who was talking about new models to shift energy systems in a community that would tackle things like the energy efficiency of homes; that would tackle issues around local renewable generation that could potentially subsidise these costs but would be doing it not by saying, ‘Every individual has to apply for certain amounts of rebates,’ or try and do things on their own but looking at entirely new business models and entirely new ways of doing this at a local level rather than trying to make everybody an expert.
Matt: There’s a lot to say about that. I think my two immediate reactions are: the House of Commons Committee for Business, Energy and Industrial Strategy released something two weeks ago which basically said if we throw money at this, it doesn’t solve the problem but where do you throw the money at? If you’re looking at more structural change, obviously, retrofit is a key one but these energy advice services that actually inform people about what to do... and even if it’s not what to do, they’re saying this is what you can do and these are the companies or organisations that could help and that advice is massive. So at South Seeds, we’ve found that in the last six months to nine months, our weekly number of appointments has doubled.
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I’d like to bring us on to the topic of today which is a really important one and one I don’t think the media has maybe given enough time to which is around disability and vulnerable consumers and vulnerable households during this energy crisis. There was a really telling stat that I had to pull out for a presentation I’m doing soon which is about excess winter deaths. This took my breath away. Excess winter deaths, which are basically recorded as the deaths between the December and March period that are above the average for the months that precede that, are three times higher in the coldest quarter of housing versus the warmest. So you’re three times more likely to die, basically, and it has a massive impact upon physical but also mental health and typically, each year – and this is work undertaken from National Energy Action but also E3G – (this is pre-COVID) there are around 30,000 excess winter deaths. Around a third of those, almost 10,000, are attributable to living in a cold home. Now what I want to put to you two, and we’ve likened this to COVID... I’m not qualified to estimate in any way how many people are going to die or become very ill this winter but this feels like a public health emergency...
Fraser: It is.
Matt: ...and I don’t feel like it’s being treated as such. It’s being dealt with as more of an economic problem rather than a health problem.
Fraser: Yeah, but it absolutely is. I don’t know that we need to reiterate the health impacts. We know what those health impacts are in terms of living in a cold home and in terms of the respiratory issues that that causes. The mental health and the isolation alone is such a massive part of this that we don’t give enough credit to. There was news out this week, and I need to dig it out for the notes, around just how stretched the NHS already is. Now I don’t mean to take this away from health and make it about economics again but we’re talking about a health service that was battered by two and a half years of a pandemic already and coming into a winter... I don’t know if you remember COVID. Do you remember COVID?
Matt: Yeah, I do.
Fraser: It hasn’t gone anywhere, despite how we’re carrying on now. Wider public services are already on their knees and people from those more vulnerable groups are predominantly reliant on them and there are far more people still that will need to access them. It’s a very long way of agreeing with you, Matt. I think you’re right. I think this is a massive public health issue.
Matt: I think many listeners at this point will possibly be reaching for the mute button and saying, ‘Okay, that’s enough, guys. Don’t make me feel any more anxious than I already do,’ but the good news is there are charities out there and we’re going to ask them what the situation is and hopefully, they can present a way forward.
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Lizzie: My name is Lizzie Green and I’m the Campaigns Manager at the national disability charity, Sense. The cost of living crisis is something that we’ve been working on a lot at the moment. It’s obviously an issue. It’s impacting disabled people a severe amount. So yeah, it’s something we’ve been working on a lot.
Gemma: Hi, I’m Gemma Hope. I’m Director of Policy at Leonard Cheshire. Leonard Cheshire is a national disability charity which was set up to help disabled people to live, learn and work as independently as they choose. At the moment, we’re doing lots of work on the cost of living crisis as that’s the biggest issue affecting the disabled people we support and our campaigners.
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Matt: Lizzie and Gemma, welcome to Local Zero. Thank you very much for joining us on this very special episode during a very, very difficult time of the energy crisis. As we’ve set out earlier in the episode, disability and vulnerable consumers are often being overlooked I would say by the mainstream media and yet these individuals and these households may very well be the worst affected. So I just wondered if we could maybe begin with Lizzie and then come on to Gemma about your views on how disability impacts upon households’ experiences of energy and how critical affordable and reliable energy is to these homes.
