Adult Social Care Committee
Corrected oral evidence: Adult social care
Monday 23 May 2022
Watch the meeting
Members present: Baroness Andrews (The Chair); Baroness Barker; Lord Bradley; The Lord Bishop of Carlisle; Baroness Eaton; Baroness Fraser of Craigmaddie; Baroness Goudie; Lord Laming; Baroness Shephard of Northwold; Baroness Warwick of Undercliffe.
Evidence Session No. 10 Virtual Hearing Questions 79 - 84
I: Luke Price, Centre for Ageing Better; Fazilet Hadi, Disability Rights UK.
Luke Price and Fazilet Hadi.
Q79 The Chair: Good afternoon, everybody. This is the 10th oral evidence session of the Adult Social Care Committee. I am very pleased to see you all. We are particularly pleased this afternoon to welcome five very distinguished witnesses who will take us through some of the big issues in adult social care that we have not yet addressed: Luke Price, from the Centre for Ageing Better; Fazilet Hadi, from Disability Rights UK; Professor Donna Hall, from the Bolton NHS Foundation Trust; Ian McCreath, the head of TLAP; and Kate Sibthorp, a member of the National Co-production Advisory Group and co-chair of TLAP.
It is terrific to see you all. Thank you so much for your time and your willingness to come and share your experience with us. I know that it will be invaluable. We will break up this afternoon into two sessions. First, we will ask Luke and Fazilet to give their accounts of the narrative around ageing and disability, which is so often negative, discussing why this is the case and what impact this negative narrative has on people’s lives and their ability to access services and take control of their lives.
The second session with Professor Hall, Ian McCreath and Kate Sibthorp will look at some of the issues around stigma and discrimination attached to care needs, and why we still wrestle with these ideas and images. We will also look in the second session at how we shift that narrative. Where are the places with good practice where this has been challenged and positively overcome? That is very important for this committee.
As we pursue our inquiry, which is on the invisibility of the unpaid care sector in relation to young people and older people, we have been struck by the impact that has on the ability of carers and those they care for to get the most out of the system, realise their possibilities and realise the contribution that they want to make, the sort of care they want to access and the support they want to provide.
Those questions are around the obstacles and how to overcome them. It is very important for us to talk about them and get your experience on how you shift some of the enormous blocks that seem to be in the way of improving our attitude to adult social care and in the practice and policies on it. That is what I hope we will talk about this afternoon. Thank you very much indeed again.
I will start by asking Luke a very basic question. For the benefit of the committee and those listening to us this afternoon—of course, a transcript will be provided, which you will see—can you tell us about this narrative, which seems to be so dominant particularly around older people and the ageing process? What is it grounded in? How accurate is it in terms of people’s lives? Are there parts or aspects of society where this particular narrative has a more real and stronger hold than in other parts?
Luke Price: The Centre for Ageing Better has done a range of research into this topic, looking at what evidence already exists and analysing how different sectors talk about ageing and older people. We have found that the narrative around both ageing and older people themselves is largely negative. Negative ideas come through most strongly and they really do not capture the diversity of older age. Often, everyone aged over 65 or over 50 is lumped into one group without any understanding of the diversity between individuals.
The process of ageing itself is often framed as a process of inevitable decline towards death. A really common example of this kind of thing that you might see in your day-to-day life is jokey birthday cards that you can buy in any card shop. They often commiserate with someone for getting older or make jokes about some of the age-related changes that you might experience. It really frames that in a negative way. It is a very common and casual way that ageism exists in our society.
Becoming old is seen as a one-off thing that just happens at some point in your life. You just become old at some point, rather than this lifelong process that happens to everyone throughout their lives. It contributes to the idea of this othering—that older people are seen as being different from younger people.
As to older people themselves, as individuals and as a group, they are often categorised as being quite frail, vulnerable and very dependent on other people for support but also on services. Therefore, our ageing society and demographic change influence the kinds of things that government talks about a lot. It is often framed as an increased burden on public services—this idea that older people are essentially lacking independence, do not have any control over their own lives and, therefore, do not really contribute anything. We know that is not true because, of course, older people are often working. They are contributing in the workplace. They are contributing to their families, often through unpaid care for children and things like that. Of course, they also contribute a lot through volunteering and community work. That is very much the negative side of the narrative that does not capture the diversity.
There are some positive slants to the narrative that you sometimes see. We have done work looking at social media, which is often an opportunity for older people themselves to challenge some of the negative things that we see, talking about their own real experiences and saying, “This doesn’t look like what we think the broader narrative is”.
Sometimes you can see an attempt to portray a more positive narrative, but it goes too far the other way and becomes quite unrealistic. There are some classic examples in the media. Stories about a 100-year-old who has run five marathons in the past few years or the classic image of a “skydiving granny” or something like that are an attempt to challenge the negative stereotype but, in doing so, create an unrealistic idea of what ageing is like, so you lose diversity from that as well.
To try to challenge that, we have created an age-positive image library. It is a whole host of free images that any organisation can use in whatever they are doing, whether it is a media organisation, an employer or a charity sector organisation, to help capture this diversity more and start to think more about inclusive things.
You asked about different sectors. We did some work looking at how they talk about ageing and older people. We analysed a whole host of different texts from four different sectors. We looked at how government talks about it, and how online print and social media talk about it; we also looked at advertising and charities.
We found two themes to the key narratives of government. One was around pressures on health and social care—the idea that specific services are in crisis. You will often hear terms, which I am not a huge fan of, such as “bed blocking” or the “winter care crisis”, and the idea that older people are a problem or a burden that must be dealt with and cost a lot of money. They are often treated as a group rather than individuals.
The other theme that you often see from government is intergenerational conflict. You also see this in the media. It is this idea of pitting younger generations against older generations in a fight for resources. That can lead to very negative perceptions between generations, although we have done some survey work with the public and the public perception is a bit more mixed than the narrative we see in the media or in government. Only about a third of 18- to 34-year-olds have a negative attitude towards the older generation. There is obviously something there, but it may be a bit overblown by the narratives that we see.
It also confuses generations with wealth. A lot of these inequalities are more to do with when you grew up and when you were at a certain life stage. Therefore, it is not realistic because it hides a lot of the inequalities that you see within generations. There are a lot of older people who do not own loads of properties and do not have a lot of wealth. They are struggling, so this intergenerational conflict narrative muddies that somewhat.
We also see quite unrealistic narratives in the media. It is the classic imagery of older age and ageing being a decline towards death, physical frailty or cognitive decline. Older individuals are often framed as inherently vulnerable, particularly in the context of scams. There will be lots of stories about scams that people have fallen foul of. That speaks to the idea that older people are seen as not having any agency, not being independent and not having any control over their lives. The tabloids tend to focus more on the individuals in crisis and the broadsheets look at services and society in crisis.
Again, it is similar to what I have just said about the government narrative. It is the idea that our ageing society costs loads of money and we cannot possibly support people properly.
With social media, although it is an opportunity to challenge what we see and people taking control of their own narrative, it also tends to caricature things, often along gendered lines. You will see a lot of language on social media where people are referred to as “little old grannies” or “grumpy old men”, or other common, stereotypical language that you might see. Obviously, again, that does not necessarily represent later life.
You also see what is called internalisation. When it comes to stereotypes and narratives, if we are constantly being told that being old is bad or that ageing is a negative thing, we might start to believe that and internalise these ideas. That can have a really negative effect on our health. There is research that suggests that people may choose not to do physical activity because they think, “I’m just getting old and there’s no point necessarily doing that”.