Lizzie: Yeah, disabled people are being severely impacted by the cost of living crisis at the moment and the increase in prices. It’s something that we’re obviously all impacted by but disabled people, in particular, are feeling the effects a lot more because of their circumstances. For many, full-time work might not be an option and that also goes for family carers as well who might be locked out of employment due to caring responsibilities. Many disabled people also face additional costs on a daily basis for essentials. For disabled people, this isn’t something new; it’s just adding to an already difficult situation. Our recent research actually showed that over 70% of disabled people are now in debt and nearly 40% are skipping meals. Those statistics, as well as the stories and the experiences of disabled people, are really telling us and painting a picture of the severe impact and the really difficult situations that many people are facing.
Matt: Wow! Yeah, so obviously, a very dire situation and, as you say, I think that’s very telling they were already in a difficult situation before this energy crisis came along. Gemma, from your perspective, is there anything you’d like to add?
Gemma: No, I think the experience of the people we support at Leonard Cheshire is very similar to what Lizzie has outlined. We did a poll just before the energy price hike, which was before things got even worse, which I’m sure we’ll get on to talk about, and half the people who responded to our survey said that they experienced extra costs because of their disability. A third of people were saying that already at that point, they couldn’t afford their energy bills and were going without heating. Just to give you an example of why disabled people’s costs are a bit higher, there are a couple of different reasons. One is because many health conditions mean they really need an individual to be in a warm home, particularly people with arthritis or neuropathy caused by diabetes and so the house needs to be constantly warm, otherwise, people experience severe pain. One of the other key reasons is because of the use of specialist equipment, so people who have mobility scooters, electric wheelchairs or they use equipment like ventilators. Obviously, you need to charge those and it’s not really optional. One person told us that they were spending £90 a month just charging their mobility scooter twice a week. Obviously, that price is going up and so now they’re just charging it once a week and not getting out and about, so not doing their shopping and not seeing their friends and becoming really isolated.
Matt: That point about 210 is really interesting because often, we’re hearing people say, ‘How can we tackle this energy crisis without any kind of structural change in our homes?’ One of the things I hear time and time again is, ‘Just turn the thermostat down to 180. Don’t live in the lap of luxury.’ But as you say, for some households, that’s not an option to maintain their health.
Rebecca: Well, it sounds like it’s a double whammy as well, right? On the one hand, there are more energy-intensive and expensive things that need to happen in the home and on the other, as Lizzie outlined, often a lot of people aren’t able to work full-time. They may have challenges in terms of income already. I can see why, with the price hikes that we are experiencing and about to experience, it’s really going to be a huge crunch for these homes. A topic that all three of us, Matt, Fraser and myself, are passionate about is energy poverty and we’ve run a number of episodes talking about energy poverty but it strikes me that for the sorts of people that you’re engaging with in your work and through the charities, fuel poverty might be a much bigger issue for them. Is this something that you’re seeing? Is this something that’s being experienced? Is it becoming increasingly prevalent?
Lizzie: Yeah, I think definitely for us, it’s something that we’re hearing about through individuals and families. One family we’ve been working with are full-time carers for their daughter who has a life-limiting condition. She has to have a breathing machine on throughout the night and so there’s the cost to power that through the night. She is also double incontinent and so they have to buy incontinence pads but also have their washing machine on constantly to make sure there’s clean bedding and clothing. On top of that, they have carers who are in their home at night to support them and so they have to keep the lights and the heating on. All of these kinds of things are just adding up. This is a family that was in debt previously, so I think the main thing to recognise is that these are not luxury items that disabled people and their families can just cut out or choose between. These are essential things. Wheelchairs have to be charged. Breathing machines have to be powered and it’s a crisis right now that we need a long-term solution for rather than just a sticking plaster.
Fraser: On that, Gemma, this time last year, just for context, the price cap was just about to rise to £1,200 a year and there was worry there, for people who work around fuel poverty, about affordability at that level. We’re now looking at a price cap of £3,500 if estimates are accurate just now. In terms of the additional pressure that that’s going to cause and the support available, what is your feeling on the outlook of this?