Advertising caricatures ageing and older age. Stakeholders we interviewed said that that is how you sell things, that you have to caricature stuff, which may or may not be true. We see a lot of stuff about fighting ageing in the advertising sector. We will all be familiar with anti-ageing creams and things like that. The classic idea is that ageing is something that needs to be fought and resisted rather than celebrating what it looks like. It is not particularly accurate and does not capture diversity. Often, particularly in video advertising, older people will be sat passively in a chair, surrounded by similar colours and either staring out the window or watching TV. Again, it is this framing of them as inactive and powerless to act.
Finally, we also know that these kinds of negative attitudes towards older people are very common in employment. People struggle in the recruitment phase of trying to find jobs. In workplaces, we have done research where lots of employers will have an ED&I—equality, diversity and inclusion—statement or policy, but age is often the characteristic that is forgotten. People are better with gender, ethnicity, race and disability, to a certain extent. Obviously, different employers behave differently, but age is often the one that is not thought about in any great detail.
The Chair: Luke, that was a splendid answer. It was extraordinarily broad and deep. It is very complex. Clearly, there are deep cultural and behavioural attitudes towards ageing. I would love to ask you more about how other countries and cultures see these issues.
Do you think a lot of this is the product of us having realised demographically, starting probably in the 1970s, that we were in fact going to be a society that was rapidly ageing, as we can now see very clearly the implications of it? Do you think it has been reinforced and exaggerated perhaps by the fact that we are living through this particular period of our demography?
Luke Price: It is probably fair to say that a lot of these stereotypes and negative narratives existed for a long time. I do not necessarily have any evidence from our work to back this up, but perhaps because it is much more common in the media—because we are constantly talking about the social care crisis, bed blocking or whatever term you want to use—it is more at the forefront of people’s minds.
I do not think that most parts of society are necessarily that aware of the ageing society and demographic change and are that well prepared for it. As I said, we have done a lot of work with employers, looking at employment. When you speak to them, a lot of people are not aware of how the workforce is changing, how many older workers there will be and how many fewer younger workers there will be. When you tell them this they are quite surprised, and then they have to think, “What do we do? How can we improve our policies? How can we change things?”
The Chair: That in itself is a bit alarming, frankly. We would be very glad to see the relevant research, and I am sure our clerks are in touch with you. As we go through our questions, there will be more opportunities for you to tell us why you think these things are as they are.
Q80 Baroness Goudie: What does this narrative tell us about how society values the lives of older people? I agree with you, by the way, about the way older people are imaged and the jokes. All of that is ageist. It is as if people are not capable of running their own lives or even working. What does it tell us about the opportunities and chances that society is willing to give to older people? To what extent is this reflected in the services that older people can enjoy and access?
I also feel that age should be praised, not saying, “It’s about time you went away”, et cetera.
Luke Price: Yes, definitely. I think the narratives show, as you touched on, that we place a really low value on older people generally.
Baroness Goudie: Absolutely.
Luke Price: As a society, we see them as a burden and a problem to fix. It often gets enmeshed with these discussions about funding of public services and things like that.
That is not to say that there are no places and people who celebrate older age. We are seeing a movement building there. Generally speaking, though, it is this drain on resources, a lack of contribution and all those kinds of things that I have touched on. That is when older people are visible. There is also a problem with when they are invisible, and they are all too often invisible until they cannot be ignored any longer.
One example that I often think of—we saw this during the Covid pandemic, particularly in the first lockdown—was when people were discharged from hospitals into care homes without being tested. At that point you could argue that they were invisible, until we started seeing those horrible death rates. Then they were like, “Hang on a second, something’s gone wrong here”. I think the High Court recently ruled that unlawful and it has been looked into. When they are visible, generally speaking they are not seen as very valuable. That lack of value then means that they are made invisible and horrible situations like that happen.
How does this play out in different services and opportunities? There is lots of research into different areas. A quite prominent one is looking at mental health services. There is research to suggest, for example, that older people are far more likely to be prescribed drugs than talking therapies. In some cases that is relevant and appropriate treatment, but there is research suggesting that physicians may see certain symptoms as just part of getting older and that depression and anxiety might be ignored in that sense.
We also know that, generally speaking, the proportion of over-65s referred to IAPT—improving access to psychological therapies—is lower than the general population. There is research that indicates that.
We also see across the country that, in the same way that you have CAMHS—child and adolescent mental health services—you have mental health services for older groups, I think for the over-65s. Of course, mental health issues can present differently at older ages—for example, in how they interact with frailty and other conditions. But the idea that you have a wholly different system rather than a specialist who helps older people who are still adults, as it were, is a problematic way of framing it.
Another big thing is hearing loss. We know that this issue disproportionately affects older people. There is no national screening service to alert people to hearing loss and its consequences. There is research showing that untreated hearing loss is a huge risk factor for cognitive decline. If you are more at risk of something as you get older, but you do not realise it is happening or you do not want to get help for it and there is no support in the first place, that can have a real, negative impact on your life. It is an issue that affects a lot of people, but particularly as we get older.
There are other services where this lack of value placed on older people can have an effect. With regard to alcohol treatment, people in mid-life are often the most likely to drink at harmful levels, but they are also the least likely to be referred to services, and treatment services do not tend to be age-appropriate. There are certain things that you may say to someone who is 60 and who has a drinking problem compared to someone else. Of course, it is more complicated than just your age. There are lots of other factors that you need to take into account, but that has not necessarily been thought through in any great detail.
On other stuff from healthcare, we know, for example, that older people are much more likely to be over or undermedicated for pain management. This speaks to my point earlier about pain and ill health being seen as natural for older people rather than, “This person is experiencing pain. It doesn’t matter that they’ve got older. Let’s think about what we can do for this”.
One other thing I will quickly highlight is new homes. We do a lot of work on homes—how homes are built and whether they are accessible for the population. We know that by 2030 only one new accessible home is planned for every 15 people over 65. There is nowhere near enough building of accessible homes to meet the demand of our ageing population, which means that lots of new homes are being built very much with a younger person or a younger family in mind, not necessarily the ageing population. The only place we see attention being paid to accessible housing is for retirement communities or for specialised older people’s housing. Those types of housing have a really important role to play, but lots of people do not want to live in specialised retirement communities. They do not want to live in specialised housing. There has been research in the past showing that we are one of the most age-segregated societies in Europe. The idea that the only accessible housing is being built in communities that are essentially segregated could reinforce that problem.
Baroness Goudie: Do think tanks such as the TaxPayers’ Alliance and other financial think tanks consult you when they have said over the last year or two that elderly people should not have bus passes or free TV licences—all the benefits that are given—regardless of their financial situation? Do they consult with you or any of the other charities represented?
Luke Price: Off the top of my head, I do not know whether they do or not. I can certainly answer that in writing after this.
Baroness Goudie: That would be very helpful, because they come out with crazy things.
The Chair: That is a good question. You mentioned the housing situation, which is very close to our hearts and to mine. You said that we were the most segregated country in Europe. Can you give us the evidence for that, please, as it relates to housing? I think you gave a figure of one house being built for every 15 people over 65. I am surprised it is as high as that, frankly, but you make a very important point.
Q81 Lord Bradley: Good afternoon, Luke. Thank you for that excellent description and explanation of the narrative that you have laid out to us. Having had a birthday last week, quite a few of the birthday cards I received were of the type you mentioned, so I share your concern.
How will we challenge this narrative? How do we change attitudes through changing the narrative? What role can legislation play in that, or is it far more cultural and behavioural? How do we influence the organisations that are perpetrating the narrative in the way that you have described, and change those attitudes and the narrative in a much more positive way?
Luke Price: I would say that it is probably all three of those things. You can do it through legislation. It also needs cultural and behavioural change. It is such a complex issue that is entrenched across so many different levels within our society. Behavioural change is needed, but the way our environments around us exist and the narratives we see affect those attitudes and therefore affect behaviour.