Gemma: Well, we had a focus group a couple of weeks ago with some of our campaigners and frankly, when we talked about the additional rises, somebody told us that they were absolutely petrified. There isn’t any spare money. They’ve made all the cost-cutting that they can do. They’re going without meals. They’re not turning the heating on. Obviously, not quite now while we’ve had this heat wave but earlier this year, they were already sitting under two duvets and wearing extra clothes to keep warm and really reducing or stopping their energy use as much as possible. There’s no extra money and so what happens to those individuals? Now the government has introduced a package of support in May to help people with the extra costs of energy, so all households get £400 for their energy bills. There’s £150 council tax rebate but for disabled people, the additional support there is very minimal. For people who just claim Personal Independent Payment (PIP), which is a benefit to make up for the extra costs of disability, there’s just £150 available to offset some of those costs. If you’re on an out-of-work benefit like Universal Credit, which some disabled people do claim but a lot don’t, there is £650 of extra support but not everybody is entitled to that. Finally, the government has a scheme called the Warm Home Discount Scheme to help people on a lower income over the winter and in times when it’s really cold but, again, the government has revised its eligibility criteria this year which removes 300,000 disabled people who claim PIP from it. That’s another £150 that they’re not entitled to. Even though the support the government put in place in May is welcome, it’s really a drop in the ocean compared to what’s needed. We really want to see urgent action and, as Lizzie said, long-term action as well to really address this problem.
Matt: That’s a really important point. What I’m getting from both of you and also from data that we presented from the Citizens Advice Bureau’s online portal where they’ve got a stats hub there, they note that actually there’s been an increase in individuals asking for help about their energy bills way before Russia invaded Ukraine. This has been a long-run thing. Actually, really the outset of COVID was... I should say the bills were rising even prior to that but this has been a long-run thing. So I just wanted to get your perspectives, and maybe we can begin with Lizzie, about whether the scene was already set for a tough winter even before we saw gas prices spiral.
Lizzie: Yeah, definitely. I think that, as we’ve said, disabled people have faced additional costs for a long, long time. Many of the families we’ve been working with have been saying that for them, it’s just something else on top of an already really difficult situation. We’ve seen Social Care services cut and so during the pandemic, many disabled people didn’t have the care and support that they needed at home or in the community. I think as we move to winter, it is a really worrying situation. As Gemma said, many of the one-off payments that the government have provided have gone, for some people, directly onto debt that they’ve already accrued. This isn’t going to stop. We need a long-term solution for a long-term crisis really, otherwise, people are really going to be facing an even more difficult situation.
Matt: Absolutely and I think from the CAB’s own data, it was saying that the average debt for people who were reaching out I think was around the £650 mark. Gemma, I mean we’re hearing a lot about one-off payments. You’ve pointed out a number that are in place but I’m just thinking about a longer-term structural investment that we could make in the homes of disabled families. Are you seeing much focus or experienced much over the years around whether it’s government energy companies or charities looking to improve the efficiency of these homes? Is that something that is a topic of discussion or has it been largely neglected so far?
Gemma: I’d say it’s been largely neglected so far. Even charities like Leonard Cheshire, the disability charities, have done work before on energy and energy bills but I think the scale of this crisis means that we now have to think about and put a lot more thought into our policy work around the installation of homes being a longer-term solution. Yeah, the government isn’t really talking about it. We’re in conversations with OFGEM and other organisations who now are starting to talk about longer-term solutions but it’s not something that has been top of the agenda. So we would really want to see the government invest in a homes insulation programme for disabled people, whether they’re living in their own home, social housing or privately rented accommodation because we know that home insulation has such a huge impact on reducing energy bills. We also want to see the government put in place a social energy tariff to give lower rates for energy bills to people who do have high energy usage because of all the reasons Lizzie and I have both outlined just to make sure that it’s more affordable.
Rebecca: It sounds very clearly that the support that’s there is a good start but it’s nowhere near enough. A lot of what we’ve been talking about feels like very blunt instruments of financial support as opposed to something that’s more targeted or more tailored to the needs of different sorts of people with different sorts of disabilities. I’m wondering, from the work that you’ve both been doing, whether you’ve got stories from those people that you’re working with. Are there any asks that are just not being heard? It feels very top-down right now and actually, I suspect there are a whole lot of stories and a lot of individuals that probably are much closer to what those better solutions might look like because they’re the ones that are living day in and day out struggling with the challenges that exist and, as you said, they’re not uniform. They’re going to be very different. When we talk about a better solution or a longer-term solution, do you see there being an opportunity to create something that’s less blunt? Do you see there being an opportunity to amplify the voices of people who are currently experiencing some of these challenges and take into consideration what they’re saying?
Lizzie: It’s definitely an opportunity and I think there has to be a recognition of the severe impact that this crisis is having on disabled people in particular and I think there’s just not that awareness there at the moment. We’re calling for a long-term solution and there are a few things that we’d like to see within that which are around reform to the benefits system so that it really meets the needs of disabled people and benefits being uplifted in line with inflation. At the moment, that’s not in line. Obviously, benefits were uplifted earlier this year but it was in line with inflation last year and we saw that it raised to 10% in July, so that needs looking at and reviewing. We also want to see additional financial support to cope with the increased energy costs. As Gemma mentioned about the Warm Homes Discount, we’re calling for that to be reinstated for disabled people. Thirdly, we want to see more targeted support for disabled children and their families. So I think it is about that kind of recognition and responding to the very specific needs that disabled children, disabled adults and those with complex needs have and making sure that any plan that is drawn up by the government includes those needs and really responds to them in the right way. It can’t be just a one-off. It has to be an ongoing thing and that’s something that we’re repeatedly hearing from the families that we’re working with. They need that kind of consistency really and that sustainable solution.
Matt: I think you raised the carer point earlier as well, Lizzie, just in terms of providing support there. I’m recalling something from a couple of weeks ago. My mum basically cares for my grandfather who is elderly and increasingly needs support. He reached down and said, ‘Look, love, can I help you with the petrol?’ She’d normally say, ‘Don’t worry about it,’ but with where energy prices were, she sat down and said, ‘That might help.’ Obviously, she’s supporting him with food and energy bills. This isn’t just energy. This is a cost of living crisis. So I just wanted to get your perspective. Maybe if we go to Gemma first and come back to Lizzie. With the ripple effects from these homes and the families and friends who are supporting disabled households, should we be focusing support on that kind of support network too?
Gemma: Yes, absolutely because it’s a vicious cycle, basically. High energy bills mean that there’s less disposable income to spend on food and that also means there’s less disposable income to spend on transport. Many disabled people aren’t able to use public transport as easily as anyone else because it’s just not accessible and so people either use taxis or they’ve got adapted cars. The adapted cars tend to be diesel. What’s more expensive? Diesel than unleaded petrol. We’ve heard that people aren’t attending medical appointments because they can’t afford to put petrol in their car. Particularly in response to your point on carers, one of our campaigners employs a personal assistant to help her. The personal assistant can’t afford the petrol prices and so has handed in their notice which means that that individual is going out without the care that they need until they can recruit someone else but because of how underfunded Social Care is, it’s really hard to recruit somebody on a salary that’s competitive. Yeah, it’s a vicious cycle of various different factors affecting each other. Absolutely, people who are caring for others, whether you’re an unpaid carer or whether you are doing that as a paid profession, the cost of living is affecting those individuals as well and the cost of transport and petrol is still phenomenal and that really affects whether people can work and whether people get the care they need.
Matt: I think it was research even from Leonard Cheshire which was cited by the Welsh Parliament that pointed to a quarter of disabled people surveyed said they’d been unable to work due to inadequate social care support, i.e. that, in part, hadn’t been able to secure the care that they so very much need. Lizzie, anything just on that carer point? If we’re looking for targeted policy support, it’s not just about how much, it’s about who gets it and how they get it.
Lizzie: Yeah, absolutely. I completely agree with the points that have been made. Our research recently showed the impact on carers’ mental health. 75% of people said that it was impacting their mental health. We’ve heard from family carers who are just completely stopping going out and stopping getting those really small breaks that they had in the first place because they’re trying to save money which is obviously having a knock-on impact on their wellbeing and mental health. So yeah, it’s really worrying and absolutely, the support should be for carers as well.