I would highlight two things here. Government has a key role to play in challenging and changing the narrative through legislation and other approaches. It is an issue for all government departments to be thinking about this. There are likely to be things that all government departments could be doing better on this.
We did some survey work with the public. The overwhelming majority of adults in England—around 82%—believe that it is important for the Government to respond to the UK’s ageing population. There is a clear understanding from the public that this is something the Government should be getting involved in. That is why we as an organisation are calling for a cross-governmental strategy on ageing, as well as an older people’s commissioner, which I can talk a bit about, who would be helpful in acting as a voice and advocate for older people across the various government departments, and scrutinising legislation and policy areas dealing with issues that affect older people.
There are a few things that an older people’s commissioner could do. One of the main things would be promoting awareness of the rights and interests of older people. That would be one of their fundamental roles. There are examples in recent history where it could have been really helpful to have this person doing this. I have already mentioned the example of early discharge from hospitals into care homes during Covid. An older people’s commissioner could have spoken up about this and tried to get involved.
The other one, from a Covid perspective, was the “do not resuscitate” orders that we saw for older people, without consent. I think I remember one care home being reported where there were blanket “do not resuscitate” orders for anyone over 80 with dementia. There was no consultation on that and people were not given accessible information or support to make that decision themselves. An older people’s commissioner could have highlighted this and challenged it.
The second thing the older people’s commissioner could do is challenge discrimination against older people, calling out where they see it. Wales already has a commissioner for older people, which launched the #EverydayAgeism campaign. It has been doing a lot of work to campaign against ageism and discrimination, focusing on the messaging side of things. It raised concerns with the BBC about its use of ageist stereotypes during a promotional campaign. It challenged ageist articles published by certain newspapers. It is also taking a more structural approach. It is getting the Welsh Government to take the #EverydayAgeism pledge and think about it across its sectors.
Then there are more practical things like campaign materials and resources, challenging myths and developing a training course to empower older people themselves to take action. It is going back to the point earlier about social media and the fact that not just in social media but a broader movement is building and supporting people to have the power to challenge that stuff. An older people’s commissioner could do that.
It could also encourage best practice in the treatment of older people, gathering evidence on that, looking at what it could look like and making recommendations. Before new laws and legislation come into place, it could review that and look at how it affects older people, saying, “Have you thought of this? Perhaps this isn’t going to work”. That is one really clear idea that could help support and challenge ageism.
The other thing we are doing is thinking about getting messaging and imagery right. I have talked a lot about negative narratives and unrealistic narratives. We are trying to find a balance between positivity and realism. Of course, lots of people face challenges in their lives. We are not saying that we just want to present a completely rosy image of what it is like to be older or to get older. We want to make sure it is more realistic.
We have a toolkit, aimed particularly at people in the communications professions, with some recommendations on trying to shift associations away from frailty, vulnerability and dependency. Being older does not necessarily mean that you are any of those things. Lots of older people lead healthy and active lives, and they participate and contribute. It is challenging that narrative. It is trying to be more accurate with terminology and using things that are precise. The term “older adults”, “old person” or “old people” is generally accepted and respectful. It should be the standard if there is a clear need to refer to the age of someone or a group. You often see news stories where the age is brought up and you think, “Why does it matter that this person is that age? It’s completely irrelevant”.
The other big thing that is important is avoiding what might be seen as compassionate ageism. There is research that suggests that we see older people as quite friendly or warm but also not very competent. Those stereotypes lead to pitying and patronising behaviour. For example, in certain contexts, deciding just to do blanket DNRs assumes that people do not have an opinion or a choice as to what to do.
The final one is about not stoking conflict between generations. As I outlined, this is a really damaging narrative that some people believe, but not everyone believes. It confuses a lot of things and makes invisible some of the people most at risk of the negative consequences when they are ageing. It is just assumed that there are loads of rich people with several houses and all that kind of stuff. We have also been trying to get the media to think about this in a bit more detail and get age put into the editors’ code. It is not actually in the editors’ code currently. Lots of other protected characteristics are, such as gender, ethnicity, race and disability. Whether that works well or not just because it is in the editors’ code is another question entirely. The fact that age is not even in it seems to us to be quite a large oversight.
Lord Bradley: Thank you so much for that. Your idea of a commissioner is something that we should think very carefully about. We have a Children’s Commissioner and a Victims’ Commissioner. It has raised the profile. If we are talking as a committee about the invisibility of carers and social care, that focus may be something we should seriously consider. Thank you, Luke.
The Chair: Following on from that briefly, at one point, we put forward the idea of an age commissioner in a manifesto. Now we have the example of Wales. Those examples that Luke has produced are really telling, because they have made a difference. People saw it as a rather waffly gesture towards an ageing population, but this is really a hard policy. That is extremely important, Luke. If you could give us some examples of how the commissioner in Wales has made a difference, it would be very good.
You have been a wonderful witness, thank you. Could you tell us this in writing? You said that a movement is building to try to correct this image. I think that is what you meant. If that is the case, given the weight of the challenge we have, anything that you could tell us about what that movement might constitute would be useful. I take the point about the editors’ code particularly. I am afraid we will not pursue it because we do not have time, although it is very tempting. Thank you again for your absolutely splendid evidence.
Turning to Fazilet, thank you very much for being with us.
Q82 Baroness Eaton: Hello, Fazilet. My question is to you. To what extent does the dominant narrative around disabled people and working-age adults with care needs differ from the narrative previously described to us by Luke Price around older people? How does this narrative frame the way care services are delivered? Are there specific examples in the delivery of care services that reflect this narrative?
Fazilet Hadi: Thank you so much. There are things that resonate for me in what Luke has very articulately set out. I will start though by saying that I am blind.
To understand the narrative, if I had been born 100 years ago in this country, I would probably have been sent to a home for blind babies in the countryside. I probably would not have had an education. I probably would not have had a job. One hundred years ago is not that long ago, and that context is quite important. Actually, I did go to school, reasonable adjustments were made for my exams, I did train to be a lawyer, and I did have Access to Work to support me in my working life. Immediately, you can see that things are changing. As Luke said, we still have the remnants of internalised views of disabled people and older people.
Coming to disabled people, we look back and our lives might not be valued equally. We still find this today. As Luke did, I would point to the Covid pandemic. We found ourselves feeling less valued because of the Coronavirus Act limiting our access to social care and education. We felt less valued because, as Luke said, some people with learning disabilities were asked to sign “do not attempt resuscitation” notices. We found ourselves called vulnerable. We found the Equality Act not being implemented. These narratives about being less valued have their roots in our history and have not quite gone away, as we saw only two years ago.
The other thing I would say is that, often, it is not the disabled person who is talked to. It is our families, our carers and the people around us. Quite shockingly sometimes, in a shop, someone will talk to the person with me, even though I have the credit card. I find that extremely annoying. Again, these things are so embedded in our society. It is the notion of what is valuable. It is the notion of, “Can she speak?”, “Does she take sugar?” kind of idea.
The invisibility of carers is probably because disabled people are invisible, and therefore their love for us and their support of us becomes invisible. When the welfare state was designed in 1948, the idea of disabled people was probably of people who had something wrong with them. They were not able-bodied. That deficit model has influenced the shaping of many of our services. Certainly, disabled children did not go to mainstream schools until about 1968. That is not that long ago. When you think about that, you realise that a lot of our public services were designed not with us in mind. There are 14 million disabled people. It is a fifth of the population. Not all of us would identify as disabled, but we all face disabling barriers to information and to the environment, as Luke has said.
Services were not designed with us in mind. When we are thinking about health, social care or education, that is quite a challenge. If we think about health particularly, perhaps 50 years ago people used to go to the health service because they could be mended or fixed. Thankfully, many people can be fixed and cured, but many people who go to the health service now have long-term conditions or impairments that they must live with. The health service itself sees people through a medical lens, but actually it needs to see us through different lenses.