Rebecca: I think this point about carers is such a critical point to raise. My mother-in-law is a paid carer and, in fact, my sister-in-law is as well and I’m astounded by how little they’re valued in the sense of economic value and in the sense of what they’re getting paid for the sorts of work they’re doing. It’s unbelievable and they have to drive to the clients and that can sometimes be quite long distances. If we think about people who are living out in rural areas, you can be spending quite a lot of time in your car driving between patients. The point that you raise, for me, means it just kind of spirals into a much bigger challenge about how we value different roles in society [laughter] and maybe that’s a topic for another pod because we could probably go down a huge challenge there. We’ve talked a little bit about the price hikes. The last few years have been astoundingly different and there’s been some really interesting work from the Centre for Research into Energy Demand Solutions (CREDS) looking at the changing energy consumption as people have been pushed to home work. I know, in my job, there has been the opportunity to claim back rebates. It’s not easy and it’s not obvious. Is that adding to the challenge as well? Not only are people not able to get out but it’s increasing the costs of what they have to do with being at home all the time, particularly people who might have to stay away or shield because of the challenges that COVID had brought for them. We said it’s kind of coming from both directions but this feels like a third or even a fourth dimension as well.
Lizzie: I think there are pros and cons, I guess. Working from home does provide accessibility in different ways and flexibility for people who might need that and have additional needs. I think the main thing for us is that work is often positioned as a solution to the cost of living crisis and for many people who have complex disabilities, full-time work or work just isn’t an option. It’s the same for carers, as I mentioned, in that that isn’t an option. So I think it’s just important, in the narrative there, that it’s not always presented as a solution. It’s not as black and white as that.
Matt: Has anybody from the government or even the main political parties and parliament reached out to you and framed this as a public health crisis yet in the same way that COVID was framed or, at least, was eventually framed as a public health crisis? Are you getting a sense of the urgency that people’s health is in jeopardy and that action needs to be taken or are we not even beginning to have that debate? Obviously, you are two of the leading charities in this space.
Gemma: Yeah, it’s not really being framed by the government as a public health crisis. There’s an acknowledgement that people are struggling and more needs to be done but their health impacts are really not being considered. So for example, we had one person tell us that they’re diabetic and they can only afford bread and cereal to eat, which is making their diabetes worse, which means they’ve got to go to hospital more, which means they’ve got to spend money on transport, which means they’ve got less money. Again, this vicious cycle keeps going. I think Lizzie touched on it earlier about mental health. This is going to be and cause another mental health crisis in the country. I don’t think we’ve quite dealt with the aftermath or, I suppose, the ongoing situation with COVID yet in terms of mental health. Earlier this year, before the April energy price hike, half the people then that we spoke to told us that they were experiencing mental health difficulties because of the rising cost of living and how concerned they were about it. This is very distressing but we had people, when we’ve been talking to them in our focus groups, talking about how they might take their own life because they don’t want to sit and live in pain all winter because they can’t afford to put the heating on. This isn’t just a crisis. This is now an emergency and it really needs to be tackled urgently. As you say, it’s got to be framed as a wider debate around health because the knock-on effects obviously devastatingly affect the individual but then the knock-on effects to the wider health system, whether that’s in Social Care or NHS, are going to be huge.
Matt: As we know, the NHS is under tremendous strain at this moment in time. We discussed this before you both came in. Lizzie, are we framing this energy crisis as a public health crisis and if not, should we?
Lizzie: I don’t think we are framing it as that but I think it very much is. It’s not just those practical things that people are struggling to afford. It’s not just the equipment that they’re having to cut out but, as we’ve said, it’s the impact on mental health as well. At Sense, we’ve actually been forced recently, because the situation is so dire, to launch our own support fund. We’re actually awarding a thousand families with payments of £500. It’s something we haven’t done before but it shows the situation and how extreme it is that we’re stepping in but actually, the government should be providing that plan and supporting the people that need it most.
Matt: Yeah, that’s very important work.
Rebecca: I want to just pause for a second on what you’ve both just said. I think, so often, it’s very easy to get lost in the massive scale nature of the energy crisis and the cost of living crisis and look at the big numbers and the big challenges but when you humanise that discussion and you’re talking about people thinking about taking their own lives or taking their own lives because of these challenges... that really... it really shows you just how dire this is and how much this is a problem that needs to be addressed and addressed seriously.
Matt: And it still can, right? It still can be addressed. It is not autumn yet. It is not winter.
Rebecca: It isn’t.
Matt: So [laughter] what should we do?
Rebecca: Exactly! What do we need to do? If the two of you were in charge of running the country and setting the policy, what do we need to do in the short-term? What do we need to do today? What do we need to do in the next year? What do we need to do in the long-term?