I just wanted to say a bit about the disabled people’s movement. I think that has been responsible for trying to change the narrative around disability. It has had a lot of success. It has changed the narrative from being invisible to being visible. We saw disability campaigners on the streets, chaining themselves to buses in the 1980s and 1990s, prior to the Disability Discrimination Act coming into force in 1995. They were the first rights we had to equal treatment as disabled people.
We then saw disabled people working on the UN Convention on the Rights of People with Disabilities and co-producing that convention in 2007. We saw disabled people talking about co-producing “Nothing About Us Without Us”, so talk to us when you are designing services.
We are seeing shifts, but the historic context has not gone away. It will need a lot more work from political leaders, service leaders and culturally from the public before those old stereotypes of deficit and less value go away.
The Chair: Thank you, Fazilet. That was very impressive.
Q83 Baroness Fraser of Craigmaddie: Thank you, Fazilet. I want to follow on from that on what you were saying about co-production. Quite rightly, you acknowledge the successes that disabled people’s movements have had around “Nothing About Us Without Us”. What was quite scary and stark, I would argue, during the coronavirus pandemic was how quickly that was forgotten, and things were very much done to people without any consultation about what they thought, whether it was access to social care and services or whether they really were vulnerable to Covid.
Thinking in that context of how fragile the gains have been, what role would you say advocacy would play in establishing a more accurate narrative around disability and care needs? How do you think advocacy could best be leveraged to generate this change?
Fazilet Hadi: I totally agree with you. Covid really did show us that we had not made the gains that we thought we had made, and on the whole narrative of vulnerability the Equality Act was not implemented. We did not have British Sign Language (BSL) on government broadcasts. We did not have clinically extremely vulnerable people receiving letters in formats they could read. We did not have reasonable adjustments for disabled people in terms of needing support in hospital, and it went on.
In terms of advocacy, the disabled people’s movement has disabled people’s-led organisations. There are over 300 in England. Perhaps 150 have some sort of funding from local government, delivering services. It is really important that there are independent advocacy organisations run by disabled people, who not only have the lived experience to support and speak out but can deliver contracts on behalf of local government and other health bodies. We can be there to give peer support to disabled people. We can be there to give mutual support.
I think we need funded advocacy. Unfortunately, what we have seen is that those disabled people’s organisations have lost massive amounts of funding over the last 10 years. Even though there may be about 150 left with some sort of funding, there has been a big reduction in disabled people’s-led organisations.
That is the advocacy at the political, policy and service level. People do also need individual advocacy in being able to make sure that they get the right benefits and access to the right health and social care and the right education. That is extremely patchy and often not in place at all. If you like, the whole ladder of advocacy, from the political and the policy down to the person needing advice and support independently, has pretty much had a real battering over the last decade. It can be so empowering to get the right advice and information on a personal level. It can also be amazing to speak out to people like you and other people in leadership roles, to influence change. That needs to happen not only at national level but at local level and regional level through the new integrated health and care systems (ICS). How do we support disabled people to come to the table as equal partners with the ICSs, local authorities or with other bodies so that we can genuinely have a civic role in shaping services and public policy?
Baroness Fraser of Craigmaddie: I really like your distinction between the political and policy side of advocacy and the importance of the personal side. Since we have all been talking about commissioners, the committee might be interested to know that there is a Private Member’s Bill about to be laid in the Scottish Parliament for a disability commissioner. I will leave that one there.
Fazilet Hadi: Interesting.
The Chair: It just goes to show that the best things are happening in Wales and Scotland, which I am very proud of.
We are enjoying your evidence so much, and I am sorry we do not have more time, but our last question to you, Fazilet, is from Lord Laming.
Q84 Lord Laming: Fazilet, thank you very much for sharing your knowledge and experience with us. I want to go back to your brilliant example of when you were at the check-out in the supermarket and the questions were addressed to the person who was with you and not to you, even though you had the card. It reminded me of when, for years, I had a committee chair who was an absolutely brilliant man. The only difference between him and me—apart from him being very brilliant—was that he was wheelchair-bound. When we went to conferences, I was embarrassed by the fact that people would come up to me and ask me if he would like to have a cup of tea. It was just shocking.
From your experience, can you share whether you think the national disability strategy is working in changing people’s attitude, or whether there is much further to go?
Fazilet Hadi: The national disability strategy was not designed to change attitudes. It was launched in July last year. If I look back at it now, it was basically a compilation of government action plans on disability. What was the Department for Transport doing, what was the Department of Health and Social Care doing, et cetera? It was useful to collate that.
It also had some actions that the Disability Unit would lead on. Some were around monitoring and reporting; some were around better classification; some were around better use of IT. Actually, there was an action for the Disability Unit to look at shaping a public awareness campaign.
We know that to shift public awareness you probably need to be more like Coca-Cola or McDonald’s in the spending that you need. A couple of hundred thousand pounds or a couple of million will get you nowhere. Indeed, the Time to Change programme, which was run by MIND and Rethink over many years, shifted the dial on understanding and awareness of mental health, but it took millions and millions of pounds, and it kept at it for 10 years. I do not know how much the dial was shifted. If you stop spending, the dial could swing backwards.
We have our issues with the national disability strategy as disabled people and disabled people’s organisations. It did not live up to the ambition that we saw for it. It was not transformational. It did not tackle the big issues of health and social care and inadequate benefits. Nevertheless, it was a good attempt by government to pull things together and give us a road map, even though we would like to see that road map vastly improved and made much more radical.
I think the disability strategy is much more about how government and public services need to change as opposed to how the public need to shift their attitude. Indeed, if we are talking about public awareness campaigns, they are probably cheaper to run these days with social media. It is not out of the question. It would be good to see a future iteration of the disability strategy and perhaps putting more effort into that. I think it was much more focused on how we can shift services to be more inclusive and provide more equality. As I say, I think it can be built on, but it did not give us any magic bullets, I am afraid, on the awareness front.
Lord Laming: We do not have millions of pounds to offer, but are there any recommendations or things that we can suggest that might improve society’s understanding and appreciation of people with a disability?
Fazilet Hadi: Sometimes narratives are dangerous when what is done does not back them up. The Government talk quite a lot in the social care White Paper and disability strategy about disabled people having choice and control over their lives, having personalised services, being empowered, et cetera, et cetera. But we need some concrete things either to be put in place or to be improved. We need to build on and expand the system of Direct Payments where disabled people have a budget and choose how the money is spent. We need that to be improved so that even people who do not want to hire and fire their own personal assistants still have that level of choice and control over the care and support they get. We need the notion that care is not about washing and dressing but about social interaction, communication and being part of the wider community.
We need things like Access to Work, which unfortunately is not working as well as it should at the moment, to give disabled people the support and equipment we need to contribute and fulfil our potential. We need more programmes and services that we have control over and that allow us to flourish.
This is for all ages, but if you think particularly about 18- to 25-year-olds setting out in life and wanting to work, to have a home, a family and to be part of the community, we need to do much more to put tools in their hands and provide support, equipment and assistance to help them forge a future and contribute to society in the way we all want to. You should be able to have that whatever age you are, but I want to focus particularly on younger disabled people, because we live our whole lives with disability and if we are given the right tools at the beginning we can have happy and fulfilled lives.
Lord Laming: Fazilet, that is terrific. We are really grateful.
The Chair: Fazilet, thank you so much for very powerful and incredibly important evidence. I can see why in your very distinguished career you have been so successful in persuading people to change and do things better. I hope that you will stay alongside us.
Fazilet Hadi: I will stay and listen but I will turn off my camera.
The Chair: We have benefited so much from your wisdom that we will keep you alongside us as we go through the final stages of our evidence. Thank you so much.