Matt: No pressure [laughter].
Lizzie: Yeah, I guess we’ve kind of touched on it but we really need the government to announce that long-term financial support for disabled people and to announce it fast. We can’t wait for another ten months until next year and until we reach winter. Disabled people and their families are struggling right now and for many people, it’s only going to get worse. We need to see those solutions. We need benefits to be uplifted and we need to reinstate the Warm Homes Discount. That’s what we’re calling for an organisation through our petition that we launched earlier this year.
Gemma: Yeah, absolutely. Immediately, what can be done is reverse the change to the Warm Home Discount Scheme so that £150 is going back to those 300,000 disabled people, uplift benefits in line with inflation and review benefits quarterly as inflation keeps increasing. It was pegged at 3.1% last year. We’re already at 10% inflation this year, so that needs to be reviewed regularly so anybody who is in need and on a low income can actually afford to be able to live. I think that’s so important and so critical. They need to look at this social energy tariff and see if that could be introduced quickly. Maybe that’s more to be done in the next six months but something that’s a bit more sustainable is needed. As we said earlier, it’s about looking at home installation, again, to prevent this from being a recurring issue. We asked our campaigners, ‘If you had 15 minutes with the new Prime Minister, what would you ask them to do to tackle the cost of living?’ This is getting beyond the realms of our expertise but they were saying the point that it’s not right that energy companies are making this level of profit and yet, if the projections by EDF (which were made yesterday), half of the country is going to be in fuel poverty. As I say, it’s beyond our expertise as a disability charity but there’s something around the fairness and how the system as a whole operates if half of the country is going to be living in fuel poverty by January. Something there needs to be addressed.
Matt: Yeah, and maybe just before we wrap up, you mentioned before about the stress that this will place on the NHS during a pandemic, so somebody somewhere, I hope and pray, has done the calculations of what these higher energy costs might mean in terms of people’s mental and physical welfare and the strain and stress that will place on the NHS and the costs associated with that because I would assume that nipping this in the bud prior to winter would actually save money in the longer term and we’ll certainly need to rely on that. Is that an argument that you’ve heard or have been making at all?
Lizzie: It’s not an argument we’ve heard but it’s an argument that really, really does need to be made. It has to be a whole system approach (a bit of jargon terminology) because if we just treat it by saying, ‘Oh, the Warm Home Discount Scheme is administered by BEIS. Benefits are administered by DWP. Health is over here and if we don’t join that system up, then we’re only going to get patchy solutions which aren’t going to work for anybody, never mind disabled people.
Matt: I can see Becky nodding because she’s all about the co-benefits too.
Rebecca: Oh, absolutely and that was making me think of an episode we ran – gosh! – a couple of months back looking at a piece of work that PWC did and it was a different context. It wasn’t explicitly looking at people with disabilities or even segmenting people according to sociodemographics. It was looking at geography but they were actually, for one of the first times, putting numbers to some of these co-benefits and it was astounding.
[Music flourish]
We could talk about this for so long and I think that the solutions that you mentioned are absolutely critical and hopefully, folk listening to this pod will take heed and maybe we can start supporting some of those connections and the dialogues that need to be happening and some of this broader cross-system work that needs to be done. But I guess what I really want to say is thank you so much to both of you for coming along. Thank you so much, Lizzie. Thank you so much, Gemma. You’ve both given us a lot of food for thought and raised some very, very important and critical points that we all need to be thinking about going into this winter ahead.
[Music flourish]
For now, I also just want to say thank you to everybody that’s listening. You’ve been listening to Local Zero. If you haven’t already followed us, please go to Twitter and find us and follow us. We’re @LocalZeroPod. There are heaps of discussions going on over there. Make the connections as well with any of the guests that you’ve heard and any other folk that are contributing to those conversations. Feel free to email us as well. If like me, you can’t constrain your thoughts to just a few hundred characters, email us at LocalZeroPod@gmail.com. We would love to hear from you there.
Matt: Excellent. Yeah, and please, if you can, take two minutes to leave us a review on Apple Podcasts. This helps us spread the word about the podcast and reach new listeners on these extremely important subjects like the one we’ve been covering today but until next time, thank you to our guests, thank you for listening and goodbye.
Rebecca: Bye.
[Music flourish]
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